Tuesday, January 26, 2010

POST #13 - 2nd Transplant: Something Old Something New

NOTE: To Blog readers, I have elected to add a "word verification" step to leave a comment on my Blog (a word you'll be prompted to retype in a box). Sadly, I found several spam comments posted that required my removal, so, I'm told adding this step may keep the automated "spammers" away. We'll see. I hope it works. Sorry for the inconvenience.. Jody

If this is the first Post you’re reading of my Blog, (my most recent Post automatically appears first) you may want to read Post #12, then continue and read this one. Look to the right on this page.. and click on January, then click on Post #12.

It’s 4:45am, Wednesday January 20. I haven’t written since last Wednesday, January 13th.
So, I’m propped up in bed, again, with my brand new Asus Netbook, and my new Blackberry, and my iPod is charging. God, if I accidently spill water on my bed I’ll electrocute myself, or short out my toys!

My room is somewhat sunny. The view is much nicer than I had before.. I can see trees without leaves, white snow on the ground.. all that's missing are are silouettes of deer slowly meandering through the trees, sniffing at prizes to eat beneath the snow. I'm told that deer can be spotted now and then. So, as I reflect upon the past seven days from finishing Post #12, it’s been, again, interesting, encouraging and more tolerable of an experience so far.

What has made it more tolerable this time? I can think of 6 possible reasons, aside from the view from my window:

1. Fewer “unknowns”

I experienced all of this in October 2009, so, consciously and subconsciously--there is a sense of familiarity, which can translate into “calm” and may further translate into feeling better. (Such the scientist I am, eh?) But I do believe there’s truth in this.

Also, the professional word on the street is: 2nd transplants may go more smoothly than the first..however, everyone is different.

Before coming to Hershey, up front, I had to once again have a catheter placed in me at my hospital on January 7th. I knew what that would be like. (grrrrrrrrrrr) However this time, a different toy was placed--a less bulky catheter, as I would not be going thru the apherisis process again. Mine, pictured here, is a “power” type, meaning, it can withstand higher pressure than other catheters. (Yea, whatever..I’m just pleased that it is not as large or felt as awkward as the one I had last fall.) I can shower normally (with ample coverage of Press and Seal plastic wrap). Also, I did not experience the body stiffness after the catheter was placed.

2. Perhaps I am better prepared for the “hospital stay” and all it’s joys

Reasons for why this time has been more tolerable (or, less awful) could also be physical/mental preparedness for the stay. Having never been overnight in a hospital in my life until my first transplant last fall, I was not as prepared for living in a hospital room for 2 ½ weeks as I would like to have been. This time, I had my act more together. I brought trays to hold my “stuff” on my rolling bedside table, I had ample chapstick, hand cream and other things ready to go. I brought little juice bottles for my room fridge which seemed to help me as something I could keep down. I have mentioned my techno toys that I’ve brought with me now and what good are they without a handy dandy power strip, so I tossed THAT in my duffle bag. (I’m just TOO brilliant for words, eh?) Having felt so poorly last fall, I wasn’t sure if I’d be reading, so, I was more particular about what I brought along this time. Minimal clothing of course--last time I brought scarves to wear on my head (what was I thinking??!!) Forget it, this time, no scarves, just the natural fuzzy head, however, multiple pairs of pj’s are a must and a robe + slippers. I’m fortunate, my sister was with me again each day, stayed at Hope Lodge and could launder my clothes. Hospitals will always furnish gowns..but, I’d rather have my own bed clothes. I think the more I prepared for and “thought out” the hospital stay, the more in control I felt…and, thus, I was less stressed out,

3. I have not felt “as sick” as I did during the first transplant

Well, this has certainly made a huge difference in why this time around is more tolerable. From the beginning of my stay, Day One was a lot better because I DIDN’T have an incapacitating migraine as I did in October. Most likely the reason for that was stress. This time, maybe I was just less stressed out. I knew what was coming. Been there, done that, as they say.

I also have not felt as sick in general this time, as there has been NO need for dilaudid, the mega mind-bending medication that kept me pretty wasted for part of the two weeks in October. So far, I have only become physically ill ONCE (the V Word) since I’ve been here. It’s incredible. YAHOO!

There are still daily episodes of nausea for which I receive compazine, I can be easily lulled into thinking “Gee, I feel GREAT!”, but all I have to do is picture a plate of scrambled eggs in my head, or lift the brown cover off of my lunch plate and get a wiff of whatever it is that’s waiting for me…and I’m a goner. I definitely don’t feel “normal”.

I’ve discovered the Magic Food and Beverage for Me: a grilled cheese sandwich and chocolate milk. I haven’t had this much chocolate milk since I was..oh Hell, how about never! I’m convinced--a few more days of this, and I’ll leave here with my skin sporting a deep tan. I love chocolate..and it just “works” for me, especially when it’s “pill time” for I have to take about 15 or so oral meds per day. Taking meds with water when water doesn’t taste like water, is rough. I even order chocolate milk every day on my menu selection and I’m now an official hoarder of chocolate milk. (hopefully it won’t lead to hoarding other things and I’ll wind up on that TV program…”Hoarders”.)

Yes, I’m always a bit deflated when one of the revolving door of wonderful nurses enters my room holding a bundle of blister packs which hold my pills..it’s very depressing. But, I must do what I must do. Last time, I had several rolls of lifesavers..I brought a bag of “gummy” lifesavers this time--and having something mildly sweet does counteract nausea, at least for me. My final splurge was buying a big handful of those Russell Stover choclolate covered marshmallow hearts that they have on sale right now as Feb. 14 is approaching. Chocolate covered marshmallow ANYTHING is like a drug for me..I love it. I wished they had the ones where the marshallow itself is flavored with chocolate..but, I seem to only find those as Santas around Christmas, or eggs at Easter. Nuts!

4. The SCT Process -- Been there, done that, sort of.

The process of receiving chemo (melphalan) the first day, January 11th, was again, familiar. It may have made this experience more tolerable. I knew what was coming. However this time, I chewed and crunched 5 cups of ice before, during and after the chemo was administered, for about an 90 minutes. I have one numbed mouth, that‘s for sure, to the point where I was slurring my words. In October, I don’t believe I downed as much ice. Unsure to what degree this fact has contributed to me NOT getting another case of mucositis to date. Mucositis is severe inflamation. I’m neutropenic as of today (white blood cell count is 0.1..the ol’ immune system is pretty much cooked) so, mucositis could still be coming, but I’m thinking positive thoughts. Mucositis often happens a week or so after administration of melphalan..as it wipes out quickly reproducing cells (mucus). The G.I. track is effected. We’ll see what happens in the next 5+ days remaining) I have had not one mouth sore or any throat irritation whatsoever!!

The SCT infusion process went well last week. Picture below shows a close-up of the stem cell cooler that is wheeled into my room with two little frozen Jody StemCellsicles. (the cooler looks sort of like a caterer’s vegetable steamer). The technician then takes one pack of my cells out at a time and warms it, and quickly puts them into the syringe. I believe the cells do not have a long life if unfrozen, so, there was no dawdling in any of this process.

During and after the infusion, to keep my mind occupied, I had an opportunity to talk further with my physician. I asked him, “Now, if I were to have the melphalan and NOT receive my stem cells.. would it take me several months to recuperate versus weeks?” He replied, “Doing a stem cell transplant--meaning giving you your own or a donor’s stem cells-- is a “rescue” from receiving the melphalan. Melphalan is a lethal dosage.”

Well, HEY now. As you can imagine, my eyes corked out like Daffy Duck’s when he’s surprised by Elmer toting a gun, when I heard the L word, in this instance, “lethal”. I started to do an internal mantra about this new bit of news.. .”ok Jody.. it went well the first time last fall…melphalan did it’s thing and the stem cells did theirs..ok,.ok..check. So, THIS time should be fine; My stem cells “know what to do” when they enter my body….ok..ok..” My 5 second panic attack subsided. Yep, “lethal” sure does command your attention. I had trust in the process though,

I also learned if I were to need (at some point in my life) an allogeneic transplant, meaning donor stem cells--my blood type would permanently change to my donor’s blood type. Wild, eh? Makes sense though.

5. Great clinical care

The fifth thing that made this more tolerable, is that I continue to have great confidence in my physicians at Lehigh Valley Health Network, Dr. Eliot Friedman, and at Penn State Hershey Medical Center, Dr. Giampaolo Talamo. I happily visit each at their respective offices and communication is always open between me and each of them--and, they communicate with each other as needed as well. They always make time for me. I walk into my appointments with my typed list of questions, mention the searches I’ve done on the web about various treatments or medications, and other questions that I have which could be totally out of left field (Inquiring minds want to know!).. And we have a dialog. I have never been pushed into something I didn’t want to do or experience and my questions have always been answered. They, too, provide information to me and ask questions in a direct manner, --I prefer that. It’s my life, after all..not a time for being wishy washy and sugar-coated.

The nurse transplant coordinator at Hershey, Mitzi Lowe, has also been an integral part of my high level of satisfaction with the transplants. Mitzi follows transplant patients for Dr. Talamo in every possible twist and turn, producing calendars, making appointments, advising regarding medications, etc. She’s always available when I call--I swear, she must have a communication micro chip implanted in her, for she responds so quickly when I attempt to reach her, no matter how I try to connect, phone or email.

The nursing staff and nurse assistants at Hershey are second to none. Totally professional, intelligent, cordial, kind.

Similarly at Lehigh Valley, the staff at Dr. Friedman’s practice are spectacular, Stephanie Sharma, and too many folks to mention. Just fabulous.

6. Luck, prayer and good energy

This is the 6th (three-part) reason why perhaps, this time around, this process has not been as grueling. Every patient is different, thus, MM effects people differently. So, that’s a generic kind of “luck”. I’m also huge believer in mental attitude, prayer and giving and receiving good energy about whatever maybe happening in one’s life.
I’ll end this post to my Blog for now. I may add on to this before I am discharged. Thanks for reading.

Today is Monday January 25th

The past five days have been fairly uneventful, and I am grateful. Even though the nausea is with me 24/7 in the background, and it is more pronounced after each meal.. it pales to my experience in October, in a good way. I've still only required anti-nausea medication a few times, which is great.

Each day I've been visited by a physician and Oncology Fellow, as well as the transplant nurse practioner--they have all been pleased to hear of my status, and that mucositis simply never reared it's awful head this time around. I've been diligently rinsing with saline several times a day, along withe prescribed 4x per day "nystatin", another med which helps to ease or prevent the mouth sore / mucositis situation.

I'm feeling pretty good, though I have stiffness/soreness in my bones, probably from the daily Neupogen injections which stimulate the stem cells.

I'm delighted to report that about an hour ago, I was told that my counts were at a level where I can be discharged TODAY, the anticipated penciled-in day. (last October my stay was extended three days).

I can't express in words how thrilled I am. I've whirled around packing my belongings and I'm waiting anxiously for my mother to pick me up in the glorious rain to take me home. My netbook computer is the only thing I haven't packed up, techno geek that I am, I guess.

In closing, I remain to be grateful that this second transplant was more tolerable than last time. For those who have MM and are reading this.. you may be fortunate and have a transplant that may, too, be just fine even if it's your first (and only) one. All I can suggest is to be prepared in all the ways that you can possibly be. I hope perhaps a few things from all of my postings in this Blog may be helpful to you. And for all who are who are reading this, thank you for your kind thoughts, prayer and energy.

Now let's all go, and LIVE!

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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 know..it’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.


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.

Want to read earlier posts? Click below on “Older Posts” and it'll take you to the top of this page. See older posts when you click on September, October or November. They're in numerical order.

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