This is an old post I forgot to publish - the chemo brain is certainly coming back!
If only it were as fun as the fancy free Vanilla Ice song... my ICE is less sexy and a bit more tiring and toxic. Today is my third and last day of infusions until April 13 (thank god). I do have to go into the hospital tomorrow to get my Neulasta shot, yes bring on the bone pain.
All in all things have been going pretty well - I have been lucky enough to get a bed each of the days which makes it sooooooo much better, this way I can actually get a real nap and peace. However, my curtain mate is definitely snoring right now so I am thankful I brought my headphones for my afternoon nap.
My nausea is totally different this time than with ABVD - it is more a subtle belly ache that gives you the urge to vomit than a more constant wave of nausea. Last night for the first time I totally gagged but chose taking the Mesna again was a worser evil than dealing with the vomit.
Let me break down this Mesna business for you: in a nutshell I am intended to consume for three days 20mL of IV fluid. Yes, you read that correctly, I have been ingesting IV fluid that is intended to be put into the body intravenously. Every night, we have been coming home and B has been making me this "cocktail" of hot chocolate and Mesna (which if I was forced I would liken to battery acid, rusty nails and many many other disgusting compounds.) Being the genius he is, B commandeered my Magic Mouthwash (a lidocane based substance) to numb the mouth first, then has me coat the mouth in peanut butter and then endure the worst cocktail known to mankind.
To also put a bit of perspective around all of this, this stuff is so terrible they give you two doses -- one to consume and the other as a backup in case you vomit within the first hour. On the flip side, it is actually really crucial to the chemo process because it helps protect the kidneys and the bladder from bleeding and severe irritation.
Well I am getting super sleepy so it is time to sign off.
T
Monday, March 29
Friday, March 26
Sweet ICEd T
Over the past few months you have all been riding shotgun as T has guided you through her treatment. Since you are now a captive audience I hope you have your seatbelt securely fastened because I am about to hijack the wheel. Don't tell T though, she doesn't even like side seat drivers.
I am B in the previous posts. Now, as a southern boy at heart there aren’t many things I love in the world more than sweet iced tea. In a sweltering summer it provides refreshment to even the driest of souls. Yet in the early days of a New England spring (currently 37 feels like 27) it can become frigidly cold and I’ve had my fair share over the past few days.
In anticipation of what was to come early Tuesday morning my Sweet T began to slowly brew. At first simmering while holding on to the last glimmer of sunlight that we will call fertility. By noon it had reached a full boil and was nearly scorched by five as we were told that the ICE would be added the next day. Wednesday arrives and ICE is added as was prescribed. This has been an eight hour process for the past three days. Lucky for me I am able to leave the confines of the pitcher (the Moakley Cancer Center) which at times can be overwhelming to even the sturdiest of minds. The T has endured 24 cumulative hours of ICE administrations as well as the emotional stress of Tuesday’s events. If that weren’t enough an evening chaser in the 2 oz. form that many of us enjoy socially must also be stomached. However, I don’t think a buzzard could choke this down without gagging. Even after being scorched, diluted with ICE and tainted with foreign substances the T has remained as sweet as ever.
As much as I love Sweet ICEd T, I think I will hold the ICE from now on.
Wednesday, March 24
An unexpected turn of events
Greetings from the Moakley clinic, bay number 19 - I'm sure many of you are surprised to hear this! As was I!!!
Yesterday, March 22, I came into the clinic to meet Nurse D with the hopes that she would tell me I had a thyroid problem (I know what you're thinking... I'm crazy) to help explain all this ridiculous weight gain. Unfortunately that dialogue wasn't scripted as I imagined. Instead of it being about medicines to help stimulate my thyroid, it was more along the lines that my friend Hodgkin's continues to get worse and is getting more dangerous everyday I go untreated.
My "many months" that I was given to decide on an appropriate fertility plan for B and I apparently was a bit of an over estimate given the more sobering news that my first six cycles of chemo did more damage to my fertility than we thought. I can't really explain how it feels to be told you have the time to preserve your chances of creating a biological match - an additional life partner and then a few short months later be told that your chances are very slim and the risk/benefit factor of survival is too high to continue with the fertility preservation.
After talking with our very accomplished fertility specialist Dr. T, to add insult to injury, it turns out my FSH levels are way above the "normal" levels for women my age. Essentially what this means is that the body is trying to stimulate ovulation but isn't getting anywhere with it. I think in even simpler terms the higher the FSH, the more difficult it is to get pregnant or to harvest viable eggs. This news was completely devastating especially on the heels of being told that chemo was an immediate plan of action.
Disclaimer, this paragraph includes some difficult statistics. Please be prepared.
After meeting with Nurse D, we learned from the studies that the survival rate of relapse Hodgkin's patients being treated with ICE and then going into transplant was a mean of 65%. Obviously to both B and I this seemed very low. If we continued to hold off on treatment, I would be reversing those survival rates and making the chances of survival much more slim.
So after being pretty blindsided by all of that news, I finally conceded at about 5:30 p.m. and decided to progress with the chemo and wave goodbye to my fertility chances. Of course some of you may be thinking that there are always miracles, which there are but with my luck lately I'm not crossing my fingers for anything. B made a very compelling point to me that there are always other options for us to start a family but there is only one me - and if I'm not around for that than all the eggs in the world mean nothing.
Fast forward to today, where I plan to spend 8 hours in the clinic being infused with I, C and E, 2 things of Mesna (a kidney medication) and 1000 mL of saline - PLUS 64+ ounces of water.
Tonight I have to take home a dose of the Mesna that I have to drink. I will keep you posted as to the results.
T
Yesterday, March 22, I came into the clinic to meet Nurse D with the hopes that she would tell me I had a thyroid problem (I know what you're thinking... I'm crazy) to help explain all this ridiculous weight gain. Unfortunately that dialogue wasn't scripted as I imagined. Instead of it being about medicines to help stimulate my thyroid, it was more along the lines that my friend Hodgkin's continues to get worse and is getting more dangerous everyday I go untreated.
My "many months" that I was given to decide on an appropriate fertility plan for B and I apparently was a bit of an over estimate given the more sobering news that my first six cycles of chemo did more damage to my fertility than we thought. I can't really explain how it feels to be told you have the time to preserve your chances of creating a biological match - an additional life partner and then a few short months later be told that your chances are very slim and the risk/benefit factor of survival is too high to continue with the fertility preservation.
After talking with our very accomplished fertility specialist Dr. T, to add insult to injury, it turns out my FSH levels are way above the "normal" levels for women my age. Essentially what this means is that the body is trying to stimulate ovulation but isn't getting anywhere with it. I think in even simpler terms the higher the FSH, the more difficult it is to get pregnant or to harvest viable eggs. This news was completely devastating especially on the heels of being told that chemo was an immediate plan of action.
Disclaimer, this paragraph includes some difficult statistics. Please be prepared.
After meeting with Nurse D, we learned from the studies that the survival rate of relapse Hodgkin's patients being treated with ICE and then going into transplant was a mean of 65%. Obviously to both B and I this seemed very low. If we continued to hold off on treatment, I would be reversing those survival rates and making the chances of survival much more slim.
So after being pretty blindsided by all of that news, I finally conceded at about 5:30 p.m. and decided to progress with the chemo and wave goodbye to my fertility chances. Of course some of you may be thinking that there are always miracles, which there are but with my luck lately I'm not crossing my fingers for anything. B made a very compelling point to me that there are always other options for us to start a family but there is only one me - and if I'm not around for that than all the eggs in the world mean nothing.
Fast forward to today, where I plan to spend 8 hours in the clinic being infused with I, C and E, 2 things of Mesna (a kidney medication) and 1000 mL of saline - PLUS 64+ ounces of water.
Tonight I have to take home a dose of the Mesna that I have to drink. I will keep you posted as to the results.
T
Monday, March 15
Five O'Clock Shadow
Today I sat, lathered, drank, read and repeated, and repeated (and repeated)... I'm sure you get the point. The tides, sands, sun and slides in the Bahamas have almost made me forget my worries (a few more Miami Vices and I should be getting closer), but then tonight I looked in the mirror and what I saw looking back at me was not my semi-tanned, freckled reflection staring back at me - but a five o'clock shadow!
Said 5o'CS belongs on handsome Italian men's faces not on female cancer patient's eyebrows -- or rather where they used to be!
That's right ladies and gents, my once inconspicuous, beautifully platinum eyebrows seem to be growing back (yay!) a much darker, almost black color (boo!!). Since my hair on my head hasn't prescribed to the cliche your-hair-grows-back-thicker-and-a-different-color mantra, I didn't think I was going to be subjected to its wrath. Why, with my luck, did I ever believe that I would be exempt?
I guess all I have to look forward to now is losing my new darker brows to the friendly "chemotherapy induced alopecia" and looking like that battered and abused drunk college kid (see blog post "Thank Goodness for Blondes")
Well it's off for more aloe lathering and bed...
xoxo
T
Said 5o'CS belongs on handsome Italian men's faces not on female cancer patient's eyebrows -- or rather where they used to be!
That's right ladies and gents, my once inconspicuous, beautifully platinum eyebrows seem to be growing back (yay!) a much darker, almost black color (boo!!). Since my hair on my head hasn't prescribed to the cliche your-hair-grows-back-thicker-and-a-different-color mantra, I didn't think I was going to be subjected to its wrath. Why, with my luck, did I ever believe that I would be exempt?
I guess all I have to look forward to now is losing my new darker brows to the friendly "chemotherapy induced alopecia" and looking like that battered and abused drunk college kid (see blog post "Thank Goodness for Blondes")
Well it's off for more aloe lathering and bed...
xoxo
T
Tuesday, March 9
Super Symptoms
Hey all-
I can't even begin to explain how obnoxious chemo is - considering the following: losing at least 12 inches of very thick hair, all of my pretty blonde eyebrows, my long long eyelashes, packing on 20+ pounds, losing all of my energy (but none of the sass) and not knowing if I will ever be able to be someone's biological mother you wouldn't think it could get worse. Well as I have learned over the past few days - it can always get worse.
Recently I have been experiencing extreme foot numbness and bizarre skin problems. About 6 weeks ago I noticed that when skiing my feet would go entirely to sleep. I only wish I could say it was like the you've-crossed-your-legs-for-too-long kind of sleep but this was the kind of can't-feel-the-feet-at-all kind of sleep. Then the numbness progressed just from skiing to most forms of cardio. Finally after many meetings they are attributing this lovely symptom to the Vinblastine (V of ABVD). Apparently this symptom is temporary and should dissipate with time. Let me tell you, it couldn't be soon enough.
Then on top of my feet being asleep, I have this awesome condition that the dermatologist is chalking up to "sensitive skin" that makes my skin super hot, itchy and occasionally develop bumps. Please, you really need to harness your jealousy right now. Apparently my condition is so NOT serious that today's dermatologist brought in 4 students to show them what "fine" skin looked like.
Oh well, hopefully the Bahamas will bring some joy and the pina coladas will numb my body in an un-Vinblastine side effect kind of way :)
T
I can't even begin to explain how obnoxious chemo is - considering the following: losing at least 12 inches of very thick hair, all of my pretty blonde eyebrows, my long long eyelashes, packing on 20+ pounds, losing all of my energy (but none of the sass) and not knowing if I will ever be able to be someone's biological mother you wouldn't think it could get worse. Well as I have learned over the past few days - it can always get worse.
Recently I have been experiencing extreme foot numbness and bizarre skin problems. About 6 weeks ago I noticed that when skiing my feet would go entirely to sleep. I only wish I could say it was like the you've-crossed-your-legs-for-too-long kind of sleep but this was the kind of can't-feel-the-feet-at-all kind of sleep. Then the numbness progressed just from skiing to most forms of cardio. Finally after many meetings they are attributing this lovely symptom to the Vinblastine (V of ABVD). Apparently this symptom is temporary and should dissipate with time. Let me tell you, it couldn't be soon enough.
Then on top of my feet being asleep, I have this awesome condition that the dermatologist is chalking up to "sensitive skin" that makes my skin super hot, itchy and occasionally develop bumps. Please, you really need to harness your jealousy right now. Apparently my condition is so NOT serious that today's dermatologist brought in 4 students to show them what "fine" skin looked like.
Oh well, hopefully the Bahamas will bring some joy and the pina coladas will numb my body in an un-Vinblastine side effect kind of way :)
T
Thursday, March 4
What Happened to Easy Decisions?
I am still in such shock that all this is happening again - that my body is still filled with chemo and I have to make a huge decision as to where I want to go to put so much chemo back in my system that it kills my entire system. Such high doses that they have to rebuild my bone marrow, one stem cell at a time.
Besides the fact that this will be time consuming, has painful side effects and can be very dangerous with a heightened risk of infection, it can also ruin my chances of ever having my own children.
B and I met with a doctor last week to discuss our options for a family we can't even fathom having right now. The standard options for IVF might not be an option for us because our doctor hasn't encountered a patient in my position. It seems to be the perfect storm almost: ovarian suppression for six months, four weeks out of chemo and having to go back into treatment in less than six months. These are all factors that Dr. T is concerned could cause problems for the "offspring" in the future.
Even larger than that, he is concerned about my health: how long do I have to wait? Can I afford to wait a few more months before I even start this next regimen?
On top of these two questions, I'm not sure how I feel giving up my chances to be a mom to get this whole cancer thing over with with sooner.
So tomorrow I go back in for my first round of testing to see where we stand. Keep your fingers crossed that the horizon isn't too bleak.
xoxo
t
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