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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