Up a bit

Lately I’ve been curious. Wondering, do I pass the Turing test?
Normalization – Parquet Courts *

If I end off repeating the same thing in several conversations, it’s probably a sign that I should have posted it here. So… an update, particularly for those who have spotted me out and about a bit more than my recent version of “normal”.

The last week I have felt significantly better. Like I’ve emerged from a hole. I don’t know if this is just a good week, or if I’ve turned a corner. But it’s welcome either way.

I’m only half way through this stage of my treatment, so a long way to go yet. One of the difficulties, at the outset of treatment is that many of the side effects (anaemia, immune-suppression, pain) are the same as myeloma symptoms. In the short term, it makes things worse. It may be that my myeloma is now a bit more under control (I’ll have some new numbers in another week or so), and thus I’m simply more able to tolerate the treatment. If so, double good. The next 3 months may be better than the last 3. A relief. The last 3 have been awful.

There are still problems – mostly fatigue, bone pain, and posture – and I’ve still got the DEX to deal with. But compared to just a few weeks ago, it’s very much manageable. (A month ago, I was just home from my last internment in the haemo ward. It’s really not so long.) And I’m able to think clearly, without the fog, which is a massive improvement. Body and mind. Both important.

It’s half term next week. We would normally head for the airport, but cannot. Instead, we’re off to south Devon, which should be lovely. And I’m hopeful I will be able to really enjoy it, rather than just exist, which was the limit of my ambition until only a few days ago.

Living – as I have been – with the goal of mere survival is all very “well” (as long as success isn’t really in too much doubt). But it isn’t much fun. Now, fun seems attainable.

* Lyrics choice for those with a taste for art-punk. That’s a few of you, but maybe a select bunch. Everyone else… get with ;). While we’re at it, here’s one for anyone who has recently – as I have – been watching Wild Wild Country (on Netflix). About the Rajneeshee commune in Oregon in the 80s. Obscure subject matter, but I recommend it, if only to remind oneself how strange the world can be, and that our own destiny is as yet unwritten.

Still you’re steady with me always carrying the melody. Smiling all the while the paint chips off my mala prayer beads

Mardi Gras Beads – Parquet Courts

Grafting

Four weeks ago, 31 days ago to be precise, I swallowed what *might* be my last ever Ciclosporin tablet. It was a noteworthy moment. It was more than that, it was a milestone that warranted me taking a badly lit photograph to commit said moment to my iCloud memory. 
 
It was a milestone that was a long time coming and one which came with something I have been yearning for. It came with a deadline. At least, it came with something that is as close to a deadline as I can get. If I learnt anything last year, definite deadlines and timescales rarely exist in the weird and wonderful world of myeloma. So, when the Medically Trained Person said that if I was going to get Graft Versus Host Disease, it would happen within six weeks of me coming off the medication, I finally had a date in my diary. Additionally, as you do need to get all the relevant information, I was told that within the six week window, I would be most likely to show symptoms at the two week mark. 

If the odds were ever in my favour, I had an unpredictable Christmas ahead of me. I had something that could almost be called a plan. I had my date. A date to look forward to and a date dread. At least, that is how I felt for the first fortnight.

Four words have been stuck in my head and followed my thoughts from the moment I knew I was going to have a donor transplant. Graft Versus Host Disease, known as GVHD to save my fingers. It might be the one medical term that is easy to pronounce, but the mechanics of it, the good and the evil of it, waiting for it, are anything but easy. 

From the moment my sister’s cells entered my body, not a day has gone by where I have not replayed conversations in my head telling me that a transplant will be (much) more successful if one gets GVHD. That a lasting remission is most likely to occur if one gets GVHD. That one only wants minor GVHD and not severe GVHD. GVHD can be worse than the cancer the transplant was intended to treat. GVHD can kill you. My post transplant world has been categorised by these thoughts and unbearable waiting to see which one applies to me the most. 

Another thing I have learnt in the most painstakingly slow way, is that the symptoms for GVHD are so broad that it has made it impossible for me to trust my body. Let’s face it, before my last transplant I already had reason enough to not trust my body. It has left no room for rational thinking. Everyday, multiple times a day, with each bowel movement, scratch, headache, bout of indigestion and shooting pain, I would wonder whether it had finally come. It did not. It was like failing my GCSEs on a daily basis. 

I woke up and continue to wake up everyday and my body does not feel right, and I do not know the cause of it. One could say I ‘do not feel right’ because I am recovering from a transplant, but I want to know more. I need to be reassured and I cannot do it myself because my body does not feel my own. Maybe I should ask Big Sister. I am 98% her now after all…This constant questioning of the unknown something, is one awful, inescapable disease. Half hypochondria, part anxiety with a sprinkle of depression and that’s before we get to the diagnostics of the physical ailment. It is a weight far beyond my actual sizeable girth and one that has often been too much to bear. Telling myself that the last 150+ days have been about recovery and not failure has been my full time job. I could not talk or write about it through fear of jinxing my snail-like progress. 

My long standing mental list of acceptable GVHD symptoms consists of oesophageal problems, diarrhoea and a rash. By December, despite developing a bottom sponsored by Andrex, the Medically Trained People told me that I had not developed anything from my list. As unpredictable and unformed as my stools had become, the fact I had not lost any weight, led the Medically Trained People to conclude it was not bad enough to warrant the GVHD label. During that conversation, the Medically Trained Person started to talk about the prospect of not getting GVHD. I left St Bart’s dejected. I felt unwell, just not the right sort of unwell.
If I thought that my days post transplant on Ciclosporin were difficult, the booming ticking clock that has been everyday post 15 December has been something all the more sinister. The first day free from the nightmare inducing horse pills, felt promising. My stomach was worse than usual and I could not stop scratching my neck. Both things soon subsided and realistically, were most likely a symptom of my nervous energy.

Over the next fortnight, I felt awful. Each 24 hours felt like double that. I was impatient. I repeated potential outcomes over and over and over again. I am embarrassed to admit that I occasionally gave in to the Bad Thoughts. The more I waited for something conclusive, for my pot to boil, the more I predicted failure. Worse than failure, a few times, I concluded that not getting GVHD which would shorten any remission, would be the easiest outcome for me. It would mean that I did not have to live with the unpredictability of waiting for a relapse and I would not have to deal with the uncertainty that awaits me when I attempt to rejoin my life. The bottom line was that at least that outcome would have a definite ending…
Then do you know what happened? 

Two weeks to the day after I took my last pill, I got a mouth ulcer. By the end of that day, I had two, and then by the following day, my mouth felt like sandpaper. It still feels like sandpaper. I hoped, and a quick Google search made me hope that little bit more that the cause of my pus filled mouth was the elusive GVHD… One week after that, I opened my mouth to a Medically Trained Person and do you know what she said? 

Read between the lines.

In that single moment I went on a metaphorical diet and I exhaled. I text members of my Support Network an update. I phoned Mamma Jones with the news, to which she responded nonchalantly, “I knew it”. Most tellingly, I left the hospital with my smile intact despite having to wait two and a half hours to rehydrate to allow for my bloods taken.

Despite allowing myself to bask in my relief for a day, I’m not buying any party poppers or downing champagne yet. The champagne would be wasted on my rotting mouth anyway. The six weeks are not up yet and although I am now on medication to treat my mild GVHD, my fears remain. No longer am I waiting to get GVHD, I am now hoping that it does not worsen. More hypochondria. My liver has not been functioning as well as it ought and although I was told not to ‘panic’ about my results, I challenge anybody in my position not to do just that. After all, I may have finally got what I wished for, but I still do not have a body I can trust. 

As I said at the start of this, there is a very fine line between good and evil. I have two more incredibly slow weeks of trying to stay on the right side of it. 

And then, what the hell is going to happen? 

Patience is not my virtue.
EJB x

The Menopause

Now then, I have discovered that when one is aware that they may experience certain symptoms, they inevitably experience those symptoms, especially if the drug is new. For me, I am never really sure if the symptoms are real or imagined. I hope they are real, otherwise, I’m getting all hot and bothered over nothing. Literally.

With that in mind, I certainly hope that I am going through the menopause. Does the drug work even work this fast? Who knows? To be frank, I don’t even know if I am injecting it properly. I am following the manual…

Yesterday, I walked a few hundred yards to get the bus and I was sweating. In the last few days in fact I have had quite a few Own Personal Summers. I really hope that by the end of the week I am not sweating profusely in the 8 degree heat. The look does not work on a large person. I do not want to look like a stereotype please, okay?

As for the mood. It’s hard to tell. Throughout this ordeal I have good and bad days, but yesterday morning I felt like there was a mood enhancer in my flat. Even listening to Cat Stevens really, really loudly didn’t help. Today, I feel fine, full of witticisms that only I find funny.

I am also not, you know, in need of a certain something. The men of this world are safe, I’m not going to jump you anymore. Well, I wouldn’t have jumped you anyway, I probably would have just taken my knickers off.

These symptoms are on temporary though, so, be prepared.

Isn’t medicine great?

Intervention

“ALL RIGHT! ALL RIGHT!” Jeez, you guys. I’m just tryin’ to be a little entertainin’ here. You don’t have to get all huffy.” I stared back at the crowd glowering at me. I’d gotten the invitation to stop by for a quick chat, not realizing that there was going to be some kind of intervention. But here they were, all these Deludia readers, all up in my face. I walk in and the next thing I know I’m being yelled at.

“Look, Bob. It’s not that we don’t appreciate your attempts at trying some artistic writing, but we come here to read about Multiple Myeloma, treatments, how it affects us and maybe the things we can do about it. No offense, but if we wanted pulp fiction we’d rent a Bruce Willis movie.”

“Okay. I can see your point. But whoever said that this was a Myeloma blog? Huh? Answer me that!”

“Well, you sort of intimated it by spending the last four years writing about it.”

“Oh, well, okay. I guess there’s that…” I screwed my mouth up and considered their point. I remember when I was first diagnosed I was reading everything I could find, trying to learn as much as I could and to see if I could get some idea of what was going to happen to me.  It was, after all, pretty scary.  Then again, so was a lot of what I was reading. Then again, a lot of it annoyed me too, especially all of the inspirational stuff. People talking about how heroic we all were instead of telling it like it is …was.. well, you know.

“Now, don’t get offended Bob. Some of us like the stuff you write. It’s not like we hate you or anything. We just feel that you should dedicate a little more time to talking to us about how things are going with you. Some of us have kind of taken a liking to you, you old dog. We want to hear about your treatment and how you’re dealing with it. You know, that kind of stuff.”

“Huh. Well, that’s just the point. I mean why I’ve been writing about other stuff. I’m not taking treatment. There aren’t any treatments for me to take.”

“You’re kidding! But there have been all kinds of improvements –new medications, new methodologies. Aren’t you trying any of those?”

“Well, no, actually. The new drugs are analogs of the old ones that didn’t do me any good. The improvements have been in the reduction of side effects for the most part. I guess there’s been some improvement in efficacy, but it’s not a significant margin. Anyway, the doctors still feel they won’t do me any good, and so taking them would still be a wasted effort, only I’d be somewhat less affected by side effects. But basically, it would still make me pretty uncomfortable for no real benefit.”

“Oh. Well, you could tell us about that, couldn’t you?”

“Well, I just did, and that’s not the first time I’ve mentioned it. I guess you don’t read enough of my posts. I mean, that’s okay, no one is twisting your arm or anything. But I was feeling like a broken record there. ‘Dear Deludians, today is just like yesterday, it kinda sucks, but it could be worse.’ I was sounding sort of like a whiner. Actually, now I’m feeling guilty for not being a secretor –or whatever they call the opposite of non-secretors like me. I almost wish I had a whole bunch of problems to talk about.”

“Gosh, Bob. We don’t mean to make you feel bad. We’re just hoping for something a little more, uh –what are we looking for, guys? Uh, something more informative. Not that we don’t appreciate you attempts at artistic writing. I mean, it’s great, right everybody?”

Silence.

“Okay, let me see. I have been experiencing a number of problems and the bone deterioration has been progressing. Um, I have nephrotic syndrome, you know, I’m all swollen and bloated so I have to take Lasix and Potassium. Oh! I increased my morphine dose by 15 milligrams.  Twice daily.”

A smattering of applause wells up. “That’s great, Bob. Glad to hear it. I mean, we’d hate to lose you as one of our writers. We need every Myeloma blogger we’ve got.”

“Wow, I’m honored that I could make you feel better. See, I was sorta hoping that my being a guy with Multiple Myeloma that wrote about other stuff than being sick might be an encouraging thing. You know, show that cancer doesn’t have to consume your whole life and everything.”

“Well, Bob. It’s nice of you to think like that. But stop and think. What if the International Myeloma Foundation or the Multiple Myeloma Research Foundation took that attitude?  There’d be all of this, um, interesting er, fiction out there, but where would we get information on Multiple Myeloma?”

“Wow. I see your point. I never thought about that. Thanks for pointing that out. I really appreciate it. Seriously. I do.”

“Glad we could help, Bob.”

“Okay, well, now that we have that out of the way, check this out. I had this idea for a story about Vietnam that recalls when I… hey! Where’s everybody going? This is good stuff! This is what was happening while I was catching cancer! That’s relevant isn’t it? Hello?”

Sigh.

Another Cycle

I commented the other day to a close friend that I was worried that the relative remission I’d been enjoying seemed to be over. Of course, the next question was to ask why I thought it was true. I answered that there were a few clues. First, I’m not the kind of person who bruises easily. Through my life bangs and bumps never left any lasting marks on me. But lately just about everything was giving me bruises, especially when I went to the VA hospital and had an IV placed. The penetration area turned a gruesome purple and stayed that way for two weeks. The next clue was nosebleeds. Not heavy flow bleeding, just hints of blood when I would blow my nose. Again, through my life, nose bleeding was something I didn’t experience. That is except when I tried to do a back flip while jumping on my bed, and rammed my knee into my nose as I curled for the flip. I broke my nose and that bled remarkably alot, and left myself with a deviated septum.

Aside from that, my lumbar area and my ribs have been aching terribly, I’ve been running light fevers, and I’ve felt exhausted while not being able to sleep more than three or so hours at a time. I’ve also noticed that I wind more easily. All of these are the classic symptoms of Multiple Myeloma, and the degree to which I experience these symptoms is indicative of active cancer. Part of the reason for this is that the damage to the bones produces hypercalcemia, which is too much calcium in the bloodstream as a result of the bone deterioration. As the bone material is dissolved it is taken into the bloodstream. The result is hot flashes and a general sense of fever. The cancer also produces other symptoms, like  body aches, frequent unrination and constipation, along with dehydration that makes me thirsty all the time. It also produces weakness in the arms and legs with muscle aches.

When these symptoms appear in people with MM, a wide variety of tests are used to determine whether they are evidence of Multiple Myeloma or are symptomatic of some other condition. When a diagnosis of cancer, new or refractory is made, the next thing doctors will do is to stage the cancer. Staging is testing whose results indicate what considerations apply in crafting a treatment regimen. Some doctors will base a prognosis on staging, but this is a bad idea because the facts are that there is only the slightest coordination between staging and mean survival rates. Staging is determined by a number of factors that includes blood hemoglobin levels, the level of creatinine and calcium in the blood, how much bone damage has been sustained, and the level of antibody M protein in blood and urine. The last is not a factor for me because I am a non-secretor, a type of victim that shows no protein elevation. Where many Multiple Myeloma patients can use blood and urine analysis to determine their general state of involvement, I cannot. Instead my doctors have to rely on xrays, PET scans, and also bone marrow biopsies and aspirations to show the level of monoclonal cells. The collection of these results allow physicians to assign a stage to their patients affliction as stages one through three.

In my case, I was staged at three at the time of my diagnosis in February of 2008. According to my age and stage, my mean survival, if I followed the statistical averages, was approximately 19 months, with around 20% of people in my situation succumbing in a five year period. This was the reason that two separate oncologists gave me a six month prognosis on two separate and independent occasions. However, it’s depressing to know that I am fast closing on the five year window that is used to determine statistical mortality, knowing that I am likely somewhere within the unlucky fifth of Myeloma victims since I was placed there initially four years ago.

Improvements in therapy have appeared since my own chemo was abandoned nearly two years ago. Efficacy has been improved; only in the slightest of ways, but any improvement is better than none.  Also the discoveries leading to reduced side effects, like subcutaneous injection versus infusion is heartening. Relapsing Multiple Myeloma is much more difficult to tame, and with a failed history of treatment it’s difficult to keep a totally positive attitude. But there’s not much sense in condemning myself until the full information is in, and the available alternatives can be weighed. Suffice to say that right about now I’m not very happy. There is little to no possibility that they symptoms I experience are a transient bug, and brief discussions with my oncologist ratify my fears. So the order of the day is to try to continue on with the things I do and just take things as they come. But I began this new year just days ago with an attitude of hope –and it is not diminished by any of this. Today is just another day, much like the ones before it and ones which will follow.

In a Nutshell

I just happened to run across this the other day. Dr. Oz explains warning signs of five cancers. The fifth one is Multiple Myeloma. The club I belong to. Here it is “in a nutshell.” Enjoy.
P. S. I can’t figure out how to cut just the clip I want (anyone want to tell me how:).. so.. if you start at about 3.4 seconds that’s where info on Multiple Myeloma starts.F.Y.I I’m on cycle 10 day 18.Which is my 4th round of chemo for this month. Two more months to go.Two more cycles to go.Nine more rounds of chemo to goand then it will be time to start enjoying my remission!!
I’m starting to believe that light I see isn’t the oncoming train but the light at the end of the tunnel.
Oh and another F.Y.II have not broken one bone during this journey so I am feeling pretty good about that.
… and I really need to go to bed but my friendly steroid is keeping my mind racing. Sometimes I fight it and try to sleep and sometimes I just ride the wave until it crashes – usually by the weekend when my energy level drains to almost nothing.
So Farewell and goodnight for now.