Tuesday, September 29, 2009

POST #6 - Look Ma, No Hair

Today I finished Post #5 and Post #6 to my blog. 

What a difference a day makes. 24 Little Hours. My scalp had been sensitive / sore / tingling for days.. and bingo, the hair started to go. I expected it of course, and Thursday morning I'm brushing my hair..it just wouldn't stop coming out as I repeatedly cleaned my hairbrush. I was sort of chuckling at the whole thing. Running my fingers through my hair..and then lightly holding on at the end..and about 50 strands would come out in between my thumb and index finger. Long strands with that little root blob at the end.  It was like a trick. “Hey, look what I can do!”

It took me back to my childhood when I'd play with a doll that had bad hair, or perhaps was a cheap doll..the hair would just come out when brushed. Being an obsessively neat player-with-dolls..they always had to look nice...so I had to be gentle with such dolls. But this was wild—it was my hair!

My scalp didn't hurt any more or any less as my hair came out. My scalp just plain hurt, and lying on a pillow at night wasn't fun either, plus, I'd wake up to a layer of hair across the pillow case. How delightful. I took a few pics for posterity—really bad news. Not even blog-worthy. All I could think of was that I looked kind of like an Amish boy (though an aging, yet girly Amish boy), with the blunt cut hair, missing on top. But my Amish boy hair was not orderly. My hair came out in hunks. Uneven hunks. It was not a becoming “do” on moi.

Now I don't think losing one's hair is really so bad at all, in  the grand scheme of things, as most natural hair loss occurs evenly, and gradually. Not overnight and  “KAZAM!" People may have “thinning hair” or for men, usually on top, it may fade over time. (As an aside, I think bald / balding men are every bit as sexy as ones with hair.)

What expedited this process was my final hair-washing..and I ended up literally brushing most of my hair out of my head. Talk about a hairball. We're talking Guinness World Record level hairball.
On top of this, I had a two-day migraine, unrelated to my cancer medication. Just another thing that I get now and then..so, that wasn't fun—coupled with my state of hairballage.

So, I sported my girly Amish boy look for about three days, weathered a migraine and donned a little turban type cap to make my head more comfortable and to also serve as a hair-catcher (sigh). I couldn't take it any longer. I was shedding like a dog. Hair everywhere. It was nuts. So, today, Sunday September 27, I spent two hours removing what was left. I wanted all it GONE. What a job. I had no idea what it would take to shave one's head. Holy moly.

I didn't do this to make some statement, or pound my chest that I am woman with cancer and I'm shaving my head. It was just something that felt right, and I was determined. No tears (though I did have a tear during the first day of Amish boy hair hunk-outs...ugh..), I'm pretty satisfied with my new “do” or “un-do” as it is.  And WOW!.. Think of the dollars to be saved on hair “product”, hair cuts and hair lightening processes. (At least for a while anyway.) I have my new wig at home and it can wait there for me when I return. For now..I have scarves and such which are fine. And there's always the au naturel look -- I may even try that as well. So, here I be in a cell phone pic, un-retouched as they say:

Monday September 28 I start back at Hershey and have an I.V. of a medication called Velcade for a few hours. It's another chemo that may give me a side effect of numbness in fingertips/toes.. possibly some nausea, but that's TBA. We'll see. It's a Monday / Thursday regimen for the next two weeks.

At least today I feel great.

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Sunday, September 27, 2009

POST #5 - Let the Harvest Begin: Stem Cells-O-Rama

Today I finished Post #5 and Post #6 to my blog. 

Where I left off, stem cell collection was stalled.

This was disappointing. The visiting nurse came again to give me another 2 injections of neupogen. Neupogen was “doing it's thing”, as that previous night, I had such pain in my lower back for about 4+ hours, I thought I was going to go right into orbit. It was as though someone hit me with a baseball bat. The pain was odd.. it radiated in me in a wave-like fashion & took my breath away.. it seemed to pulsate in a cadence that matched my heartbeat. Or maybe I was just imagining it that parallel beat and I was losing my mind.. who knows.  No matter how I positioned myself in bed—it kept up.  I discovered if I walked around, the motion of walking was a distraction from the pain..but I was so tired..it was a toss-up to zombie-walk, or, to lie in pain. Awake most of the night, I drifted off at about 6am, woke up about an hour later and the pain had subsided. I thought to myself, there'd better be a ga-zillion stem cells floating in my blood stream by now or I'll be REALLY annoyed.

THRILLED to report that the stalled stem cell collection process became UNstalled.  I received “the call” on Tuesday September 22 that my white blood cell count had jumped from almost zero to 6.0 overnight! I was to report the next day at 8am.  I got another call 30 minutes later..and it turned into a “can-you-be-here-at-noon-today?”   I ran around like a rabbit gathering up my Ipod, magazines and food to nibble on, in prep for a 5+ hour process..and my mother and I raced over to Hershey Medical Center to the “blood bank” area. Yahoo!

In we walked to a large, windowless but bright room, with walls lined with neatly organized supply shelves, wooden cabinets, and important looking stuff; there were 2 beds – each with a dedicated machine that performs the magical apherisis process. A memory foam mattress was a welcomed “feel”. Ahhh. A cluster of nurses knew exactly what to do and how to do it, and were over-the-top friendly and connected to their patient and her needs: little ol' ME!

Unwrapping a sterile pack of items..one nurse methodically sterilized and connected a number of valves to my catheter tubes and proceeded to connect the machine to me.  It seemed almost like a religious ceremony—the only thing missing was cathedral music. The process began.  Painless. It was fine. I watched my blood travel through tubing and then back again. The tubes were warm.  (ok, I know..big deal... but how often do we feel our own blood traveling through a tube?) Hmmm.. A wheel was goin'round on the machine..a clicking sound...and various monitors, screens and buttons were lit. The nurses were like Star Trek's Lieutenant Uhura, pushing buttons, listening, analyzing. I was in fabulous hands. The centrifuge was spinning my stem cells into a place for future counting..or something like that.  It was doing what it was supposed to be doing.

And so it went. One hour. Two hours.. but it was unlike being connected to an I.V., getting chemo, where I could  walk'n'roll with your trusty I.V. pole and stretch my legs, head down the hall for bio breaks and such. Here, I was basically immobile when connected for this apherisis process.

I smugly thought I had beaten the system... deliberately not drinking much water the night before.  Duh. They're pumping saline into me..so, of course I'll have fluids. So..the ONLY option is the dreaded BED PAN. Such a stupid, minor thing. Nothing to do with my personal BHAG (Big Hairy Audacious Goal) of killing myeloma cells and righting what is wrong with me—the crux of why the hell I was in this situation to begin with. We're talking about a simple process of fluid elimination. It's just freakin' ridiculous though comically memorable nonetheless. I'll spare all you blog readers out there the graphic details, however, let's just say I discovered very quickly that for certain bodily functions, one's body is naturally built for vertical / seated behavior, sometimes such behavior does not transfer elegantly to horizontal behavior. In the process, you must simply blow-your-own-doors-off when it comes to modesty, and mentally box-up any hesitation, Fed-Ex it out of your room, because you must engage your brain that directs control to your body to accomplish the matter at hand.  It was unpleasant, but I accomplished.  End of story.

I wanted to find out who the white coats were wandering about the room. A Fellow; a resident; one pathologist introduced herself to me, reviewing the apherisis process, another came by with a medical student, quizzing her about what she learned in a bio physics course as it related to blood (the poor thing.. instant recall on the spot); she did quite well in her responses. Phones rang, things beeped, all seemed comforting in an odd way. Below is my view from my bed. I blended into the scene. It felt right.  (I didn't photograph the neatly stacked supply walls..as I may have included a view of a patient in the other bed..wanted to adhere to patient privacy):

And..this is me, IN my bed.. with the apherisis machine on right.. followed by a pic of a close-up of my cool “valves” connected to the catheter. Absolutely thrilling, eh? ;-) Well, perhaps of interest to those who come across this blog who have MM and are searching for experiential facts.

When it was over.. (noon to about 5:30pm) we went home..and I received a phone call that 3.8 million cells were collected, which was really quite good! However, more were needed.

I returned the next morning for 8am collection. My white blood cell count had risen to 14 which was promising. The same process as the first day. A fairly none-eventful session, except at one time, the monitor kept beeping.. the electronic lettered banner read “occluded. line.. patient side..” the nurses were all over it in a nano-second and after analyzing the possibilities.. they morphed from being Uhuras to Kirks and back again. Found there was a faulty connection and replaced it. It's interesting to be part of the action, the core,   The Action Doll.

It's great to be a patient in this century of “smart” equipment. I know that monitors have been around for a while of course.. but talking to the nurses who have been in their profession for over 25 years.. mentioned days of their training where they re-used syringes and such...sounds crazy today. Yea, you can have your “Good Old Days” when it comes to medical care. No thanks. Not when you're the end-point of valve & tubing spaghetti.  It makes you want to dig out a pen and write a check for continued research and equipment funding right then and there. Name a room? a building? Sure. How much? Where do I sign?

The day sailed along. Two more bed pan episodes but let me tell ya—I was a pro by then. A night & day difference from the first go-around. (no pun intended). Not even worth writing about. (thank God, yea, I know). Day was over, home by 3pm.

RING RING: phone call at 5pm. 8+ million cells collected, total, over the past 2 days! This is superb.. as 4 million are needed for my prospective tandem transplant (2 million for October 12, and if all goes well, another in January or February) and enough for two more down the road, because once your body has chemo..it weakens the viability of the stem cells if a “collection” was attempted again.

I've learned that should I need donor cells from another person, (if I did not have my own cells in storage) my sister would be my first option..but, even if all goes well, she may still only be a 25% chance of a “match” for this process. There are all these markers within the blood for stem cell matching.. it isn't a simple blood type match process and “you're in”. So..then people must turn to a National Blood Bank of stem cells.. and a search is conducted for a better match.  But I'm told there can be higher difficulty around how happy those cells are within my body.. perhaps I'd need medication to make them feel more at home. (Ick.) I'm happy the autologous process (my own cells transplanted back into me) is a process that seems to work, and is the path I'm able to take.

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Sunday, September 20, 2009

POST #4 - Delay of Stem Cell Collection

I knew that the dates going into all this were "floating" to some degree, admittedly though it was disappointing to learn today, Sunday September 20th,  my stem cell "collection" slated to start tomorrow is now delayed for a while, as my white blood count is 0.4.  It's supposed to be in the neighborhood of 4.3 for the collection to be "a go". 

We even had the blood drawn a 2nd time, just to be sure.. still waiting for those results, but, doubtful they'll change.  So, this means another week of daily neupogen injections, which will stimulate the stem cell growth and movement into my bloodstream. It'll  probably be in good shape towards the end of this week..so then collection would hopefully start later this week.. learned my count can rise fairly rapidly.  Well,  it is what it is.

The chemo I've already had, cytoxan, on the 10th & 11th, was a multiple purpose type of drug: It kills myeloma cells, makes my white count tank, and also aids the mobilization of the blood stem cells. It was a large part of the reason for my whimpy white blood cell count, and then coupled with my own inability to have a Cellular Spring-Back--but I think it's fairly typical.

Today is actually the first day that I can feel something happening in my bones.. on the road to discomfort. Actually, after a few days of being "in waiting", I'm sorta glad, oddly.  The neupogen is working. Finally feels like things are moving forward, though now just a bit delayed.

I think the chemo from last week is doing something as well.. my gums are sensitive and I've read that later on.. I may have to forgo using dental floss.  That will drive me up a wall.  

Supposedly the the cytoxan effects (hair loss..or the beginning of it) may engage this Thursday as a start day. Probably explains the scalp tingling.  This should be intesting..but actually right now.. not even a blip on my screen.  It's such a production to keep the catheter dry and wash my hair.  (I updated my Post # 1 on this blog and now have a photo of the catheter, and wrote a bit about it.) 

I sorta wish the hair wasn't here to wash..though I know I'll be thinking differently later as I start to look like Ms. Clean.  But the new bathing ritual, quite a departure from the routine shower we all enjoy daily, includes strategically wrapping myself in "Press & Seal" (a sticky kitchen plastic wrap product); holding a towel at my neck with one hand, ensuring not to bend my neck around much or it feels like the catheter will pop, crouching in a tub, and going into contortionist mode under running water.  Not pretty.  Not pretty at all.


Sunday, September 13, 2009

POST #3 - Getting Meds and Sleeping

My 9/10 noon appointment at HMC infusion area started at 2:30pm, but, that was OK. Busy place, and fortunately I was feeling OK.  Had the opportunity to talk with other patients & families which was interesting and educational. The facility (Cancer Institute) opened in July 2009 so everything is brand new, which is also pleasant. Day One of meds on 9/10 was long..(ended at 7:50pm) but painless. When the chemo bag (cytoxan) was finally running into me.. I felt a bit fuzzy faced..then that subsided. Prior to cytoxan I was given zofran, an anti-nausea med which would hopefully counteract the effects of cytoxan --possibly to be felt later that evening. Yay. Also had a bag of my old friend, dexamethasone, a steroid which works well in this cocktail process. Only side effect there is getting a red face, and feeling a bit jumpy and warm over the next two days..not bad.

The nurses are wonderful at Hershey in the infusion area... knew exactly what I needed at every step, even though I obsessively asked/repeated to each one that entered my room.. stating what I had, what I was supposed to be getting, asked them what & why they were doing what they were doing...I'm sure I made their day.   (but I figure, hey, it's my body and this stuff is dripping into me and folks are touching my catheter.. I want to know that everything is happening as it should to appease my own paranoia at every corner. No oopsin' with this girl. Uh uh. ) But clearly, these are top notch nurses, but my pattern of questions will continue even if God himself was fingering my catheter. Sorry.

There was discussion among the nurses about the size of this catheter..as the 2 tubes are longer / larger than what is typically used for a stem cell tansplant / apherisis process. I believe they stated this is a kidney transplant catheter as LVHN does kidney transplants & not stem cell transplants.. so, size sorta matters.  However, it works, but it's just different.  My ears tuned in to everything, of course.

Thursday night was interesting. Settled in Hope Lodge & went to bed at 9pm. At about 11pm I started to have a weird all-body sensation: not nausea, but an annoying, uncomfortable all-over body "pressure" feeling..as though my body was electrified and buzzing. Try sleeping with that feeling--a no go. It finally subsided at about 6am. Not much sleep.  Oy.

Friday during the day at the infusion area at HMC was a repeat performance of all the same i.v. meds received on Thursday. Another long day as well.. Noon until after 7pm. However Friday night was a new experience.. no "weird-buzzing-pressure" marathon, but instead, I had severe facial bone pain--from cheek bones to lower jaw--just an intense ache that lasted 5 hours. So.. again, little sleep. I did take 2 Tylenol, which is the preferred OTC med as others thin the blood which is not good in my case. The facial pain finally subsided around 6am.  A side effect of cytoxan. Another night of lost sleep so I was fairly zombied come Saturday morning. Needed my Z's desperately.

I've had what can be described as background nausea that comes and goes--mostly evident by minimal appetite. When the "feel ok" curtain opens now & then, I do feel like eating and do so... as of course I have to keep nutrients in me and be balanced and healthy.  One cannot live by 10 billion bottles of water alone. (well, not quite 10 billion..but, feels like it sometimes..) and I even LIKE drinking water..but the condition multiple myeloma AND the treatment plan dictates steady water consumption..which is fine. MM can impact kidneys especially & other organs as it robs red blood cells from doing their job in keeping organs functioning..minor stuff like that.  So, being a good soldierette and OD'ing on H2O.

Next on my agenda is Tues. 9/15 when a visiting nurse begins to see me here daily at my mother's home, and give me daily injections of 600 mcg of neupogen. Neupogen will stimulate the growth of stem cells..and will coax the stem cells from my bones into my blood stream for "collection" next week.  I am supposed to feel as though I have the flu from 9/15 to 9/20 with particular emphasis on the "bone & joint pain" part of the flu. So.. I may not be back on this blog until I feel up to it..or perhaps my sister can enter a post for me. We'll see.   The filled syringes are waiting patiently in boxes next to the pickles and eggs in my mother's refrigerator.

The stem cell "transplant" is a transfusion type process the following week back at HMC. Oh yea, stem cell collection is "big" (meaning: important). On average, 2 million cells are needed for an autologous transplant -- (autologous means my own cells are extracted & later put back into me, versus accepting donor cells from a relative or non-blood related donor. ) My own cells are collected on 9/21.  May take one day, may take up to four days. It's a wait and see.

Then a few weeks later, they're infused back into me, following a mother-load of chemo of course.  It's really all about the chemo..and the stem cell harvest & infusion is part of the chemo process.  I get that now, earlier, I didn't quite get that. I thought stem cells were magic! Well, they are in a sense I suppose.  Once the stem cells are put back into me (after the chemo wipes out much of those bad little myeloma cells, along with alot of other stuff in Jody.. ) the freshly infused stem cells will start my immune system garden to grow once again.  I'll be in isolation for 2 weeks at HMC to help ward off infection and such. More later on that.

No way to tell if I will give enough of my own cells for a transplant. Typically.. people are able to do so..SO, I passionately desire to be typical in this instance.  But..there are also people who simply cannot give enough cells. If I do not, I believe the transplant is a no-go.  If all goes as planned, I'm following a protocol for a tandem transplant--one now (Oct. 12) and another within 3 to 6 months.  According to studies and newer research, this may increase the percentage of being in remission and non-recurrance..or keeping recurrance at bay or farther away.. than with just one transplant.  Its a more aggressive approach and frankly with this--I'm all about AGGRESSIVE.  I've asked too that if I my cells really flow..and the collection is wildly successful and cells-runneth-over.. to collect enough for 4 or 5 transplants..as who knows what lies down the road.   They're kept frozen can be used later. Anyway..cell collection is next week..starting Sept.21.

Almost every day I thank God people with the intelligence, education, skill and ability perfected this process..the needed technology.. (the equipment), the research behind the medications, the whole freakin' shootin' match to make this treatment possible.   I mean, if this was back in the day of our grandparents (..or maybe not that far back)  it'd be the family story..."Yep, grandma passed young. Felt sorta poorly, got kinda thin, passed away."  A mystery.

So, the next several days are my neupogen injections & I'm readying for being achy. But right now, I'm feeling hungry and will satisfy that shortly.  A step at a time. Depending how the next few days go..may post on this blog or not. We'll see how I feel.


Wednesday, September 9, 2009

POST #2 - Going to Hershey

Deeper into reality now. Wednesday 9/9, we drove to my mother's home in Lancaster County PA, the town of Ephrata, to be exact (though northern New Jersey remains to actually be "home" for my family, we left northern NJ in the early 1980s..parents moved to PA). Mother's home will be "my place" for the near future when I'm an outpatient at Penn State Hershey Medical Center (HMC), as it's only a 30 minute back-road drive to Hershey, a closer drive than from the Allentown area where I live.

So, a dreary drive in drizzling rain to Hershey early Thursday 9/10. My sister Sandra is now my driver & caretaker..and will stay with me 24/7 as we'll reside at a wonderful place called "Hope Lodge", owned and run by The American Cancer Society. Hope Lodge is a comfortable and homey motel type residence only 1 block from HMC. A preferred location over my mother's home because of it's proximity to HMC, in case I would develop a fever or other complication at night in the next 2 days. Works for me.

Hope Lodge is no cost to patient/family members, however one must reside a certain distance away to qualify to stay there, providing they have available space. I believe there are a dozen or more rooms at least. It is much nicer than a hotel because it is designed for the cancer patient and family experiencing what it is we will experience.  A Hilton, shall we say, is not.  I am pleased to be able to stay there for 2 nights.


Monday, September 7, 2009

POST #1 - Outpatientness

Well, today everyone but me went back to work after Labor Day, and I became an outpatient at Lehigh Valley Health Network, the place where I work. We drove to our Muhlenberg campus in Bethlehem and experienced it as an outpatient today at 7:30am as I registered to have a "central line" (catheter) placed  into my jugular vein under twilite sedation. I get weak knees even typing "jugular vein". 

Home & resting, examining my reflection in the mirror to look at my new appendage that has two 3 inch clear tubes pointing downward and are like hollow antenna that emerge from my own skin, doesn't exactly make me want to smile. And of course I can plainly see and feel the long thin rise under my skin..which is the 3 or 4" lead tube.. like someone put a pencil in there. Just plain gross.

Hmm...I wonder if I could download music to it?

The lovely image below is said catheter. Let's orient you: At the top of the photo is the base of my neck, and visible at top-left is the slope of my right shoulder.  The horizontal rise in my skin near the top is my collar bone..and of course I don't have to tell you what the more pronounced other vertically slanted rise is... (sigh), and the rest of the parts dangle below.  I Googled around to find an image of an apherisis catheter..but didn't locate one exactly like mine.  Though I did find a single image of a similar one, positioned in the hairy chest of a male. However, I thought it was best not to shock my blog readers to think that "something else was happening ot Jody" aside from multiple myeloma. So, ...figured I'd take a mirror pic of my own with my cell camera. 

Those cell phone cameras do come in handy now, don't they? I recall my 5th grade (1968) report assignment was "Life in the Year 2000",  a zillion years from 1968.  I wrote that I'd live in a bubble house made of glass, setting atop a 50 foot pedestal type base (probably a Jetsons influence). My report didn't include anything whatsoever about telephones,  nothing about that we'd be carrying them around like a wallet, and that they'd fit in your palm, have no wires, they'd also function as cameras, and that we'd be able to take a photo without film and send it through thin air in 20 seconds to someone else's phone across the world. It sounds ridiculous even typing it today, since this is second nature to us all. No, it was all about a bubble house.

OK, I won't go further down this road.  I'll sound way too much like the email we get with slide show attachments about "remembering the good old days", forwarded from parents or older friends...and we get that queasy feeling because we remember it.  ALL of it.  I'm sticking to my blog purpose, here and now.  

Anyway, I can deal with the catheter--in the grand scheme of things, it's minor. What's annoying is it's a 24/7 in-my-face reminder of the fact that I have multiple myeloma.   I know that it's a "must have" for me and is part of the package.  However, not exactly like a "must have" pair of shoes I spot at Lord & Taylor though. 

So if you see fireworks over my home later this fall, it'll be when I'm free of this thing.
The first night of sleeping is not fun..nor is just moving. I should not disturb it much as it is a primary location where infection could develop. It will eventually begin to settle..but it's not settling yet. I believe it needs to remain in me through mid to late October. I cannot WAIT until this is removed.  However, others with cancer endure this and much more in the gizmo-insertion treatment phase and I keep that in mind. This catheter is,  in part, a gizmo to help me.  It is my friend.