Take note...I said "wine-less" not whine-less...and believe me, there is a difference! Rest assured...there will be some whining in the next few months!
So... the other day I get this yellow envelope from BU Medical Center. Good things come in small packages right??! Sometimes.
It turns out that the envelope contains all of my test results from my 3 day evaluation, as well as my "personalized treatment calendar". I think subconsciously I was really hoping that they had made a big mistake and that my test results showed no amyloids, but... no such luck.
Anyway, here's what the "plan" looks like...(on paper anyway) Don't worry, I'll spare you the gory details:)
May 4th-June 4th - Velcade and Dexamethasone - a lovely chemo /steroid 'cocktail' (hey a girl can dream can't she??) This will be my 'pre-treatment' to get me started until Bret's High School Graduation on June 6th. (I can't miss that!) Patients who have had this treatment in the past have also shown durable and rapid response to the HCT/SCT that will come next.
June 9th - June 13th - Moving from Easton to Boston for the next 6 weeks. Meet with my team of doctors again at BU, as well as a nutritionist who will outline a very 'interesting' neutropenic (low bacteria) diet for me. Apparently after I get chemo, I cannot have any fresh fruit or raw vegetables, stir fry, juice, yogurt (unpasteurized anything!) and lots of other healthy things that i eat on a regular basis. What does this mean??? Fenway Franks with spicy brown mustard? (It is June afterall! and Fenway is only 3 blocks away) Not sure, but I have a funny feeling i won't feel much like eating anyway! That ought to be an interesting meeting. Oh yeah...I also get a double catheter put in my chest to make it easy for them to give...and take, my blood for the next month (whine) and growth injections for my invaluble stem cells. Apparently someone forgot to tell them.... I don't do NEEDLES, let alone tubes sticking out of my chest!!
June 14-June 19 This week, after they have given me 2 more days of growth injections, my stem cells will have spilled out into my blood stream and they are readily available for the taking. Over the course of 3 days I will be hooked up to a very cool machine for about 5 hours each day. The Apherisis machine will 'harvest' my stem cells (actually the whole process is quite fascinating!), then they will be frozen until I can get them back again. (And I get to eat all the ice cream I want beforehand!!) Oh yeah...they also send in a psychiatrist to check on me and see how I am handling everything. (careful now...I can hear some of you now..."its about time!") I hope no one else is planning on seeing him later that day:)
June 20th - A trip to the hairdresser...Chemo will start Monday so they have gently suggested that I should think about getting rid of all my hair now so I don't wake up next to "cousin IT" next week. After today, I can't touch a razor for a while. I'm told by others who have been thru this, that it can be fairly traumatic when your hair starts coming out in clumps, and this way I can donate it to something like "Locks of Love". Fred is counting on my 'extensive' hat and scarf collection coming in handy right about now. Frankly i think its just an excuse for me to 'invest' in a few more! (mmm...I think I see shopping in my future.)
June 22nd-23rd I have arrived! Chemo-ville! 2 days of bittersweet High Dose Melphalan. Need I say more? This is the stuff I dream about. (Actually they're nightmares.) This is where the wine would really come in handy too don't ya think??...but...they've cut me off! (Wine and chemotherapy both get metabolized thru the liver. Guess which one wins??!) ( whine)
June 24th - They call this my second Birthday! or Day 0. Today I get my stem cells back. Except now the BU team is the one giving the blood instead of me! My previously frozen stem cells are slowly re-infused thru my catheter so that my body will begin to grow all new red blood cells, platelets and white blood cells...and hopefully 'amyloid free'! Gee...if I get stem cells for my "birthday" this year, what can I get for a gift on my "birthday" next year??? (maybe something else in a small package??) Just a thought...
June 25th - July 1st This will no doubt be the toughest week of all. (whine, whine) Chemo kicks in and takes over for a while until my blood starts making a come- back. My WBC, RBC and platelets all get to take an extended cruise. All I get to take are some very long naps! I am immune to nothing!
July 2nd-10th More growth injections, Velcade, and lots of rest. These are the crucial weeks during which my blood gets reacclimated in my body, hopefully multiplying daily and enabling me to get stronger. Barring any unforeseen 'events' I will be able to go home to Easton at the end of this week and begin my "100 recovery days". They say that's about the time it take for your body to regain strength, blood counts return to normal, your appetite returns, etc.
...bring it on!
I'm ready...(mostly),... anxious to get the best possible treatment, and hopeful that this aggressive treatment will allow me to make amyloidosis a thing of the past.
Today is another beautiful day!
Cheryl
Thursday, April 15, 2010
Wednesday, April 7, 2010
It's my blog and i'll cry if i want to...
So…I decided to start this blog about my “amazing amyloid adventures”. Wiser folks than me have said it’s something really good to do because others can track your progress thru the course of treatment and post little notes of encouragement if they want, and that its somewhat therapeutic as well…(God knows I need that right about now!) Maybe that’s why they were so ‘encouraging”(??) Anyway, now that I’ve had a little time to process the “news” about my future travels thru chemo-ville and beyond, I thought I would share it with anyone who cares to ride along…
Not sure how this is all going to work, but I love the idea of this being “free speech”, the good news and the bad news, and a personal journal (venting?) of my campaign against this rare, yet fascinating disease: Primary (AL) Amyloidosis. Yes I said “campaign”. Fortunately for me, I am running unopposed! Everyone is on my side…my family, my friends and my God. Sure, I suppose you could say that I am running against myself...except I’m not. I’m actually on the winning side, my blood cells just don’t know it yet. But they will …soon enough.
For those of you who are just joining me on the trail, my story actually began last year when I first noticed that after working some long, (yet very rewarding) days at Easy Dinners, my ankles appeared to be severely swollen. This happened out of the blue one week in April and continued to plague me into May at which point I sought an opinion other than my own. (mmm…)
And so it began…back and forth to the doctor and the labs for the next 7 months. After countless tests, ultrasounds, and frustrating dead end hypotheses, it was determined that I needed to see a Nephrologist because I was leaking 10grams of protein a day from my kidneys! And my cholesterol was over 680!! Not that I even knew what that meant at that point, other than severe edema. So off I go to see Dr. Li Li Hsaio from Brigham and Women’s Hospital. What a gem! I will forever be grateful to her for catching this early. A kidney biopsy subsequently revealed the Amyloid Protiens in my kidneys. That was soooo not a fun phone call to get! Nor the most pleasant Momo-logue to have with my kids!
What the heck is Amyloidosis???...off to the internet…(isn’t that what google is for??)
BIG Mistake! Waaay too much information and not all of it good. But - I couldn’t help myself.
Amyloidosis is a group of diseases in which one or more organ systems in the body accumulate deposits of abnormal proteins known as amyloid. There is no known cause. The amyloid proteins originate in the bone marrow and travels thru the blood stream to various organs. The incidence of primary amyloid is estimated at 8 out of 1,000,000 people.
I would encourage you to visit these sites if you are interested in learning more: www.amyloidosis.org, www.amyloidosisresearchfoundation.org, or www.bu.edu/amyloid. Its actually pretty interesting stuff.
This disease is rare and sooo few people (based on info from other patients…even in the medical community) are aware of it. As a result patients are often undiagnosed for too long. The last 10 years has seen great inroads in the research for cause and more effective treatment options. Fortunately for me…we caught this early. See…I’m up in the polls already!
Then it was off to the BU Amyloid Treatment Center, one of a handful of places in the country who have pioneered research and treatment for this disease. We are incredibly lucky that this place is just a short car ride away.
Here’s where my adventure really begins…(talk about a roller coaster ride!!) 3 days of evaluation at the BU Medical Center Amyloid Clinic confirmed (after lots of yucky poking with needles!) the following:
• I do indeed have AL / Primary Amyloidosis.- bad news.
• It is not genetic - good news, (My kids wanted to have a party!...me too).
• It is currently present in my bone marrow and kidneys. All my other organs are so far unaffected by amyloids and very healthy - good news
• I am at a world renowned medical facility that has a proven success record for the
treatments to get rid of all the conniving little amyloids running around in my body - great
news.
• The treatment over the course of the next couple of months (Low Dose Chemo
pre-treatment, followed by High Dose Chemotherapy and a Stem Cell (my own) transplant
(HDC/SCT) will make me really sick and I will literally and figuratively be pulling my hair
out - bad news.
• I have an incredible husband, family, friends and God, who will hold my hand thru this
adventure, - great news.
• The outcome of the treatment...I will grow all new blood cells (this time hopefully without
Amyloids!), new hair and get stronger (and blonder!) than before - Complete Remission! -
Great news!
So there it is… my first day of blogging…and now you know.
You know the good news and the bad news. You know basically how I’m going to deal with this…(BTW, I may need some reminders by the time week 4 rolls around!)
You know that I’m otherwise healthy, strong and determined. (and maybe just a little nervous!)
You know I’m competitive by nature…ok, strong willed…ok hard headed…whatever! Those are all positive attributes right about now and I’m using everything I’ve got to win this campaign!
I know that I will need some serious "Shoe therapy" when this is all said and done. (for those of you who don’t know what that is… shoe shopping can be a “cure all” for whatever ails a women at that moment in time! One can never have too many pairs! And no…Nordstrom’s did not pay me to say that!)
I know that I am incredibly blessed to have Fred, the kids, family and friends to laugh, cry and pray with me in the months ahead.
I know that I will need to plan a serious international soccer vacation for Fred when this is over!
I know that eventually i will have to endure another Bone Marrow biopsy...(they will have to drag me in next time!)
I know there is a reason for all of this…i just don’t know what that is yet…
I know that God would not have allowed this to happen to me if he didn’t think I could handle what lies ahead, and that he’ll be with me every step of the way.
Cheryl
Not sure how this is all going to work, but I love the idea of this being “free speech”, the good news and the bad news, and a personal journal (venting?) of my campaign against this rare, yet fascinating disease: Primary (AL) Amyloidosis. Yes I said “campaign”. Fortunately for me, I am running unopposed! Everyone is on my side…my family, my friends and my God. Sure, I suppose you could say that I am running against myself...except I’m not. I’m actually on the winning side, my blood cells just don’t know it yet. But they will …soon enough.
For those of you who are just joining me on the trail, my story actually began last year when I first noticed that after working some long, (yet very rewarding) days at Easy Dinners, my ankles appeared to be severely swollen. This happened out of the blue one week in April and continued to plague me into May at which point I sought an opinion other than my own. (mmm…)
And so it began…back and forth to the doctor and the labs for the next 7 months. After countless tests, ultrasounds, and frustrating dead end hypotheses, it was determined that I needed to see a Nephrologist because I was leaking 10grams of protein a day from my kidneys! And my cholesterol was over 680!! Not that I even knew what that meant at that point, other than severe edema. So off I go to see Dr. Li Li Hsaio from Brigham and Women’s Hospital. What a gem! I will forever be grateful to her for catching this early. A kidney biopsy subsequently revealed the Amyloid Protiens in my kidneys. That was soooo not a fun phone call to get! Nor the most pleasant Momo-logue to have with my kids!
What the heck is Amyloidosis???...off to the internet…(isn’t that what google is for??)
BIG Mistake! Waaay too much information and not all of it good. But - I couldn’t help myself.
Amyloidosis is a group of diseases in which one or more organ systems in the body accumulate deposits of abnormal proteins known as amyloid. There is no known cause. The amyloid proteins originate in the bone marrow and travels thru the blood stream to various organs. The incidence of primary amyloid is estimated at 8 out of 1,000,000 people.
I would encourage you to visit these sites if you are interested in learning more: www.amyloidosis.org, www.amyloidosisresearchfoundation.org, or www.bu.edu/amyloid. Its actually pretty interesting stuff.
This disease is rare and sooo few people (based on info from other patients…even in the medical community) are aware of it. As a result patients are often undiagnosed for too long. The last 10 years has seen great inroads in the research for cause and more effective treatment options. Fortunately for me…we caught this early. See…I’m up in the polls already!
Then it was off to the BU Amyloid Treatment Center, one of a handful of places in the country who have pioneered research and treatment for this disease. We are incredibly lucky that this place is just a short car ride away.
Here’s where my adventure really begins…(talk about a roller coaster ride!!) 3 days of evaluation at the BU Medical Center Amyloid Clinic confirmed (after lots of yucky poking with needles!) the following:
• I do indeed have AL / Primary Amyloidosis.- bad news.
• It is not genetic - good news, (My kids wanted to have a party!...me too).
• It is currently present in my bone marrow and kidneys. All my other organs are so far unaffected by amyloids and very healthy - good news
• I am at a world renowned medical facility that has a proven success record for the
treatments to get rid of all the conniving little amyloids running around in my body - great
news.
• The treatment over the course of the next couple of months (Low Dose Chemo
pre-treatment, followed by High Dose Chemotherapy and a Stem Cell (my own) transplant
(HDC/SCT) will make me really sick and I will literally and figuratively be pulling my hair
out - bad news.
• I have an incredible husband, family, friends and God, who will hold my hand thru this
adventure, - great news.
• The outcome of the treatment...I will grow all new blood cells (this time hopefully without
Amyloids!), new hair and get stronger (and blonder!) than before - Complete Remission! -
Great news!
So there it is… my first day of blogging…and now you know.
You know the good news and the bad news. You know basically how I’m going to deal with this…(BTW, I may need some reminders by the time week 4 rolls around!)
You know that I’m otherwise healthy, strong and determined. (and maybe just a little nervous!)
You know I’m competitive by nature…ok, strong willed…ok hard headed…whatever! Those are all positive attributes right about now and I’m using everything I’ve got to win this campaign!
I know that I will need some serious "Shoe therapy" when this is all said and done. (for those of you who don’t know what that is… shoe shopping can be a “cure all” for whatever ails a women at that moment in time! One can never have too many pairs! And no…Nordstrom’s did not pay me to say that!)
I know that I am incredibly blessed to have Fred, the kids, family and friends to laugh, cry and pray with me in the months ahead.
I know that I will need to plan a serious international soccer vacation for Fred when this is over!
I know that eventually i will have to endure another Bone Marrow biopsy...(they will have to drag me in next time!)
I know there is a reason for all of this…i just don’t know what that is yet…
I know that God would not have allowed this to happen to me if he didn’t think I could handle what lies ahead, and that he’ll be with me every step of the way.
Cheryl
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