POST #12 – Between Transplants – Stuff I’ve Experienced and Learned

Today is Wednesday January 13th 2010. I am an inpatient at Penn State Hershey Medical Center for my second autologous SCT (stem cell transplant using my own previously harvested cells) following a “tandem” protocol. The second SCT was recommended to occur during the first six months after the first–the earlier part of those six months, the better. I’ve been here in my room on the 6th floor in the Transplant Unit for two days.

I want to do a little dot-connecting between my Post #11 in November, or in television–known as the previous episode–I was advised to take several weeks of rest after my October SCT, and in my case, it wound up being about four-plus weeks before returning to normal schedule of work / home life. For me, this meant returning to work on December 2nd.

The next few paragraphs in this post will focus on post-SCT clinical experiences and personal thoughts. Hopefully, this may be helpful to readers who have MM or may have a loved one for whom they are helping in their care journey, or, if you just feel like reading something.. it’s all fine. This is my perspective from my own experience, this is what my Blog is all about.

Many of the pamphlets and guides I have read which are dedicated to the patient and the SCT experience note that a patient may not truly feel “normal” until about six months following a transplant because of how it effects you, systemically. However, it doesn’t mean one cannot return to work, but it may mean as a human who’s gone through a pretty heavy duty experience, definition and timing of when one “feels normal” is relative.

Normalcy for me had not arrived yet at a personal level, (and obviously derailed by the second transplant experience) but basically, yea, I was normal “enough” in four weeks post-transplant. December 2nd was my official day when I declared “normalcy”, marked by happily marching back to work.

Initially, I thought I wouldn’t need all of that time to rest in November, but I did. So I put away my Linda Carter outfit and rested. I was told I could resume normal activity, but my system was still not “back” yet. I deliberately stayed away from all things that could make me sick..especially people. When I had to have blood tests and doctor’s appointments at my hospital in November, I wore a mask on most occasions. I also wore a mask in grocery stores. I mean — who cares if people stare at you with a mask? A little intrigue of the germ-free kind. And without saying, I washed my hands (and still do) like a textbook obsessive compulsive. I didn’t want to catch a flu germ that would take me down after I’d gone through all of THIS!! No WAY!! I’ve been lucky..I haven’t caught any cold or flu in at least 8 months.

One follow-up piece, post SCT, was for a follow-up Bone Marrow Biopsy (BMB) on November 30th. I’m thrilled to share this biopsy was a “nothing” as far as pain or discomfort. Being fairly direct when I speak to my physicians or nurses, I said to my physician..”I really don’t want to have any pain with this..what can we do here?” I was given 1 pill of morphine and also 1 muscle relaxant. NO PAIN, NO NOTHING!! My physician’s technique, I’m sure, was also a huge part of it, however, anyone reading this who may have a BMB in the future, don’t be shy about pain medication. Why suffer? Lordy! Speak up!

The report came back a few days later and Dr. Talamo, my Hershey physician, was a bit disappointed that it indicated 11% disease. When I met with him to discuss, we talked about that a bit and he always strives for “the best”, and the closest to a “cure” state as possible. I get it now. “Disappointment” was relative to that goal. He added several up-notes, that I’m basically responding well, and that often patients who are not in “complete or almost” remission at this time after their first SCT, fair even better with the tandem SCT protocol. Sounded good to me. And, he put me on a “bridge” regimen of meds in December: including one 14 day cycle of Revlimid, and (I think…brain fade..) it was 4 treatments of Velcade, that is pushed into an I.V. after I’ve had saline for about 30 minutes. I also took 20mg of dexamethazone on the “Velcade day”, and 20mg on the day after Velcade. All in all, no side effects worth mentioning–I was used to the red-faced dex side effect and some minor constipation–but no big deal.

So, getting back to the 11% disease conversation..I talked with him about the reliability of BMB’s.. as a needle is inserted in ONE place in your body/bone to extract cells. Myeloma cells cluster here and there. So.. is it 100% reliable? Yes and no. Another area may have revealed 3%, yet another..maybe higher than 11%. But–it’s still real data–it’s something. Then I asked him, “OK, let’s say, no matter what, I wind up with 11% disease..and NEVER lower, to a more desired 5% or less, which is considered in or near remission.. CAN I LIVE at 11% disease, or will I die?” Answer: I can live with 11% disease. Well, that sounded pretty good too. Also..I started out in April 2009 with a diagnosis at 80% disease.. so, the combo of medications and SCT has been collectively positive, for sure!

As those who have MM’s all about watching numbers.– for me, it‘s IGG, M-spike, etc. If numbers climb, another intervention is introduced.

November came to an end, and my declaration of normalcy was about to begin. I was going to begin the cycle of medication treatments, and time to head back to work. I don’t think I have mentioned this yet, but my job is as a Sr. Organizational Development Consultant for Lehigh Valley Health Network in Allentown PA, about an hour or so north of Philadelphia and under 2 two hours from New York City. It’s a fabulous hospital and organization, and my job is very rewarding at many levels.

The day came of my return to work, wearing new hair (a great wig) and all.. It was, admittedly a little surreal on that day. I had never been away from any job I’ve had in my life for an extended period of time. It was heartwarming to have friends and colleagues come up to me and inquire how I was doing, happy to see me. It was just wonderful, really. I think that experience (returning to work and talking to people) is the continuing part of the wellness process within all of us that move through illness or other life-impacting experience. Positive energy works..I’m 100% certain.

Reconnecting with people after an illness, I believe, can also put other people at ease within themselves about things that can be, to put it bluntly, scary. Cancer, I‘d suggest, can be put into that “scary“ bucket of life. As I reconnected with people..perhaps some of the internal emotions and thinking of folks I ran into may have been… “Jody, looks good…She doesn’t look gaunt or fragile. She doesn’t seem “sick!” Or the bottomline of it all: “She’s ALIVE!!” My resurfacing back into the flow may have reaffirmed for some people their private thoughts like “Gee, if she’s OK, then if it (cancer) would ever come close to ME, then I’ll be ok.”

We’re all human, right?

Having MM, similar to other conditions, means that ongoing doctors’ appointments, various tests and interventions, trips to the pharmacy and co-pays are now as routine as having coffee in the morning. I used to be a go-to-doctor-for-a-bad-cold kind of gal. Well, my world shifted off it’s axis almost a year ago now, after my 4/7/09 diagnosis of MM, and now with the pre/post SCT stuff, it’s in another solar system. I’m a member of a New Club, for sure.

Interestingly, for years–in diners, in stores, or at family gatherings, I would hear people of an older generation talking about their own health or their friends‘ health. SO many stories. I naively thought to myself (moreso when I was MUCH younger than today..) “Gee, aren’t there other topics to talk about? What’s the deal?” How silly of me. I think about today, and how our country is struggling with healthcare at a national level, healthcare is no longer just a topic for the older generations, most certainly. Managing one’s own health or health of a family member is HUGE, no matter how you look at it.

What else was I doing in terms of complimentary care, in relation to MM? I started taking my flax lignans again every day..a ground powder that resembles wheat germ in color and you place a tiny scoop in oatmeal, yogurt or whatever. Flax lignans, the ground SHELLS of flax seeds, are for building the immune system–better than flax oil. (Look it up.) I’m also eating a much more careful diet.. I eat a brazil nut a few times per week, loaded in Selenium, also an immune system strengthener. Fighting cancer (or, disease in general) is all very connected to the strength of the immune system. I talked with my doctor about curcumin as well–tons of stuff out there about it; and it’s being trialed, some 30% decent response..but, it’s not approved yet so I’m not going there.

I’m also eating more organic foods. I’m not turning into a total sprouthead though, going vegan, wearing gauze shirts, year-round Birkenstocks and ditching my make-up. Uh, no. (Not that there’s anything wrong with that, borrowing a Seinfeld line). I’m simply taking even GREATER charge and awareness of what I put in my mouth–one of the many things we can control. I’m more aware of foods that are canned or packaged in a country where I have my doubts about their food processing. I’ve read one too many legitimate articles of late that speak to the FDA and regulatory holes in the system with imported foods. Even Dole fruit is now all packaged in China or Indonesia. What is that about? I think we all know the answer, but, that’s a whole other Blog! (Ha!) There were recent reports in the news (Jan 2010) about other manufactured and imported non-food products, especially decorated plastics for children, that are made of known carcinogens. Read your packages, cans & boxes. I’m a rabid label reader, thanks to my mother. Yep, I wear my cheap drugstore readers on my head in the supermarket all the time. Funny, can’t feel them on my head when I’m wearing my wig!

Building the immune system is in our own hands in many ways. Have you read Dr. David Servan-Schreiber’s book entitled “The Anti-Cancer Diet”? I picked it up & couldn’t put it down. Wait till you read HIS personal story. You’ll want to just blowup your refrigerator and pantry and start over. I did a two-second Google search just now as I am typing this and found this website, below. There’s a lot out there about this book though. Go to the bookstore and page through it. An academic physician researcher who was shockingly diagnosed with a brain tumor and he took charge of his own plan. It’s not a typical “cancer/health” book.–introducing-healthy-new-way-life.html

My hair has begun to regrow.. I have ¾ inch light brown soft fuzz all over my head. Sort of like soft duck feathers. My hair started to grow in the middle of December. At first it was weird seeing the regrowth..I was SO accustomed to No Hair, the nice clean scalp. Then..I’d look in the mirror with this crew cut thing emerging..I said to my family, “Good God, I look like some radical.. All I need is a few dozen piercings and a wicked tattoo and I’d be all set!“ It seems to be coming back evenly versus patchy.

My eyelashes were quite sparce by the time I returned to work, and my eyebrows were quite thin. Now, both are back and are fairly full. I’m unsure what Melphalan will do this time..if I will lose all my hair on my head, or, if it may “thin”–which the latter is what is stated when I’ve read a description of side effects of Melphalan. None of that matters really when you buy a decent wig, (ha!) see below. Fuzzyhead and Wiggy:

So, now I’ll close out this Post #12 to my Blog. The next one will be about the actual 2nd transplant process and more things I‘ve learned. Thanks for reading.

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