POST #11 - Recuperating at Home: After the Storm

Today is Friday November 13th.  Friday the 13th has always been good or lucky for me vs. the superstition that some believe goes along with this day--so let’s start there on a "up" note.  I’ve been recuperating at my own home now since November 2nd. That included my 52nd birthday as well (..I still find it bizarre that I can be 52…where has the time gone? I thought I was about 35?  Didn't I just graduate from college about 15 years ago? Yea, right..Holy moly..) but in any event, it has been absolutely delightful being HERE versus in the hospital. Especially the first week, I would just break down and start crying for no reason, other than the joy of being home. Incredibly simplistic and so overwhelmingly wonderful.

When I was discharged from Hershey, I had 7 prescriptions for acyclovir, amoxicillin, fluconazole, prilosec, potassium and compazine. Oh yea, and a hydrocortisone cream for post-hive annoyance. (sigh). Taking a fistful of pills daily was not exactly thrilling for me..and the potassium pills are gigantic. The good news is, I’m now down to just 1 pill: acyclovir, which I’ve learned I need to be taking once per day for A YEAR.. as it is important to do so to reduce the chance of getting shingles down the road.
Interestingly, my blood pressure spiked the last few days at Hershey, so I obtained a new hypertension medication (I have been on meds for that condition for about 12 years..both parents are hypertensive, so, I get it honestly). Without meds, we’re talking 170 / 110. With meds, 130 / 72 or thereabouts. However, since I’ve been home.. my BP is low & normal without medication… unsure why that’s the case. I knew that the MM meds I took since April & ceased taking in early September caused my BP to normalize as well and my hypertension meds were not necessary for those five months. Hmm.. that’s one positive thing about having multiple myeloma—now where’s my list and I’ll add this to it.  Oh wait.  I don’t’ have a list.

Re: vaccinations.. early in 2009, prior to my diagnosis of multiple myeloma, I paid extra (since I’m under 60) and had the shingles vaccine. Several people I know, including family members, have had shingles in the past few years and after seeing unbelievable suffering first hand from THAT awful condition, I knew it was one thing I’d like to avoid. Another weird auto-immune related condition that can surface for a number of reasons after lying dormant. Now, interestingly, THAT vaccine, and in addition, ALL of the vaccines/immunizations I had the day I was BORN and in very early childhood.. may basically be null and void due to the chemo/transplant process. I’ve been told that I will have to be revaccinated for EVERYTHING sometime within the first year after my treatments have concluded. That was a new one to learn. I was sharing this with a friend and he said “Gee, it’s like you have to be rebooted.” Ha! Makes me a little nervous..and I’m not sure why, exactly. But, of course I’ll move ahead with it as prescribed when the time comes. I just don’t want my system to crash after the reboot. Maybe Windows 7 will help. ;-)

The 2nd day after I returned to my home, I had an appointment to have my big honkin' apherisis catheter removed.  Understandably, after 2+ months, the little bugger was happy in my upper chest. It made friends with my surrounding tissues and began to cling to it, and from what I learned during the 5 or 10 minutes (which seemed like an hour) when it was being removed.. there is a “cuff” at the end of the tube that was in my jugular vein..and it just didn’t want to come out easily. Local injections of lidocaine kept me from feeling pain in the area, but there was applied pressure and heavy tugging that was felt instead. Weird ..but the end result was worth it. The area was tender for over a week, and just yesterday I became giant BandAid-FREE on that spot. I no longer feel like a Star Trek cyborg and I can wear a turtleneck. Yay!

I was told that I would be feeling stronger each day..but, I would be fatigued moreso than anything. I thought “yea yea ... fatigue, fatague..…we’ll see about that.” Well, I’m seeing now they were oh-so-correct. Being tired & feeling “spent” is a new feeling to me. Every day here at home, I wake up and think “well, TODAY I’m going to do this, that and the other thing..” in the confines of my own home. I barely make it to “this” and I have to rest on my sofa. Sad, eh? But, I am now a believer in rest. The fatigue, plus my sleep pattern that’s still not normal ..as I wake up at about 3am or 3:30am every night and can’t seem to go back to sleep.. does do a number on you after while. The expected fatigue from going through this process, coupled with the thrown-off sleep pattern.. no wonder I feel fatigued..(sigh). It’s getting a little old now, I must say. I do try & get out at least once a day or every other day.. the Big Outing is 10 minutes at the grocery store which is about 5 minutes from my house.

I took a chance yesterday & went to the dept. store (for an additional 10 minutes) that is adjacent to the grocery store to buy a scarf for my no-hair head. Interesting.. kind sales associates in the store commented on “how well I wear a scarf”..and they looked at me with big (kind and sincere) cow eyes..probably realizing I have no hair and the reasons for it. Then I quickly created my own stories about that, remembering my own reality, and I had to fight off the tears..always a big challenge for me as I can cry at the drop of a hat. (sigh). The whole hair thing is something i'm getting used to. I've managed to hang onto my eyebrows by some miracle..though they're thinner.  And my eyelashes are very thin as well, but the magic of mascara helps. I have options with my hair.. I can scarf it, which I'm sure I will as I have tons of scarves..however I also have two wigs:  one is a full wig that I purchased back in August as I wanted to get all fo this buttoned up before I left on a medical leave..it is probably the color of my "real" hair. We'll see..whenever it decides to grow in. The other is a partial wig, that one must wear under a hat or scarf--because there is no top, just lace elastic that keeps it on your head.  Pretty cool. (though I look like a scary clown or maybe Ben Franklin if I take off the cap..with the longer hair & zero on top -- Ha!) but, it's still fun for a quick & different look. (see both below).

Anyway, I probably over-did it during that extended outing.. between the time and the emotion expended. …because I came home and had to lie down. God, I feel like some old lady sometimes.  Lesson learned, for sure. Now I know why they say 4 ot 6 weeks recuperation time..I"m taking almost 4, so, I hope the next final two weeks I zoom into feeling really great & re-energized!  I do notice I have more energy in the morning.. I really fade as the day goes on.  Glad I now have a DVR and can record some of the worthwhile television to view when I’m awake.

As I continue my hermit-mode at home, I'm still figuring out what I can eat, and what isn't good (yet). My entire G.I. system is out of wack, most certainly.  Morning nausea doesn't happen as frequently any more..but every time I eat..there's a "hmmmm"  afterwards..as I try to discern if it was a good idea or not to eat whatever it was that's now working its way through me. (sigh).  The advantage of being a hermit is you're always close to a bathroom.  Your OWN bathroom, an added bonus.

One-on-one interaction with people (who aren’t sick) is ok..or, breezing quickly through a grocery store as needed.  But, given the seasonal and swine flu that are still swirling around..when I visit my hospital where I work (Lehigh Valley Health Network) where I see my oncologist or get bloodwork.-- I take precautions when I visit the hospital.  I'm sort of incognito.. wearing a scarf on my head, and also a mask over my mouth/nose.  People are coughing in the waiting rooms..it just freaks me out. I look forward to when it’s ok to simply be in meetings again after I return to work.. and to go to the movies and be “normal” and not be so paranoid. Pre-treatment, I also LOVED going out to dinner.. now, my mind can’t help creating stories about “..hmm..I wonder how well they’ve washed the lettuce?” and my mental appetite drops to zero.  I haven’t been to a restaurant of course—but I’ve gotta get back in the saddle soon. I don’t want to turn into Howard Hughes after all this. There’ll be Jody at her desk, wearing a head to foot zippered suit with an oxygen mask, (sigh). This experience [at least for me] does a number on your brain about cleanliness, germs and infection, for sure.

So, this may be my final Post in this blog of mine. Should I have the 2nd transplant in early 2010, based on the results of the November 30th bone marrow biopsy.. I may continue with that experience and write more. Or, should anything occur that I feel compelled to capture in writing..I may do so between now and then. I have received communication from people who are multiple myeloma patients..and have found this chronicle helpful. It has also been a way to keep friends and colleagues informed about what’s going on with me. I purposefully have kept names of physicians and nurses private, though all have been absolutely wonderful at Penn State Hershey Medical Center and at Lehigh Valley Health Network.

Though each person like myself, someone with multiple myeloma, is different and goes through the experience differently.. there are some core things that may be the same. This has been my journey, thus far. I know there are people with health situations that are far far worse than what I have experienced, and I empathize with them. I have learned a great deal about myself and about things that truly matter to me. I do see all kinds of things differently now. Perhaps these are some of the things I would have never learned if this condition had never surfaced in me. In my search for “the why” behind making sense of why this cancer came into my life, maybe that’s a start.

I continue to feel fortunate.

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POST #10 - My Publicly Private Storm

Posts #8, #9, #10 are new, as of today.  If you have read up through #7, you may want to start with #8. 


Today is October 29. I was discharged yesterday, October 28 from Hershey, which was two days later than my anticipated discharge date of Monday October 26 (albeit a soft date to begin with; I consciously knew that..but oh how I clung to that date as I began to bottom out after writing my Post #8 and #9 when I still felt pretty well. This post will probably not appear until October 30th as I'm not fully up to speed yet... at all. )

How can I begin to explain my experience over the past two weeks?
First, having the support of my family was numero uno. My sister stayed with me each day until about 8pm or so. Words cannot express how wonderful it was to have someone there. There were blocks of time when we didn't even speak because I was so in and out of it due to the medications. “Good” times enabled card playing. She Googled “rummy” on her Palm Treo and found basic playing rules for a game—(which neither of us could recall that last time we played...so rules sorta helped). On days I didn't feel awful, it was exciting to play and feel normal. My mother visiting for several hours on different days to lay eyes on me to ensure I was simply “there” knowing full well what was going on, was nice. Through my mother's eyes, I'm sure seeing and talking to your bald pale daughter in pain, evenso, was still comforting and reassuring that I was “ok”. Yet I didn't want her to be overwhelmed, either. I'm glad the days she was there were my “better” days. Yes, my two best buddies, surgically masked and doing their best to keep me germ free, (a rule for transplant patients) brightened my stay. I could be myself: sick, vomiting, pissed off, happy, making jokes, whatever. They know me.

The nurses, nursing aids and everyone else was spectacular on the Cancer Institute unit.. where most patients go who have chemo and/or stem cell transplants. Everyone was almost clairvoyant..knowing what I may need even before I asked. Also, I was visited by a physician at least once per day—all knew my case, knew my test results, were fully informed. They all knew me in a different way, which was great.

How did I actually feel?
The first week was more fluctuatingly brutal as the 2nd week, which was more steadily brutal. (ha!) As time moved forward, I felt more consistently ill. Everyone shared with me in advance that that as my blood count numbers dropped and I became neutropenic, (really low blood counts.. highest risk for bacterial infection and other things), I'd feel progressively worse. Seeing is believing and trust me, feeling is believing. I had a full, sick feeling all the time. I had to carefully sip water, and while doing so, thinking of different images ..or I could not finish the water. I began to even loathe the styrofoam cups with a flexible straw—I wanted to throw it against the wall, but, I didn't. Cell phone vibrated..just couldn't answer it. Didn't return any texts. Just laid there in bed, trying to sleep. I didn't have sharp aches or pains..just a blanket nausea of a different type than I had experienced with a flu or virus. When I felt less awful, I could watch television or read. The 2nd week was much rougher than the first, even with my awful, unplanned start of that migraine on my first day.

The mission of melphalan, the high dose chemo I received my very first day, is to kill my bone marrow, all of it, and any rogue myeloma cells to boot. It also kills all cells that rapidly reproduce: mouth, esophagus, intestines and all below that area. So.. there I was, over just a matter of days following the chemo, feeling that someone stitched together a long strip of popped corn and had sewn it into my throat, down my esophagus. I developed, as many do, Mucositis..which is just that: mucus areas are getting hit in a bad way. However, due to whatever luck, I developed not even ONE mouth sore. Thank GOD.

As I approached and then moved through the second week, swallowing water & food became too challenging as it was such a struggle to muster up enough courage to take my meds orally with water & keep them down longer than 10 minutes—I first had to have compazine just to take medication. It was after I went for two days without water or food (and desired none..had no thirst or hunger)..that finally I conceded: I said, “I think it's time to go all liquid.” I was SO happy. All food tasted awful by then (realizing now..it was not the food...it was me, and was part of what happens due to the melphalan.)

So now my breakfast, lunch, snacks and dinner all came from one huge I.V. bag that was ivory colored goop. Mmm, haute cuisine, eh? I gave up keeping track of all the things that began to be hung on my I.V. pole. In an earlier post in this blog of mine, I poked fun at my catheter..being paranoid about who & what was being done to me..now it was SO trivial. By the time the second week rolled around, I wouldn't have known or cared what anyone was doing with my catheter it was accessed so often. What are you putting in there? Motor oil? Chocolate milk? Sure.. keep it coming.

I asked if there was something I could have for the background discomfort/nausea that was ever-present. My old magic and super powerful pal, dilaudid, [my Migraine Day med de jour] was put to action. I had a very low baseline of the opiate going into me all the time, with an added option of a pump where could get an extra amount, but not OD on it. That was helpful. However... it put me into a constant state of wooziness/loopyland. Friends and family could tell I was not quite myself (though I tried hard to focus) and I did know it was effecting my ability to speak and sound 100% “there”. Frankly, I probably sounded like a combination of too much wine and drifting in and out of conversation. I was fully aware of when I'd drift.. but I was not in control of it..which was really really odd. I really didn't mind it to the point where I'd want to change it—because the alternative: excruciating “popcorn throat” and a higher level of background nausea was not worth it. I'd prefer being the Queen of Woozy Land.

The one scary part of what I believe was a side effect of dilaudid were the nightmares and dream scenarios. I can't begin to explain it... they were always dark, long episodes. Combination of being inside some twisted video game or classic fright movie (sans the blood & guts) but just bizarro scenes with people I knew and emotions that were very real. In fact, one night, I fell asleep at about 10:30pm..had one of those dreams..woke up at 11:30pm... drifted off again and woke up to having experienced an entirely new one...woke up at 1:45pm and said, that's it. I'm staying awake tonight. No more of this @#%&$.

I then discovered the sad state of affairs of television after 1:30am. I became familiar with the benefits of the SuperNinja: a food chopping machine. Other cooking machines that did everything but walk off the table for you, clean itself and jump back in your cupboard – ALL FOR 3 PAYMENTS OF $19.95!! (but I couldn't watch food prep on TV or I knew I'd hurl). Scores of women's facial cremes and makeup being pitched by TV has-beens; the most comical was an actual air brushing gizmo that blows facial powder minerals on your face.. as a “new” way to apply makeup. How freakin' ridiculous. And the backbone remains to be 10 billion exercise machines that will give you ripped abs in about, oh, 5 days, oiled, tan and of course on a palm treed beach. The way I felt, I'd rather just be ripped on something and feel ok. Forget the freakin' abs.

As the week prior to “Halloween Week”.. the creep movies were also on at night. I forgot how bad some movies really were. These were not the classic retro cute ones from the 1950s.. these were “newer” and not good. I'd rather watch a sweeper that sucks up bowling balls.

I'd flip between 24 hr news shows and noticed that the swine flu was on every show in every hour sliced & diced in every which way. And let's not even talk about “the balloon boy” and his warped family out in Colorado. I don't consider that story as “news” to be repeated over a multi-day time period. Let's hear real news, eh?

I concluded that I felt badly for insomniacs.

During the day, I initially had high hopes of reading a few books, etc...but it was so difficult to focus due to the meds and how I felt. Sleeping/napping was an escape.

I'd also find myself in dual realities.. that was curious--probably another dilaudid side effect. I'd be thinking about something...then, I could feel myself drift into another conversation inside of me about something completely different.. and then doze off for a nano second..and then I'd  “wake up”  and I'd be talking out loud about THAT scenario—stating full sentences. It was a little embarrassing when someone else was in the room with me..but, oh well, couldn't help it. I'm sure the nurses and all were familiar with this. One mentioned that often patients hallucinated seeing things on the wall that weren't there.. ughhh.. that would freak me out the door. But.. STILL better than feeling sick.

For the better part of ten days, I had new rituals that were the focus of my world. The items I kept on my rolling table aside a patient's bed, at least for me, were very important. Medicated lip balm, or you can kiss your lips goodbye through all of this. Some kind of hand crèam because you wash your hands like an obsessive compulsive. A pen and scrap paper; book; magazine; Ear plugs to lull you into sleep mode, for the room's air handling system keeps it pure and as germ free as possible but there's a constant noise of air-blowing 24/7. One night at about 3am the system went down for repair on the unit for 30 minutes and it was the most eerie sound: silence.

Other prized possessions included my pitcher for water/ice and not knocking over my my dreaded styrofoam cups. My lousy little cell phone—my link to the Outer World, had a charger cord that was just a wee be too short. If I had a dollar for every time I had to pick it up off the floor, or, pick up the combo remote that had the TV on-off and nurse call button, I'd be a millionaire in just 2 weeks, or at least it seemed that way. The constant getting in & out of bed got old quickly..as 10,000 I.V. bags of liquid can't stay in your body for long (well, not 10,000.. but it felt like it.) Always had to ensure I wasn't lying on my I.V. tubing; rolling my I.V. pole to visiting the sink to brush my teeth and rinse with this saline solution to reduce the severity of possibly mouth sores..and careful not to hurl as my body became so accustomed to that as almost a reflex to anything liquid in my mouth.. I had to keep focused when eating, drinking or at the sink at all times. These were all part of my routine, the only things that mattered. All this stuff was My World, not much else. I recall when my mother visited, my list for her as to what to bring was: an emery board, my nails became so brittle and they were shaped like I'd imagine Frankenstein's nails may have looked.

My feet + ankles swelled up for a few days and looked like little foot balloons; then I broke out in hives. Ah, the joy.

Looking at my reflection in the mirror was tough. Natural light was not complimentary. I've always enjoyed fooling around to look a certain way, taking pride in my appearance and trying to do the best with what genetics and God handed to me. Well, now, my capillaries were inflamed, my skin seemed to have lost it's life, color was sallow, skin around the eyes was weirdly red due to frequent pressure from vomiting or whatEVER.... who WAS that staring back at me? where the hell WAS I? Well, I figured the artist in me will be able to whip myself into cosmetic shape after it's all over..so, I talked myself happy again.

When I felt up to it, I did walk “laps” around the unit, wearing my mask..as I needed to keep active. Seeing other patients with all kinds of cancer issues similar and different to mine. I felt lucky again. I did develop pneumonia during that second week as well..and am still on medication for that..but it is subsiding.

The days continued.. as I moved closer and closer to The Day (or what I thought would be the day of discharge) Monday Oct. 26... I became more and more anxious to have this just be “over with”. My routines became old. My hospital bed was glaringly not my own. I began to feel like a caged animal. Funny, I watched Jack Nicholson in his performance as a werewolf in the movie “Wolf” with Michelle Pfeiffer.. he was made for that role, it was a shining star of one of the better Halloween/creep movies on late night TV that week. I felt like Jack.. just wanting to get the hell out..and run around in the woods, (minus the urge to attack people), but free of tubing, feeling sick and the whole thing.

When the day finally came, just a few days ago, I was packed and ready to go the night before. I finally got the “OK” when my potassium level was high enough, after needing 3 unexpected bags through my catheter that morning—the final thing. I would have walked home in the rain at that point. I felt like Scarlett O'Hara, pounding the land near Tara, but with a slightly different cry.. “As God as my witness, I'm not going to stay here one more night.”

Being back at my mothers' now before I head home to Allentown on Monday to have my catheter removed (YAY!) has been surreal. SOOOO happy to be in a place that's home. There's definitely something that chemo does to one's sense of taste & smell. Had a waffle with real maple syrup and it tasted like liquid bitter stuff on a mushy God-knows-what. Nothing remotely like great Vermont syrup and ol' Aunt Jemima and butter—very strange. My appetite is not back yet. I hope it returns along with my taste buds. I have to sample little bits here and there to see what it is that I can eat and enjoy. Certain things I cannot stomach at all. It's also as though someone turned the volume up on my sense of smell—I'm keenly aware of everything. One odd thing is I crave milk. I've always liked milk, never 'been anti-milk..but I can't get enough milk. Maybe I'm turning into a cat, a little known chemo side effect, eh?

The next piece on my health agenda is the results of a bone marrow biopsy at the end of November, coupled with some other things. If I am in partial or full remission, I will go ahead with the tandem transplant, which means, I repeat the entire two weeks, again, in probably January of 2010, which may boost my chances up to 85% or 90% to be in remission for a long time. (with just one successful transplant, it is more in the 40% to 65% range) and possibly maintenance level medication in either case. I like the higher odds.

At least now I know what to expect for the next time.

Should for some reason the transplant did not “take”..meaning it didn't really make much difference in my overall numbers and what needs to be watched for multiple myeloma, then the 2nd transplant will not take place..and medications will be the primary protocol. 

But as Scarlett also said... “I'll think about that tomorrow, for tomorrow is another day!”

And yes, even through all this, I still feel lucky.

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POST #9 - Reflecting Back: My Diagnosis Story

I’m writing this on October 18, also known as Day +5 after transplant. Today is a good day and I feel in the mood to type. The past 2 days have been ok, and since today is better than yesterday, thought I'd get in some more blog fodder. I”m propped up in a recliner in my room, with my sister’s Sony Vaio laptop a buzzin’.


It’s interesting being here and learning about others with cancer. Hope Lodge, the Cancer Society owned facility where my sister is staying for these two weeks to be with me during the day, is a place of relaxation and story-learning. Family members and well as cancer patients receiving day treatments can stay in this full amenity homey lodge while visiting Hershey. My sister has met several family members of people who are having their care at Hershey. Again..no matter what happens in my life from this point forward connected to cancer or anything else, I feel so lucky, words cannot express.

The first question that people ask me when they've learned of my status, is “How did you find out that you HAD this??” (multiple myeloma). I’ve done a Cliff Notes version of unraveling my multiple myeloma story. For those of you who have heard this.. feel free to skip to Post #10.

Long ago and far away in March of 2009, I went in for a blood series with my primary care physician.. cholesterol, etc. and I was anemic. Slightly anemic. I felt absolutely fine. I was not tired, no pain, no bone aches, no nothing.

In fall of 2008 my GYN shared with me that I was just slightly anemic, “.5” below normal..I believe I was 10.5 where normal was 11 of my hemoglobin, if I recall correctly. Understandably, she was not overly concerned as tons of women can be anemic by this tiny bit. The suggested was to take an over the counter iron supplement, which I was ready to purchase after our conversation. I spoke with the pharmacist regarding the name of suggested projects, and she shared that “..are you aware that these may make you very constipated”. I thought.. OH GEEZE! It was not a welcomed state to be in for various reasons..so I said to her, “How about if, first, I’d load up on spinach and red meat and see if I could pull out of my anemic state with doing that, versus taking one of these products? So I self-decided this is what I’d do.

A few month’s passed and it was time for me to have regular blood work done for cholestral, etc. through my primary care physician. I had forgotten to have it done for a while (like, a year).. so I thought now, March, was a good time to do this, and it's how the ball got rolling.

I went to my PCP for the bloodwork. After my blood series came back “fine” except for being anemic, and I shared with him about my prior knowledge of beng anemic..he checked my counts last fall and now, I had now dropped a full point..so I believe I was at 9.5, down from 10.5. That is not normal, so I learned. “Well, your b12 and iron are fine..so something else is causing you to be anemic.” If my memory serves me correctly, it was then that I asked him what can cause anemia that could be concerning? Multiple myeloma was in the possibilities discussed, which was fine, well, fine because it was explored verbally in our conversation, it was not yet an “it” factor. I tried to wedge into the conversation that “Gee..couldn’t this anemic state just “be me”? ..or, how about that I’m probably peremenopausal? Or.. or.. or.. My PCP smiled and said, “well, anything is possible..but, “I want to investigate and vampire you a bit and do a big series”. I agreed of course. Those results came back within a week or so. I went back to his office and he had that “look”, which in 15 years of seeing him and not having any out of the ordinary issues, that “look” was a bit different. He said something like.. “there are some things present in your blood that indicate something is going on”….and as the discussion continued he said it was time to referred me to a hematologist-oncologist specialist .. and did I know any at my hospital where I worked? Well, sure. We agreed on a name and he PAGED him. I thought hmmmm.. PAGE vs. PHONE.. not good. My physician said, “I have to leave for a conference tomorrow…but I want this all buttoned up with the oncologist before I leave.” Oh geeze. Maybe I was obsessing—whatever. I believe the oncologoist prescribed yet another blood series to be conducted & turned around rapidly. Then when my oncologist delayed the start of his vacation in order to meet with me regarding his blood series results, I knew I wasn’t in Kansas any more.

I had already Googled endlessly about MM and the next few days. Multiply that by about a trillion, and that’s how much my sister was researching MM. We wisely kept my mother in the dark, as, we didn’t have face-to-face 100% confirmation yet..why pass worry that is not confirmed?

So, as I was gathering the entire scoop on MM from my oncologist, I asked my sister to join me about 20 minutes into our chat.. even though I remained calm and his words were resonating based on some of what I found through research..it was still a lot to take in. My sister took copious notes & asked questions based on what she knew through her research, which was voluminous.

As luck would have it, 8am the next day there had been a cancellation for a bone marrow biopsy and I was sliding into that vacant spot! That would be the final “confirmation” of the condition, and, would also show more. I also had a Pet Scan.. (or a bone scan? memory fade..must be my current drug load) …a painless xray of my entire body. It revealed a few small lesions in my skull..which wasn't too bad and pretty typical. At least my bones didn't look like a dalmatian.

The bone marrow biopsy was interesting. I had read up on what it was like, and it wasn’t too bad really. It was weird and uncomfortable vs. just painful. Local anesthetic injections and conducted by a physician who’s done about 10,000 of them, literally, made me feel ok.

Always inquiring about what’s going on during a procedure..[hey, when someone is sticking a needle in your bone, you're focused on every second of the experience..] ..I asked him “This procedure must be challenging when a patient is obese or morbidly obese? ”.. he almost paused and said “You have no idea”.. and went on to say that in some cases, the sample must be obtained from the breast bone.. a place of least fatty tissue.” Ugh. I was glad I've kept myself in relatively fit condition...but I suddenly I wanted to jump off that table & sprint to the fitness center.

The biopsy was conclusive. Multiple myeloma was now part of my life, but not my life.

I also learned my chromosomes were “good”. I had not at that point realized why my oncologist was so happy as he delivered that piece of news. I know now. I have the most common form of multiple myeloma. Yeah! I was prescribed three medications. (1) Dexamethazone or decadron, a steroid (2) Revlimid, or lenalidomide, a med that was found to attack MM when coupled with DEX (3) zometa, a bone builder, similar to what Sally Fields wails about on TV, boniva.. this med will be a once per month I.V. drip.

SHOCK AND AWE

I purchased DEX in our hospital pharmacy. I was informed that Revlimid would be shipped to me directly. Fine. So I had to begin taking all 3 meds on a Monday. The Thursday before that day, I had a phone call at home from a company called “Biologics”, the distributor for Celgene, the Revlimid manufacturer. A very friendly and helpful woman said to me “I understand you’re starting Revlimid soon?” I said, “Oh yes, Monday!” She continued, “We’d love to send you your prescription, however there are a number of forms to be completed and you need to take an online survey about this medication as I does have significant side effects for women who are still in their reproductive years, and it also addresses birth control.” (oh LORDY!)

So, of course, I would go ahead and do what needed to be done, surveys and all, just so I can get this med on time to start taking it! Upon me finishing the highly personal surveys, she and said, “How would you like to pay for this?” I said, well, I believe my insurance will cover it, and she then contacted my insurance co. and was told I could submit paperwork later. However, I needed the medication NOW to begin it on Monday. I said, “Just send it along to me.” She said, “We can only ship with confirmed payment. How would you like to pay for this?” I realized then it was my turn and I needed to anty up. I said, oh, ok, do you accept a personal check? Visa? She said “No personal checks. We take visa, MC, or a bank check…and, this is a very costly medication.”

Hearing that, I was envisioning maybe $1,000 thereabouts. I said, “What are we talking here for this prescription for 21 days of pills?” She replied: “$7,555.84.”

If you haven't guessed, this was the “shock and awe” part. I must have looked like one of those cartoon drawings where the eyeballs bulge out of a character's head, or what comes naturally to Jim Cary in his roles. I said, “OH!” and oddly, burst into tears. That wasn’t because I couldn’t pay for it, but it was the simple shock of it all. I had managed everything for the first week really well….though I was still on emotional Bambi legs, then, this hit. I put it on my visa card as it was the quickest and medication arrived FedEx the next day. I was at the office and someone has to sign for a FedEx package so I wrote an email to everyone in the suite stating “To All: a $7,500 medication is being delivered to me today..please sign for it & page me when it arrives”.

It took several weeks for this to be ironed out and I was thrilled when I was told Revlimid would be fully reimbursed and covered under my insurance.

I was on revlimid and DEX since April 2009 up until late August. No extraordinary side effects. Revlimid was 21 days on, 1 week off. I believe it kept my blood pressure happily low, thus, no meds needed for my hypertension—a condition for which I had been taking medication for over 10 years.

DEX, 40 mg every Monday, became predictable as far a side effects. Hyped up on Mon/Tues an difficulty sleeping, but melatonin helped. Tuesday, my face would turn red in my cheeks and I'd look oh-so fit and sunned. (sigh) but it would go away the next day. Then there was the Gain-5-lbs-in-one-day phenomenon. It'd melt off by Saturday..only to start that and the rest of the side effects again on Monday. But.. those two meds made a big difference in the numbers that were being closely monitored by my hematologist oncologist over the spring and summer.

I visited the the Hospital of the University of PA's MM program, as well as Penn State Hershey's program as potential locations for the transplant process. Both are excellent. I'm very very happy with where I am right now.

So that's how this all began for me. What a year, eh?

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POST #8 - Let the Games Begin

Today is Wednesday October 14. Even though this Posting on my blog will appear much later, I wanted to capture my experience before it faded. This Posting is about my first 3 days at Penn State Hershey Medical Center, of my two-week stay, including chemo and transplant.


I was all set for my Monday October 12 trip to Hershey, or so I thought. I woke up at 3am Monday morning with a migraine-level headache of a LIFEtime. My conclusion was, perhaps pent up stress and anxiety had arrived and packaged itself in the form of a headache that included being physically ill, if you get my drift. All I knew was I was in 100% agony on my Important Day. Hershey called with the preferred estimated time of arrival & we agreed on “before noon”. I shared that I was suffering with a wicked headache and was told nicely “well, we have wonderful drugs here that can help”. That was the only smile I managed that morning—I was determined to get to Hershey in record time.

So, there was my sister, driving me to Hershey in her red PT Cruiser, I was sitting in the passenger seat with my red & black scarf pulled over my face to keep the sunlight out. For anyone peering the window as they drove by, it looked like some wacky kidnapping. We arrived, and were told beforehand to walk right upstairs to the unit without need to stop at the main desk. As my sister did the valet parking thing, I waited inside main entrance doors, standing by the beautiful new hospital map, with my head in my hand, obviously in pain & probably downright scary looking. I was now a patient in pain. People were staring at me. I could care less. As we approached the elevator tower, I was losing ground—I HAD to get up to that 6th floor for the DRUGS or I’d know the reason why. Just like in an annoying scene from a movie or TV show, the elevator took forEVER, then finally we entered one of the three that was finally free, and four other people had to re-open the doors to hop on. I tried to say calm, thinking.. “hmm..they too have somewhere to go, to heal the sick.” Then, a final person had to also enter our elevator pushing a huge cart of equipment. I said out loud: “I’m not moving” and if my lip curled, it did then. The cart-pusher did end up wedging it on our elevator though, and we ascended, stopping at every blasted floor. Jesus. Just get me up there, please.

So, on the 6th floor we walked down a long hallway,and around the corner was the Cancer Institute unit behind double doors. We were met outside the doors by a nurse holding a chart and she said “Are you here for room 6127?” I said, ”I’m not sure about that, but I’m Jody Millard, I’m here for the next two weeks – TAKE me.”

As I got acclimated to my room, imitrex was ordered, but was slow coming up from the pharmacy. I had already been ill repeatedly that morning and I was certain that pattern would continue. My physician and others came by shortly after my arrival and we discussed the headache. He ordered dilaudid, an opoid. Yep, not-your-father's-painkiller shall we say, as it was a bit higher than morphine (or, was that me?) Anyway, I must have really indicated how much pain I was in.. and, he was concerned. As it flowed into my catheter I felt a woozy rush and my headache went away in what seemed like 90 seconds. LOVE IT! Even though it did make me ill, it was not a big deal. I HAD NO PAIN.

So, I began to receive my medications prior to chemo, more anti-nausea meds. I was already in a nice woozy state so I welcomed anything into that catheter, bring it on! Chemo started at 5pm. Thirty minutes prior, I had to chew on crushed ice. This I’m told would decrease the percentage of the severity of mouth sores from 75% to 25% in about a week or so from now. Oh goody. My mouth was numb by the time the chemo started, so, even though the chemo was strong—with all the prior medication-- it was manageable. My episodes of illness (aka vomiting) weren’t bad. Actually, it’s unlike being ill from a virus or food poisoning, . It comes upon you rapidly, it “happens”, then, it’s over. So, my day had about a dozen “episodes”..my pink basin and I were friends by then, but I bid him farewell by evening. Little did I know I'd be marrying that basin, or so it would feel, in the next 13 days.

I didn’t sleep at all on Monday night, but oddly, I felt ok. Having never stayed in a hospital overnight before in my life, this was baptism by fire. Overnight due to cancer, not a broken limb or some other thing. But—the overnighting experience was fine. The sleep loss was probably due to steroids.

While awake, I thought about writing this posting. I thought about changing my furniture around in my home to accommodate my new flat screen TV. I thought about redecorating other peoples houses. I thought about work and was going on. I thought about my cat being tenderly cared for by friends, I thought about how great it was that I was here and everyone knew what was going to happen next. I thought about how lucky I was.

Tuesday (called Day 0 in Transplant Land) was the day that my stem cells would be infused into me. So the troops entered the room at about 11am. The person from the blood bank wheeled in a dry-iced container with my stem cells in 2 bags. A triangle of conversation took place to triple-check the accuracy that my cells matched me, each person read my wristband/label on cells/label on order which was most all reassuring. They were indeed MY cells, the same ones I had spent 10 hours “giving” at Hershey just 3 weeks prior . The nurse practitioner actually did the infusion directly into my catheter with my physician present and a second nurse standing by and my sister as my guard.

The infusion was another weird experience, but again, manageable.

Because my stem cell collection was “good”, I only had two large syringes of stem cells destined for me, about 2 million cells. The team shared that sometimes an infusion requires 15 or 20 syringes for one patient, based in part on how well the collection had gone or if ones' stem cells were not strong due to prior chemo or other reasons—more vials are needed for the same final count.

Anyway, these were thick sausage-wide syringes. Eeeew. The Nurse Practioner began the process and I was forewarned about experiencing things like nausea, shortness of breath, feeling overheated, etc. As she pressed my cells into my catheter, I instantly felt like a low ember fire was making its way through my body. At first it was heat, then, it was more like a peppery feeling in the back of my throat. It felt like someone put a bit of lite Tabasco sauce or pepper in my throat and I needed to cough for no real reason as nothing was actually there of course. It wasn’t comfortable. The idea of having 20 syringes would be quite a challenge, but of course I’d endure it if that was what was needed. I’m grateful that it was just two. I had been told there’d be an aroma of creamed corn, something I never did end up sensing...but others could. My sister confirmed even hours afterwards that yes, it was in my room wafting around. Never knew it. For about 20 minutes, I had 10 eyeballs (though very friendly eyeballs) staring at me in silence as the NP was infusing me, which added curiously to the experience . In hindsight, the eyes made it more comfortable as they were all focused on me.

The infusion ended. I felt unsettled the rest of the day on Tuesday, no other way to describe it. I needed anti-nausea medication to enable me to sleep and I did so.

Wednesday “Day +1” (the day I’m writing this, Oct. 14) .. has been terrific! I feel super! I can eat (a little) and my sister and I did two 20 minute walking laps around the unit. It felt great to be out and about, even if it wasn’t far from my room, it was great.

My infusion NP stopped by and updated me with detail about “what’s next”. That was a boatload of information that was a bit new. I learned today that about 6 days from now, my white blood count will be dropping and it’ll drop to it’s lowest point. My numbers will be bottoming out , though with my stem cells, they’re fighting for me at the same time. I’ll be most susceptible to infection and from then, all will start to rise. Interventions may include continued need for acid reduction for my esophagus (as chemo weakens cells that reproduce the fastest: mouth, esophagus, mucus membrane areas) , neupogen to build blood cells, and possible blood transfusions. It is expected that I may get some kind of infection and then I’d have chest xrays, maybe a CTscan to find out what’s going on.

This concludes my update on my first 3 days. Chemo and transplant are now officially “history”. More stuff to come behind the remainder of my stay, but I'm game. Life is bettering!



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POST #7 - Almost There!!

Today is Sunday October 11. A little gap in time since my last posting on my blog. I can't believe it has been over five weeks since my world shifted off it's axis, beginning a new rotation through November. Coming in on the home stretch, my “transplant” which technically is a rescue from chemo, is now tomorrow.


I'm used to my no-hair look. It certainly shortens the primping phase of my morning. It's been fun to experiment with various scarves and such, as demonstrated below. Turbans sort of make me look like Ethel Mertz. Found some great accessories online as well.

My skin near my catheter insertion area has healed and now, it's part of me (sigh). Word is, it can be removed at the end of October. But, it has One More Big Important Job to do before then.

This past week had been much the same as the one before: Monday and Thursday visits to Hershey for an in-the-catheter syringe of another chemotherapy medication used for multiple myeloma, Velcade. To me, the name Velcade sounds so crisp & slick, compared to the 100s of meds that end in an “ox-an” or an “an-ide” or a “gen”. Velcade sounds like an adventure.. I picture some red sports car screeching to a hault and this attractive sunglassed guy jumps out, scoping out the area, looking for a crime to solve, and the harmonizing group wails.. “Vel - Caaaaade!”

Ok, maybe the steroids are eating my brain. Who knows. My double dose of dexamethazone for the past two weeks has kept me fairly hyped up, which meant some significant sleep loss. I had mild tingling from Velcade in my feet on one evening and some leg swelling but fortunately it all subsided. When your scope in life is narrowed and focused as mine is now...everything in front my lens is magnified: how I feel, who's walking down the street, what's in that drawer over there across the room that should be thrown out. To me, everything is of interest. Nothing is boring. What ever is caught under my newly focused lens quickly gets dissected on a glass slide. Knowledge and information is true power and (for me) and it's extremely comforting.

I've read glossaries of medical terminology trying to memorize terms and creating my own mental quizzes. Holy crap. (of course..I'm not going to reveal how well I do..). But, it's fun. I watched a 55 minute online video conference featuring two physicians discussing current protocol for multiple myeloma treatment. Most of the content wasn't new to me, but a few points were more detailed and helpful. More information, more comfort.

There is a saturation point, even for me. I've read numerous blogs of patients with MM whose stories are soberingly different from mine. Many of the stories have been concerning, disturbing and not optimistic. I can understand this, for if I scan through my electronically bookmarked collection of clinical academic journals of MM studies up to 2005, it's kinda bleak.

However, since 2007, from a medical research perspective, outcomes are much more encouraging. Living in this country is a huge plus as well, versus other nations with health care systems heralded as efficient and cost effective, but not by what I have viewed on YouTube. I have seen one too many videos of MM patients who've opted to chronicle their own care story online vs a blog. I've heard and seen their frustration in waiting six months for basic lab results and were unable to start any form of MM medications for 14 months because of inconceivable access problems and medication costs. I'd rather not even continue with what else I viewed.

I realize I'm only five months into this gig. I admit, I was in freak mode early on, trust me. And I still do go there still, but I don't stay there..I just visit. It's human nature.

Multiple myeloma is currently an incurable cancer of the blood plasma. GOT it.

Incurable is a curious word.

I have had time to do a lot of reflecting these past weeks about my current situation, my life, the lives of others. I have come to realize that many people have incurable things in their lives, and these things have absolutely nothing to do with one's physical health.

I wonder, perhaps I'm the lucky one.

At the risk of getting too much inside myself, I believe from the deepest part of my soul that multiple things are at play here, and I'm not just talking myeloma. Each of us has a plan in life. We are each fully able to be 100% engaged drivers of our own plan. Bottom line, our plan is a blend of who we genetically are, what we learn and experience in life, and what we decide to do with this combined “it” as we continually redefine who we are as a person.

Then, one day, something may interject itself into our life plan that is unexpected. It could be something absolutely wonderful, or, it could be something absolutely less than wonderful. Both are deserving of the same degree of understanding, reflection, engagement and decision-making as we keep evolving. Something wonderful can change into something dreadful...and something dreadful can change into something wonderful, as they become part of our life plan. Only we can decide what we do with what we've got, no one else. We can share our thoughts with others, seek wisdom, learn, remain open, make decisions from our own gut.

We can decide how it is we will manage and feel about what is interjected into our life.

So, I believe it is within the power of each of us to recognize and manage what is that seems incurable and decide how to deal, how to live, how to be.

So, that's where my head is at on this Sunday, and I'm feeling blessed, fortunate and GOOD!

Now back to the here and now of tomorrow, and my comfort zone of information, as I circle back to the beginning of this post to close out this update!

Last Monday, I met with my physician who is overseeing the protocol for my transplant at Hershey this week, along with the nurse transplant coordinator, and I came prepared with my list of clarifying questions about the minutia of this coming week.

For some reason, I wanted to know when exactly will I receive melphalan, the hi-dose chemotherapy that will wipe out all my bone marrow, myeloma cells and anything else that isn't nailed down in my system early this coming. Will they meet me at the registration desk with my I.V. pole? Will the I.V. drip be synchronized via an atomic clock? I had to know! How silly.
I did need to fill in some gaps about process and side effects. I learned everyone is different, and there is a good possibility I may feel pretty poorly for five to seven days, not just the first three days (which was what I had initially thought.) Hmmm. I've also learned that before, during and after the I.V. begins its drip drip drip, I must crunch on crushed ice to alleviate the mouth sores that typically go hand-in-hand with melphalan. Hmmm. Well, that's the way it goes. Ice, I can do. I also learned some people actually receive a morphine drip to ward off the discomfort. Hmmm.

Well hey, bring on the drugs I say—not interested in “toughing it out” AT ALL. I'd much prefer to be in La La land than feel like a semi is road testing it's tires on me.

I already knew I will be in isolation, as my immune system will be completely bottomed out & obliterated, thus subject to feather weight germs / infections. I've learned that I will not be able to leave the unit where I will be for the next two weeks. Based on how I progress, I will be permitted to leave my room. I'm told the melphalan will probably make me extremely weak and tired.

I will be infused with my stored stem cells on Tuesday, if all goes as planned. That process will jump start my wellness. I'm told there is always an aroma of crèamed corn in the room when stem cells are transplanted into a patient. Well, that's a new one. How bizarre.

I believe I have enough information for now. I will take it a moment at a time, and I will try to retain my experience for my next blog posting, which probably won't be penned until the last week of October.

So, I'm all ready for this next road trip. I spent some of today packing for my next two weeks: ironing my pajamas, packing color coordinated scarves, ear plugs, books, Ipod. All the comforts for chemo and a transplant.

Looking forward to the next time I will write a posting here.

Nothing incurable is in my way.


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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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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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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.

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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.

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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.

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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. 

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