My Finest Hour

Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog.  I am far from finished with the blog; that was clear. What was not clear, was how I was going to rip off the gargantuan plaster covering my keyboard and get my thoughts to screen after such a long break and such a massive development. I know I have been neglecting this blog, but do not think I have not been thinking about it. Every other day I look at the WordPress app on my phone, a reminder of my world and I challenge myself to finish a blog that day. Clearly that failed. I get distracted. I probably had to wash and focus on my fluid intake. I am all so easily distracted. 

Where was I? Yes, the story I am eventually going to to tell is far from being hot of the press. In terms of speed, if I were a missionary in Africa in at the start of WW1 writing home to tell my family I had fallen in love with Humphrey Bogart, the news of said union would probably have found its way to my family long before I could find the words to explain the last few months of my life. 

In my defence and I have a big one, the last few months have been an exhausting and confusing blur. Contrary to what it may look like, I have very limited free time. My main priority has had to be me working out how I feel and how I want to hold myself, which is closely followed by doing daily tasks like washing, eating and forming sentences. No mean feat, all things considered. 

To produce something, something not soaked in self pity and embarrassment, it was impossible for me to immediately put all of this in my blog. Please don’t misinterpret me, I have a lot of words in my arsenal, I just do not seem to have the capacity to put them into any form of working order with a hint of wit. My Myeloma has dumbed me down. I have had a strong  will to write it, but at each start attempt, if I managed to get any  further then the first sentence by inner monologue would start  singing a tune of my own creation called “Blah” or I would want to play at Candy Crush and think of nothing. The words would the be lost and more often than not, I then fell asleep. I would then wake, I may be sick and then the cycle starts all over again. It’s an invisible pressure that only I see. I am all too  aware that I will get a crispy clear clarity once my words are published out in the Internet ether, but it’s just being able to get in there…

So yes, your forgiveness is something I ask for. I now recommend that you buckle in tight for this is going to be a long one, for this, all of this, has been anything but my finest hour. 

My last blog post was a boast, it was not even my boast, it was a boast made by a Medically Trained Person. My life was on track, I’m not sure what track but I was moving in a direction with less drugs, regular stools and finances. I had trepidatiously allowed myself to think more than a month a head. I was moving in a direction that excited me, secretly hoping for and  releasing my grip on the thought that My Myeloma was never far away…

As it turns out, I was not far away. Some time after the ‘sweet spot’ comment, I went to St Bart’s for a clinic appointment that I thought nothing of other than my attendance was a requirement. I had become comfortable and my guard was down. Imagine my horror then, when after a lengthy silence and grimaces of concern, the Medicaly Trained Person told me that after months and months of nothing, I had a paraprotein of 4. I don’t really remember what happened after that. I know we discussed scenarios and she tried to but a positive spin on it, but I knew there was only one direction for this development and it was not an error on the test. I had felt it in my bones for weeks but I had been reassured that my new pain was nothing to worry about.

In that morning, I did not cry. I stopped talking. I had one desire after that appointment and one desire only, and that was to get home. Unfortunately, I had to queue for an eternity at phlebotomy and then at the pharmacy before I  was allowed to go home. By the pharmacy, my tears were involuntarily coming and it remained that way for several hours. By the time I had walked in my front door and tried to get the words out to Housemate, I was on the floor. The guard was truly down.

All the fear I had about this being the worst relapse I would ever have, the relapse after the hit and hope of allograft, came out of me that late afternoon on my hallway floor and then in my lounge  and I have been dealing with fact ever since. 

It’s Failure. I feel like it is one big failure. I need to be absolutely clear on this point, the fault is not my donor’s, My Big Sistee’s. She did everything she should have done and more, my body just failed me.I feel like I failed her and everybody else who was hoping for a happier ending for me. I even feel like I failed the people not wishing me well. Trust me when j say that this is not hyperbole; I  was and remain devasted. 

The weeks that followed were bad. I had slipped deep into a black hole. It was the deepest, darkest pit of a black hole that I tried to keep to myself. I was so embarrassed by this happening once again, dominating lives once again,  that bar a handful of people, I kept all developments to myself. As well as worrying about losing my life, I feared this would be a development that would lead me to losing people. I have to be in bed by 09.00pm for goodness sake and I cancel my plans all the time. 

I had to wait for what felt like weeks, but really it was only a matter of days, to find out how bad it all was. I fixed my thoughts on it spreading, questioning why my pain had increased so dramatically, so quickly, self diagnosing secondary cancers with aplomb, and then plotted what the next steps would be, all without talking to a Medically Trained Person. The 2016 I had envisaged for myself was quickly slipping away from my grasp. 

For the first time since all this started over four years ago, I asked myself whether it was all worth it. I questioned whether I wanted any treatment at all. I didn’t know what my treatment would be. As far as I was concerened, in my darkest thoughts, I was on a one way track to palliative care. To add just that extra bit of sweet icing to the cake, I was also managing a fast deterioration of my bones. The pain was constant and restrictive;  and  included no bending, assistance required getting out of bed and off the toilet and no picnics to name but a few. I still worry about travelling long distances along in case I get too tired. I have once again lost my independence and I didn’t feel like I could share it with anybody. It was too sad.

I couldn’t talk to anybody about this. Perhaps the scariest thing of all were my thoughts about how I would die both naturally and unnaturally, as I tried to decide which option would be best. In those never ending says, all I could see for my life  was the at some point soon, not too far away it would end. Perhaps you can understand why I did not want to blog about this. Counselling, lots of counselling had to come first. 

I have always been realistic when it comes to my treatment, but I dropped my guard when I heard the sweet words of the ‘sweet spot’. There is no way of knowing if I would have handled it all better if I had been better prepared. If, during bouts of down time, I had not allowed myself to day dream about usual 32 year old stuff, maybe not the babies for I am a realist, but I would dream about independence, love (I’m talk under-the-covers-kind) and just living. I thought and planned for a life where I was not just going through the motions of my drug regimen. 

I could not then and still can I not see how I can reconcile this with relapsing. All my peers are moving in one direction, their direction whilst I feel like a am treading water until the day I am told that the Medically Trained People can do no more. There are times when I feel I am  the saddest, poorest spinster, adult child that there ever has been. I know that the more drugs I take the harder it will be to keep hold of my former self. There will be more staring into space as I try to follow a conversation and more Friday night’s out longing for my bed by 7.30pm, afraid to tell my friends that I am struggling to hear what they are saying.

All the time I was fighting the peak of battle in my head, I was being poked and prodded and then waiting for the Medical Trained People to give me the low down. To be precise, give Mamma Jones or Housemate the lowdown; I was in no fit state to hear it myself. There was too much waiting. I was in what can only politely be described as a heightened sense of anxiety. Looking back, it is a wonder I held it together as well as I did. Potentially, I thought that each test would show  that I was on a priority boarding ticket to the kicked bucket, but alas, that was not the case. My biopsy result did not have any active cancel cells in it, which even my brain worked out was better news than cancer being present. My scan did show new disease in my pelvis, both hips, both arms, both shoulder blades my ribs and in my cervical spine, but as far as I know, there was nothing requiring urgent attention. I have been told to be very careful, which means no lifting, very limited walking and no picnics. I could add more to the list, but I conscious of my word count. Just imagine an even bigger loss of independence.

I mean no disrespect when I say that the only  good thing to come from all of this is my transfer back to UCLH. The reason for the transfer is related to drug funding. One should never underestimate the benefit of being able to email a Medically Trained Person and have them respond to you and make you feel worthwhile. I feel safe at UCLH. I emailed the team at UCLH to inform them of my relapse and do you know how long it was before they had phoned me to see if I was coping? 15 minutes. That makes all the difference to me (KEEP OUR NHS ❤️!).

We now quickly and smoothly enter the next phase in my treatment. I like to call it the brain altering, stomach churning, sick phase or to put it more simply, The Drug Phrase. I have limited say on my treatment and I am happy with this. I trust my Doctors to prescribe me the right course of treatment. That is not to say that they have not been  without their teething problems. Did I mention a propensity to vomit? 

I am currently on a course of oral chemotherapy supported by a four weekly dose of Zometa for my bones. I am on a daily tablet of Revlimid, a weekly tablet called Ixazomib, which is basically an oral form of the Cilit Bang I was on in 2013-14, all washed down a healthy dose of Dexamethasone or steroids to you and me. I had increased my MST to 120mg twice a day to manage the pain, but became so constipated, I could not eat and the side effects became worse than the pain itself. Got it? With my supporting meds included, I am currently on between 24-40 pills a day. My first cycle was intolerable. I got into bed on a Monday and walked out of it a fortnight later and 8kg lighter. The following cycle was easier to bear, but nothing can remove fatigue as the unpredictable ruler of my life.

For the unitiated reader, the fatigue I have with chemotherapy goes far and beyond me feeling a little tired. At it’s worst, I cannot move, I cannot sleep or I oversleep, I fall asleep with the cooker on, showering takes two hours due to rests breaks and I have no capacity for a challenge. A slight problem to you, is a huge, gigantic issue for me. I once earned a fairly respectable BA and last week, I spent at least 10 hours fretting about how I would zip up a dress in a hotel. As a consequence I increasingly find myself going from docile to dogged in a matter of seconds. My fatigue gives me anywhere from 30 minutes to four hours of ‘good hours a day before I have to crawl back on my bed or the sofa. The beautiful part is that I cannot predict when or where it is going to hit.

I could go on and on about my recent experiences and do not worry, I will. I have now brown the seal. I already have a fairly detailed analysis of my bowel movement coming your way soon. For now however, I will end this blog. 

I will however say this, the day I started my treatment, the first day I took my new regimen I had no doubt in my head that I was going the right thing.  There was no doubt. I felt empowered. If I have taken one thing away this last four years it is that my illness is not just about me. I do not know what the future holds, but I know that I am not yet ready to let things happen without me. There will be days when I will doubt this, the feelings of ‘woe is me’ are inevitable and healthy. For me, right now, I am glad I was just given had the opportunity to regurgitate last night’s dinner. I am glad that I am likely to spend all day in bed feeling like I have been hit over the head with a sack of potatoes. I’m not glad about all of this because nothing remotely fun is going to happen with my day. I am glad because at some point in my near future, I will be able to do something worthwhile and right now, that is the only thing I can ask for.

EJB x

P.S. For all those myeloma sufferers out there; this works for me. This is my story. Please do not feel like I am telling you how to behave and do. You follow your path.

Back to the Future

My sensei, Spanky, taking a break to reassess things.

My sensei, Spanky, taking a break to reassess things.

I enjoyed two full months of recovery from the latest attempt to control my cancer, multiple myeloma. At first, that drug worked well. The harsh side effects, however, made me question whether it was worthwhile. When its effectiveness waned, I took a break to reassess things.

I have lived eight years since diagnosis. Each year I delve deeper into the trough of wonder drugs. Initially, neurotoxins stunned the cancer and numbed my feet. Then, the blunt club of alkylating chemo, in concert with a stem cell transplant, staggered the disease. When it righted itself, I tried sophisticated novel agents. A mandatory side dish of steroids scrambled my brain while helping these therapies suppress the myeloma. The disease, nonetheless, sputtered back to life.

The long infusions allow me to catch up on my reading.

The long infusions allow me to catch up on my reading.

Now, new concepts push aside the old standards. The drug holiday for my cancer ended in May. At that time, I started receiving a monoclonal antibody. MABs target a specific feature on the surface of MM cells. In addition to killing cancer cells, the MAB alerts the immune system to these intruders. Most side effects occur at the moment of infusion. Consequently, the IV drips go slow. If respiratory reactions occur, the feed is stopped until symptoms resolve. Fortunately, I don’t react to the infusions, but each visit still takes five to six hours.

Clinical trials demonstrate that the particular MAB I receive can be effective on its own. The FDA awarded it fast track approval in October of 2015. MABs work for many, but not all. They are not the Cure. Subsequent trials that combine the MAB with a novel agent show unparalleled response rates. For some individuals, the length of progression free survival remains undetermined. Such immunotherapies portend hope.

Savannah, my granddaughter, marching confidently into the future.

Savannah, my granddaughter, marching confidently into the future.

I continue to be free of serious symptoms associated with myeloma. Most of my issues derive from the side effects of treatment. The current regimen has a modest effect on my quality of life. Yet, I must resist jumping to conclusions. This is biology; these are trials. My future relies upon matching the cancer’s resilience with patience and persistence.

The latest numbers can be found in The Drill.

Tagged: cancer, cats, chemotherapy, melphalan, monoclonal antibodies, multiple myeloma, Providence Hood River Memorial Hospital, relapse, remission, revlimid, stem cell transplant, steroids, writing

At last some good news..

Yet again it has been so long since I last posted that I am having to play catch up.  Time has passed so quickly, the exceptionally mild winter moved as swiftly as the swallows and swifts arrived into an early warm and sometimes very wet Spring, fruit trees laden with pink and white blossom and new green foliage eagerly bursting through the soil. I was in hospital the latter part of March and half way though April last year having my cord blood transplant and more or less missed out on Spring so it has been a real delight to witness it this time. However it has been extremely hard to find the energy, concentration and inclination over the last few months to update my blog. I have tried and done the odd bit at a time but now I’m just going to get an update out there whilst I’m having a steroid day!  It isn’t all I wanted it to be but if I put it off any longer, it may never happen. It is somewhat a technical update about treatment which hopefully you will get through in order to understand the backdrop to my world the last few months.  Life with myeloma and on treatment has been even more of a rollercoaster ride than usual. Coping with the side effects of the treatment, fatigue, chemo brain, depression and infections has taken its toll. Although it has been about 5 months since my last post, time has a different dimension for me with little to distinguish one day to the next, yet although I am doing less, it doesn’t feel like it is passing more slowly. An average day for me might consist of a hospital appointment, going shopping or an hour in the garden or a meet up with a friend or watching TV and that is all I can manage except on steroid days.

Lets start with a (fairly) brief recap…

Late December 2015

I ended the last post on a bit of a cliff hanger as I was waiting for my clinic appointment on 31 December to find out the result of the light chain test from the end of the second cycle. It was very bad news, they had risen sharply to 3600mg/l. The hope that Revlimid might have kickstarted some graft versus host disease and with that some graft versus myeloma effect or that my new cells would be resensitised to treatment were dashed. I was desperate to switch to a different treatment but there wasn’t anything left on the NHS that was available to me apart from Bendamustine, an old chemotherapy drug from the sixties which seems to have had a bit of a renaissance recently for treatment of relapsed myeloma but really is the last resort. Rather than that, the boss suggested I have a third cycle of the same treatment but increase the amount of Dexamethasone (the steroid) to 4omg x 4 days each fortnight over the 28 day cycle, an enormous dose and add Clarithromicin to the treatment regime. Clarithromicin is an antibiotic which has been shown in a recent study to overcome resistance to Revlimid, incidentally a study that I came across and informed my consultant about!  In part the reason for the high dose of Dex was to try and help bring down my creatinine levels as they were elevated which was a sign that my kidney function was not good. The high dose dex might also help to keep a lid on the rising light chains as by now I was starting to feel the effects of active myeloma such as raised calcium levels, anaemia, fatigue and the reduction in kidney function. I seriously thought that I was approaching the end of my myeloma journey and that I might have about 6 to 12 months left. Note the word “left” rather than “live”. The psychotherapist on the Haematology ward whom I had been seeing didn’t try to dissuade me from my view but suggested I try and prioritise what was truely important to me if I did only have that amount of time left. What would I pack in my suitcase for 6 months, what would I leave out? What for 12 months?  I found that analogy helped me put in place some plans for life rather than be waiting to die. I still haven’t packed my suitcase though!

January 2016

I started my third cycle of Revlimid, high dose dex (interestingly sex, always comes up on my predictive spelling instead of dex but I certainly wasn’t prescribed that!) and added daily Clarithromicin. A rather depressing and anxious start to 2016.

I got a high temperature about 10 days later and had to go to A&E, which is standard advice when you are a haematology patient on treatment or recovering from a transplant. After about 10 hours on a trolley in a side room there, I was transferred to a haematology ward and pumped full of IV antibiotics and fluids.  I ended up staying in just under a week as I was still getting temperature spikes and the medical team were waiting for the results of swabs and blood cultures. I was given two units of blood as I was extremely anaemic and I had stage 2 acute kidney disease which used to to be called acute renal failure which is what led to my diagnosis. There is only one more stage! I had a very frank conversation with the boss on the ward round and she agreed with me that as no cause of infection could be identified and in view of my other symptoms it was more likely that it was active myeloma which was causing these problems. I was taken off Revlimid whilst in hospital as having chemo when poorly isn’t a good idea and it didn’t seem to be working anyway.

Lack of sleep, dex withdrawal, stress, anxiety and fear all played on my mind and I did think I was heading to a position where I was too ill to have any more treatment and the light chains would rise rapidly out of control ultimately in my case clogging up my kidneys and causing end stage kidney failure. After a lot of patient advocacy, I was released on parole 5 days later, the condition being I had to attend the day unit for the next few days for IV fluids, antibiotics and top ups of  magnesium, phosphates and potassium. They were long tiring days but better than being stuck in hospital and my kidney function improved.

At my clinic appointment on 18 January I  found out the good news that my light chains had gone down to 1300.  Praise the Dexamethasone! I felt a huge sense of relief and the fear that I was approaching the “end” subsided.  I started a 4th cycle of the same high dose dex regime on 26th January.

I have already described in previous posts, particularly in Dexamethasone the good the bad and the ugly just how badly I am affected by it, more the withdrawal or the crash than the actual days of taking it which just causes me to be a bit hyper and gives me some energy.  It is the depression, irritability with myself and others, low mood, lack of sleep, shakiness in my voice and hands and lack of mobility due to muscle wasting that affect me so much. My physical appearance changes too, weight gain and redistribution of weight to the torso, the red moon face and hamster cheeks, humped neck, bloated stomach and hair thinning that when I see myself in the mirror I hardly recognise myself.

February

Half way through the 4th cycle when I was tested again my light chains were down to 500mg and by the end of the 4th cycle they were 344. Everyone was happy. It helped me cope with the side effects of the treatment, knowing that it was working.

March

In early March I went for a short break to Sicily with my friend and travelling companion, Jet. It was a bit of a mixed bag health wise as I had sickness and diarrhoea for some of the time and the usual fatigue. It was unseasonably cold and wet too at times but it was a change of scene and I really liked the vibrant folk art paintings of a local painter, Fiore, some of whose paintings were in our B&B but we also saw him at work in his studio. I loved the painted plastic table and chairs outside it. What a transformation of boring white plastic outdoor furniture enhanced by the bowl of Sicilian lemons!

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On 26 March it was the one year anniversary of my cord blood transplant. There was nothing to celebrate about it apart from the fact of survival which is good of course, given I was given a 20% risk of mortality in the first 12 months. It was more a time to note and grieve the fact that it didn’t have the desired effect of my new immune system attacking the myeloma. I’m still not over the disappointment, but don’t know how to reach closure and let it go. Hopefully more about this in another post.  I didn’t have much time to dwell on this as on 28 March I was back in hospital again for a week with a high temperature, this time with parainfluenza 3 which in immune compromised patients can develop into pneumonia. I was given the usual IV antibiotics and fluids but had to stay in until my temperature was stable and they got results back from swabs and cultures so they could see what to treat any infection with. I hate being in hospital and didn’t feel ill enough to be there which I said to the doctors on more than one occasion but other than discharge myself and risk having to go back in again with a temp spike and lose my room, I didn’t have much choice. I was taken off Revlimid again and as my light chains had gone up to 440 at the end of the 5th cycle that caused me some anxiety.

April

On the weekend after I got out of hospital  I had just about recovered from the paraflu and felt well enough to travel to my parents to  celebrate my Mum’s 80th birthday, then I spent the following weekend in London with a friend taking in an exhibition about Monet and the modern garden and lots of good food. It felt good to be able to do these kind of “normal” things but when I got back I felt poorly and I came down with yet another viral infection with cough and cold symptoms, this time my old foe Adenovirus. I am only just getting over this nearly 2 months later and it has really wiped me out.  On 21 April I started a 7th cycle of Revlimid, Dex and Clarithromicin. Light chains were 98 at the end of the sixth cycle. That was a really spectactular drop especially as that cycle was messed up as I wasn’t on treatment for a week and a half.  I was delighted and relieved but slightly anxious that it could be a lab error. Also the boss pointed out recently that I did take a double dose of dexamethasone during that cycle.

May

Despite the fatigue and the virus, May has been a quite a busy month so far. In early May, I ventured out in the evening, a rare event, to a couple of dance performances. As a birthday present from my parents, I tried out my flying skills on a flight simulator which was surprisingly realistic and fun. I landed in Hong Kong and St Maarten in the Caribbean fairly successfully without taking off too many roofs!. Then over my birthday I celebrated with friends and family with lots of meals out and cake. I also did a lovely 5 mile walk in Dovedale in the Peak District. It was all quite exhausting especially as I was steroid crashing but I’m glad I did it. I really didn’t think when I was first diagnosed at 49 in 2010 that I would make it to 55. At that time there was a 40% chance of survival for 5 years.

I started an 8th cycle of treatment on 19 May. The dex dose has been reduced from 40 to 30mg for the first 4 days of the cycle to see how that goes. The boss thought my fatigue was due to the cumulative effects of the treatment and the viral infections.  I also found out the results from the 7th cycle, my light chains were up to 160 from 98. Although up a bit, I was relieved that the previous months result wasn’t likely to be a lab error as they were not far apart.

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Ok that is the update done at last! I included some of the things I have managed to do as a reminder to myself that there have been some good times and productive enjoyable days, but mostly I feel like life has passing me by as the last couple of months have been really tough going, both emotionally and physically. There have been so many arrangements I have had to cancel or events that I wasn’t able to go too because I’ve been either been too tired, unwell, or just not the right mind to attend or all three. Then I berate myself for not going. I have learnt that fatigue is not about whether I sleep well or not, which I generally don’t, verging on insomnia at the moment, but like an insidious relentless brain fog. On steroid days I make all sorts of plans, have more energy and feel quite good. But in the crash period that follows all those plans go out of the window and I just try to get through the day. It means that going to weekly classes or getting involved in anything on a regular basis is really difficult to manage as I never know how I am going to be from one day to the next. My quality of life is fairly poor at the moment and that may not change as I will be on treatment for the rest of my life now. When the current treatment combo stops working as my myeloma develops resistance to it, I will switch to something else. There will be no periods of drug free remission, no more transplants, another donor transplant would be too toxic and unheard of. So my challenge remains as always to live in the moment and live as well as possible, accept my limitations, get the balance right and not give myself a hard time if I don’t always achieve it. As I like to think of myself as a pretty good card player, I find this quote very apt!

 

 

 

 

 

“Life is not a matter of holding good cards, but of playing a poor hand well.”
― Robert Louis Stevenson

 

 

 

Buying Time

“Be happy for this moment. This moment is your life.”

Omar Khayyam

White Breasted Nuthatch

White Breasted Nuthatch

Morning: I wash dishes, my aching wrists soothed by the warm water. In front of me, through a window opening to the east, I watch a nuthatch spiral up the trunk of our lilac bush. Rays of sunlight pierce the trembling leaves, and the bird’s eyes wink like sequins.

I injured my wrists in the garden. Recently, I’d planted snapdragons and cosmos, tomatoes and clumps of fescue in the backyard. Out front, next to the south wall of our house, I pulled weary, overgrown plants and replaced them with new perennials. I weeded by hand the ubiquitous dandelions from the lawn. I plunged my knife deep into the earth, in search of their elusive roots.

This gardening work seemed impossible six weeks ago. I struggled to cleanse my lungs of recurring upper respiratory infections. Chemotherapy for my cancer, multiple myeloma, weakened an already compromised immune system. Each week, there was the roller coaster ride of steroids to manage. Treatment proved effective against the disease. But my overall health and spirit suffered. So, I temporarily quit taking the drugs.

Hiking at Rowena Crest in the Columbia River Gorge.

Hiking at Rowena Crest in the Columbia River Gorge.

Cancer patients, after diagnosis, glue themselves to the instinctive desire for survival. Fear leads to passivity. I tolerate chemo regimens that make me drunk with side effects. I resign myself to the internal fight. Externally, however, life deteriorates. I desperately needed a break.

Monthly labs provide evidence of the imbalance in my blood counts. I tire easily and my immune system under performs. A clot of malignant myeloma cells in my bone marrow takes up space normally reserved for productive cells.

For the last seven years, a continuous stream of chemical treatments kept the disease stable. But, the drugs cause as many problems as the cancer they suppress. Yes, the myeloma will advance without treating it, but stability comes with a unique set of questions.

Crossing a bridge, now that I've come to it. From a hike in Mt. Rainier National Park a few years ago.

Crossing a bridge, now that I’ve come to it. From a hike in Mt. Rainier National Park a few years ago.

This past winter, I worried, “Is it worth it? What is the true value of the time I am buying? Do I really want to keep alive this version of myself?”

Well … yes. I’ve learned that a drug holiday treats both the body and soul. It has risks. Yet, I can garden again and not collapse with fatigue. I sleep better. I have a renewed clarity of thought. And, now that the gauze of chemotherapy has lifted, I can see and feel the rhythms of the natural world.

The realist in me knows that more chemo awaits. But perhaps I can find a balance where the treatment suppresses the cancer without unduly transforming my personality and lifestyle. It’s an idea that contributes to my objective fascination with the disease. Unlike many cancers, multiple myeloma lends itself to the possibility of long term management.

Dr. B and I have a plan in place. We are trying to solve the puzzle. Later this month, if I meet all the criteria, we will initiate a new program.

Tagged: cancer, chemotherapy, Columbia River Gorge, dexamethasone, gardening, Hood River, Hood River Valley, multiple myeloma, nature, Rowena Crest, steroids

The University of Cancer, Part 3

Ripples in a Puddle

Ripples in a Puddle

I tried to get ahead of spring in late January. I prepped my flower beds with bags of topsoil. I stirred the mucky surface saturated with winter rain. Then, more rain interrupted my effort and I contracted a couple of acute upper respiratory infections. These, coupled with what has evolved into an intolerable treatment regimen, made yard work difficult. The rough patch persisted and I became so tired of being so tired.

Spring doesn’t wait. What is done, is done. I make amends for the delayed dreams of January. I’ve ordered flowers. I’ll plant a couple of tomatoes in the sunniest spot. I hired out the pruning of the burning bush hedges, the laurels, and lilacs. I fertilized the lawn. I play catchup, utilizing the energetic days to spread weed-ex and cedar chips, in hopes of minimizing hand plucking crab grass later on. Spring races away in unfettered growth, but leaves behind a fertile path to follow.

The Most Telling Cancer Marker for MM is the M-Protein Level.

The Most Telling Cancer Marker for MM is the M-Protein Level.

As to that pesky cancer: it has an uncanny similarity to spring with its desire to grow, grow, grow. The drugs act like weed killers. The cancer retreats. Along with it, though, my quality of life declines.

Winter found me reeling from recurring infections and the harsh side effects. I couldn’t tolerate the drug I’d switched to last July. It worked, but I paid a price. I insisted on down-dosing in March. At first, the lower dose seemed to alleviate the fatigue and weakness. Halfway through the month, though, the doldrums re-appeared. I felt shriveled by the meds. Viruses poured through the sieve of my weak immune system. These, along with anemia and increased neuropathy in my feet and hands shrunk my world. Each week, I was either a zombie or a steroid junkie: dull as a stump or perky with unfocused ADHD.

So, recently, I chose to stop taking all meds. I’d had enough. I needed to come up for air. After six plus years on the teeter-totter of various regimens, I’d forgotten what it felt like to be me.

White Paper Birch Shedding its Skin

White Paper Birch Shedding its Skin

Soon, I’ll inform the new oncologist, Dr. B. The timing is excellent as he began work at Providence, Hood River in March. We will start from scratch to work on another way forward. 

Several options exist for MM patients in my situation. They come with unique side effect profiles and a paragraph or two of small print dangers. Thus far, until now, I have breezed through the treatments, tolerating each change. I am hopeful a more balanced plan, suitable to me, can be found.

More numbers in The Drill.

 

Tagged: cancer, chemotherapy, dexamethasone, gardening, Hood River, Hood River Valley, multiple myeloma, nature, peripheral neuropathy, pomalidomide, Providence Hood River Memorial Hospital, relapse, remission, steroids, thalidomide, writing

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

Hot Flashes And Cold Realities

The Christmas Gang. L-R-My Brother Tom, My Wife Marilyn, Son Noah, My SIL Karen, and Me Enjoying Post Movie Drinks.

The Christmas Gang. L-R-My Brother Tom, My Wife Marilyn, Son Noah, My SIL Karen, and Me Enjoying Post Movie Drinks.

As usual, up at 4 AM on Mondays. I like to take my weekly steroids early. The plan is to avoid the first night’s insomnia. I re-supplied the wood stove. It kept a bed of coals through the night. I added a couple of logs and then rested, even napped, on the couch. I awoke an hour later from an exquisite dreamless sleep and felt hot flashes from the drug. So it goes this winter: steroids, an oral chemo, and infusions of bone strengtheners.

I’d spent Christmas in San Francisco with my wife. We visited our son, Noah, and my brother and his wife, who I have written about previously here and here. We rented a suite at a hotel in the SoMa, the south of Market Street neighborhood, close to Market Street, on the corner of 2nd and Folsom. We flew into Oakland and used the BART, to navigate between the airport and SoMa and the East Bay, where our son lives.

Cranes at Work in the SoMa, Building Something New and Wonderful.

Cranes at Work in the SoMa, Building Something New and Wonderful.

The hotel room was within a block of his office in SF. He is an attorney with the Environmental Protection Agency’s Southwest Region. He works on a team that reviews permits under the auspices of the Clean Air Act.

This neighborhood has it all: glorious steel and glass high rises, expensive hotels, theaters, tourist restaurants, and everywhere, everywhere the homeless, scratching out a daily existence like wild animals, only sometimes crazy, jabbering nonesense, begging for food or money, bathrooms, creating residences out of shopping carts and blankets, doorways and alleys. Overall, they behave themselves, less they be rousted from the moveable feast of their territory. The hubbub of business murmurs around them but Christmas provides a reprieve from the traffic and noise, for much of the SoMa was closed.

Market Street at Dusk.

Market Street at Dusk.

My wife and I walked the streets, noticing that our son negotiates the ironies of the haves and have nots each and every day. He is successful. He is also paralyzed and schleps from the BART at the Montgomery Street station to and from his office, rain or shine in a manual wheelchair, dodging the dog shit and the spit on the sidewalks, witness to the baffling inequalities of American life that have taken hold during the last three decades.

He was injured in 2002. Many of his disabled peers don’t enjoy the independence that he has attained. His determination to educate himself opened doors of opportunity, which he rolled through.

Life is hard in a wheelchair, but it’s not lost on me that many of the homeless also have disabilities, both physical and mental. In a perfect world some may have found the support and strength of will to overcome the obstacles of life. Family seems to be the only program that is not underfunded. It is flush with love, not dollars. Veterans programs, the beneficence of religious organizations, and social services wrapped in the saugaged conscience of city politics take a scattershot approach that misses as much as it hits.

On Our Way to Dinner and a Movie at Embarcadero Center.

On Our Way to Dinner and a Movie at Embarcadero Center.

I arrived in SF recovering from a head cold. It worsened upon leaving the city. Flying never helps but it’s not the outright cause. That would be my weakened immune system, a result of the blood cancer multiple myeloma that I’ve lived with for eight years.

When I get sick, I seem to wander farther from shore into the swamp of my disease, tainted by eight years of drugs spoiling what once was the healthy wetland of my bone marrow.

My cancer markers may be stable, even leaning toward improvement, but I’m sick with survivorship: numbed feet, fatigue, yadda yadda yadda … the worst is shortness of breath because it is accompanied by the sensible and terrifying paroxysm of panic. These little viruses often cause congestion of nasal passages. I occasionally awaken at night feeling as if I’m being buried alive. Over the counter remedies help but also add to the toxic swill accumulating in my body tissues.

The Christmas Skyline in San Francisco.

The Christmas Skyline in San Francisco.

With drug administration, the patient wants to take the highest dose he/she can tolerate. I am at the max amount and feeling it, stubbornly bumping along on a deteriorating road full of chemical potholes. These little viruses often feel like setbacks. Yet, if I can process through them, the medications seem manageable and the road smooths out. I’m ok; I’m better and writing again.

I’ve updated The Drill with the latest cancer marker numbers.

Tagged: cancer, chemotherapy, dexamethasone, Environmental Protection Agency, Homeless people in San Francisco, Marilyn, multiple myeloma, San Franciso, steroids

Ain’t nothing but more bad news.

The post I had intended to write around the 7 months post transplant mark was going to be a slightly celebratory post about being able to enjoy “dirty” food having adhered to a clean diet for the first 6 months after my transplant. Following a clean diet means nothing unpasteurised, nothing live, no raw protein sources, superfastidious washing and peeling of fruit and vegetables, no open deli or bakery stuff and lots of other things. I didn’t majorly miss anything as my appetite was quite poor anyway. After 6 months I bought some of my favourite blue cheese, some unpeeled red grapes and was hoping to enjoy with a glass of red wine. The cheese was delicious but the grapes and the wine not so because of the GVHD in my mouth resulting in very altered taste. The taste is proportionately worse as the nutritional benefit of the food increases and I mostly enjoy extremely salty and/or sugary foods!

IMG_0142

 

 

 

 

 

 

 

 

 

Around the 6 month mark and except for the gruelling Cidofovir treatment I mentioned in my last post I felt I was getting stronger and less tired. I barely had time to enjoy my progress and recovery. So much has happened since that post 3 months ago I can do no more than briefly outline it otherwise I will continually be playing catch up which really isn’t what I wanted this blog to be about.

26 October

I got the devastating news that my light chains were rising from the test on 13 October, not just creeping up a little as they had been but going up sharply from 127mg to 634mg.  The plan to be off Cyclosporin (the immune suppression/anti rejection drug) and hopefully stimulate some more GVHD and graft v disease effect hadn’t worked  and wouldn’t work now that the myeloma burden was too high for my new immune system to have any control over it.

2 November

I started myeloma treatment which consists of Revlimid, an oral chemotherapy  which I take daily 3 weeks on and one week off and my old adversary dexamethasone, 40 mg once a week. I have had Revlimid before as part of VDR Pace but only for one cycle and I didn’t have any response to the regime. The hope is that now I have a fledgling new immune system, the myeloma may be resensitised to  Revlimid and/or it might provoke some GVHD.

5-7 November

A good weekend in London visiting a dear old friend taking in the excellent Weiwei exhibition, and the lovely Eltham Palace. I was tired but we managed to achieve a good mix of relaxing and doing.

IMG_0748 IMG_0754

23-28 November

A shortish break to Gran Canaria with my lovely oldest friend (old as in length of friendship, not age). A bit of a mixed bag as I was not really well enough to enjoy it but felt pressure to do so because I had gone and thought it was an opportunity to get away whilst I was able to.  It was good to get some sun on my skin (through the factor 50 sunblock of course) and swim in the sea but I couldn’t enjoy the cuisine or the drink because of my altered taste apart from the divinely salty pimentos padron.

IMG_0901

 

 

 

 

 

 

 

 

 

30 November

I found out that at my last light chain test 0n 16 November, two weeks into the treatment my light chains had risen to 990mg. The plan remains the same which is to have 4 cycles of treatment, each cycle being 28 days. I was told to ignore this test, logically I know this is right for various reasons but emotionally I couldn’t. Given the depression I have been feeling combined with the treatment being so hard on me, it would have been some consolation to know that I was responding.  I wasn’t to be tested again to the end of the second cycle on 29 December and will shortly find out the results. Started my second cycle, no GVHD or major reactions so far, the boss thinks if GVHD hasn’t happened by now, it probably won’t. More bad news in a weird way.

21 December

Suspected urine infection with associated high temperature. Was reviewed in the Haematology day unit and discharged with antibiotics rather than being kept in. Phew! Some good news, the Adenovirus test was negative and the CT scan of my chest was clear in the sense that the persistent cough I have had for the past 4/5 months wasn’t caused by GVHD or anything else however it did show myeloma deposits in the cervical skeleton but they may have been there for a while and I’ve still got rhinovirus.

29 December

Started my third cycle and will find out the results of my light chain test probably tomorrow if they are back from the lab in time. I have been anxiously waiting the last 6 weeks for this result but today I feel strangely calm about it.

31 December

Clinic appointment………………………………..??????????????????????????

This is the post I have been too fatigued, depressed and anxious to write as I struggle to come to terms with this relapse less than 7 months after my allogeneic transplant and all that I have been through. I knew that myeloma would come back but hoped for longer. I can only write this today because I’ve got a little more energy and inclination from the dexamethasone. I am also aware that this makes painful reading, another reason for putting it off and that I don’t know what to say to people about how I’m feeling and I suspect most people don’t know how to respond. I think I just want to be able to express my feelings in their entirety, the good, bad and the silly and be listened to. More of this maybe another time.

My fears now are not that I will die of transplant related mortality although there is still a 15 to 20% chance that I could in the 12 months post transplant but more that I will die from disease progression, that the treatment will not work as the myeloma becomes more aggressive and I will run out of treatment options quite soon. I don’t think I am afraid of actually dying though as Woody Allen says “I don’t want to be there when it happens!”  What I fear more is what my quality of life is going to be like in the interim and whether I will be able to do the things that matter to me. I fear having regrets. So far I have found the treatment so gruelling both on my body and mind (especially the dexamethasone crash for 3/4 days), I am barely able to find the energy to do or concentrate on anything due to the overwhelming fatigue, low level infections and insomnia. My mind swirls with crap and I can’t do living in the present very well. I am neither feeling positive about my future or strong, more a sense of failure. I certainly do not want to be told to cheer up, stay strong or be positive. I think my views on being positive are already known to most of my readers!

This time of year also has so many disturbing memories for me too, being 5 years since I was diagnosed, the kidney failure leading up to that and my first relapse around December 2012. This year was the toughest yet, got to say that was mostly to do with dex withdrawal but taking them on 23rd December gave me the energy to bomb down the motorway to Somerset where I spent Christmas with my sister and family. I had pre warned them that I would be tired, grumpy, withdrawn and irritable. I think it went ok and I managed to retreat to my bedroom when I needed to without feeling under pressure to be merry but finding enjoyment in being with my family, especially my lovely 8 year old niece who outclassed me at Mastermind (the old code cracker game, not the TV quiz).

Anyway I am feeling tired now but pleased and relieved that I have finally got round to doing this post. There is a whole lot more that I want to write and explore but that will hopefully have to be for another time.

In the meantime I wish you a happy new year.

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

TS Elliott

 

Sweet Dreams

I have just been awoken from my sleep, and as I begin to type this in the bright lights of my bedroom, it’s 04:50hrs. I am awake not because I need to urinate, despite that being the most common reason for my sleep being interrupted. 

I was forced out of my sleep tonight because my upstairs neighbours woke me up with their loud and drunken behaviour. A familiar and loud accented squawk accompanied by banging. Once awake, I discovered that there were mice in my bedroom, because, like a detective, I spotted droppings on the floor at the bottom right corner of my bed. 

Housemate interrupted my stress over a poo that was not my own, because he too had heard the ruckus upstairs. He came into my rdressed in his jeans and patterned T-shirt ready to tell off our younger  neighbours. We spoke about how inconsiderate they are, and how old they must think we are. I explained to him that I had already dealt with the noise and had asked them to be quiet by up shouting to them from my open bedroom window. They had sheepishly responded with an apology, and the noise started to fade. 

At this point, I looked down at the mouse droppings to find that Colin’s canine companion, Bruce, had urinated over the mouse droppings and thus my carpet. I’m not talking a small amount of wee either, it was a river. I really smelly river, that had burst its bank and stained my bedroom wall. I cleaned it by stomping on tea towels, whilst Housemate teased me about my irrational fear of mice. Towards the end of this thankless task, we saw a mouse, which we chased, caught and flushed down the toilet. As he was now fully awake, Housemate decided he might as well stay dressed for the day and put his laundary on, which I warned him was antisocial. He didn’t care. If it woke the presumably by-now-passed-out-neighbours-upstairs, it woke them. Tit for tat. Unable to reason with him, I came back to my room, where I saw another mouse, one bigger than the one before. I gave chase. 

I followed the furry creature into my kitchen, where I found Bruce under the kitchen cupboards  with a mouse trap stuck to his noise and a box I recognised as poison in his mouth. I screamed and called for Housemate. When I looked back down, Bruce was no longer in his usually form of a red Boston Terrier, he was a child. He was my child. The mousetrap had gone, but the poison remained. We were surrounded by several mice, although they had taken the form of a minature panther and two Border Terriers wearing collars similar to that of Jock’s from The Lady and the Tramp

I asked Bruce how many poisoned pellets he had eaten, and he told me he had eaten just the one. I calmly asked him again, and he apologised for lying and admitted to eating what had become  five poisoned biscuits. I screamed for Housemate to call 999 for help. He ran into the kitchen clutching his phone and as he did, Bruce, my child, died in my arms…

And that is when I really woke up. 

Like in Dallas, it was all a dream. 

???

Waking up crying, scared and/or confused does not happen as frequently as my post menopausal body wakes me up to toilet, but it does happen  frequently enough for it to bother me. The nightmares, for that is what they are, started shortly after my transplant in July. Back then, all those several days ago, it felt like I was having one a night but it probably was not that bad. I remember the noteworthy. On more than once upon a dream, I woke up calling for my Mum. Mamma Jones subsequently installed an alarm in my bedroom at her house, so I could contact her should I need her to comfort me during the night. I am 31 years of age. I raised the shouting for my Mummy with my counsellor and she said it was a very human reaction. Given the fact I have had two bone marrow transplants this year, and I have myeloma; I’m not beating myself up too much about shouting for my mother in this way. Plus, I have never used the alarm for dream related issues. For a glass of water on the other hand…

At one point, the dreams  were happening so frequently and were so unpredictable in content, I did not and would not sleep in my flat alone. Even now, even with knowing what they are, I do not feel confident being completely alone. It’s not why Housemate got his dog, but he comes in handy.

???

I’m a little hazy when it comes to the exact timing, but I think it was three weeks after I came out of hospital that I mentioned the nightmares to a Medically Trained Person. I did not want to mention it, because I thought I was having them because I was stressed by the act of having an allogenic transplant and all the other crap that goes with it. In short, I did not want her to think I was having a breakdown, but I am glad I did. Her response put me at ease. To my surprise, the MPT was not surprised by the fact I was having nightmares. Apparently, so she said anyway, nightmares can be a side effect  of taking Ciclosporin. I take Ciclosporin! I also take diazapam and morphine. Put them together and what do you get? Bibbidi boddidi boo.

???

The problem with my drug induced dreams is that they always begin firmly based in my reality. They often spiral beyond my reality, but by that point, I am hooked and convinced that it is all true. I am not going to list every bad dream I have had, in part because I feel like it is like somebody asking to look at my personal music library. Private. I don’t want people to know what scares me anymore than I want you to know that one of my most played songs is ‘Music of the Night’ from The Phantom of the Opera. For this tale, you just need to know that they occur and that they are realistic. You do not need to know who has ‘died’.

Fortunately, despite the fact I have had to turn my light on tonight and I will subsequently require a nap later today, the frequency of my nightmares has reduced. Somehow, I have managed to replace most of the nightmares with vivid dreams. Dreams that are not scary or sad, but dreams that seem to make me tired when I wake up. It’s a lesser of two evils. Occasionally, I will enjoy a dream, but most of the time I wish I did not dream at all.  I (falsely) imagine that if I did not spend so much time dreaming, I would need less sleep (or at least, I would have more energy).

Another downside to the vivid dream, is deciphering what is real over what is a dream, or what my predictive text just wrote, ‘dreamy’. The line between sleep and the mundane seems to be constantly blurred. Yesterday morning par exemple, I was convinced that Housemate had had to wake me up twice. It turned out that I had dreamt about the first knock on my door, letting the Bruce in and our chat about the weather. The weather? What does it say about my imagination that I dream about having a conversation about the weather?  I think that question best kept rhetorical.

I do prefer a mundane dream over a nightmare, but there is always a longer time delay before I  realise that it was just my imagination running away with me.  There have been days when I will go for most of the day believing I have spoken to somebody, replied to a text message or completed a task I set myself, when the reality is quite the opposite. Do not be alarmed, for I am told I am completely sane. 

My occasional confusion is easily done and justifiable, and I am not biased. Many a pesky dream starts with me being woken up from a dream. Dreams within dreams. It’s a great concept for a  clichéd packed arthouse film. Of course, I would have to dream up a dialogue far more riveting than a weather report.  

???

One day, I heard my doorbell ring, so I woke up and head to my door to answer it to find nobody there. I returned to my bed, where I was surprised to learn  it was only 06.30hrs and the doorbell I heard was not my doorbell. It was not the sound of my doorbell. It was a dream. I have never been a sleep walker, so I found this to be borderline entertaining. By the time I woke up in my bathroom with my mobile phone in my hand ready to take a photograph, I knew it could be entertaining. I had dreamt that I had to take a photograph of the New York City sunrise from the window of my hotel room. I was slightly disappointed when I realised the only view I bad was of the windowless corridor in my flat. Another time, less entertainingly, I dreamt that Housemate had returned home after a night out and decided to have a bath. I woke up slightly later to find the lights on in my flat. My conclusion was that he had drowned in the bath, so I got out of bed to confirm there was a corpse in the bath and happily discovered that he had yet to come home. It was quite the relief, for I really did not want to see him naked.

???

I hope, no, I dream that soon I will be off the Ciclosporin and that these sort of nighttime interruptions will cease. Nightmares and vivid dreams were not listed on my pre transplant consent form as a possible side effects. A definite oversight. It might not be Graft vs Host Disease or a secondary cancer, but they have an impact. A deep impact. Thank goodness I am as tough as nails. 

Right, I best try to go back to sleep. I think I have done enough now to forget about my dead dog child. I am not going to lie to you, I long for the days where I am only ever rudely awaken by the dustman. 

☀️

EJB X 

I’ve gone viral!

Since my cord blood transplant I have been beset by one viral infection after another and sometimes two at the same time.  Apparently it is more common with cord blood transplants because the stem cells are immunologically naive, more so than their adult counterparts they have no antibodies or immunity imprint.

The main culprits have been parainfluenza type 3, adenovirus and rhinovirus (click on the links if you want to know more). Whilst my symptoms have not been much worse than a cough and a cold, these viruses, particularly adenovirus can be life threatening in immune suppressed patients after an allo transplant. This virus has been with me more or less since my transplant, sometimes when I am tested it has gone but then it comes back again. It means that when I attend clinic appointments or the day unit, I have to wear a mask as an infection control measure and sit in a separate waiting area on my own or with other patients with masks on too which is annoying as I can’t catch up with my transplant mates and my glasses get steamed up. It feels a bit lonely and isolating.

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Initially I regarded having these viruses as a nuisance which they still are but I have come to realise that they could have serious consequences for me. I almost scared myself to death reading the following about adenovirus:-

“Viral infections may be associated with high morbidity and mortality in patients undergoing allogeneic hematopoietic stem cell transplantation (allo-HCT)1–3. Common viral infections after allo-HCT include those due to cytomegalovirus (CMV), Epstein-Barr virus, herpes simplex virus and varicella zoster virus. Other viruses, such as adenovirus, parainfluenza, respiratory syncytial virus, influenza, coxsackievirus, and rotavirus, are less common among allo-HCT recipients. However, adenoviral infection (AI) has been reported to be associated with significant morbidity and mortality in these severely immunocompromised patients.

Adenovirus is a double-stranded DNA virus that was first isolated in 1953 in a human adenoid tissue-derived cell culture. It has approximately 100 serotypes, at least 51 of which are known to infect humans 16. Infection occurs throughout the year but is most common from fall to spring. This virus can be transmitted by inhalation, inoculation into the conjunctival sacs, and probably the fecal-oral route. AI manifests as a number of clinical syndromes, including rhinitis, bronchitis, pneumonia, conjunctivitis, enteritis, hemorrhagic cystitis, and meningoencephalitis.”

(Extract from an article in the Bone Marrow Transplant Journal 2013 entitled “Adenoviral infections in adult allogeneic hematopoietic SCT recipients: a single centre experience” )

 

I’ve noticed now that persistent URTI’s (Upper Respiratory Tract Infections) as well as hypertension (high blood pressure) are listed as my co-morbidities in the letters from my consultant to my GP.

To try and boost my immune system to fight against these viral infections I have been having monthly infusions of immunoglobulins which having had 4 now don’t seem to be doing much good. I have also been on antibiotics most of the time which are really only of prophylactic effect since they don’t work on viral infections.

A few weeks ago on a Friday I was in the Haematology day unit for some reason I can’t now recall since I am there so often, when my lovely transplant nurse, Nijole, sprung on me the news that the boss wanted me to start a treatment called Cidofovir, to try and tackle the adenovirus. This was to start on Monday and would be administered 3 times a week taking around 4 hours to administer by infusion with fluids. I could feel tears start to well up and Nijole asked what was upsetting me. Between sobs I told her that on Monday I was starting the first lesson of the Spanish class that I had enrolled on so it meant I would have to miss it. What a baby! But what it represented to me was a step into the normal world, doing something other than being ill, recovering from my transplant and going to hospital. Nijole said we would work round it and I could have the treatment after the class had finished so I did go but the level was a bit too advanced for me so I have been bumped down to a another class on a Thursday afternoon after all that fuss!

And so I started this gruelling regime of antiviral treatment the following Monday which has been hard going. Early starts to get to the hospital in the morning following nights disturbed by coughing fits, my body wanted to lie in. On the days in between the treatment, I felt wiped out and nauseous. I had wrongly assumed it would just be for a week but then found out it would continue for 3/4 weeks.  It felt like going to work which incidentally it is just over a year since I gave up. No regrets about that, but on the other hand there’s not been much opportunity to actually miss it as pretty much since then I have had VDR pace, my second autologous transplant and my cord blood transplant. In all probability I would have been on the sick for the last year and there has barely been a day when I would have been capable of going to work. I don’t miss it but do miss my colleagues.

During the three weeks of Cidofovir stuck to a drip in the day unit, I inevitably encountered other patients with blood cancer also having treatment and chatted to some of them.  Sometimes it was a good way of passing the time but sometimes it was just depressing and I wished I’d kept my head down reading a book. There were post allo patients being treated for severe and various forms of GVHD  a couple of years or more on from their transplants which was scary. Some were very poorly.  I had to remind myself that the well ones wouldn’t be in the day unit requiring treatment. I felt quite wretched during this period especially when I found out afterwards that I still had adenovirus so the treatment had no effect and also had rhinovirus again. To add to the grimness, I also attended the funeral of a fellow myeloma patient at the MRI whom I had come to know quite well during the last couple of years. Of similar age and diagnosed at around the same time as me Jane had a donor transplant in 2012, enjoyed some remission and made the most of it but upon relapse her myeloma eventually stopped responding to treatment and took over. Her funeral was inevitably sad but a moving celebration of her life and what came across to me was that she didn’t let her illness stand in the way of doing the things she felt strongly about.  It drove home to me that I must do the same. I have a tendency to say to myself I’ll do this or that when I am better but I may never be better than I am now so I want to do what I can do now as far as possible and not put anything off until I’m recovered or in remission or not so tired. This GIF is quite apt, I need a new wall clock, maybe I should try and find one like this!

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Clearly I need to strike a balance between looking after myself, not overdoing it, avoiding risk of infection and doing the things I want to do. Travel abroad is probably still out whilst I am tapering off the immune suppressants and have infections but there are other things I can do and have done. During this sweet gentle autumn we have been enjoying I have played tennis, been on cycle rides and even an anti austerity demo! Oh and of course, learning Spanish!

Vivir el momento que puede!

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