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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