We extend Christmas every year by going to visit my sisters for a few days after Christmas. I love it!!
I very much enjoy Christmas. I am the mom who would wake up her children on Christmas morning because I couldn't wait any longer. True story. I discovered as the mother of young children the absolute blessing of parenthood in Christmas! How amazing and wonderful to see the excitement and joy in sweet little faces as their eyes lit up when I told them "Santa Claus came!"
Yes, yes, I am Santa Claus. Also the Easter Bunny. This does not make the magic and wonder any less real people!!!
This year has been, you will excuse the vernacular, one HELL of a ride!!
Just under a year ago I mentioned to one sister that I had found a lump in my breast, it was probably nothing and to not even mention it to my other sister because it was PROBABLY nothing and I did not want drama that would come with telling anybody anything about it. No sense in worrying people needlessly, etc., etc.
But OOOPS! It turned out to be QUITE something.
I will write more about the year past on the anniversary of my start of the journey. (Stay tuned in January for that!)
For now, though, I want only to wish any faithful readers -- well, readers whether faithful or otherwise -- and the world at large continued Christmas blessings (hey - it isn't over until Epiphany you heathens!!) and may the New Year coming up bring you much joy.
There are blessings in the worst of times if you seek them. Believe me I know about that!!
love to all
Melanie
Wednesday, December 28, 2011
Saturday, November 26, 2011
Awake, Oh Dreamer, Awake and Live.
I am so blessed.
I could probably write that a number MORE times and not fully express how that feels.
I have a spirit of joy. I could dance around the room inside of myself at that declaration. How many YEARS did I live unaware of that? Way too many. I was weighted down with the living. I was burdened with the sorrows and worries that I bore -- and unaware that inside me was this joy, this bright, shining joy that was a gift from God.
We all have difficulties, burdens, sorrows. We all make mistakes, bad choices, and we fall prey to just plain stupid. Intelligence has nothing to do with it. It's our humanness that just sometimes runs us full in to S-T-U-P-I-D!
I have wallowed in self-pity. I have blindly lashed out at my own frailties by lashing out at others. I have hurt other people.
I have awakened.
I have stepped out of the mud and gloom and darkness that is internal blindness to see that I was making life much harder than it has to be.
While the awakening is a long process, while the healing is itself a painful process, these things strengthen you, they renew you, they enliven you where you thought you were never to awaken, never to heal, never to live, never to pull out of the pool of tears.
I was actually clinically depressed a number of years ago. I had a prescription for anti-depressants, I saw a therapist regularly, I fought the battle all day, every day.
I had these two small sons who needed me, you see. They needed me to be strong, they needed me to keep them from the abyss.
They are grown men now and I am proud of them both. They have their own battles to fight with the darkness and I know I cannot help them. I hope and pray that I have cleared a path for them towards the lightness that is joy. Regardless - their battles are their own as each of us must fight our own way clear.
It may sound a little crazy to say - and it is true, nonetheless - that I think this trip through cancer has been a blessing.
Well, to be more accurate, it has brought me blessings.
One of the blessings it has brought to me has been a strengthened bond with a dear friend, RJ.
RJ has a rare type of cancer herself, and is nearing the end. "The end" - such a simple phrase and perfectly welcome at the end of a story in a book or at the end of a movie.
It is not so welcome when you apply it to life itself. I saw and chatted with RJ yesterday for a while. This was not my first visit with her and I hope it will not have been my last. Each time I have visited her these past few weeks I have feared it would be the last time.
She has fought a valiant and epic battle against her cancer. She has done it with humor and courage and grace.
I told her yesterday how beautiful she was. Her immediate response was no, I'm not beautiful. I had to correct her - I told her she may not feel beautiful, but that is not of the truth.
I won't share about my visit with her - there were some private things discussed between us. So saying, I will tell you and her - I will miss my friend. She knows it is near now. She knows I love her (3 times more) and I know she loves me (again 3 times more) and she is tired.
She has a wonderful loving family - husband and sons, absolutely fabulous daughter-in-love, two sweet grandchildren. She has a strong faith in God - her spirit is unbroken. And she is just about as stubborn as it is possible to be!
She has had to be to get this far! I don't want to say goodbye to her. I don't want her to suffer anymore. And she has suffered, is suffering, and fights on to suffer more because she loves her family and worries about them.
Perhaps, RJ this is the dream. Life is the dream and we will awake when we are done here, THEN we shall live.
Perhaps.
And still I will miss my friend.
I could probably write that a number MORE times and not fully express how that feels.
I have a spirit of joy. I could dance around the room inside of myself at that declaration. How many YEARS did I live unaware of that? Way too many. I was weighted down with the living. I was burdened with the sorrows and worries that I bore -- and unaware that inside me was this joy, this bright, shining joy that was a gift from God.
We all have difficulties, burdens, sorrows. We all make mistakes, bad choices, and we fall prey to just plain stupid. Intelligence has nothing to do with it. It's our humanness that just sometimes runs us full in to S-T-U-P-I-D!
I have wallowed in self-pity. I have blindly lashed out at my own frailties by lashing out at others. I have hurt other people.
I have awakened.
I have stepped out of the mud and gloom and darkness that is internal blindness to see that I was making life much harder than it has to be.
While the awakening is a long process, while the healing is itself a painful process, these things strengthen you, they renew you, they enliven you where you thought you were never to awaken, never to heal, never to live, never to pull out of the pool of tears.
I was actually clinically depressed a number of years ago. I had a prescription for anti-depressants, I saw a therapist regularly, I fought the battle all day, every day.
I had these two small sons who needed me, you see. They needed me to be strong, they needed me to keep them from the abyss.
They are grown men now and I am proud of them both. They have their own battles to fight with the darkness and I know I cannot help them. I hope and pray that I have cleared a path for them towards the lightness that is joy. Regardless - their battles are their own as each of us must fight our own way clear.
It may sound a little crazy to say - and it is true, nonetheless - that I think this trip through cancer has been a blessing.
Well, to be more accurate, it has brought me blessings.
One of the blessings it has brought to me has been a strengthened bond with a dear friend, RJ.
RJ has a rare type of cancer herself, and is nearing the end. "The end" - such a simple phrase and perfectly welcome at the end of a story in a book or at the end of a movie.
It is not so welcome when you apply it to life itself. I saw and chatted with RJ yesterday for a while. This was not my first visit with her and I hope it will not have been my last. Each time I have visited her these past few weeks I have feared it would be the last time.
She has fought a valiant and epic battle against her cancer. She has done it with humor and courage and grace.
I told her yesterday how beautiful she was. Her immediate response was no, I'm not beautiful. I had to correct her - I told her she may not feel beautiful, but that is not of the truth.
I won't share about my visit with her - there were some private things discussed between us. So saying, I will tell you and her - I will miss my friend. She knows it is near now. She knows I love her (3 times more) and I know she loves me (again 3 times more) and she is tired.
She has a wonderful loving family - husband and sons, absolutely fabulous daughter-in-love, two sweet grandchildren. She has a strong faith in God - her spirit is unbroken. And she is just about as stubborn as it is possible to be!
She has had to be to get this far! I don't want to say goodbye to her. I don't want her to suffer anymore. And she has suffered, is suffering, and fights on to suffer more because she loves her family and worries about them.
Perhaps, RJ this is the dream. Life is the dream and we will awake when we are done here, THEN we shall live.
Perhaps.
And still I will miss my friend.
Thursday, November 17, 2011
Box it up and move it out of here!
Cancer, that is.
There are ways in which that is exactly what I have done. In the EARLY days of this, I was given a notebook which held all manner of information about cancer. I read it - which actually rather surprised the patient navigator who came to visit me in the hospital.
This is my body, my very life, and I want to be informed about it. I want and need to be informed about all aspects of my treatment; surgery, chemo, radiation, the rest of my life. I have done so. My computer has a whole bookmark file"Breast Health" and it is loaded with bookmarks.
I had thought I would be all but completely done with everything by now. After all, this process began in January and here it is November.
Reality, however, intrudes its ugly little head into that little fantasy. I cannot likely have any surgery to improve my aspect until a year after radiation. That means that this time NEXT year I may, possibly, perhaps, might be close to done with this step of the ongoing adventure.
I don't really complain about this. I do lament a wee bit that it is the way it goes. I still have to receive Herceptin for an entire year - which means I should be done with that by the end of March, 2012. But perhaps not.
My infarction rate is not quite what it should be. This means we may decide I have to suspend treatment for a few months to give my heart time to recover which means the treatment will then resume as if I had not taken a little break from it, thereby extending past the previously targeted end date.
I have to take Arimidex for probably the rest of my life. That is no big deal. I can certainly live with taking one prescription.
My dexa scan was "almost" normal. I mean a tiny little bit less than it should be for ideal bone health and status. So - exercise, calcium intake increase, eat lots of fruits and vegetables. That doesn't sound bad at all. I have been craving fruits and vegetables - and eating them like mad. My poor husband must surely be tired of the arrival on the table of broccoli and of winter squash.
As much as I would like to box this whole thing up and pack it away to never be seen again, I know that is unrealistic. I need the information that I have literally put in a box under the table in my family room. I may not need all of it right now, but there is information I will need at any given moment therein. Plus - I had put in that box some of the many cards and well wishes I have received over this period of time. And those are dear to me.
I don't want to look at them. I know that is a weird dichotomy - the treasuring of them and the desire to have nothing to do with them.
I'm just a little fatigued, you see. I will gather myself back up and move forward and get to all of the things that had to be laid by the wayside during this task. It is a little overwhelming, though. I had to lay aside so many things. I hope to pick them up again as graciously as possible.
In the end, the only thing that I really want to put in the box is the fatigue and overwhelm. Because I have found so many blessings along the way. I would never wish cancer on any one. ANYone. Yet throughout this journey, because I kept my eyes on God, because I did strive to love God and be called according to His purpose, oh, how He has blessed me.
There are ways in which that is exactly what I have done. In the EARLY days of this, I was given a notebook which held all manner of information about cancer. I read it - which actually rather surprised the patient navigator who came to visit me in the hospital.
This is my body, my very life, and I want to be informed about it. I want and need to be informed about all aspects of my treatment; surgery, chemo, radiation, the rest of my life. I have done so. My computer has a whole bookmark file"Breast Health" and it is loaded with bookmarks.
I had thought I would be all but completely done with everything by now. After all, this process began in January and here it is November.
Reality, however, intrudes its ugly little head into that little fantasy. I cannot likely have any surgery to improve my aspect until a year after radiation. That means that this time NEXT year I may, possibly, perhaps, might be close to done with this step of the ongoing adventure.
I don't really complain about this. I do lament a wee bit that it is the way it goes. I still have to receive Herceptin for an entire year - which means I should be done with that by the end of March, 2012. But perhaps not.
My infarction rate is not quite what it should be. This means we may decide I have to suspend treatment for a few months to give my heart time to recover which means the treatment will then resume as if I had not taken a little break from it, thereby extending past the previously targeted end date.
I have to take Arimidex for probably the rest of my life. That is no big deal. I can certainly live with taking one prescription.
My dexa scan was "almost" normal. I mean a tiny little bit less than it should be for ideal bone health and status. So - exercise, calcium intake increase, eat lots of fruits and vegetables. That doesn't sound bad at all. I have been craving fruits and vegetables - and eating them like mad. My poor husband must surely be tired of the arrival on the table of broccoli and of winter squash.
As much as I would like to box this whole thing up and pack it away to never be seen again, I know that is unrealistic. I need the information that I have literally put in a box under the table in my family room. I may not need all of it right now, but there is information I will need at any given moment therein. Plus - I had put in that box some of the many cards and well wishes I have received over this period of time. And those are dear to me.
I don't want to look at them. I know that is a weird dichotomy - the treasuring of them and the desire to have nothing to do with them.
I'm just a little fatigued, you see. I will gather myself back up and move forward and get to all of the things that had to be laid by the wayside during this task. It is a little overwhelming, though. I had to lay aside so many things. I hope to pick them up again as graciously as possible.
In the end, the only thing that I really want to put in the box is the fatigue and overwhelm. Because I have found so many blessings along the way. I would never wish cancer on any one. ANYone. Yet throughout this journey, because I kept my eyes on God, because I did strive to love God and be called according to His purpose, oh, how He has blessed me.
Monday, October 17, 2011
Graduation
Should I give a commencement address???
Yay me!! Today was my official LAST DAY OF RADIATION!!
My skin looks very good. I saw my lovely Dr. Newman and she commented that most people's skin reaction looks like mine after only 4 weeks. I had 6 weeks of the full area and then six treatments of the incision area only. So 7 weeks of treatment.
This is 1) years of good skin care (no soap, sun protection, moisturization); 2) gentle cleaning this radiation period with a truly mild soap (Neutrogena) and continued good skin care; 3) good genes and; 4) Excellent Luck!!
Okay, maybe add trying to be properly nourished - vitamins, hydration, veggies, etc.
Don't think, however, that means vegetarianism of any variety. Mmmm, I love me some good beef. We went out to a lovely steak dinner to celebrate the end of the chemo cocktails. We did that right BEFORE the final cocktail so I could actually taste and enjoy the meal;p
Now it is time to move on to the next stage of my treatment; further recovery and getting on with my life!
I am not quite ready to go to the "Image Recovery Specialist" - I think I will wait until my skin is actually healed. To be perfectly honest - I can not begin to tell you how much I am enjoying the not having to worry about a bra that I am currently experiencing.
Look - those girls were EVERYWHERE!! I know that loads of ladies claim they want larger busts, talk about enlargement surgeries, etc.
Are you crazy??? They are heavy! You will get furrows in your shoulders from wearing bras to hold up the big girls. The furrows will never, repeat, never go away. You have to worry all the time about things such as "doggone it, is that button popped open AGAIN??!!" and of course a personal favorite of mine - the old "hello, I am about a foot higher and they are not going to talk you!!" syndrome.
Seriously, while I am working on the one hand with the hole in the metaphysical universe, the underlying feeling of loss of femininity, I am conversely SOO enjoying the lightness, the freedom of not having to deal with it!
There are multiple layers to deal with to every single aspect of this journey. Some of them are positive, some of them are not. Regardless - on I go on my continuing journey to thriving post cancer, post bi-lateral mastectomy.
I wrote that on purpose. Sometimes it is hard to think about "bi-lateral mastectomy." Oh, I know full well what it means and what it is. Mostly I am okay with it. It means I have increased my odds of staying alive and healthy on the planet. It just also means I have to deal with a completely different body image than I ever expected to.
I don't mean that to sound like a complaint, and I hope it doesn't. It is not meant as one, rather it is an observation of my life now.
It is what it is and I don't mind that I have to deal with it. Why not me? I would certainly prefer to take it on my own shoulders than to have someone else take it, whether someone I love or even someone I don't love. I have it. The strength, the ability to walk through it. God has blessed me.
Cancer does have blessings it brings.
Yay me!! Today was my official LAST DAY OF RADIATION!!
My skin looks very good. I saw my lovely Dr. Newman and she commented that most people's skin reaction looks like mine after only 4 weeks. I had 6 weeks of the full area and then six treatments of the incision area only. So 7 weeks of treatment.
This is 1) years of good skin care (no soap, sun protection, moisturization); 2) gentle cleaning this radiation period with a truly mild soap (Neutrogena) and continued good skin care; 3) good genes and; 4) Excellent Luck!!
Okay, maybe add trying to be properly nourished - vitamins, hydration, veggies, etc.
Don't think, however, that means vegetarianism of any variety. Mmmm, I love me some good beef. We went out to a lovely steak dinner to celebrate the end of the chemo cocktails. We did that right BEFORE the final cocktail so I could actually taste and enjoy the meal;p
Now it is time to move on to the next stage of my treatment; further recovery and getting on with my life!
I am not quite ready to go to the "Image Recovery Specialist" - I think I will wait until my skin is actually healed. To be perfectly honest - I can not begin to tell you how much I am enjoying the not having to worry about a bra that I am currently experiencing.
Look - those girls were EVERYWHERE!! I know that loads of ladies claim they want larger busts, talk about enlargement surgeries, etc.
Are you crazy??? They are heavy! You will get furrows in your shoulders from wearing bras to hold up the big girls. The furrows will never, repeat, never go away. You have to worry all the time about things such as "doggone it, is that button popped open AGAIN??!!" and of course a personal favorite of mine - the old "hello, I am about a foot higher and they are not going to talk you!!" syndrome.
Seriously, while I am working on the one hand with the hole in the metaphysical universe, the underlying feeling of loss of femininity, I am conversely SOO enjoying the lightness, the freedom of not having to deal with it!
There are multiple layers to deal with to every single aspect of this journey. Some of them are positive, some of them are not. Regardless - on I go on my continuing journey to thriving post cancer, post bi-lateral mastectomy.
I wrote that on purpose. Sometimes it is hard to think about "bi-lateral mastectomy." Oh, I know full well what it means and what it is. Mostly I am okay with it. It means I have increased my odds of staying alive and healthy on the planet. It just also means I have to deal with a completely different body image than I ever expected to.
I don't mean that to sound like a complaint, and I hope it doesn't. It is not meant as one, rather it is an observation of my life now.
It is what it is and I don't mind that I have to deal with it. Why not me? I would certainly prefer to take it on my own shoulders than to have someone else take it, whether someone I love or even someone I don't love. I have it. The strength, the ability to walk through it. God has blessed me.
Cancer does have blessings it brings.
Monday, October 10, 2011
I love Costco
I have finished with the main larger area of radiation. Today I had the first of 6 "boost" radiation exposures which target the incision line specifically.
So good news - the radiation is almost done with (YAY!), the area radiated is smaller, and MOST of it is now behind me.
The not so good news - I broke out in blisters yesterday. Not huge, gigantic blisters, not 100s of blisters, not excruciatingly painful blisters. Blisters, nonetheless.
Fortunately, sweet friend Nell had given me some Mepilex (?) adhesive bandage things. It is Mepilex, I just checked. I wanted to call it Mylar, which I KNOW it is not!
Anyway, it kind of cushions the blisters and should they burst will absorb the liquid and thereby prevent my skin from getting all torn up and painful.
My chest is red and I can feel the heat pouring off of it when I touch it although what it feels like mostly is simply a stinging for the most part. I have areas where it feels stiff inside, if that makes sense to anyone.
I guess the best way I can describe it is this: think of beef jerky. You start with meat that is hydrated and flexible, as was my chest. After time in the smoker or dehydrator, or in my case - after some time of radiation, the product is considerably dryer, still warm from the "oven" and is not so flexible any more. Thus, it feels as if when I raise my arms straight above my head, which I need to do in order to continue to be able to lift them above my head, it is as if the muscles are in need of stretching. Which, of course, is exactly the case. Not because I have not moved my muscles and they have atrophied, but because they have been sort of cooked and are thus stiff and a little tight.
Kind of a gross analogy, but rather accurate.
I generally am feeling quite well. I run out of energy by the end of the day but I have energy in the first place so that is a grand and glorious thing altogether!
My spirits are excellent - Thank you Lord!! I am getting ready to start taking an aromatase inhibitor once I am through with radiation. That would be a hormone regimen to combat a recurrence of my cancer.
Can't say as I am really excited about that but the whole staying alive and healthy thing definitely appeals to me!
When my Dr. told me about the drug he advised me it would cost probably $200 to $300 a month. I checked at my pharmacy of choice. The Doctor's sweet wife works there and she told me she had sent out price comparison requests on a variety of drugs. Yes, at some pharmacies in town two to three HUNDRED is the monthly rate. At my pharmacy of choice it will cost me twenty dollars and some odd cents.
I love Costco.
By the way, if you don't know, one does NOT have to be a Costco member to use their pharmacy. You just tell them at the front when they ask for your member card that you are going to the pharmacy.
So good news - the radiation is almost done with (YAY!), the area radiated is smaller, and MOST of it is now behind me.
The not so good news - I broke out in blisters yesterday. Not huge, gigantic blisters, not 100s of blisters, not excruciatingly painful blisters. Blisters, nonetheless.
Fortunately, sweet friend Nell had given me some Mepilex (?) adhesive bandage things. It is Mepilex, I just checked. I wanted to call it Mylar, which I KNOW it is not!
Anyway, it kind of cushions the blisters and should they burst will absorb the liquid and thereby prevent my skin from getting all torn up and painful.
My chest is red and I can feel the heat pouring off of it when I touch it although what it feels like mostly is simply a stinging for the most part. I have areas where it feels stiff inside, if that makes sense to anyone.
I guess the best way I can describe it is this: think of beef jerky. You start with meat that is hydrated and flexible, as was my chest. After time in the smoker or dehydrator, or in my case - after some time of radiation, the product is considerably dryer, still warm from the "oven" and is not so flexible any more. Thus, it feels as if when I raise my arms straight above my head, which I need to do in order to continue to be able to lift them above my head, it is as if the muscles are in need of stretching. Which, of course, is exactly the case. Not because I have not moved my muscles and they have atrophied, but because they have been sort of cooked and are thus stiff and a little tight.
Kind of a gross analogy, but rather accurate.
I generally am feeling quite well. I run out of energy by the end of the day but I have energy in the first place so that is a grand and glorious thing altogether!
My spirits are excellent - Thank you Lord!! I am getting ready to start taking an aromatase inhibitor once I am through with radiation. That would be a hormone regimen to combat a recurrence of my cancer.
Can't say as I am really excited about that but the whole staying alive and healthy thing definitely appeals to me!
When my Dr. told me about the drug he advised me it would cost probably $200 to $300 a month. I checked at my pharmacy of choice. The Doctor's sweet wife works there and she told me she had sent out price comparison requests on a variety of drugs. Yes, at some pharmacies in town two to three HUNDRED is the monthly rate. At my pharmacy of choice it will cost me twenty dollars and some odd cents.
I love Costco.
By the way, if you don't know, one does NOT have to be a Costco member to use their pharmacy. You just tell them at the front when they ask for your member card that you are going to the pharmacy.
Friday, September 30, 2011
The score is 23 - 5
That is - I have now officially had 23 radiation treatments with only 5 more left to go!!
It is more inconvenience than anything else for me (sorry to be so redundant!) and I am feeling a little bit of a sting now. That Mary Kay Ltd Edition After Sun Replenishing Gel is absolutely fabulous though!! It immediately cools and soothes the sting which is making me very happy, indeed!
Today is my 16th anniversary!
This year has been very difficult. That could probably go without saying. The fact of the matter is, however, that it has brought many blessings with it as well as the hardships.
My favorite blessing - I know absolutely and without question that I hit the jackpot with marrying my husband. I know absolutely that he loves me. And I hope he knows absolutely that I love him.
It is more inconvenience than anything else for me (sorry to be so redundant!) and I am feeling a little bit of a sting now. That Mary Kay Ltd Edition After Sun Replenishing Gel is absolutely fabulous though!! It immediately cools and soothes the sting which is making me very happy, indeed!
Today is my 16th anniversary!
This year has been very difficult. That could probably go without saying. The fact of the matter is, however, that it has brought many blessings with it as well as the hardships.
My favorite blessing - I know absolutely and without question that I hit the jackpot with marrying my husband. I know absolutely that he loves me. And I hope he knows absolutely that I love him.
Wednesday, September 28, 2011
grocery shopping
something I really don't like to do even while I like to do it....
This year has been such a disruption in the grocery shopping process!
I have, indeed, learned that if I don't have a meal plan for the week I go to the store and come home with several half meals, nothing goes together and I have no idea what I am making for dinner!
So I make a weekly meal plan and then I can actually get groceries in that work, I save money by sticking to my plan and list (unless the husband is with me and in a "hey, let's get this" mood, but that is a whole other story) and I know what we are having for dinner!
The problem earlier (as in during chemo) was that I hardly cared what I ate since I couldn't taste it anyway, most things bothered my stomach, and I still needed to put something on the table that Ruben would eat.
Now, so saying, let me say that Ruben will actually eat almost anything you put before him. He may smother it with Tabasco sauce, he may request that it never appear again, but generally he is willing to try anything - once.
The problem is - and I know that surely every wife in the world must face this problem - when asked what he might like to eat this week the answer is usually "Oh, I don't care, dear. Whatever you feel like making."
I hate to tell you this people but they NEVER have that at the store. Had you noticed? Every grocery store I have ever been to is ALWAYS out of "whatever" and "I don't care" -- isn't that your experience too?
I am a fairly good cook and I mostly enjoy the cooking process. I just seem to get in a rut and become able to only think of a few things, a limited and redundant few things to cook. Then when a suggestion is actually made I will get this aversion to it. At least, momentarily. When I do solicit requests, though, they at least will help me springboard to other ideas.
So I signed up for "Food on the Table" for a 3 month period to see if that will help. I know it WILL help plan meals. I just have to direct the contrary streak within me so I can utilize the meal planning service effectively!
I must say that during chemo when so many sweet friends brought meals to us - (some of which I was even able to fully taste!) it was such a blessing! I didn't have to think about what to cook, what to eat, what to buy and I know some really good cooks!!!
Every meal brought to us was an offering of love and kindness and wishes for improved health and I value them more than I can say. Sweet RJ brought paper goods. Genius!!! I would not have thought of that but one does need paper towels and napkins and storage bags and disposable plates and cutlery and such.
I am SO happy to be having this problem!! I cannot begin to properly communicate the absolute JOY of having to figure out what to eat, what to buy, what to cook after having had the chemo induced mindset of "Eat? Really?" I am delighted to no longer be existing on cottage cheese and flour tortillas. I LOVE to taste food again!!
So bring on the menu planning problems!! I can use a service for that and I will let you know how that goes!!
This year has been such a disruption in the grocery shopping process!
I have, indeed, learned that if I don't have a meal plan for the week I go to the store and come home with several half meals, nothing goes together and I have no idea what I am making for dinner!
So I make a weekly meal plan and then I can actually get groceries in that work, I save money by sticking to my plan and list (unless the husband is with me and in a "hey, let's get this" mood, but that is a whole other story) and I know what we are having for dinner!
The problem earlier (as in during chemo) was that I hardly cared what I ate since I couldn't taste it anyway, most things bothered my stomach, and I still needed to put something on the table that Ruben would eat.
Now, so saying, let me say that Ruben will actually eat almost anything you put before him. He may smother it with Tabasco sauce, he may request that it never appear again, but generally he is willing to try anything - once.
The problem is - and I know that surely every wife in the world must face this problem - when asked what he might like to eat this week the answer is usually "Oh, I don't care, dear. Whatever you feel like making."
I hate to tell you this people but they NEVER have that at the store. Had you noticed? Every grocery store I have ever been to is ALWAYS out of "whatever" and "I don't care" -- isn't that your experience too?
I am a fairly good cook and I mostly enjoy the cooking process. I just seem to get in a rut and become able to only think of a few things, a limited and redundant few things to cook. Then when a suggestion is actually made I will get this aversion to it. At least, momentarily. When I do solicit requests, though, they at least will help me springboard to other ideas.
So I signed up for "Food on the Table" for a 3 month period to see if that will help. I know it WILL help plan meals. I just have to direct the contrary streak within me so I can utilize the meal planning service effectively!
I must say that during chemo when so many sweet friends brought meals to us - (some of which I was even able to fully taste!) it was such a blessing! I didn't have to think about what to cook, what to eat, what to buy and I know some really good cooks!!!
Every meal brought to us was an offering of love and kindness and wishes for improved health and I value them more than I can say. Sweet RJ brought paper goods. Genius!!! I would not have thought of that but one does need paper towels and napkins and storage bags and disposable plates and cutlery and such.
I am SO happy to be having this problem!! I cannot begin to properly communicate the absolute JOY of having to figure out what to eat, what to buy, what to cook after having had the chemo induced mindset of "Eat? Really?" I am delighted to no longer be existing on cottage cheese and flour tortillas. I LOVE to taste food again!!
So bring on the menu planning problems!! I can use a service for that and I will let you know how that goes!!
Tuesday, September 27, 2011
The Countdown - 9 to go!
I have had 19 radiation treatments after yesterday afternoon's. NINE to go!!!
I can say that FOR ME - this has been more of an inconvenience than anything else.
My skin is red where I am targeted for radiation. It sometimes stings but truly is not itchy nor is it what I would call painful at all. I am taking very good care of my skin. I use Neutrogena Rain Bath to shower, I pat my skin dry and I am using Mary Kay After Sun Replenishing Gel - which I did run by my doctor and she told me as long as I had no problems with it - go for it. The MK product was a Limited Edition item but I ordered like 7 tubes of it and I have plenty. It immediately cools and soothes and moisturizes so I am good to go.
I know that I am blessed in this state of affairs. It is possible that I will yet develop other side effects. I could blister and peel and such. I just have not.
Fatigue is a side effect that they say most people get. I have been tired since February so - how would I know if I have this side effect? It has sort of become my new normal. Okay, it has become a part of my new normal.
My neck is definitely better. I would rate it at about 80% of what it should be. That is - it still is a little uncomfortable and I watch out for how I move it but I have definitely an increase in my ability to turn my head and it is WAY less painful!!!!
I have to get going with my day - so this brief post is all that you get today!!
I can say that FOR ME - this has been more of an inconvenience than anything else.
My skin is red where I am targeted for radiation. It sometimes stings but truly is not itchy nor is it what I would call painful at all. I am taking very good care of my skin. I use Neutrogena Rain Bath to shower, I pat my skin dry and I am using Mary Kay After Sun Replenishing Gel - which I did run by my doctor and she told me as long as I had no problems with it - go for it. The MK product was a Limited Edition item but I ordered like 7 tubes of it and I have plenty. It immediately cools and soothes and moisturizes so I am good to go.
I know that I am blessed in this state of affairs. It is possible that I will yet develop other side effects. I could blister and peel and such. I just have not.
Fatigue is a side effect that they say most people get. I have been tired since February so - how would I know if I have this side effect? It has sort of become my new normal. Okay, it has become a part of my new normal.
My neck is definitely better. I would rate it at about 80% of what it should be. That is - it still is a little uncomfortable and I watch out for how I move it but I have definitely an increase in my ability to turn my head and it is WAY less painful!!!!
I have to get going with my day - so this brief post is all that you get today!!
Monday, September 19, 2011
13 Down
Radiation treatments, that is.
I am red and sometimes my skin feels sting-y (new word??) - not to be confused with stingy...
I feel a tightness of muscle and skin - but not bad, and I feel the sting occasionally. I am slathering on the lotion to cool and soothe and moisturize my skin. I am doing exercises to keep the muscle able to move over the bones as Marvelous Marilyn the lymphedema specialist advised. My neck is feeling better a bit at a time. I am doing what I can.
I really must say - I feel GREAT!!!
After chemo - this is a piece of cake people!!! Yes, it is painful for my neck while I am undergoing treatment. The fact is - even when it brought me to tears once I was able to move out of the position for radiation -- done. Done with pain, done with discomfort even. YAY!!
So today (Monday the 19th of September) will mark the midway of radiation treatments unless Dr. Newman sees some reason to go for more than the expected 28. I haven't felt much in the way of fatigue, although that is a side effect of radiation that can come later, even after I am done with therapy.
I need to start doing research on what I will take for the next 5 years (okay, according to Moffitt I will need to take it for the rest of my life) because I think it is important to be an informed patient. Plus, I would like minimal side effects.
Please keep my friend Randine in your prayers. Today she starts her chemo - for the second go around - in her ongoing battle against appendix cancer. Having had chemo cocktails the one round - I don't know right now if I could do it again. I think that if I had to I would find the courage, but oh my goodness. Having the knowledge of how bad an experience it is would make it something to fear facing again. So - keep her uplifted, please. Her cancer is a rare and difficult one anyway!
I am red and sometimes my skin feels sting-y (new word??) - not to be confused with stingy...
I feel a tightness of muscle and skin - but not bad, and I feel the sting occasionally. I am slathering on the lotion to cool and soothe and moisturize my skin. I am doing exercises to keep the muscle able to move over the bones as Marvelous Marilyn the lymphedema specialist advised. My neck is feeling better a bit at a time. I am doing what I can.
I really must say - I feel GREAT!!!
After chemo - this is a piece of cake people!!! Yes, it is painful for my neck while I am undergoing treatment. The fact is - even when it brought me to tears once I was able to move out of the position for radiation -- done. Done with pain, done with discomfort even. YAY!!
So today (Monday the 19th of September) will mark the midway of radiation treatments unless Dr. Newman sees some reason to go for more than the expected 28. I haven't felt much in the way of fatigue, although that is a side effect of radiation that can come later, even after I am done with therapy.
I need to start doing research on what I will take for the next 5 years (okay, according to Moffitt I will need to take it for the rest of my life) because I think it is important to be an informed patient. Plus, I would like minimal side effects.
Please keep my friend Randine in your prayers. Today she starts her chemo - for the second go around - in her ongoing battle against appendix cancer. Having had chemo cocktails the one round - I don't know right now if I could do it again. I think that if I had to I would find the courage, but oh my goodness. Having the knowledge of how bad an experience it is would make it something to fear facing again. So - keep her uplifted, please. Her cancer is a rare and difficult one anyway!
Wednesday, September 14, 2011
*#%*@, That Hurt!
Today I went to radiation (treatment # 11) and to be re-marked.
If you recall, I am very colorful now with dots and marks all over me where they target the radiation. It was time to move the marks in order to change the center a little bit. This will minimize the chance of having "cold" spots in the middle of the target, thereby increasing the effectiveness of radiation.
The problem arises because my neck is really bothering me right now. The form that is made at the beginning of this process is to hold you in the correct position to expose the maximum target area. It has no connection to comfort or actual support for your body.
So imagine yourself on a flat metal table - they do provide a form into which or more accurately, onto which you place your legs. This does ease some burden on your back but its true purpose is to help you hold still in the right position. You sit down and swing your legs up onto the table and then you have to find exactly where your head and arms go and lie down. Oops, I forgot. You have to slip your arms out of the "gown" prior to lying down so the techs can move it out of the way in order to radiate.
So there I am with my neck hurting, pulling muscles that do NOT want to be pulled - to the degree that I literally hold my head in my hands to place it in the "rack." I have to turn my head towards the left, away from the focus of the machine, and up a bit while at the same time both arms are raised up above my head and hands folded sort of around each other.
Now if radiation only took as long as radiation actually takes it should be no problem. That is about 2 minutes.
But it ALWAYS takes longer than the actual radiation. First you have to be checked to be absolutely certain you are in the correct position. Then you have to be moved up or down or - oh it's always SOME where - to be ready for the rays.
Today, while I am desperately trying to surrender to the pain - and not really succeeding very well, and then trying to breathe through it, I am getting new marks placed on my chest wall and it is taking sooooome time. And it is hurting, hurting, hurting.
Monday when I had gone in, I must admit my neck was actually much worse than today. I have treated with tylenol and hot packs and breathing and exercises to stretch (gently) and strengthen and actually have met with some success.
Today, though, even with improvement was quite trying. Kathy and Dutch, my radiology techs, really are nice and they try to be quick. However, by dint of my neck not being quite right it is harder to get me in just the right position, then marking, then they had to take pictures and, oh yes - some Doctor had to advise. This was not my doctor today, and I know he was trying to inform and be helpful.
I, however, really felt like saying to him "DUDE!! I understand what is going on, Dutch & Kathy & Dr. Newman have already advised me and I am in pain so could you just hurry the heck up and don't talk to me???? Please??"
Good manners, however - thanks mom - kept me silent and by the time the process was done I was in tears.
I really am not a cry baby and I certainly like to fancy myself stalwart and strong - even in my weakness and vulnerabilities. But I just couldn't keep my eyes from leaking.
I've heard it said that when you offer up your suffering, etc. -- oh you can sure tell my Catholicism there! -- some poor soul benefits. Somebody might have made it to Heaven today.
If you recall, I am very colorful now with dots and marks all over me where they target the radiation. It was time to move the marks in order to change the center a little bit. This will minimize the chance of having "cold" spots in the middle of the target, thereby increasing the effectiveness of radiation.
The problem arises because my neck is really bothering me right now. The form that is made at the beginning of this process is to hold you in the correct position to expose the maximum target area. It has no connection to comfort or actual support for your body.
So imagine yourself on a flat metal table - they do provide a form into which or more accurately, onto which you place your legs. This does ease some burden on your back but its true purpose is to help you hold still in the right position. You sit down and swing your legs up onto the table and then you have to find exactly where your head and arms go and lie down. Oops, I forgot. You have to slip your arms out of the "gown" prior to lying down so the techs can move it out of the way in order to radiate.
So there I am with my neck hurting, pulling muscles that do NOT want to be pulled - to the degree that I literally hold my head in my hands to place it in the "rack." I have to turn my head towards the left, away from the focus of the machine, and up a bit while at the same time both arms are raised up above my head and hands folded sort of around each other.
Now if radiation only took as long as radiation actually takes it should be no problem. That is about 2 minutes.
But it ALWAYS takes longer than the actual radiation. First you have to be checked to be absolutely certain you are in the correct position. Then you have to be moved up or down or - oh it's always SOME where - to be ready for the rays.
Today, while I am desperately trying to surrender to the pain - and not really succeeding very well, and then trying to breathe through it, I am getting new marks placed on my chest wall and it is taking sooooome time. And it is hurting, hurting, hurting.
Monday when I had gone in, I must admit my neck was actually much worse than today. I have treated with tylenol and hot packs and breathing and exercises to stretch (gently) and strengthen and actually have met with some success.
Today, though, even with improvement was quite trying. Kathy and Dutch, my radiology techs, really are nice and they try to be quick. However, by dint of my neck not being quite right it is harder to get me in just the right position, then marking, then they had to take pictures and, oh yes - some Doctor had to advise. This was not my doctor today, and I know he was trying to inform and be helpful.
I, however, really felt like saying to him "DUDE!! I understand what is going on, Dutch & Kathy & Dr. Newman have already advised me and I am in pain so could you just hurry the heck up and don't talk to me???? Please??"
Good manners, however - thanks mom - kept me silent and by the time the process was done I was in tears.
I really am not a cry baby and I certainly like to fancy myself stalwart and strong - even in my weakness and vulnerabilities. But I just couldn't keep my eyes from leaking.
I've heard it said that when you offer up your suffering, etc. -- oh you can sure tell my Catholicism there! -- some poor soul benefits. Somebody might have made it to Heaven today.
Tuesday, September 6, 2011
About That Gauntlet....
OMG!! I did get the call that the Gauntlet was in and I went and bought it.
I am supposed to acclimate to it by starting to wear it in bits at a time. Unfortunately, I can only wear this for MAYBE 30 minutes. At the end of that time, my thumb is NUMB and it is simply way TOO uncomfortable.
I called the fabulous Marilyn, my lymphedema specialist and we discussed the problem. Because I have NOT had a problem yet she did say we could try a size larger (even though small IS the size my hand fits for), but to watch if I do have a problem because the larger size may not be adequate to keep my hand in the right pressure.
The thing is, the gauntlet I bought was $36. The other brand she recommended - in small - costs $50. I have to get another sleeve at $50 AND I will need to get TWO gauntlets as well. So I would prefer to not pay $200 if I can pay only $172 for what I am supposed to wear. (ONLY $172!!)
Now, my sweet little husband was of the mind that I don't really need a gauntlet anyway. I mentioned this to Marilyn who told me the reason I DO want a gauntlet is in the event of a "lymphedema attack," if you will, which is something that sooner or later WILL happen, I will end up with a normal sized arm because I will have been wearing the sleeve and a HUGE BIG SWOLLEN PUFFY lymphedema fat hand. And that once an area becomes congested it takes a L-O-N-G time to decongest an area. I will need to wear the sleeve and gauntlet ANY and every time I get on an airplane, go to a higher elevation (not as in from the 53 foot elevation of my home to the huge elevation of 100 feet, but to the mountains, say Denver... whatever), and when doing repetitive movements such as exercise, lots of typing (OOPS!), etc.
So - today on my list is run by and talk to the people about a different size of gauntlet vs the more expensive BRAND of gauntlet, etc.
The sleeve was not that big a deal to accustom myself to wearing, I am hoping that a different gauntlet will be the same - a relatively minor inconvenience as opposed to PAIN and amputating my thumb!!!
Thus far, I have had four actual radiation treatments and have had no problems. I'll take that!! Mind you, down the road it could - okay probably WILL change. However, after chemo - this will be a much easier experience!!
More later!!
I am supposed to acclimate to it by starting to wear it in bits at a time. Unfortunately, I can only wear this for MAYBE 30 minutes. At the end of that time, my thumb is NUMB and it is simply way TOO uncomfortable.
I called the fabulous Marilyn, my lymphedema specialist and we discussed the problem. Because I have NOT had a problem yet she did say we could try a size larger (even though small IS the size my hand fits for), but to watch if I do have a problem because the larger size may not be adequate to keep my hand in the right pressure.
The thing is, the gauntlet I bought was $36. The other brand she recommended - in small - costs $50. I have to get another sleeve at $50 AND I will need to get TWO gauntlets as well. So I would prefer to not pay $200 if I can pay only $172 for what I am supposed to wear. (ONLY $172!!)
Now, my sweet little husband was of the mind that I don't really need a gauntlet anyway. I mentioned this to Marilyn who told me the reason I DO want a gauntlet is in the event of a "lymphedema attack," if you will, which is something that sooner or later WILL happen, I will end up with a normal sized arm because I will have been wearing the sleeve and a HUGE BIG SWOLLEN PUFFY lymphedema fat hand. And that once an area becomes congested it takes a L-O-N-G time to decongest an area. I will need to wear the sleeve and gauntlet ANY and every time I get on an airplane, go to a higher elevation (not as in from the 53 foot elevation of my home to the huge elevation of 100 feet, but to the mountains, say Denver... whatever), and when doing repetitive movements such as exercise, lots of typing (OOPS!), etc.
So - today on my list is run by and talk to the people about a different size of gauntlet vs the more expensive BRAND of gauntlet, etc.
The sleeve was not that big a deal to accustom myself to wearing, I am hoping that a different gauntlet will be the same - a relatively minor inconvenience as opposed to PAIN and amputating my thumb!!!
Thus far, I have had four actual radiation treatments and have had no problems. I'll take that!! Mind you, down the road it could - okay probably WILL change. However, after chemo - this will be a much easier experience!!
More later!!
Tuesday, August 30, 2011
Gotta Love Color!!
Just a minor update folks!!
I went for radiation yesterday but it was finalizing mapping, not actual radiation treatment. That will begin today.
So not on my Top 10 List of favorite things to do - lying still on a hard metal table in an uncomfortable position would be right up there.
Part of the problem is the whole lying STILL. My head is facing upwards towards the left, both arms are up over my head, the "mold" which was made to help me stay in correct position is not what one would call soft and comfy. Did I mention the table was hard, unyielding metal????
The amusing part of all of this, however, is I felt like I was in some science fiction futuristic alternative universe. Here is this big machine raising me up, moving around me, coming close CLOSE to me, moving back from me, making noises, changing lights, and this is not yet the real deal. Hmm...
They (my royal Radiation Attendants) were working on making sure all the measurements are accurate, entered into the computer accurately and I am sufficiently marked for good templates to be made with which I will then have radiation applied to only the place where it is deemed necessary and such.
To do this, I got more, and more, and more mapping marks. I am now a veritable cool spectrum only rainbow. In addition to the lovely blue marks I already had been mapped with, I now have a rich, royal, and luxurious purple, a turquoise green and then whatever colors result from when these colors overlay each other.
Today I will find out what the "templates" hold in store for me. Then I will go see "Harry Potter, The Deathly Hallows, part 2" - which I have already seen, but my younger son has not and is MOST anxious to see.
So now I will sally forth to don my sleeve ( I have yet to pick up the gauntlet which IS now in stock at the Gauntlet Store) and do all the other things necessary to my daily activities.
The XRT begins...
I went for radiation yesterday but it was finalizing mapping, not actual radiation treatment. That will begin today.
So not on my Top 10 List of favorite things to do - lying still on a hard metal table in an uncomfortable position would be right up there.
Part of the problem is the whole lying STILL. My head is facing upwards towards the left, both arms are up over my head, the "mold" which was made to help me stay in correct position is not what one would call soft and comfy. Did I mention the table was hard, unyielding metal????
The amusing part of all of this, however, is I felt like I was in some science fiction futuristic alternative universe. Here is this big machine raising me up, moving around me, coming close CLOSE to me, moving back from me, making noises, changing lights, and this is not yet the real deal. Hmm...
They (my royal Radiation Attendants) were working on making sure all the measurements are accurate, entered into the computer accurately and I am sufficiently marked for good templates to be made with which I will then have radiation applied to only the place where it is deemed necessary and such.
To do this, I got more, and more, and more mapping marks. I am now a veritable cool spectrum only rainbow. In addition to the lovely blue marks I already had been mapped with, I now have a rich, royal, and luxurious purple, a turquoise green and then whatever colors result from when these colors overlay each other.
Today I will find out what the "templates" hold in store for me. Then I will go see "Harry Potter, The Deathly Hallows, part 2" - which I have already seen, but my younger son has not and is MOST anxious to see.
So now I will sally forth to don my sleeve ( I have yet to pick up the gauntlet which IS now in stock at the Gauntlet Store) and do all the other things necessary to my daily activities.
The XRT begins...
Wednesday, August 24, 2011
Throwing Down the Gauntlet
Tomorrow I have Herceptin infusion. It will have been THREE WEEKS since my last one. YAY me!! I am enjoying not having to go every week. I am feeling a LITTLE anxious about going tomorrow, but nothing near that "Thursday Phobia" I had when I was undergoing the chemo cocktail and the weekly infusion of H. Very happy to not be afraid of any day.
Dr. Newman, my radiation oncologist, had referred me to a Lymphedema specialist, therapist. She has like this 10 week waiting list!! However, I got a call yesterday that she had had a cancellation, could I come in Wednesday at 9 am? You bet!! So Ruben -- my faithful sidekick -- and I went there this AM. She was quite nice and we had some fun with her and I was prescribed a compression sleeve and a gauntlet. (Thus the name of the post. After all, don't you just love that - a gauntlet, I do.) I have some new and exciting information to process, some new procedures to manage lymphedema, which, admittedly, I have really NOT had much of a problem with, but which will likely be exacerbated by radiation and I now am equipped to deal with it for life.
Unfortunately, when I went to pick up the sleeve and gauntlet they only had the sleeve I need in stock. I'll have to wait a while for them to get the gauntlet in stock.
Okay, it's probably just me - this whole delight in having a "gauntlet" - it's the romance of such an old word, don't you know. Can you not see me in "lady of the manor" clothing with absolutely Robin Hood clothing??? Only clean. With indoor plumbing, central heat and air, all the modern amenities...
My hair is definitely coming in!!! I can see color now where before it was like baby fuzz, and it definitely is growing. The upside of having no hair - I haven't had to shampoo, condition, or even comb my hair AT ALL for months now. Plus - the bonus of it is much cooler!!!
At the lymphedema therapist's this morning it was really quite warm. I was able to take off my hat and headband and feel a bit cooler. Ruben and Marilyn had to keep their hair on. Well, you better find humor where you can, people!!!
I am actually feeling really quite good!! I can taste again, I am actually hungry again as opposed to merely obsessed with the idea of food, I do get fatigued, but - oh well!
I am so blessed, so grateful for the blessings and I am happy to greet each day.
I wish the same for each of you - only without having to go through this mess!!!!
Dr. Newman, my radiation oncologist, had referred me to a Lymphedema specialist, therapist. She has like this 10 week waiting list!! However, I got a call yesterday that she had had a cancellation, could I come in Wednesday at 9 am? You bet!! So Ruben -- my faithful sidekick -- and I went there this AM. She was quite nice and we had some fun with her and I was prescribed a compression sleeve and a gauntlet. (Thus the name of the post. After all, don't you just love that - a gauntlet, I do.) I have some new and exciting information to process, some new procedures to manage lymphedema, which, admittedly, I have really NOT had much of a problem with, but which will likely be exacerbated by radiation and I now am equipped to deal with it for life.
Unfortunately, when I went to pick up the sleeve and gauntlet they only had the sleeve I need in stock. I'll have to wait a while for them to get the gauntlet in stock.
Okay, it's probably just me - this whole delight in having a "gauntlet" - it's the romance of such an old word, don't you know. Can you not see me in "lady of the manor" clothing with absolutely Robin Hood clothing??? Only clean. With indoor plumbing, central heat and air, all the modern amenities...
My hair is definitely coming in!!! I can see color now where before it was like baby fuzz, and it definitely is growing. The upside of having no hair - I haven't had to shampoo, condition, or even comb my hair AT ALL for months now. Plus - the bonus of it is much cooler!!!
At the lymphedema therapist's this morning it was really quite warm. I was able to take off my hat and headband and feel a bit cooler. Ruben and Marilyn had to keep their hair on. Well, you better find humor where you can, people!!!
I am actually feeling really quite good!! I can taste again, I am actually hungry again as opposed to merely obsessed with the idea of food, I do get fatigued, but - oh well!
I am so blessed, so grateful for the blessings and I am happy to greet each day.
I wish the same for each of you - only without having to go through this mess!!!!
Thursday, August 18, 2011
A New Map of the World
well, sort of....
My life has been dictated by medical issues this entire year. Just the fact. So last week we took a much needed break and took a short trip to New Orleans to visit my uncle and aunt.
They were so cute - they were worried that Ruben and I were probably "bored hanging out with the old folks." We actually had a very nice visit and we had fun. They are interesting, funny, kind people. My uncle at 83 is really a very good driver. Does that sound scary? To have an 83 year old drive you around and into N.O. proper? Well, take a deep, calming breath people!! He is seriously an alert driver with very good reflexes and consciousness of other driver and their foibles.
We visited the World War II museum, we went antiquing (oh, I found a FABULOUS hat that my sweet husband bought for me), we went to the Abita Springs Brewery, we visited my 2 cousins, we ate like kings and queens and we R-E-L-A-X-E-D!!!
It was great. I really needed to just get away and unwind for a bit. And we laughed a lot. I must tell you, Ruben is a huge Dallas Cowboys fan and my little firecracker aunt Jo is totally ready to poke fun at him for that. We were talking Saturday morning (after {who dat?} the Saints kicked butt in their first pre-season game) and she casually mentioned that, yes, The Saints had played pretty well and had a good margin of victory unlike the Cowboys who just eked by the Broncos. I started laughing immediately and it took Ruben just a moment to realize he had been dissed. He cracked up too. As much as he dishes out, he is certainly able to take it. He just had not expected aunt Jo to dish on him... very funny, indeed.
Before we left last week, I had an appointment with my Radiation Oncologist, Dr. Newman. We both liked her very much. She is personable (which always helps) and very thorough. After she came in and spoke to me she asked me if I had any questions. She was SO thorough, though, that she had addressed any questions I had at that time. I did reserve the right to come up with more - you don't know what you don't know until you find out you didn't know something.....
She did advise me that I am healthier than most of the people who work in the building! Once I start taking the tamoxifen or WHATEVER pill I will have to take the rest of my life that will be my only prescription! Go Melanie!!
So - we had set up an appointment, which I had yesterday, for "mapping." I am now mapped and marked. In a teal blue. No tattoos (yay!!), just permanent marker - which WILL fade away and have to be re-marked. And I have my own personalized "form" which will hold me in the proper position for radiation.
They wanted to start me next Thursday. Uh-oh. I have a Herceptin infusion that day. At 10:30, which was when they wanted me to begin radiation, and the infusion will take about 3 hours. So Radiation will begin the following week. I will go on Monday for a "dry run" and to talk to Dr. Newman, then Tuesday will be the first of the "real deal" appointments and I will be able to set up appointment times. I should have no problem setting them for my convenience. The people I met yesterday, Sam (what a cutie he was) and Brandy were very nice.
The radiation treatment proper will take only a few minutes. However - I will have 6 1/2 weeks - or 28 (or more if necessary) of radiation. Monday through Friday. I'll just have to plan what I will come in to town to do in addition to radiation since you just don't go all the way in to town for just one thing when you live out as far as we do, not with gas as pricey as it is!! And besides which, it will take longer to get there than the appointment will take!!!
I can expect to get fatigued (nothing new there compared to chemo!) and possibly burned, but all in all - this will be a cake walk compared to chemo. I say that now! Really, I do know it will not be anything like this first part has been, and I am happy as a clam to not be in a box, you know???
So - my journey continues, and I am quite happy to say so!!
My life has been dictated by medical issues this entire year. Just the fact. So last week we took a much needed break and took a short trip to New Orleans to visit my uncle and aunt.
They were so cute - they were worried that Ruben and I were probably "bored hanging out with the old folks." We actually had a very nice visit and we had fun. They are interesting, funny, kind people. My uncle at 83 is really a very good driver. Does that sound scary? To have an 83 year old drive you around and into N.O. proper? Well, take a deep, calming breath people!! He is seriously an alert driver with very good reflexes and consciousness of other driver and their foibles.
We visited the World War II museum, we went antiquing (oh, I found a FABULOUS hat that my sweet husband bought for me), we went to the Abita Springs Brewery, we visited my 2 cousins, we ate like kings and queens and we R-E-L-A-X-E-D!!!
It was great. I really needed to just get away and unwind for a bit. And we laughed a lot. I must tell you, Ruben is a huge Dallas Cowboys fan and my little firecracker aunt Jo is totally ready to poke fun at him for that. We were talking Saturday morning (after {who dat?} the Saints kicked butt in their first pre-season game) and she casually mentioned that, yes, The Saints had played pretty well and had a good margin of victory unlike the Cowboys who just eked by the Broncos. I started laughing immediately and it took Ruben just a moment to realize he had been dissed. He cracked up too. As much as he dishes out, he is certainly able to take it. He just had not expected aunt Jo to dish on him... very funny, indeed.
Before we left last week, I had an appointment with my Radiation Oncologist, Dr. Newman. We both liked her very much. She is personable (which always helps) and very thorough. After she came in and spoke to me she asked me if I had any questions. She was SO thorough, though, that she had addressed any questions I had at that time. I did reserve the right to come up with more - you don't know what you don't know until you find out you didn't know something.....
She did advise me that I am healthier than most of the people who work in the building! Once I start taking the tamoxifen or WHATEVER pill I will have to take the rest of my life that will be my only prescription! Go Melanie!!
So - we had set up an appointment, which I had yesterday, for "mapping." I am now mapped and marked. In a teal blue. No tattoos (yay!!), just permanent marker - which WILL fade away and have to be re-marked. And I have my own personalized "form" which will hold me in the proper position for radiation.
They wanted to start me next Thursday. Uh-oh. I have a Herceptin infusion that day. At 10:30, which was when they wanted me to begin radiation, and the infusion will take about 3 hours. So Radiation will begin the following week. I will go on Monday for a "dry run" and to talk to Dr. Newman, then Tuesday will be the first of the "real deal" appointments and I will be able to set up appointment times. I should have no problem setting them for my convenience. The people I met yesterday, Sam (what a cutie he was) and Brandy were very nice.
The radiation treatment proper will take only a few minutes. However - I will have 6 1/2 weeks - or 28 (or more if necessary) of radiation. Monday through Friday. I'll just have to plan what I will come in to town to do in addition to radiation since you just don't go all the way in to town for just one thing when you live out as far as we do, not with gas as pricey as it is!! And besides which, it will take longer to get there than the appointment will take!!!
I can expect to get fatigued (nothing new there compared to chemo!) and possibly burned, but all in all - this will be a cake walk compared to chemo. I say that now! Really, I do know it will not be anything like this first part has been, and I am happy as a clam to not be in a box, you know???
So - my journey continues, and I am quite happy to say so!!
Monday, July 25, 2011
How to Lose 10 Pounds in 2 Days
It's quick! It's easy! You, too, can lose 10 pounds or more in 2 to 3 days!!
Oh, wait.
I lied. It is quick, but it is not easy. And it is really not something I would recommend to anyone!!!
It's called Chemo!!
Well, that is a sort of depressing start, isn't it, now? So, to go to positive -- as is my nature -- I will change my tack now.
I had my final chemo - round 6 - on Thursday July 21. 2011. HALLELUJAH!!!
The usual MO for chemo has been I feel okay on Thursday and mostly okay on Friday but by Saturday. No, no. Well, with round 5 AND this round 6 I felt okay (that's at best) on Thursday and part of Friday....
Friday evening - oh great - it is output only, shall we say. There is almost nothing going in. Certainly there is nothing going in that is not going to come right back out in the wrong direction. >Sigh<
At any rate, by Saturday evening on this round I was able to get a little bit in and just feel miserable. I had, by Saturday morning, however, thrown up enough that my throat felt like acid had been poured down it. Oh wait!! That's wrong!! Acid had been thrown UP my throat!! I asked my sweet husband if he would kindly go get me some Chlora-septic spray. Which, naturally, he happily did for me. Attempting a warm salt-water gargle did NOTHING except attempt to provoke more regurgitation - well brushing my teeth does that too. I am hyper sensitized at this time... The Chlora-septic did help some. Some. Mostly it is now just a matter of letting time heal and eating and drinking mild and soft items. I ate one half of a banana this morning and it was all I could do to swallow it, as it was too "hard," so later I made a nice soft scrambled egg.
And!!! YAY!! That was the last Friday evening I will spend dumping my lunch out the wrong way. And the last Friday night I will spend dumping what little I could get down for 'supper' and the last time I will feel that bad!! YAY YAY YAY YAY YAY!!!
I still feel somewhat weak, very fatigued, and at the same time I feel so jubilant to be finished with this part of the process!!
I had a MUGa exam (heart volume test) Tuesday before chemo and it was the same results as the first one I had in March. This is good news. It means the herceptin, the drug I must take for a year and which can destroy heart muscle - temporarily - has not done me any harm to date. Dr. Rassam has advised me that should the next test not be good enough volume wise in his estimation, that we would take a hiatus from herceptin to allow my heart to recover and then restart, as many times as necessary.
Now I am going to take a LITTLE break before I start radiation.
I know there is plenty left ahead of me on this ugly journey. I have radiation, I have the hormone treatment, I have some sort of surgery to smooth out and improve my physical appearance, I have to go to the "image recovery specialist", I need to go to some support group because there are SO many issues related to this cancer that you simply cannot begin to wrap your head around them all. I know that the treatment requiring one to 3 week visits to Dr. Rassam will not be over until what, April of next year.
I do intend to celebrate. Publicly! Maybe with a dance! And absolutely with food. Because I will be able to live in food reality that is not based merely on theory. I will be able to actually taste and enjoy everything again. I mean, come on, when applesauce and tapioca are about as far as you can go.... yeah, that is living in food theory. Perhaps more accurately, it is living in hopes of food theory becoming food reality!!
This week - I hope to go for scallops. Yum
Oh, wait.
I lied. It is quick, but it is not easy. And it is really not something I would recommend to anyone!!!
It's called Chemo!!
Well, that is a sort of depressing start, isn't it, now? So, to go to positive -- as is my nature -- I will change my tack now.
I had my final chemo - round 6 - on Thursday July 21. 2011. HALLELUJAH!!!
The usual MO for chemo has been I feel okay on Thursday and mostly okay on Friday but by Saturday. No, no. Well, with round 5 AND this round 6 I felt okay (that's at best) on Thursday and part of Friday....
Friday evening - oh great - it is output only, shall we say. There is almost nothing going in. Certainly there is nothing going in that is not going to come right back out in the wrong direction. >Sigh<
At any rate, by Saturday evening on this round I was able to get a little bit in and just feel miserable. I had, by Saturday morning, however, thrown up enough that my throat felt like acid had been poured down it. Oh wait!! That's wrong!! Acid had been thrown UP my throat!! I asked my sweet husband if he would kindly go get me some Chlora-septic spray. Which, naturally, he happily did for me. Attempting a warm salt-water gargle did NOTHING except attempt to provoke more regurgitation - well brushing my teeth does that too. I am hyper sensitized at this time... The Chlora-septic did help some. Some. Mostly it is now just a matter of letting time heal and eating and drinking mild and soft items. I ate one half of a banana this morning and it was all I could do to swallow it, as it was too "hard," so later I made a nice soft scrambled egg.
And!!! YAY!! That was the last Friday evening I will spend dumping my lunch out the wrong way. And the last Friday night I will spend dumping what little I could get down for 'supper' and the last time I will feel that bad!! YAY YAY YAY YAY YAY!!!
I still feel somewhat weak, very fatigued, and at the same time I feel so jubilant to be finished with this part of the process!!
I had a MUGa exam (heart volume test) Tuesday before chemo and it was the same results as the first one I had in March. This is good news. It means the herceptin, the drug I must take for a year and which can destroy heart muscle - temporarily - has not done me any harm to date. Dr. Rassam has advised me that should the next test not be good enough volume wise in his estimation, that we would take a hiatus from herceptin to allow my heart to recover and then restart, as many times as necessary.
Now I am going to take a LITTLE break before I start radiation.
I know there is plenty left ahead of me on this ugly journey. I have radiation, I have the hormone treatment, I have some sort of surgery to smooth out and improve my physical appearance, I have to go to the "image recovery specialist", I need to go to some support group because there are SO many issues related to this cancer that you simply cannot begin to wrap your head around them all. I know that the treatment requiring one to 3 week visits to Dr. Rassam will not be over until what, April of next year.
I do intend to celebrate. Publicly! Maybe with a dance! And absolutely with food. Because I will be able to live in food reality that is not based merely on theory. I will be able to actually taste and enjoy everything again. I mean, come on, when applesauce and tapioca are about as far as you can go.... yeah, that is living in food theory. Perhaps more accurately, it is living in hopes of food theory becoming food reality!!
This week - I hope to go for scallops. Yum
Monday, July 11, 2011
July 8, 2011 from July 10, 2010
2nd Battalion, 327th Infantry Regiment, 1st Brigade Combat Team, 101st Airborne Division was what my younger son served with for two tours of duty in Operation Iraqi Freedom. He was a Bravo Bayonet. My nephew now serves in Afghanistan with almost exactly the same designators. Sadly, he is a Delta Demon. (Just kidding Jamie!)
Kidding aside, these young man are getting hammered and have suffered woundings and deaths. One of the young men who was recently killed was PFC Anthony Simmons. He was a young man who was from here in Tallahassee, and it was my honor to attend his funeral to represent my family, to offer what support I could to his mother, his brother - who also serves with 2/327, and his other family members.
8 July, 2011
It has been a year, today, since Anthony Simmons was killed.
I had initially started this post, as you see, last year on the day of his funeral. Something made me wait until now.
While this post is to honor and remember young Anthony, it is even more specifically to offer support and honor to his mother, Renee.
Renee is a member of a rather elite club to which NO ONE wants to belong, she is a Gold Star Mother.
I served as a Blue Star mother and I recall only too well, the harrowing pain and worry one carries for their child on deployment to war.
You think you can understand because you are a mother what it would be like. I thought that too. Until my son deployed to Operation Iraqi Freedom, now known as OIF 1. You have absolutely no idea what it is like, I promise you, until you live it personally. And it is hellacious.
Thus I know that I cannot begin to imagine what this has been like for Renee, what this continues to be like for her. I do not mean to minimize the sorrow or pain of any other family member, please understand. I single out the mother because that is a singular relationship.
There is a special bond between mother and son (sons) that I had never known about as a daughter. I have absolute confidence my sons would walk through fire for me, as I would for them. I am sure this is the case for Renee and Anthony and Nicholas as well.
I cannot begin to fathom how the strength is found to carry on when you hear your son is lost to this world. As a mom, I can tell you that you see your son, the grown man, the soldier, and you see at the same time that sweet little 3 year old who tells you you are the" bestest mommy ever" and how much he loves you. And you know that that 3 year old who you picked up when he fell and kissed his worries away and laughed with and hugged and tickled and turned into a human airplane for his entertainment is right there in front of you in the grown man. And now the eternity of him is gone.
Forever.
And his birthday comes. And Thanksgiving. Christmas. Easter. Family events. And you have to cope and go on. Surely just a morning, just any ordinary morning is hard enough to bear and you have to endure them all and every special moment too.
I think, Renee, that you have found how to become a warrior goddess among women. I think it was required of you and you didn't want to do it - who in God's green earth would? - and you picked yourself up morning and took a step, as you had to. Some days, I would bet you had to pick yourself up many, many times.
You, too, are a hero because of this.
I was proud of my city, our city of Tallahassee on that day almost a year ago. I was proud of how Rolling Thunder stood honor guard at the church, both the evening before and the day of the funeral. I was proud for you how you stood and opened yourself to kindness - from friends and family and from strangers as well, for I came to offer respect and kindness on behalf of my family and was, myself, a stranger to you.
After the funeral, I was proud of so many citizens of our city who stopped their cars and got out to bow their heads, of homeowners who came out with flags as the cortege passed. I was proud of the fact that for this miles long funeral procession, the Interstate was closed off to other traffic. Both directions. To give honor to a young hero, the Interstate was closed off to non-procession traffic. The Rolling Thunder, the Firefighters, police, sheriff deputies, emergency workers who stood to honor this stricken family in the heat of July in Tallahassee, what pride in honor they showed. I was proud of our city when, as we got off the Interstate, the sidewalks and street sides were filled with people holding flags, offering their condolences and making their efforts to extend honor to our military in general as well as to this family, this soldier in particular on his last ride. As we turned up towards the cemetery, people in this neighborhood, too had their flags and many stood in front of their homes to offer what they could.
The cemetery was packed.
PACKED.
So many people wanted to offer kindness, courtesy, sympathy, honor to you, Anthony and to your family.
I was proud of our city that day.
I know, Renee, that you must also have been proud of Tallahassee doing honor to your son.
We honor you, Renee. You have walked a whole year now with this bitter sweetness. That your son Anthony is not here and yet he is. You have shown so many people how to keep walking, keep fighting, keep your head up and keep moving.
My heart keeps empathy for you. I'm proud of YOU, Renee. And I am willing to bet that laughing from somewhere we cannot hear, cannot see, is Anthony -- saying with great pride "That is MY mom."
God bless.
Kidding aside, these young man are getting hammered and have suffered woundings and deaths. One of the young men who was recently killed was PFC Anthony Simmons. He was a young man who was from here in Tallahassee, and it was my honor to attend his funeral to represent my family, to offer what support I could to his mother, his brother - who also serves with 2/327, and his other family members.
8 July, 2011
It has been a year, today, since Anthony Simmons was killed.
I had initially started this post, as you see, last year on the day of his funeral. Something made me wait until now.
While this post is to honor and remember young Anthony, it is even more specifically to offer support and honor to his mother, Renee.
Renee is a member of a rather elite club to which NO ONE wants to belong, she is a Gold Star Mother.
I served as a Blue Star mother and I recall only too well, the harrowing pain and worry one carries for their child on deployment to war.
You think you can understand because you are a mother what it would be like. I thought that too. Until my son deployed to Operation Iraqi Freedom, now known as OIF 1. You have absolutely no idea what it is like, I promise you, until you live it personally. And it is hellacious.
Thus I know that I cannot begin to imagine what this has been like for Renee, what this continues to be like for her. I do not mean to minimize the sorrow or pain of any other family member, please understand. I single out the mother because that is a singular relationship.
There is a special bond between mother and son (sons) that I had never known about as a daughter. I have absolute confidence my sons would walk through fire for me, as I would for them. I am sure this is the case for Renee and Anthony and Nicholas as well.
I cannot begin to fathom how the strength is found to carry on when you hear your son is lost to this world. As a mom, I can tell you that you see your son, the grown man, the soldier, and you see at the same time that sweet little 3 year old who tells you you are the" bestest mommy ever" and how much he loves you. And you know that that 3 year old who you picked up when he fell and kissed his worries away and laughed with and hugged and tickled and turned into a human airplane for his entertainment is right there in front of you in the grown man. And now the eternity of him is gone.
Forever.
And his birthday comes. And Thanksgiving. Christmas. Easter. Family events. And you have to cope and go on. Surely just a morning, just any ordinary morning is hard enough to bear and you have to endure them all and every special moment too.
I think, Renee, that you have found how to become a warrior goddess among women. I think it was required of you and you didn't want to do it - who in God's green earth would? - and you picked yourself up morning and took a step, as you had to. Some days, I would bet you had to pick yourself up many, many times.
You, too, are a hero because of this.
I was proud of my city, our city of Tallahassee on that day almost a year ago. I was proud of how Rolling Thunder stood honor guard at the church, both the evening before and the day of the funeral. I was proud for you how you stood and opened yourself to kindness - from friends and family and from strangers as well, for I came to offer respect and kindness on behalf of my family and was, myself, a stranger to you.
After the funeral, I was proud of so many citizens of our city who stopped their cars and got out to bow their heads, of homeowners who came out with flags as the cortege passed. I was proud of the fact that for this miles long funeral procession, the Interstate was closed off to other traffic. Both directions. To give honor to a young hero, the Interstate was closed off to non-procession traffic. The Rolling Thunder, the Firefighters, police, sheriff deputies, emergency workers who stood to honor this stricken family in the heat of July in Tallahassee, what pride in honor they showed. I was proud of our city when, as we got off the Interstate, the sidewalks and street sides were filled with people holding flags, offering their condolences and making their efforts to extend honor to our military in general as well as to this family, this soldier in particular on his last ride. As we turned up towards the cemetery, people in this neighborhood, too had their flags and many stood in front of their homes to offer what they could.
The cemetery was packed.
PACKED.
So many people wanted to offer kindness, courtesy, sympathy, honor to you, Anthony and to your family.
I was proud of our city that day.
I know, Renee, that you must also have been proud of Tallahassee doing honor to your son.
We honor you, Renee. You have walked a whole year now with this bitter sweetness. That your son Anthony is not here and yet he is. You have shown so many people how to keep walking, keep fighting, keep your head up and keep moving.
My heart keeps empathy for you. I'm proud of YOU, Renee. And I am willing to bet that laughing from somewhere we cannot hear, cannot see, is Anthony -- saying with great pride "That is MY mom."
God bless.
Tuesday, July 5, 2011
Tuesday after Round 5
Oh man.
This round was really rough.
First of all, let me allay the worries I inadvertently put on a dear friend's heart with a post I had that mentioned (I think it was my insomnia post) preparing for the end... I have a positive and WILL KICK THIS THING attitude, I promise you. So saying, I know I am nearer the end than the beginning and having lost my own dear parents, I know it is a wonderful gift to leave your loved ones that your things are in order. And I believe it will be a gift to myself to have my things in order as well. I intend to stick around for quite some time..
Back to roughness....
I did eject most violently Friday evening, what little I had input on Saturday and the almost nothing I took in on Sunday - and more than that. To the point I called the Doctor on Sunday. I am really not a big cry baby, as I think most who know me are aware. In fact, when I felt so so horrible on Sunday and was talking to my sister she had to lecture me about not waiting to ask for help until I had to be hospitalized. Oh, yeah, that is a family trait - "I'm fine, I'll be fine in just a minute, not to worry." Ha!!
So I did get hold of my doctor who advised me to be sure to NOT allow myself to dehydrate and if I didn't eat to not worry too much about that for then - just pour in Gator Ade or Power Ade and if better the next day try only mild things like chicken soup. Which did help.
Whoo- hoo - Chicken soup for Independence Day celebration. Ha ha ha ha. It IS kind of funny, you know it is. That is also why we cooked out LAST weekend!
So for me, how do I know it is really, really bad? When my own saliva makes me want to eject.
Oh, yeah. Gross, I know, but there it is.
Definitely feeling better today. Saturday was the pits, Sunday was the pits. In fact, on Sunday Ruben ran out to Wally world to get me gator ade and chicken soup after I spoke with the doctor. He has been so awesome, my rock and my support. I don't know how I would have done without him by my side.
Dr. Rassam advised me that this is the cumulative effect of chemo and that the next round may be even worse.
Oh joy.
I cannot look at that right now. I have 2 weeks of improvement and I am going to focus on and enjoy each and every moment of that time - and take the Xanax before Herceptin infusions!!
Today I got up had a cup of tea (which oh, how I long for a good cup of joe!) and a banana, got viciously attacked by my cat - thank goodness I had my robe on!; then after I let my stomach tell me it was okay I scrambled up a migas breakfast (corn tortilla cut up and cooked then add scrambled egg) and 1/2 of an avocado. I did eat the avocado half but couldn't finish the egg mixture. It was tasty but I just don't seem to be able to eat as much - well there is a blessing!! - and because I had felt so queasy for so long, I figure it will be far wiser to under eat than even eat enough!
I slept very ill last night, but then I will sleep well for the next couple of nights so that is okay too.
My sweet friend Fran came to visit yesterday and brought me some spaghetti sauce which now awaits me in the freezer. It was so nice to see her and have a chat.
I must thank everyone who has been so very kind! Cards and visits and meals and most especially prayers from around the world.
My wind chimes, which I am so enamored of, bring to mind the lesson of both wind chimes and prayers. I always carefully check a wind chime before purchase. No clunkety-clunk, no tinny ugliness for my wind chimes. They must be a sound of pure musicality and loveliness. They resonate on the air as if they were a fragrance left behind by fresh, lovely flowers. I have 2 on my front porch, and 3 on my back porch. Each time I pass them I chime them so as to hear them first ringing brightly then lingering on the air, sweet reminders of the sound they make reluctant to leave their presence unremembered. Those are what prayers are like to me, as well. And my sweet friends and family who pray for me, you lift my name up before God Almighty and keep it there, sweetly lingering in His presence, a loving reminder for His blessings to pour on me, to heal me, to calm and strengthen me, to lift me to His Blessed presence.
Please keep praying for me, I do value it and feel it. I am ever grateful for your kind prayers.
And I pray for you each in return, lifting you in song like melody to shimmer in the air before the eyes of the Almighty.
love to all
This round was really rough.
First of all, let me allay the worries I inadvertently put on a dear friend's heart with a post I had that mentioned (I think it was my insomnia post) preparing for the end... I have a positive and WILL KICK THIS THING attitude, I promise you. So saying, I know I am nearer the end than the beginning and having lost my own dear parents, I know it is a wonderful gift to leave your loved ones that your things are in order. And I believe it will be a gift to myself to have my things in order as well. I intend to stick around for quite some time..
Back to roughness....
I did eject most violently Friday evening, what little I had input on Saturday and the almost nothing I took in on Sunday - and more than that. To the point I called the Doctor on Sunday. I am really not a big cry baby, as I think most who know me are aware. In fact, when I felt so so horrible on Sunday and was talking to my sister she had to lecture me about not waiting to ask for help until I had to be hospitalized. Oh, yeah, that is a family trait - "I'm fine, I'll be fine in just a minute, not to worry." Ha!!
So I did get hold of my doctor who advised me to be sure to NOT allow myself to dehydrate and if I didn't eat to not worry too much about that for then - just pour in Gator Ade or Power Ade and if better the next day try only mild things like chicken soup. Which did help.
Whoo- hoo - Chicken soup for Independence Day celebration. Ha ha ha ha. It IS kind of funny, you know it is. That is also why we cooked out LAST weekend!
So for me, how do I know it is really, really bad? When my own saliva makes me want to eject.
Oh, yeah. Gross, I know, but there it is.
Definitely feeling better today. Saturday was the pits, Sunday was the pits. In fact, on Sunday Ruben ran out to Wally world to get me gator ade and chicken soup after I spoke with the doctor. He has been so awesome, my rock and my support. I don't know how I would have done without him by my side.
Dr. Rassam advised me that this is the cumulative effect of chemo and that the next round may be even worse.
Oh joy.
I cannot look at that right now. I have 2 weeks of improvement and I am going to focus on and enjoy each and every moment of that time - and take the Xanax before Herceptin infusions!!
Today I got up had a cup of tea (which oh, how I long for a good cup of joe!) and a banana, got viciously attacked by my cat - thank goodness I had my robe on!; then after I let my stomach tell me it was okay I scrambled up a migas breakfast (corn tortilla cut up and cooked then add scrambled egg) and 1/2 of an avocado. I did eat the avocado half but couldn't finish the egg mixture. It was tasty but I just don't seem to be able to eat as much - well there is a blessing!! - and because I had felt so queasy for so long, I figure it will be far wiser to under eat than even eat enough!
I slept very ill last night, but then I will sleep well for the next couple of nights so that is okay too.
My sweet friend Fran came to visit yesterday and brought me some spaghetti sauce which now awaits me in the freezer. It was so nice to see her and have a chat.
I must thank everyone who has been so very kind! Cards and visits and meals and most especially prayers from around the world.
My wind chimes, which I am so enamored of, bring to mind the lesson of both wind chimes and prayers. I always carefully check a wind chime before purchase. No clunkety-clunk, no tinny ugliness for my wind chimes. They must be a sound of pure musicality and loveliness. They resonate on the air as if they were a fragrance left behind by fresh, lovely flowers. I have 2 on my front porch, and 3 on my back porch. Each time I pass them I chime them so as to hear them first ringing brightly then lingering on the air, sweet reminders of the sound they make reluctant to leave their presence unremembered. Those are what prayers are like to me, as well. And my sweet friends and family who pray for me, you lift my name up before God Almighty and keep it there, sweetly lingering in His presence, a loving reminder for His blessings to pour on me, to heal me, to calm and strengthen me, to lift me to His Blessed presence.
Please keep praying for me, I do value it and feel it. I am ever grateful for your kind prayers.
And I pray for you each in return, lifting you in song like melody to shimmer in the air before the eyes of the Almighty.
love to all
Saturday, July 2, 2011
Round 5
I went for Chemo cocktail infusion round 5 on Thursday. Round 5!! Only one left - thank goodness!
I was fairly well rested as I took the xanax as per my previous post, so the infusion itself was not too bad. And super bonus for me - I only felt mildly woozy instead of that awful so called "high."
Friday also went pretty well until the evening. It seems as if your digestive track just stops working. I was hungry and had lunch (the very delicious Chick-Fil-A Grilled chicken and fruit salad - I'm telling you it is FABULOUS!!) and that was fine. Dinner I was hungry too but only ate half of a hamburger and half of a baked potato and had to stop. The nausea had begun to build.
Disgusting long story short - about an hour or so later - contents ejected violently upward. Repeatedly. My throat still hurts and I was fighting my own saliva being too much for me to handle all night long. I feel a little better this morning. Tired, not rested at all - it IS kind of hard to sleep when you feel that way and besides I have to take a prescription every 6 hours which kind of cuts your day into strange pieces...
So I had a cup of weak tea, 3 bites of banana, and a tapioca this morning. The tapioca I ate half of, put back in fridge and ate the other 1/2 about 30 minutes later. Trying to hydrate and I know I am going to have to really watch my energy level today!!!
On the positive - oh my friends - this is a day above ground and those are always good, good, GREAT!!
Just wanted to let you know I am alive and kicking, fighting like a girl as rj has directed me!!!
love to all
I was fairly well rested as I took the xanax as per my previous post, so the infusion itself was not too bad. And super bonus for me - I only felt mildly woozy instead of that awful so called "high."
Friday also went pretty well until the evening. It seems as if your digestive track just stops working. I was hungry and had lunch (the very delicious Chick-Fil-A Grilled chicken and fruit salad - I'm telling you it is FABULOUS!!) and that was fine. Dinner I was hungry too but only ate half of a hamburger and half of a baked potato and had to stop. The nausea had begun to build.
Disgusting long story short - about an hour or so later - contents ejected violently upward. Repeatedly. My throat still hurts and I was fighting my own saliva being too much for me to handle all night long. I feel a little better this morning. Tired, not rested at all - it IS kind of hard to sleep when you feel that way and besides I have to take a prescription every 6 hours which kind of cuts your day into strange pieces...
So I had a cup of weak tea, 3 bites of banana, and a tapioca this morning. The tapioca I ate half of, put back in fridge and ate the other 1/2 about 30 minutes later. Trying to hydrate and I know I am going to have to really watch my energy level today!!!
On the positive - oh my friends - this is a day above ground and those are always good, good, GREAT!!
Just wanted to let you know I am alive and kicking, fighting like a girl as rj has directed me!!!
love to all
Friday, June 24, 2011
Good Sleep, Good Week
I will confess I have Thursdayphobia.
Thursdays are my regular hang out at Tallahassee Cancer Institute Day. Cocktail days it's about 4 hours, herceptin only days - about an hour to an hour and a half..
As evidenced by my previous insomnia entry, anxiety starts to build in me and I just can't sleep.
My regular GP gave me a prescription in January for xanax - an anti-anxiety medication. Now, mind you, I really hate to take medication. ANY medication. I have learned that yes, go ahead and take Tylenol (or whatever) when you very first start to feel a headache, don't wait until the headache is entrenched or you will keep it for days. And amazingly enough (!) it works when you take meds soonest. Isn't that weird?
Since filling the prescription for the xanax, I have taken it like 2 or 3 times prior to this week.
So, upon discussion with a few loved ones, a light bulb moment once again occurs. Anti-anxiety medication is NOT for taking once you are in a full state of anxiety, nor is it taken in order to GET anxiety, no - it is to prevent anxiety. What a concept!
Tuesdays the anxiety starts, the Thursdayphobia. Thus, THIS week, I took a pill Tuesday evening and Wednesday evening. Oh MY GOODNESS!! What an amazing difference! What an amazing benefit!! I actually slept both nights. I mean out like a light, hard as a rock sleep.
Yesterday when I went in for herceptin infusion I didn't feel exhausted, I didn't feel overwhelmed, I didn't have fear trying to climb up and take me over. I can NOT say it was fun. It is really not fun. On the other hand, I had a certain calm acceptance of the inevitability of this whole process, I was not as woozy and GROSS feeling afterwards, and I took a shortish nap when I got home. I had asked my beloved to wake me up no later than 2 pm (I didn't want to sleep too long so as not to disrupt my sleep cycle) and I actually did wake up about 2:08 whereupon he told me it was close to 2:15. Okay - that's not bad.
Next week - full chemo. This means next weekend is out of the question for any meaningful activity and or eating.... So no July 4th celebration for me!! Therefore - we are having hamburgers and hot dogs and such this weekend! Blue cheese burgers, homemade cole slaw, etc., etc.. Fruit!! yum!! Obviously - I can eat right now and most things taste pretty close to how they should.... You have no idea how exciting that is for me!!!
Thursdays are my regular hang out at Tallahassee Cancer Institute Day. Cocktail days it's about 4 hours, herceptin only days - about an hour to an hour and a half..
As evidenced by my previous insomnia entry, anxiety starts to build in me and I just can't sleep.
My regular GP gave me a prescription in January for xanax - an anti-anxiety medication. Now, mind you, I really hate to take medication. ANY medication. I have learned that yes, go ahead and take Tylenol (or whatever) when you very first start to feel a headache, don't wait until the headache is entrenched or you will keep it for days. And amazingly enough (!) it works when you take meds soonest. Isn't that weird?
Since filling the prescription for the xanax, I have taken it like 2 or 3 times prior to this week.
So, upon discussion with a few loved ones, a light bulb moment once again occurs. Anti-anxiety medication is NOT for taking once you are in a full state of anxiety, nor is it taken in order to GET anxiety, no - it is to prevent anxiety. What a concept!
Tuesdays the anxiety starts, the Thursdayphobia. Thus, THIS week, I took a pill Tuesday evening and Wednesday evening. Oh MY GOODNESS!! What an amazing difference! What an amazing benefit!! I actually slept both nights. I mean out like a light, hard as a rock sleep.
Yesterday when I went in for herceptin infusion I didn't feel exhausted, I didn't feel overwhelmed, I didn't have fear trying to climb up and take me over. I can NOT say it was fun. It is really not fun. On the other hand, I had a certain calm acceptance of the inevitability of this whole process, I was not as woozy and GROSS feeling afterwards, and I took a shortish nap when I got home. I had asked my beloved to wake me up no later than 2 pm (I didn't want to sleep too long so as not to disrupt my sleep cycle) and I actually did wake up about 2:08 whereupon he told me it was close to 2:15. Okay - that's not bad.
Next week - full chemo. This means next weekend is out of the question for any meaningful activity and or eating.... So no July 4th celebration for me!! Therefore - we are having hamburgers and hot dogs and such this weekend! Blue cheese burgers, homemade cole slaw, etc., etc.. Fruit!! yum!! Obviously - I can eat right now and most things taste pretty close to how they should.... You have no idea how exciting that is for me!!!
Wednesday, June 15, 2011
Insomnia - again
I remember sleeping. I think....
I generally take about a week or so after chemo cocktail to NOT write. It's just a very difficult time and I don't want to even seem to complain. I have long contended that a day above ground is a good day and I am inclined to feel that even more strongly than before. I am not a complainer nor a whiner AND so saying -
I am tired. Each "cocktail" is a different version of discomfort, ill feeling, fatigue, etc. Universal among them has been insomnia.
First of all, it is difficult to sleep when you are pretty sure you are about to eject the entire contents of your body any second. Then you also are achy, uncomfortable, and maybe sometimes it's just that you are TOO tired to sleep.
There also exists that nagging feeling in your mind about all the things you would like to yet accomplish and so your brain just will NOT shut up.
It is 2:44 as I write this. AM. I've watched TV, I've prayed, I've run through a litany of deeds to accomplish - most of them minor, some of them not so minor.
I'd like to write letters to certain family members. Not everybody I know - just people that God has put on my heart to say something to. A living testimony of Word from God, from me, from love. HELP letters, you know. (He Extends Love Perpetually, for those who don't know.)
I don't feel like I'm about to go out for the big trip, mind you, it's just that I think I should do this while there are certain thoughts in my head. It could be many years down the road before they are handed out at my funeral which I would like to start planning, oh - now would be good.
I had a pretty good evening. Ruben went off to Christ Renews His Parish and I decided to have a "spa" night.
This heat has been killing me - and we have this lovely garden tub. As you may or may not imagine, I have been having some issues dealing with body image. The last time I took a bath in the tub I couldn't be in there for even five minutes. It just hurts my heart to see my wrecked body right now.
It is getting better - but it is going to take a while. And I did enjoy my baths with music and bubbles, oh lovely.
So - to overcome this feeling of heat, and I can't go swimming right now - I have to stay out of the sun, etc.; I filled the tub with tepid water, put on my swim suit and a Lady Antebellum CD and had a glorious 20 minutes or so soaking up some coolness to my overheated little self.
This I will do again!
And on an up note, at least post was not too whiny or full of complaint! Ah, a bath and a good night's sleep - that would be really fabulous. Soon!
I generally take about a week or so after chemo cocktail to NOT write. It's just a very difficult time and I don't want to even seem to complain. I have long contended that a day above ground is a good day and I am inclined to feel that even more strongly than before. I am not a complainer nor a whiner AND so saying -
I am tired. Each "cocktail" is a different version of discomfort, ill feeling, fatigue, etc. Universal among them has been insomnia.
First of all, it is difficult to sleep when you are pretty sure you are about to eject the entire contents of your body any second. Then you also are achy, uncomfortable, and maybe sometimes it's just that you are TOO tired to sleep.
There also exists that nagging feeling in your mind about all the things you would like to yet accomplish and so your brain just will NOT shut up.
It is 2:44 as I write this. AM. I've watched TV, I've prayed, I've run through a litany of deeds to accomplish - most of them minor, some of them not so minor.
I'd like to write letters to certain family members. Not everybody I know - just people that God has put on my heart to say something to. A living testimony of Word from God, from me, from love. HELP letters, you know. (He Extends Love Perpetually, for those who don't know.)
I don't feel like I'm about to go out for the big trip, mind you, it's just that I think I should do this while there are certain thoughts in my head. It could be many years down the road before they are handed out at my funeral which I would like to start planning, oh - now would be good.
I had a pretty good evening. Ruben went off to Christ Renews His Parish and I decided to have a "spa" night.
This heat has been killing me - and we have this lovely garden tub. As you may or may not imagine, I have been having some issues dealing with body image. The last time I took a bath in the tub I couldn't be in there for even five minutes. It just hurts my heart to see my wrecked body right now.
It is getting better - but it is going to take a while. And I did enjoy my baths with music and bubbles, oh lovely.
So - to overcome this feeling of heat, and I can't go swimming right now - I have to stay out of the sun, etc.; I filled the tub with tepid water, put on my swim suit and a Lady Antebellum CD and had a glorious 20 minutes or so soaking up some coolness to my overheated little self.
This I will do again!
And on an up note, at least post was not too whiny or full of complaint! Ah, a bath and a good night's sleep - that would be really fabulous. Soon!
Monday, June 6, 2011
The Third Week
Thus far, all of my "third weeks" have been pretty good.
I consider week one starts with the chemo cocktail, week two begins the following Thursday with an infusion of Herceptin only, and week 3 begins with the second Herceptin only infusion. Then we start all over again.
So by about halfway through the second week I start to feel pretty well. Week 3 infusion comes and for that day and the next I feel pretty crappy again. Then I get relatively close to a "normal" feeling for a few days.
This feeling, however, is tempered by anxiety. I know what's coming. I know I don't like what is coming. I repeatedly tell myself "Get in this moment, Mel. Stay in THIS moment." That does help on Saturday. It helps a little less on Sunday and on Monday. The help it provides erodes as things that used to be easy become very tiring.
I have held a "Ladies' Luncheon" earlier in the spring for the previous 3 years. It is a girly wonderful time - we wear hats - of which I can provide some extras! I get down my mother's punch bowl. We use the good silver, nice dishes and celebrate our feminine selves with pleasant company, cute food (oh come on ladies - you know you love cute food), laughter and companionship. I was unable to do that this year and I really miss that experience.
Next year I will re-institute this event. Also next year - I need to start planning now - I will have to have a "I am Alive" celebration. With food that I like and can actually taste. Much of the time right now I may as well eat cardboard, styro-foam, or aluminum foil. Doesn't sound too appealing does it?
So some of the time I can actually taste food and that is great when I can. Sometimes, however, does not count!! Which leads me to today's lecture on ...
The Theory of Food vs The Reality of Food
"What sounds good for dinner?" Ah, here is a question. You see, any number of things may SOUND good for dinner, or lunch, or breakfast or just it sounds good.... That would fall under The Theory of Food. Let's use as an example a juicy, medium rare steak. Oh I am a carnivore - and happy to be one. If God wanted us to be vegetarians He would not have made beef so very tasty... Envision the steak - It looks delicious, it smells delicious, you know that it is tender and flavorful. Then you cut in to this steak, take a bite and taste - nothing. Or it tastes metallic. Or it just tastes strange - not like food that is spoiled, just off, not quite like anything that is good or that you would want to eat. There is where we come to Food Reality while on chemo.
And it can be anything - maybe some sweet delicious Ranier Cherries. You know they are fruity deliciousness. But are they? Maybe. It depends on when you eat them. And that could change at any time. And may be different in a couple of days.
I do enjoy when food tastes like food. I keep holding out for that. Thus - I won't eat my very favorite things right now. There just isn't much point. Say a beautiful Brie cheese with some lovely fruit.
Add to the mix the delightful (?) proposition of tasting it for the second time, if you catch my drift....
I want to like the foods I like when this is all over, so I won't risk ruining them by the results of extreme nausea...
Right now - in this 3rd week, food tastes pretty good, I am not nauseated unless I get over tired, and then it can pass pretty quickly if I get some rest, so I am enjoying food. I intend to continue to do so until we live again in the conflict of theory vs reality. It won't last forever. And there is always flour tortillas; one of the few foods that always (for ME, at least) tastes like what it is.....
I consider week one starts with the chemo cocktail, week two begins the following Thursday with an infusion of Herceptin only, and week 3 begins with the second Herceptin only infusion. Then we start all over again.
So by about halfway through the second week I start to feel pretty well. Week 3 infusion comes and for that day and the next I feel pretty crappy again. Then I get relatively close to a "normal" feeling for a few days.
This feeling, however, is tempered by anxiety. I know what's coming. I know I don't like what is coming. I repeatedly tell myself "Get in this moment, Mel. Stay in THIS moment." That does help on Saturday. It helps a little less on Sunday and on Monday. The help it provides erodes as things that used to be easy become very tiring.
I have held a "Ladies' Luncheon" earlier in the spring for the previous 3 years. It is a girly wonderful time - we wear hats - of which I can provide some extras! I get down my mother's punch bowl. We use the good silver, nice dishes and celebrate our feminine selves with pleasant company, cute food (oh come on ladies - you know you love cute food), laughter and companionship. I was unable to do that this year and I really miss that experience.
Next year I will re-institute this event. Also next year - I need to start planning now - I will have to have a "I am Alive" celebration. With food that I like and can actually taste. Much of the time right now I may as well eat cardboard, styro-foam, or aluminum foil. Doesn't sound too appealing does it?
So some of the time I can actually taste food and that is great when I can. Sometimes, however, does not count!! Which leads me to today's lecture on ...
The Theory of Food vs The Reality of Food
"What sounds good for dinner?" Ah, here is a question. You see, any number of things may SOUND good for dinner, or lunch, or breakfast or just it sounds good.... That would fall under The Theory of Food. Let's use as an example a juicy, medium rare steak. Oh I am a carnivore - and happy to be one. If God wanted us to be vegetarians He would not have made beef so very tasty... Envision the steak - It looks delicious, it smells delicious, you know that it is tender and flavorful. Then you cut in to this steak, take a bite and taste - nothing. Or it tastes metallic. Or it just tastes strange - not like food that is spoiled, just off, not quite like anything that is good or that you would want to eat. There is where we come to Food Reality while on chemo.
And it can be anything - maybe some sweet delicious Ranier Cherries. You know they are fruity deliciousness. But are they? Maybe. It depends on when you eat them. And that could change at any time. And may be different in a couple of days.
I do enjoy when food tastes like food. I keep holding out for that. Thus - I won't eat my very favorite things right now. There just isn't much point. Say a beautiful Brie cheese with some lovely fruit.
Add to the mix the delightful (?) proposition of tasting it for the second time, if you catch my drift....
I want to like the foods I like when this is all over, so I won't risk ruining them by the results of extreme nausea...
Right now - in this 3rd week, food tastes pretty good, I am not nauseated unless I get over tired, and then it can pass pretty quickly if I get some rest, so I am enjoying food. I intend to continue to do so until we live again in the conflict of theory vs reality. It won't last forever. And there is always flour tortillas; one of the few foods that always (for ME, at least) tastes like what it is.....
Friday, May 27, 2011
The one in which I curse
On the way home from Herceptin infusion yesterday;
I was somewhere above myself, rolling along down a hill, tumbling towards the edge of a cliff but it's a hill that keeps going forever. People seek this "high" feeling, people pay big bucks, give up their dignity, their honor, their every valuable thing to get this "high" feeling. They will pay ANY price to get it.
Light bulb moment - people are, therefore, STUPID!!
I hate this feeling. I cannot begin to fully articulate how much I hate this feeling.
I haven't written for a while - I had been so dreading Chemo #3 as Chemo #2 was truly horrid, and I put off writing in the intention of coping with some of these things that arise from cancer and chemo.
The thing is, I am really feeling pretty angry.
Here is a handy check list of things that are making me mad:
* having cancer
* having a major surgical procedure that leaves me with part of my body just GONE.
* taking chemotherapy
* radiation treatment - oh yay, there's one to look forward to
* fatigue
* nausea - almost always
* insomnia
* anxiety - about treatment, about what's next, about anxiety...
* fighting this battle
* emotional exhaustion
* drug side effects
* re-centering my life schedule around treatment
* feeling weak - physically and emotionally
* feeling angry - yeah, that's ticking me off too!
* general irritability
* frustration with people who don't THINK.
I was thinking of having a t-shirt printed up with the following: It's Cancer, It is not contagious, Grow up
And, in fairness, it's not that any big thing, any obviously offensive behavior has been exhibited nor an offensive comment, has presented itself. It's the weird look because I am wearing a hat to cover my baldness - which is rather startling - as well as to HELLO, protect my scalp from the sun, followed by some supposedly innocuous comment. Here's a clue as to what an innocuous statement actually would be: "Oh that's a cute hat." See how it makes a positive and unoffensive statement? See how it is even nice - particularly when you are not staring at me like I have some dread contagion with which I threaten you?
I know this anger, this irritation, is worsened by fatigue, lack of sleep, and you know - an influx of deadly toxins being flushed into my system on a weekly basis. I just don't care right now. I feel this close to lashing out and reciprocating in kind. I feel like yanking my hat off and saying something like "Since you obviously want a real eyeful and don't care at all how you make someone feel, here you go. Now that you see it can you stop acting like an idiot? It's not contagious you know." And that's being really, really nice; sweet and kind.
Look, I believe in stupid. I've seen it all around me, I've been stupid and I know it's way too easy to fall into. I know I'll do stupid again, and I know YOU will do stupid too. It's part of the human condition.
The emotional upheaval is possibly the worst thing about cancer. Because it is endemic - it is connected to and intertwined with every single aspect of cancer. Every aspect of this disease is mental and emotional as well as physical and medical. I know it is dangerously easy to slip into a bad attitude, a negative outlook and I fight that, I fight that HARD. I'm tired of fighting it. I'm just tired and that makes it even easier to fall.
Keep me in your prayers, people.
I was somewhere above myself, rolling along down a hill, tumbling towards the edge of a cliff but it's a hill that keeps going forever. People seek this "high" feeling, people pay big bucks, give up their dignity, their honor, their every valuable thing to get this "high" feeling. They will pay ANY price to get it.
Light bulb moment - people are, therefore, STUPID!!
I hate this feeling. I cannot begin to fully articulate how much I hate this feeling.
I haven't written for a while - I had been so dreading Chemo #3 as Chemo #2 was truly horrid, and I put off writing in the intention of coping with some of these things that arise from cancer and chemo.
The thing is, I am really feeling pretty angry.
Here is a handy check list of things that are making me mad:
* having cancer
* having a major surgical procedure that leaves me with part of my body just GONE.
* taking chemotherapy
* radiation treatment - oh yay, there's one to look forward to
* fatigue
* nausea - almost always
* insomnia
* anxiety - about treatment, about what's next, about anxiety...
* fighting this battle
* emotional exhaustion
* drug side effects
* re-centering my life schedule around treatment
* feeling weak - physically and emotionally
* feeling angry - yeah, that's ticking me off too!
* general irritability
* frustration with people who don't THINK.
I was thinking of having a t-shirt printed up with the following: It's Cancer, It is not contagious, Grow up
And, in fairness, it's not that any big thing, any obviously offensive behavior has been exhibited nor an offensive comment, has presented itself. It's the weird look because I am wearing a hat to cover my baldness - which is rather startling - as well as to HELLO, protect my scalp from the sun, followed by some supposedly innocuous comment. Here's a clue as to what an innocuous statement actually would be: "Oh that's a cute hat." See how it makes a positive and unoffensive statement? See how it is even nice - particularly when you are not staring at me like I have some dread contagion with which I threaten you?
I know this anger, this irritation, is worsened by fatigue, lack of sleep, and you know - an influx of deadly toxins being flushed into my system on a weekly basis. I just don't care right now. I feel this close to lashing out and reciprocating in kind. I feel like yanking my hat off and saying something like "Since you obviously want a real eyeful and don't care at all how you make someone feel, here you go. Now that you see it can you stop acting like an idiot? It's not contagious you know." And that's being really, really nice; sweet and kind.
Look, I believe in stupid. I've seen it all around me, I've been stupid and I know it's way too easy to fall into. I know I'll do stupid again, and I know YOU will do stupid too. It's part of the human condition.
The emotional upheaval is possibly the worst thing about cancer. Because it is endemic - it is connected to and intertwined with every single aspect of cancer. Every aspect of this disease is mental and emotional as well as physical and medical. I know it is dangerously easy to slip into a bad attitude, a negative outlook and I fight that, I fight that HARD. I'm tired of fighting it. I'm just tired and that makes it even easier to fall.
Keep me in your prayers, people.
Saturday, May 14, 2011
A Whole New Ballgame
So I get up this morning and put on a headband and hat to go out to breakfast with the hubby...
My younger son came in from Jersey last night to do his Florida National Guard weekend. He flew in from Newark to Atlanta where he was postponed, cancelled, standby-ed for 2 flights and confirmed for one leaving Atlanta at 7:40 pm. He rented a car and drove in - and beat the flight....
His hair had gotten quite long and his plan originally - when he was going to get here at 2:40 in the afternoon - was to go to the barbershop and pay considerably less for a military cut than he would had to have paid in Princeton. Unfortunately, he got here late enough there were no barber shops open so we had to scissor it down and buzz it off. Fortunately, he has a nicely shaped head and looks quite handsome even with no hair...
I kept laughing while I was helping him which only made him ask how bad it was looking and did I mess it up. No, actually, it was NOT that it was messed up - it was just funny and during the transition I have to admit it looked rather like he had the mange!!! Upon completion, however, he looked fine.
I have told him for years now that he looks like my male clone counterpart. To which he always replies "I don't look a thing like you!" I tell you - he looks so much like me!
This morning after breakfast Ruben dropped me off at the Armory (where Troy had driven my car at 5:20 am) so I could pick up the car and do a few errands. I called my hairdresser and she was able to see me. I had her cut off all my remaining hair.
I did not go Kojak, more GI Jane. At first, before she started the clippers, I was a little weepy. So saying - once she started cutting I felt like I was really taking charge and doing something I had control over - I was getting rid of my hair on MY terms. I won't be lamenting the loss a clump at a time, I won't be lint roller-ing the pillow every morning to get rid of "fallout", I won't be grossed out by hair just being EVERYWHERE all the time.
I intend to take a picture of the two really really short haired of us - Troy and myself - when he gets back tomorrow.
All in all, I feel pretty good about this. I have scarves, turbans, hats, even a wig with which to go out and be seen in public. I have sunscreen which I will be applying daily - that skin hasn't seen the light of day since - oh wait, it has never seen the light of day - I had a head full of hair when I was born!!!
Of course, this is a bold enough move that a more dramatic eye makeup look was called for. I may have a GI "boy" hair cut, but I am still one of the girliest girls around.
I may even have to post a picture.
My younger son came in from Jersey last night to do his Florida National Guard weekend. He flew in from Newark to Atlanta where he was postponed, cancelled, standby-ed for 2 flights and confirmed for one leaving Atlanta at 7:40 pm. He rented a car and drove in - and beat the flight....
His hair had gotten quite long and his plan originally - when he was going to get here at 2:40 in the afternoon - was to go to the barbershop and pay considerably less for a military cut than he would had to have paid in Princeton. Unfortunately, he got here late enough there were no barber shops open so we had to scissor it down and buzz it off. Fortunately, he has a nicely shaped head and looks quite handsome even with no hair...
I kept laughing while I was helping him which only made him ask how bad it was looking and did I mess it up. No, actually, it was NOT that it was messed up - it was just funny and during the transition I have to admit it looked rather like he had the mange!!! Upon completion, however, he looked fine.
I have told him for years now that he looks like my male clone counterpart. To which he always replies "I don't look a thing like you!" I tell you - he looks so much like me!
This morning after breakfast Ruben dropped me off at the Armory (where Troy had driven my car at 5:20 am) so I could pick up the car and do a few errands. I called my hairdresser and she was able to see me. I had her cut off all my remaining hair.
I did not go Kojak, more GI Jane. At first, before she started the clippers, I was a little weepy. So saying - once she started cutting I felt like I was really taking charge and doing something I had control over - I was getting rid of my hair on MY terms. I won't be lamenting the loss a clump at a time, I won't be lint roller-ing the pillow every morning to get rid of "fallout", I won't be grossed out by hair just being EVERYWHERE all the time.
I intend to take a picture of the two really really short haired of us - Troy and myself - when he gets back tomorrow.
All in all, I feel pretty good about this. I have scarves, turbans, hats, even a wig with which to go out and be seen in public. I have sunscreen which I will be applying daily - that skin hasn't seen the light of day since - oh wait, it has never seen the light of day - I had a head full of hair when I was born!!!
Of course, this is a bold enough move that a more dramatic eye makeup look was called for. I may have a GI "boy" hair cut, but I am still one of the girliest girls around.
I may even have to post a picture.
Tuesday, May 10, 2011
Cancer Sucks.
I've been actually feeling pretty well for the last few days. Oh, what a wonderful gift from God that is - feeling well. I know it's not the equal of the healthy feeling from before this started - but, oh, how wonderful it is to feel this well!!! Savor each breath you take and enjoy feeling well people!! It is COMPLETELY AWESOME!!
My hair is falling out. I get up in the morning and get the lint roller out to remove hair from my pillow. I'll comb my hair or run my hands through and get what would have been a couple of days worth of "fallout" every. single. time.
I look at myself in the mirror and oh I feel very old because I have thin, thin hair. It does not feel attractive in any way. I feel hair on me - on my neck, on my face - all the time. It is really just kind of gross.
I ordered some turbans and hats and such the other day that should be here by Friday. Yesterday I attended a "Look Good Feel Better" event. There they teach you makeup tricks to disguise some of the issues - like even losing your eyebrows and eyelashes, and wig care and such. They also told us that the American Cancer Society has a "Gift Closet" where you may be able to get all manner of things. We dropped by there today and I found a wig that I can live with.
So enough with the hemming and hawing around. When the items I ordered get here, I think I am going to go to my hairdresser. She had called me to check on me some short while ago and told me that when the time comes I can go to her she will take me back to the bathroom where we can be private and she will shave my head.
There is something that is quite humiliating about losing my hair. Something embarrassing, something demoralizing.
Well, there is something humiliating and demoralizing about this whole process anyway and yes, embarrassing.
Cancer sucks.
It sucks the very life's breath out of you if you let it defeat you.
This battle - it is tiring at best. I haven't written for a while because therapy though this is for me, I haven't wanted to look at how bad it is when it is bad. And it IS bad.
It scares me sometimes how bad it is. Oh, it scares me, indeed.
It scares me to think how much more I have to go. The first chemo round I was sick for a few days. This last time was my second round and I was sick for a full week and more. So I dread this next time - won't it get worse again? What about the time after, and after that? You follow my worry there.
It scares me because of how weak I felt this last time, how fatigued and vulnerable. Then add some indignity of going Kojak. Mmm. Bad.
It scares me how much I don't want anyone to ask me how I am. Because there are days when I could just scream out "I am horrible! I feel the worst ever and I know I am going to continue to feel like this for a while and then "better" is only that and not anything approaching "good" and I'm tired all the time and I know you don't want to hear this and I don't want to say this and I most of all don't want to FEEL this so please don't ask me if you don't want to hear the truth and I don't want to even tell you this and I don't want to think about it." But that would be rude and I am just fatigued from even thinking about it.
I don't mean to complain and I hope it doesn't seem like complaining, because I am simply trying to be honest and realistic here.
I'm also NOT telling people to not ask me how I am. I know that many people ask me because they really DO care, not just because it is the polite "form" to follow. If I hesitate when I answer - I am clamping my hand over my mouth inside so I don't respond inappropriately and because I am processing my answer to be somewhat honest and very not too much information for the hearer.
I'm scared because I have so far yet to go.
I'm scared of how my brain seems to go on miniature and sometimes permanent vacations.
I'm scared because I want to present a good face to the world at large and to my family in particular - a brave face, a positive and strong face. And sometimes I feel like a gentle breeze could blow me away because I feel so weak, and so vulnerable and so very tired.
And even so, I am surrounded by love and kindness and I know I am lifted in prayer - around the world.
I am a mighty warrior because God is with me. He is with me in small kindnesses extended to me by others, in meals people have made for me, in prayers, in cards sent me - some arriving just exactly when I most need them. He is with me when I can't sleep - which is far too often - and I reach for my rosary to pray a Divine Mercy Chaplet. He is with me when I lament the loss of morning coffee - tea can be comforting too, so for a while I'll drink tea. He is with me when I have my morning cup of tea and say my morning prayers. He is with me in something as innocuous as a Face Book friend sending me a greeting.
All in all, I'll take it. I'll take this hard road, because I know there's a better one up ahead.
My hair is falling out. I get up in the morning and get the lint roller out to remove hair from my pillow. I'll comb my hair or run my hands through and get what would have been a couple of days worth of "fallout" every. single. time.
I look at myself in the mirror and oh I feel very old because I have thin, thin hair. It does not feel attractive in any way. I feel hair on me - on my neck, on my face - all the time. It is really just kind of gross.
I ordered some turbans and hats and such the other day that should be here by Friday. Yesterday I attended a "Look Good Feel Better" event. There they teach you makeup tricks to disguise some of the issues - like even losing your eyebrows and eyelashes, and wig care and such. They also told us that the American Cancer Society has a "Gift Closet" where you may be able to get all manner of things. We dropped by there today and I found a wig that I can live with.
So enough with the hemming and hawing around. When the items I ordered get here, I think I am going to go to my hairdresser. She had called me to check on me some short while ago and told me that when the time comes I can go to her she will take me back to the bathroom where we can be private and she will shave my head.
There is something that is quite humiliating about losing my hair. Something embarrassing, something demoralizing.
Well, there is something humiliating and demoralizing about this whole process anyway and yes, embarrassing.
Cancer sucks.
It sucks the very life's breath out of you if you let it defeat you.
This battle - it is tiring at best. I haven't written for a while because therapy though this is for me, I haven't wanted to look at how bad it is when it is bad. And it IS bad.
It scares me sometimes how bad it is. Oh, it scares me, indeed.
It scares me to think how much more I have to go. The first chemo round I was sick for a few days. This last time was my second round and I was sick for a full week and more. So I dread this next time - won't it get worse again? What about the time after, and after that? You follow my worry there.
It scares me because of how weak I felt this last time, how fatigued and vulnerable. Then add some indignity of going Kojak. Mmm. Bad.
It scares me how much I don't want anyone to ask me how I am. Because there are days when I could just scream out "I am horrible! I feel the worst ever and I know I am going to continue to feel like this for a while and then "better" is only that and not anything approaching "good" and I'm tired all the time and I know you don't want to hear this and I don't want to say this and I most of all don't want to FEEL this so please don't ask me if you don't want to hear the truth and I don't want to even tell you this and I don't want to think about it." But that would be rude and I am just fatigued from even thinking about it.
I don't mean to complain and I hope it doesn't seem like complaining, because I am simply trying to be honest and realistic here.
I'm also NOT telling people to not ask me how I am. I know that many people ask me because they really DO care, not just because it is the polite "form" to follow. If I hesitate when I answer - I am clamping my hand over my mouth inside so I don't respond inappropriately and because I am processing my answer to be somewhat honest and very not too much information for the hearer.
I'm scared because I have so far yet to go.
I'm scared of how my brain seems to go on miniature and sometimes permanent vacations.
I'm scared because I want to present a good face to the world at large and to my family in particular - a brave face, a positive and strong face. And sometimes I feel like a gentle breeze could blow me away because I feel so weak, and so vulnerable and so very tired.
And even so, I am surrounded by love and kindness and I know I am lifted in prayer - around the world.
I am a mighty warrior because God is with me. He is with me in small kindnesses extended to me by others, in meals people have made for me, in prayers, in cards sent me - some arriving just exactly when I most need them. He is with me when I can't sleep - which is far too often - and I reach for my rosary to pray a Divine Mercy Chaplet. He is with me when I lament the loss of morning coffee - tea can be comforting too, so for a while I'll drink tea. He is with me when I have my morning cup of tea and say my morning prayers. He is with me in something as innocuous as a Face Book friend sending me a greeting.
All in all, I'll take it. I'll take this hard road, because I know there's a better one up ahead.
Monday, May 2, 2011
Let's Go
Do you have this to face? Is something looming in front of you that you KNOW you really must do, but, oh dear God, you do not WANT to do?
Jump in and do it.
Do it NOW.
Do NOT hesitate another minute.
I think of one friend in particular, whom I shall not name, who I want to say this to. Sooner begun, sooner done, my sweet friend.
No, this is not fun. In fact it is VERY not fun. But I have just completed the 2nd round of chemo - that's one third of the way through with that! Yes, I have way more of this trip in front of me than behind me.
But I have some of this trip behind me. I knew I could not analyze this situation too much or I would develop analysis paralysis. I RAN in abject terror towards that which frightened me so I could conquer it. I refused to run in abject terror away from it - lest it should conquer me!
I tire easily. I don't necessarily feel very well at any given moment. But you know what? I am fighting. I am standing facing my fear, and I am going to kick butt and take names in this battle. Including I will call on those who attempt to "help" without knowing what they are talking about to stop talking about that which they know nothing.
I have found some amazing gifts here too. Gifts that I didn't fully realize I had already, as well as the gifts of kindness from others.
You will find these gifts too. And you will be the warrior princess to put Zena (or Ziva) to shame!!
This post really is directed, targeted, aimed at my sweet friend. I don't see enough of her and I love her dearly. Fight, my sweet girl!. Fight with me by your side. Yes, the road is going to be difficult. Is it easy now? I think not!!! And this road, this road of intentional battle leads to success. Oh I will be the victor here. I want you to be the victor as well!
Okay, so I felt pretty crummy for a couple of days. I can and do realize that I am feeling a bit better at a time. There are tricks to help you through the worst and you know, I have been in far worse situations than this.
My faith, which was pretty good, I think, has been further strengthened. It has been strengthened by testing, but so? Isn't that how we strengthen any muscle we have?? Of course it is!
I am surrounded by love, uplifted by prayer, cushioned in God's love and protection. How could I not want this for you too, my sweet friend?
I walked your path for a while - as short a while as possible!! Oh, how it frightened me. It was a drawing out of this journey that I simply could not deal with. It was far too uncertain. I do know, that this road I chose COULD fail me too. I know that. But I have a far better chance on it than the other.
Do not fear to face these demons, for demons they are. Stand and face them, face them down. They appear frightening as long as we let them. We have the power and the strength. They are nothing.
And you, are something special.
Jump in and do it.
Do it NOW.
Do NOT hesitate another minute.
I think of one friend in particular, whom I shall not name, who I want to say this to. Sooner begun, sooner done, my sweet friend.
No, this is not fun. In fact it is VERY not fun. But I have just completed the 2nd round of chemo - that's one third of the way through with that! Yes, I have way more of this trip in front of me than behind me.
But I have some of this trip behind me. I knew I could not analyze this situation too much or I would develop analysis paralysis. I RAN in abject terror towards that which frightened me so I could conquer it. I refused to run in abject terror away from it - lest it should conquer me!
I tire easily. I don't necessarily feel very well at any given moment. But you know what? I am fighting. I am standing facing my fear, and I am going to kick butt and take names in this battle. Including I will call on those who attempt to "help" without knowing what they are talking about to stop talking about that which they know nothing.
I have found some amazing gifts here too. Gifts that I didn't fully realize I had already, as well as the gifts of kindness from others.
You will find these gifts too. And you will be the warrior princess to put Zena (or Ziva) to shame!!
This post really is directed, targeted, aimed at my sweet friend. I don't see enough of her and I love her dearly. Fight, my sweet girl!. Fight with me by your side. Yes, the road is going to be difficult. Is it easy now? I think not!!! And this road, this road of intentional battle leads to success. Oh I will be the victor here. I want you to be the victor as well!
Okay, so I felt pretty crummy for a couple of days. I can and do realize that I am feeling a bit better at a time. There are tricks to help you through the worst and you know, I have been in far worse situations than this.
My faith, which was pretty good, I think, has been further strengthened. It has been strengthened by testing, but so? Isn't that how we strengthen any muscle we have?? Of course it is!
I am surrounded by love, uplifted by prayer, cushioned in God's love and protection. How could I not want this for you too, my sweet friend?
I walked your path for a while - as short a while as possible!! Oh, how it frightened me. It was a drawing out of this journey that I simply could not deal with. It was far too uncertain. I do know, that this road I chose COULD fail me too. I know that. But I have a far better chance on it than the other.
Do not fear to face these demons, for demons they are. Stand and face them, face them down. They appear frightening as long as we let them. We have the power and the strength. They are nothing.
And you, are something special.
Thursday, April 21, 2011
The Hole in the Metaphysical Universe
It is difficult to come to terms with a MAJOR change in your body. That is what this is; a MAJOR change in my body.
As you grow and age, your body changes over time. Gradually it changes from the body of a child to the body of a young woman. When you become pregnant, again, your body changes are gradual. Yes, I know, it sometimes FEELS as if you went from a 16-inch Scarlett O'Hara waist to being bigger than the entire planet - but that is FEELINGS. Don't trust them so much - they can mislead you.
So having gone through many changes over my lifetime, and fully understanding that none of them was instant change, but gradual, I come to this point in my life where I DID actually have a rapid, major change that for all intents and purposes was, indeed, instant. To me because I was unconscious, to my immediate supporters and family members because I was in the operating room. Three supporters - my husband, one of my sons and my daughter saw me prior to and then post surgery. For my other family members and friends who have seen me it also has been "instant"...
When you consider that I have had to deal with a profoundly and abundantly feminine body since I was 13 years old that means that for 40 PLUS years - I did say YEARS - I have had the feeling that surely every female on the planet has - the desire to say "HEY!! I'm about a foot higher than where you are looking and they are NOT going to talk to you!"
There is a certain relief in no longer having to deal with that issue that underlies all of my feelings about this "new" body. Okay, there is one for the plus column!
I know that this is a transitional phase for me, physically as well as emotionally and psychologically. It is just not always possible to wrap your mind around that.
The best description I can come up with is - I am the universe. Each of us is "the universe" and so from MY perspective I am the universe. I hold all of my feelings, all of my thoughts, I am the connection to every other thing in my world, every thing that is reality comes into life and reality when I encounter it and interact with it, otherwise it is merely concept. Every one that I love is in my heart and alive because I love and am alive. I hope you follow that to understand my perspective. I am not saying I am God, I am saying God is in me and my charge is to connect and bring to life God in everything and everyone. That is the charge EACH of us has - to be who God designed and created us to be. We are solid and physical and very "real" and yet at the same time we are nebulous, ether, intangible - vapor on the wind, and both vapor and the wind all at the same time. We can choose to be the light we are intended to be or we can be darkness.
This physical reality in which I now exist - my metaphysical universe - has this huge hole in it now. This place of emptiness where once there was something. A hole has been torn in the presence of my existing that will always be there - even when it isn't there any more. A place in the starfield of what I am where there are no stars, no light, no anything but there used to be. If you could reach out and touch this place in the universe you couldn't touch it, it is a cessation of being. And it is not.
I will find a balance here, I know. There is healing going on physically and I am working on the rest of it... There isn't a "right" way to do this, there is only doing this, walking towards where I need to be and finding so many blessings along the way.
I have been showered with many kindnesses and support. Many friends have made meals for us and I know some really good cooks!! I have been prayed for and I do value and I feel the support of those prayers - from around the world!! I am flooded by love from so many - from people I don't even know - sweet Elisa's family in Italy prays for me and sends me kind messages - grazie, cara, mille grazie. I have been blessed with a husband who is entirely supportive and patient and kind and empathetic for me. My children, my sisters and extended family have been wonderful.
I am aware of my blessings and so grateful for them. It's a day above ground and that's a good day.
As you grow and age, your body changes over time. Gradually it changes from the body of a child to the body of a young woman. When you become pregnant, again, your body changes are gradual. Yes, I know, it sometimes FEELS as if you went from a 16-inch Scarlett O'Hara waist to being bigger than the entire planet - but that is FEELINGS. Don't trust them so much - they can mislead you.
So having gone through many changes over my lifetime, and fully understanding that none of them was instant change, but gradual, I come to this point in my life where I DID actually have a rapid, major change that for all intents and purposes was, indeed, instant. To me because I was unconscious, to my immediate supporters and family members because I was in the operating room. Three supporters - my husband, one of my sons and my daughter saw me prior to and then post surgery. For my other family members and friends who have seen me it also has been "instant"...
When you consider that I have had to deal with a profoundly and abundantly feminine body since I was 13 years old that means that for 40 PLUS years - I did say YEARS - I have had the feeling that surely every female on the planet has - the desire to say "HEY!! I'm about a foot higher than where you are looking and they are NOT going to talk to you!"
There is a certain relief in no longer having to deal with that issue that underlies all of my feelings about this "new" body. Okay, there is one for the plus column!
I know that this is a transitional phase for me, physically as well as emotionally and psychologically. It is just not always possible to wrap your mind around that.
The best description I can come up with is - I am the universe. Each of us is "the universe" and so from MY perspective I am the universe. I hold all of my feelings, all of my thoughts, I am the connection to every other thing in my world, every thing that is reality comes into life and reality when I encounter it and interact with it, otherwise it is merely concept. Every one that I love is in my heart and alive because I love and am alive. I hope you follow that to understand my perspective. I am not saying I am God, I am saying God is in me and my charge is to connect and bring to life God in everything and everyone. That is the charge EACH of us has - to be who God designed and created us to be. We are solid and physical and very "real" and yet at the same time we are nebulous, ether, intangible - vapor on the wind, and both vapor and the wind all at the same time. We can choose to be the light we are intended to be or we can be darkness.
This physical reality in which I now exist - my metaphysical universe - has this huge hole in it now. This place of emptiness where once there was something. A hole has been torn in the presence of my existing that will always be there - even when it isn't there any more. A place in the starfield of what I am where there are no stars, no light, no anything but there used to be. If you could reach out and touch this place in the universe you couldn't touch it, it is a cessation of being. And it is not.
I will find a balance here, I know. There is healing going on physically and I am working on the rest of it... There isn't a "right" way to do this, there is only doing this, walking towards where I need to be and finding so many blessings along the way.
I have been showered with many kindnesses and support. Many friends have made meals for us and I know some really good cooks!! I have been prayed for and I do value and I feel the support of those prayers - from around the world!! I am flooded by love from so many - from people I don't even know - sweet Elisa's family in Italy prays for me and sends me kind messages - grazie, cara, mille grazie. I have been blessed with a husband who is entirely supportive and patient and kind and empathetic for me. My children, my sisters and extended family have been wonderful.
I am aware of my blessings and so grateful for them. It's a day above ground and that's a good day.
Saturday, April 16, 2011
My Dishwasher May Be Haunted
I just had a few days visit from my youngest sister (aka my little baby sister) and her husband and my nephew. They had been going to stay at a hotel nearby because they didn't want to put too much on me. I had told her to stay with us and we left it up in the air for a couple of weeks. I finally told her - Linda, I want you HERE. If I get tired - I'll excuse myself and rest. I just want you here at the house. I HAVE the room.
So she allowed they would try it and if they felt they were too much for me they would go to a hotel. I won!!
Well, that is a good thing!. I know they had been worried about me and I had worried about how worried they were etc.
It was SOO good to have them here. My sweet husband is supportive and wonderful and he happens to be a man (Hallelujah!) and I sometimes need a girly girl kind of person around me, being extremely girly of a girl myself. I needed her here for a visit and I love my brother-in-law and nephew as well; it was all good.
I was able to share with her some of my feelings and fears about this new body and the limitations it puts on me; the way it damages my sense of my feminine self; how painful it is to look and see this very different physical aspect; the difficulty in holding on to the idea of "this is only a transition" even though I mentally know that it is, etc., etc., etc.
We laughed our heads off - but who needs their head attached? - and had a good time. She was helpful and funny and kind and watchful - she could tell when I did, indeed, over do and told me I was looking green around the gills. At the same time, she understood that sometimes you have an inner NEED to overdo it a bit just because you CAN!
I set my dishwasher to run at like 1:00 AM because - no one is up and about, it inconveniences no one, and when I get up I can unload the dishwasher and put everything in its proper place. There is a certain pleasure in doing that, valuing your useful possessions and caring for them.
My house is only a little over 5 years old. Linda (little baby sister) has more recently done a kitchen renovation and so her much older home has a newer kitchen than mine.
Mind you I LOVE having a dishwasher (having BEEN the dishwasher for a number of years) and I like my dishwasher just fine. So saying - I have, indeed, discovered some design flaws in the model I have. It has its "buttons" on the front. These are not actual raised buttons, they are flat touch sensors. Invariably, someone will put something in the dishwasher, shut the door and by the act of shutting the door, inadvertently push a button that you didn't mean to touch. However, you CAN program the thing to do any number of different functions, my own favorite being the whole run it at 1 o'clock in the morning when you are asleep and don't have to hear it.
Linda's newer model - which is blessedly quieter than mine - has the same option, however, her "buttons" are at the top of the door where you don't touch them inadvertently AND hers will retain its programming if you decide any time after you have programmed it to add something to the contents. Mine - no.
So every night I would program my dishwasher and then later have to program it again because something had to be added. Mind you, this includes myself adding something - but I am the one who is aware of its little quirks. So in the morning I'd get up - and having heard it make some noise in the night that indicated it had done SOMETHING - to find it hadn't run after all! What? I ascribe it to ghosts. This actually was pretty funny to me. The best laid plans of homemakers everywhere.
Advantage? Well, even though we would unload the dishwasher together, which enhances the experience, it gave us a little extra time to just go ahead and sit out on the porch (with blankets - it was CHILLY!! 49ish degrees!) and chat and watch the morning come up. The peace of my back porch is wonderful. I look out over our forest - the beauty of trees stretching as far as you can see, the birds chirping, the hummingbird battles - so lovely, so relaxing, so calming.
We had a great visit, a loving visit, a calming visit. And maybe the ghosts of the dishwasher helped....
So she allowed they would try it and if they felt they were too much for me they would go to a hotel. I won!!
Well, that is a good thing!. I know they had been worried about me and I had worried about how worried they were etc.
It was SOO good to have them here. My sweet husband is supportive and wonderful and he happens to be a man (Hallelujah!) and I sometimes need a girly girl kind of person around me, being extremely girly of a girl myself. I needed her here for a visit and I love my brother-in-law and nephew as well; it was all good.
I was able to share with her some of my feelings and fears about this new body and the limitations it puts on me; the way it damages my sense of my feminine self; how painful it is to look and see this very different physical aspect; the difficulty in holding on to the idea of "this is only a transition" even though I mentally know that it is, etc., etc., etc.
We laughed our heads off - but who needs their head attached? - and had a good time. She was helpful and funny and kind and watchful - she could tell when I did, indeed, over do and told me I was looking green around the gills. At the same time, she understood that sometimes you have an inner NEED to overdo it a bit just because you CAN!
I set my dishwasher to run at like 1:00 AM because - no one is up and about, it inconveniences no one, and when I get up I can unload the dishwasher and put everything in its proper place. There is a certain pleasure in doing that, valuing your useful possessions and caring for them.
My house is only a little over 5 years old. Linda (little baby sister) has more recently done a kitchen renovation and so her much older home has a newer kitchen than mine.
Mind you I LOVE having a dishwasher (having BEEN the dishwasher for a number of years) and I like my dishwasher just fine. So saying - I have, indeed, discovered some design flaws in the model I have. It has its "buttons" on the front. These are not actual raised buttons, they are flat touch sensors. Invariably, someone will put something in the dishwasher, shut the door and by the act of shutting the door, inadvertently push a button that you didn't mean to touch. However, you CAN program the thing to do any number of different functions, my own favorite being the whole run it at 1 o'clock in the morning when you are asleep and don't have to hear it.
Linda's newer model - which is blessedly quieter than mine - has the same option, however, her "buttons" are at the top of the door where you don't touch them inadvertently AND hers will retain its programming if you decide any time after you have programmed it to add something to the contents. Mine - no.
So every night I would program my dishwasher and then later have to program it again because something had to be added. Mind you, this includes myself adding something - but I am the one who is aware of its little quirks. So in the morning I'd get up - and having heard it make some noise in the night that indicated it had done SOMETHING - to find it hadn't run after all! What? I ascribe it to ghosts. This actually was pretty funny to me. The best laid plans of homemakers everywhere.
Advantage? Well, even though we would unload the dishwasher together, which enhances the experience, it gave us a little extra time to just go ahead and sit out on the porch (with blankets - it was CHILLY!! 49ish degrees!) and chat and watch the morning come up. The peace of my back porch is wonderful. I look out over our forest - the beauty of trees stretching as far as you can see, the birds chirping, the hummingbird battles - so lovely, so relaxing, so calming.
We had a great visit, a loving visit, a calming visit. And maybe the ghosts of the dishwasher helped....
Monday, April 11, 2011
blaaah
Well, I have pretty much weathered the first chemo... Thursday was when I had it (April 7th) and it itself was not too bad.
The last really good sleep I had was the 90 minute nap that afternoon.
So Saturday was, yes - oh this may be TMI - regurgitation day. It seemed like my stomach just stopped working.
Pushing liquids, trying to get some food down, including greek yogurt which is chock full of bacteria that your stomach needs to break down food. And bland easy food - you know the BRAT diet - Bananas, Rice, Applesauce, Toast.
I have had food poisoning worse than that - oh way worse!! Sunday felt more like low level stomach flu. I look forward to not having to set the alarm to make sure I take one of the dread meds every 6 hours - only one more round of pills for this time!
Oh I must tell you - I thought this was actually funny. Mind you, I do have a bit of a warped sense of humor, but you know.... that's me.
I had to go back in to the Dr.'s office Friday for a post chemo injection. When the lovely Catherine (chemo nurse and lovely soul!) told me it was an injection in my stomach I was almost ready to freak!! I can look at a needle once it is IN me and that doesn't bother me. I can NOT stand to see the needle go in ANYWHERE on ANYTHING - seriously, like even a 'practice injection in an orange' - IN - no big deal, going in AAAAAAAHHHH!!!!! Needless to say, I never under any circumstances watch the needle go in....
So, I'm thinking of horror stories I have heard about rabies injections and how they are super painful and on and on.
Catherine tells me in her calm and soothing way that I'll feel a little swab, a little stick, a little pain. I feel the swab, I feel pressure and she says, "There , all done."
What??? I didn't feel a thing! What a hoot! Here I am ready to freak myself out for absolutely no reason whatsoever....
I know it is possible it will get worse. It is also possible is will not get worse. I know this is going to be an extended and wearying process. I ask you to keep me in your prayers.
Dean, my dear friend - thank you for your letters. I promise I will be getting back into action. I have thank you notes to write, I have lots of things to do - it's just that I seem to have hit an interruption in my energy flow that keeps me inactive and not able to plug back into my energy to take actual action.
The last really good sleep I had was the 90 minute nap that afternoon.
So Saturday was, yes - oh this may be TMI - regurgitation day. It seemed like my stomach just stopped working.
Pushing liquids, trying to get some food down, including greek yogurt which is chock full of bacteria that your stomach needs to break down food. And bland easy food - you know the BRAT diet - Bananas, Rice, Applesauce, Toast.
I have had food poisoning worse than that - oh way worse!! Sunday felt more like low level stomach flu. I look forward to not having to set the alarm to make sure I take one of the dread meds every 6 hours - only one more round of pills for this time!
Oh I must tell you - I thought this was actually funny. Mind you, I do have a bit of a warped sense of humor, but you know.... that's me.
I had to go back in to the Dr.'s office Friday for a post chemo injection. When the lovely Catherine (chemo nurse and lovely soul!) told me it was an injection in my stomach I was almost ready to freak!! I can look at a needle once it is IN me and that doesn't bother me. I can NOT stand to see the needle go in ANYWHERE on ANYTHING - seriously, like even a 'practice injection in an orange' - IN - no big deal, going in AAAAAAAHHHH!!!!! Needless to say, I never under any circumstances watch the needle go in....
So, I'm thinking of horror stories I have heard about rabies injections and how they are super painful and on and on.
Catherine tells me in her calm and soothing way that I'll feel a little swab, a little stick, a little pain. I feel the swab, I feel pressure and she says, "There , all done."
What??? I didn't feel a thing! What a hoot! Here I am ready to freak myself out for absolutely no reason whatsoever....
I know it is possible it will get worse. It is also possible is will not get worse. I know this is going to be an extended and wearying process. I ask you to keep me in your prayers.
Dean, my dear friend - thank you for your letters. I promise I will be getting back into action. I have thank you notes to write, I have lots of things to do - it's just that I seem to have hit an interruption in my energy flow that keeps me inactive and not able to plug back into my energy to take actual action.
Thursday, April 7, 2011
Short post - One Down..
I had my first round of chemo today. Dr. Rassam is great and his chemo nurse Catherine is awesome!
I had had a very positive feeling there on my initial visit and felt strongly that this is a place where I can have healing and peace, gain my strength and claim my health anew.
It hurt this time - probably more than it ever will again - because my port is so newly placed - okay I have decided it is as alien invasion type thing so it will henceforth be called implanted.... until we can eject the aliens and remove it!!
Catherine explains each step and what each drug is prior to putting it in. LOADS of anti-nausea IV and those can make you drowsy. There is actually a lot of sleeping that goes on in the infusion room. I may be one of those who refuse to succumb, though. Well, somebody has to be on the alert.
I came home and took a 90 minute solid sleep nap and I just want to let my loved ones know I am okay.
I had had a very positive feeling there on my initial visit and felt strongly that this is a place where I can have healing and peace, gain my strength and claim my health anew.
It hurt this time - probably more than it ever will again - because my port is so newly placed - okay I have decided it is as alien invasion type thing so it will henceforth be called implanted.... until we can eject the aliens and remove it!!
Catherine explains each step and what each drug is prior to putting it in. LOADS of anti-nausea IV and those can make you drowsy. There is actually a lot of sleeping that goes on in the infusion room. I may be one of those who refuse to succumb, though. Well, somebody has to be on the alert.
I came home and took a 90 minute solid sleep nap and I just want to let my loved ones know I am okay.
Monday, April 4, 2011
The 3 Simple Rules
It is a beautiful day here today. It is supposed to get up to 83 degrees and then tomorrow we are expected to have thunder boomers - and lots of rain!
Tomorrow I have the MUGA test - what a name! It means Multiple Gate Acquisition - it tests the functionality of my heart. Is it pumping adequately.
Chemo starts Thursday. I am a little anxious about it. The CT scan indicated I have no "random" cancer elsewhere in my body - that is good. The bone scan indicated I have good strong, healthy bones - THAT is good. The MUGA, or heart scan WILL ( I insist) indicate that my heart is strong and healthy and pumping most fabulously! That will be good.
See, chemo is very, very bad for you. It is what will kill the cancer and greatly increase the likelihood I will stay alive and healthy, but it is very, very bad for you.
I am not going into all of the details here, gentle reader, as you will likely be bored and /or forget anyway.
I will tell you that my cancer is at least stage 3 - oh that's good "at least!!" - highly aggressive, and that I am firmly on the carousel of cancer treatment.
Yeah, yeah, I know - chemo hasn't started yet. Nonetheless I am firmly on the carousel, the attendants just haven't started the real ride yet....
I made cookies yesterday because I remembered how tasty they were when I made them in early January (accidentally discovering that Oatmeal Chocolate Chip Cookies are WAY better than Toll House Chocolate Chip Cookies!) and I figured I might want to enjoy that before I can't taste things very well!!
I have done my research and that is one of the many exciting potential - indeed, probable - side effects I will get while on this carnival ride...
I guess the real point of this post is to advise people who may (or may not) be interested about the suggested guidelines for how to talk to a cancer patient. These may be updated as I go through this ride.
1. Keep it simple, sincere, and in YOUR personal, actual experienced knowledge base. For example "I'm sorry to hear your news. If there is something I can do, please let me know, I will keep you in my prayers."
which leads directly to Rule 2
2. Do not under any circumstance feel free to share from what is NOT in YOUR personal, actual experienced knowledge base. For example "Oh, my neighbor/cousin/sister/some stranger I randomly met had exactly what you have and she/he (option1) never had a moment's problem with chemo! (option2) threw her guts up every minute of the day for 59 years, lost all her hair, was in acute agony for 90 years" etc., etc., etc. You get my drift.
3. It is all about me right now. This is for my survival and best interest.
Why do I post these 3 simple rules?
Rule 1 because this is ALWAYS the best tack to take. If I just hear a kind word of support, prayer offered, help offered - believe it or not that DOES help.
Rule 2 because - PEOPLE!!! I have researched my situation. I have spoken to my doctors. My husband and I are aware of what I can expect. You were not there. I have NOT told you everything - nor will I tell you everything. I am NOT stupid. This is momentous, and huge, and frightening what I face and YOU DO NOT KNOW WHAT IS ENTAILED HEREIN.
GOODY for whoever you knew who had zero side effects. That is not me. And oh my goodness! Why would anyone in their right mind want to tell me worst case scenarios of something that they don't really know anything about????
I can eat an elephant one bite at a time. Do not tell me about the existence of the elephant or how big it is. BITE YOUR TONGUE!!! I assure you, I DO know what is ahead of me.
Rule 3 - It is all about me right now - I cannot help you feel better about your neighbor, friend, whoever. My job right now is 100% to take care of me. I cannot afford to care one whit about any of your problems in dealing with my situation. Sorry - but that is fact.
I am not, by nature, a selfish person and surely you are aware that women as a whole are socialized to be more concerned with others and to put ourselves at the bottom of the list. I am now #1. Frankly, I may stay up there at the top of my list. (It really is more like number 3 1/2 behind God, my husband, my sons.....)
It is NOT helpful for you to share how badly you feel about whatever. I cannot help you right now. It is NOT helpful to hear the horror stories OR the breezed through with flying colors stories. Leave them at the entrance BEFORE you come in to my circle.
What if I have zero side effects? YAY YAY YAY YAY YAY YAY!!!!!
What if I have every side effect known to womankind? Well fooey.
Surely somewhere in between is more likely.
I have noticed that people who have actually experienced cancer and chemo are supportive and NOT forthcoming with information unless asked specifically. They know. The wrong information can be crippling, debilitating, depressing. NOT HELPFUL.
They know - a kind word of support and offer of help is all it takes. It is encouraging. It is a battle that each individual has to fight on their own terms. Why on earth would you want to take away the weapons I must have in order to fight my battle?
I'm telling you now, you may be labeled a platypus (because a platypus just doesn't fit in anywhere) and I may have to ban you from my circle. I have already advised people who are in my inner circle that If I use code word platypus that means "Get this person away from me!! NOW!!!"
I don't mean this unkindly, I truly do not. I must be kind to Melanie first right now. I am going to assume that what ever you say to me your intention is one of support, love, encouragement, kindness. I am, however, going to claim the right of the warrior I must be to eject you as if you were an enemy when it endangers my success or attitude of health and peace and calm.
It is imperative that I guard my peace. It is imperative that I win this battle. I release you in love if you cannot play by my rules.
This is MY "game" and MY "rules" and MY battle.
The fight is on.
Tomorrow I have the MUGA test - what a name! It means Multiple Gate Acquisition - it tests the functionality of my heart. Is it pumping adequately.
Chemo starts Thursday. I am a little anxious about it. The CT scan indicated I have no "random" cancer elsewhere in my body - that is good. The bone scan indicated I have good strong, healthy bones - THAT is good. The MUGA, or heart scan WILL ( I insist) indicate that my heart is strong and healthy and pumping most fabulously! That will be good.
See, chemo is very, very bad for you. It is what will kill the cancer and greatly increase the likelihood I will stay alive and healthy, but it is very, very bad for you.
I am not going into all of the details here, gentle reader, as you will likely be bored and /or forget anyway.
I will tell you that my cancer is at least stage 3 - oh that's good "at least!!" - highly aggressive, and that I am firmly on the carousel of cancer treatment.
Yeah, yeah, I know - chemo hasn't started yet. Nonetheless I am firmly on the carousel, the attendants just haven't started the real ride yet....
I made cookies yesterday because I remembered how tasty they were when I made them in early January (accidentally discovering that Oatmeal Chocolate Chip Cookies are WAY better than Toll House Chocolate Chip Cookies!) and I figured I might want to enjoy that before I can't taste things very well!!
I have done my research and that is one of the many exciting potential - indeed, probable - side effects I will get while on this carnival ride...
I guess the real point of this post is to advise people who may (or may not) be interested about the suggested guidelines for how to talk to a cancer patient. These may be updated as I go through this ride.
1. Keep it simple, sincere, and in YOUR personal, actual experienced knowledge base. For example "I'm sorry to hear your news. If there is something I can do, please let me know, I will keep you in my prayers."
which leads directly to Rule 2
2. Do not under any circumstance feel free to share from what is NOT in YOUR personal, actual experienced knowledge base. For example "Oh, my neighbor/cousin/sister/some stranger I randomly met had exactly what you have and she/he (option1) never had a moment's problem with chemo! (option2) threw her guts up every minute of the day for 59 years, lost all her hair, was in acute agony for 90 years" etc., etc., etc. You get my drift.
3. It is all about me right now. This is for my survival and best interest.
Why do I post these 3 simple rules?
Rule 1 because this is ALWAYS the best tack to take. If I just hear a kind word of support, prayer offered, help offered - believe it or not that DOES help.
Rule 2 because - PEOPLE!!! I have researched my situation. I have spoken to my doctors. My husband and I are aware of what I can expect. You were not there. I have NOT told you everything - nor will I tell you everything. I am NOT stupid. This is momentous, and huge, and frightening what I face and YOU DO NOT KNOW WHAT IS ENTAILED HEREIN.
GOODY for whoever you knew who had zero side effects. That is not me. And oh my goodness! Why would anyone in their right mind want to tell me worst case scenarios of something that they don't really know anything about????
I can eat an elephant one bite at a time. Do not tell me about the existence of the elephant or how big it is. BITE YOUR TONGUE!!! I assure you, I DO know what is ahead of me.
Rule 3 - It is all about me right now - I cannot help you feel better about your neighbor, friend, whoever. My job right now is 100% to take care of me. I cannot afford to care one whit about any of your problems in dealing with my situation. Sorry - but that is fact.
I am not, by nature, a selfish person and surely you are aware that women as a whole are socialized to be more concerned with others and to put ourselves at the bottom of the list. I am now #1. Frankly, I may stay up there at the top of my list. (It really is more like number 3 1/2 behind God, my husband, my sons.....)
It is NOT helpful for you to share how badly you feel about whatever. I cannot help you right now. It is NOT helpful to hear the horror stories OR the breezed through with flying colors stories. Leave them at the entrance BEFORE you come in to my circle.
What if I have zero side effects? YAY YAY YAY YAY YAY YAY!!!!!
What if I have every side effect known to womankind? Well fooey.
Surely somewhere in between is more likely.
I have noticed that people who have actually experienced cancer and chemo are supportive and NOT forthcoming with information unless asked specifically. They know. The wrong information can be crippling, debilitating, depressing. NOT HELPFUL.
They know - a kind word of support and offer of help is all it takes. It is encouraging. It is a battle that each individual has to fight on their own terms. Why on earth would you want to take away the weapons I must have in order to fight my battle?
I'm telling you now, you may be labeled a platypus (because a platypus just doesn't fit in anywhere) and I may have to ban you from my circle. I have already advised people who are in my inner circle that If I use code word platypus that means "Get this person away from me!! NOW!!!"
I don't mean this unkindly, I truly do not. I must be kind to Melanie first right now. I am going to assume that what ever you say to me your intention is one of support, love, encouragement, kindness. I am, however, going to claim the right of the warrior I must be to eject you as if you were an enemy when it endangers my success or attitude of health and peace and calm.
It is imperative that I guard my peace. It is imperative that I win this battle. I release you in love if you cannot play by my rules.
This is MY "game" and MY "rules" and MY battle.
The fight is on.
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