Tag Archives: Stem cell transplants

Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

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Something Old and Something New

And now to interrupt your regularly scheduled programming to bring you breaking news. Not breaking news exactly, but news of a hospital new. Not a new hospital built in the 20th century exactly, but a hospital that is new to me.* According to my friends at Wikipedia, the hospital in question was founded in 1123. For the reason I was there, thank goodness technology has progressed since then.

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Exhibit A: A building not built on 1123.

Yesterday was Wednesday 11 February and yesterday I have travelled Eastward to the place they call the City, just a stone’s throw away from the place where a lady once fed some birds, to the hospital called St. Bartholomew’s. If you are not familiar with the place, Benedict Cumberbatch seemingly jumped off the hospital’s roof in 2012.

I have been referred to St Bart’s (we’re on a first name basis now), ahead of my proposed allograft transplant. I have known for sometime now that an allograft at the place where everybody knows my name was not going to happen. I had hoped I could get transplant number 1 out of the way before I was sent to meet a new team of Medically Trained People. I like to compartmentalise, but having had to wait for two hours packed tight in a tin of elderly sardines yesterday morning, it is probably beneficial that I got it out of the way, whilst I still have hair to have pulled out in frustration.

I heart the NHS and I understand the why patients need to wait. In the cancer business, my previous sentence is called a disclaimer because I am about to bad mouth the NHS. Not all of the NHS exactly, but specifically the St Bart’s waiting areas and their waiting times. I must be rather spoilt at the Macmillan Cancer Centre, because I found two hours of the waiting too, too much as evidenced by Exhibit B.

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Exhibit B: A chair with no view

You cannot see because Mamma Jones failed to photograph what she was asked to photograph, but there were not enough seats for the amount of humans on the floor. Nor was there sufficient room for people with walking sticks to safely navigate their way around the chairs. Nor were the seats sufficiently space apart to allow any form of privacy. My biggest bugbear? Very comfortable chairs. I believe at one point I described the waiting area on the first floor of the West Wing as ‘oppressive’. I am allowed to make sweeping statements like that because I have a really bad type of cancer.

Despite my first impressions of the hospital being damaged by the aged crowds and the customary, bright coloured walls designed to bring much cheer to those affected with cancer (exhibit C), the Medically Trained People were exactly how I like my Medically Trained People to be. The people redeemed the space.

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Exhibit C

The main doctor, Mamma Jones and I spent a good hour with, was informative and spoke to me in my sort of language. I almost understood what is going to happen to me. The head of the clinic, who popped his head round the door greeted me with ‘are you who I think you are?’… Well, personally, I just love that sort of notoriety. He had me at ‘you’.

Once that appointment was complete, I was sent across to another building, in the maze that is the hospital. The building had a meagre seven floors to UCH’s 17, but that did not prevent it from having a nice view when I was finally taken through to a treatment room. I say finally, for I had to part take in a little bit more waiting in another busy and cramped waiting area. In the small treatment room, I met another Medically Trained Person who have me reading material and in return, I gave her a cup of my pee. I then went on to give somebody else six vials of my blood on the ground floor. I failed to win the phlebotomist over in our five minutes with my wit. Unfortunate.

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Exhibit D – A Room With A View

All in, my trip to the City took six hours of my life away. I will say that the two hours of medical interaction was worth all the sitting staring into space and listening to other people complain. I’m allowed to complain, but anybody else who does so is just ungrateful… Anyway, in conclusion at some point in my future St Bart’s is going to be my hospital for around 100 days. Let’s say approximately 114 days based on the collection of papers resting in my hallway. I’m going to have to get used to the waiting and I’m going to have to get used to the seats, because I have a sneaky suspicion the Medically Trained People I saw know what they were talking about.

EJB x

* Apart from the time I went to the sexual health clinic because I thought that that was a thing grown ups should do.

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Doubt

On Thursday, I met with the transplant team, well, a transplant doctor, and I was introduced to the wonderful world of transplant options.

I have made my decision now about what transplant I will have, but it was useful to go through the options once more, so I have a rough idea of my future options. The one thing that became patently clear during this consult is that I will always be plagued by doubt. I will be plagued by doubt that I have made the wrong decision about my treatment. There are no guarantees in myeloma treatment and the truth is, nobody knows what the right answer is, until after. After I am gone, or if I am lucky, if I made the right decision and all is going well in twenty years time.

First things first, I was a fan of the doctor. He introduced himself to me by his first name and this does not happen often. In fact, it has not happened since my diagnosis.

In terms of transplants, there are three available to me, well, three and a half. The half is dependent on my results after the auto. Each option, is about time, my time left, and odds, and nobody knowing what is the best one for me. I suppose I am fortunate to have these options, because many people don’t. People do not have a sibling donor match and for those people, the auto and drugs is the only option. I have to see that my sister’s gift is a benefit to me, I just wish sometimes that it was not me making the decisions. There are too many variables.

Now, it was useful for the doctor to speak to me like I was not medically trained. I was provided with a helpful set of charts, which shows the risk of the procedures against the chances of the myeloma returning. Visuals are always of some assistance.

Auto
The first option and the most traditional, is the Auto. My stem cells. This has been around for longer and the stats, it’s always about the stats, say that there is a 2% mortality rate during the procedure. The procedure comes with a guarantee that the myeloma will come back, but nobody knows how long it will be before it does. Maybe a year, maybe three, maybe longer. Nobody knows. This is what I am having.

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Allo
This involves donor stem cells entering my body. The procedure comes with a 30-40% mortality rate, but a 40% (according to this chart, although I have heard 10-15%) chance of a cure. The big C. The Cure. I have spent a considerable amount of hours considering this, and the truth is, I am not ready for the risk. I want to live now. A one in three chance of dying, that may or may not come with a cure is not a viable option for me right now. I could put my body through all of that for nothing and then run out of options. I am not there yet. I am not ready to die and the chance of a cure is too small for me to run that risk. You may think that this decision makes me a wuss, maybe it does, but I am not betting with my life. Not yet.

Here’s the problem then, if I decide to have one later down the line, the mortality rate rises to 60%. I am not there yet.

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Reduced intensity
Now, this one is complicated. My understanding is that it is a reduced version of the Allo, which comes with a little bit of my own. This procedure has a 15% mortality rate. The Medically Trained People disagree with each other over its effectiveness because this, in the terms of myeloma is relatively new. Not new, but the stats cannot tell you if it can be a cure, because there has not been enough time to prove it. They do not routinely do this at UCLH. But, they do have a trial to see whether doing this reduced intensity directly after an Auto (three months after), has long term benefits. I would be willing to give this a go, but my body would have to behave during my auto to be considered. We know my body rarely behaves.

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Another problem I have, in addition to the risk of death and not knowing whether the decision I am making now is correct, is that my sister is not an ever ending resource to me. If at any time I have hers and I experience something called graft versus host disease and It comes back, then I cannot use her stem cells again (well, theoretically I could, but it would not be useful). Though, confusingly, a little bit of this disease is a good thing; it fights the myeloma. A lot of it is bad, it means long term illness or, you know, death.

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I know I am not a statistic, I am a person for the doctor told me so, but I do need to listen to the stats. At the start of all this, I was up for the Allo because it comes with the possibility of the Big C. Now, I have had the time to think about it and what the procedure means and where I am with My Myeloma, and what I want is time. I want time to live. Hypothetically, the Allo could give me more time, but it could also take it all away much, much sooner.

With all things myeloma, I think that time will help. Whilst the Medically Trained People may know what drugs are coming in five years time and the Big C is not in that bundle, there may be something in there to prolong the inevitable. Or in ten years. Nobody knows the answer.

For now, I am going down the safer route and I have to live knowing that my decision may be the wrong one.

β›”

Now then, what’s for tea?

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