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
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Hi Cheryl,
ReplyDeleteWow...you sure got a schedule ahead of you...I don't recall getting much of a schedule at all other than "soon" this will happen or "soon" that will happen - I learned to dread the word "soon" because it was never soon enough for me. Sigh. (So impatient!) That said, these next few months will hopefully give you the rest of your life amyloid-less which will make it all worth it. Be gentle with yourself, Cheryl, and while the "plan" is in place on paper and it's always great to check off treatment days behind you (sooner this is all in the past and not in the future) it can be hard if everything doesn't go exactly to the calendar plan. Just building in a little psychic wiggle-room can be helpful :) It sounds like BU is an excellent medical facility and having trust in your medical providers is a huge asset. I'll be praying for so many things for you, utmost a full healing and uneventful PBSC (oh yeah...can't use the words uneventful and PBSC in the same phrase but you know what I mean!)
Hugs,
Vicki
Cheryl,
ReplyDeleteThanks for the detailed outline. It really helps to know what the schedule is. You have a beautiful way of writing. Keep up the positive attitude!
Love,
Margaret
Yay, Margaret sent me some idiot-proof instructions for commenting on your blogpost. You'll never get rid of me now, Cheryl and Fred. Just keep the posts coming so we can whine, joke, cry, and pray along with you. But with or without the blog, we'll be with you.
ReplyDeleteLove, Susan
Hey Cheryl,
ReplyDeleteToday you say CHEERS! to Velcade and Dexamethasone. Just remember our BC days [that's before children not your other BC days... :)-haha] Treat V&D like a Goombay (?sp) @ Killington Vt.. Chill it, stick it in a jelly jar and chug it...then yell I skiied better than Fred! & forget everything till tomorrow! Good Luck... Love, Caryl
Cheryl, thanks so much for posting all the info. I really do want to know. You are in my prayers. And I must tell you, reading your missives I can't help but think: I really missed out not having a relationship with you all those years after grade school! You're quite the wonderful person! ~ Jacquie
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