Getting ready for Tahoe

We’re off in a few days for 2 weeks at my favorite place on Earth. Lake Tahoe.  It’s where I want my ashes dropped or at least in the vicinity(ha, ha,).

But the first night it’s just the 2 of us. Then the next day B has to come home because our son is having a surgical procedure and it will involve anesthesia so someone needs to take him and bring him home. So, my daughter will drive up with the dogs for 3 nights and then B will come back up on Sunday.  It will be a little juggling around till Monday and then we should be good. Someone has to be here to take care of the 2 cats and the goat and chickens.  Plus watering gardens.  I’ll drive back down myself probably Monday.

But overall it should be wonderful will nice temperatures and even cool at night.

I’ve been packing dry food and others things. I also put out the 2 Lodges to take.

Mostly it’ll be relaxing, reading and walking. This year we bought a screened tent to put over the table. It may rain so this would help some. I didn’t want to get an EZ up after I saw how big they are and they weigh a lot. Usually, we try and buy one new item each camping season to add to our gear.

Nothing new on the dog front. Haven’t seen the lady or her dogs so I’m hoping she’s not coming to the park at all.

I’m excited I tried making bagels and they came out pretty good. I’d ordered a few things from King Arthur Flour and one was non diastatic barley malt powder.  It’s what makes NY bagels , well, NY bagels. I think they came out great but my oven wasn’t calibrating (which it does from time to time) so the heat wasn’t coming up to 425. So it was a little hit and miss.

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a little fuzzy on the last picture

 

 

 

5 things on Frugal Friday

It’s been somewhat of a frugal week.

  • I didn’t really grocery shop, just picked up a few things at our local market.
  • Needed to go to Target but didn’t.
  • Ate most all of our meals at home with the exception of yesterday we had lunch out(see below).
  • used up things in the refrigerator to make meals ( BBQ tempeh was one).
  • Didn’t order from Amazon but need to do that soon ( a Lodge cast iron pan for my son for school).

We had a fun time going up to Truckee yesterday to get my Senior Golden pass card to the NF, parks and other benefits. B has one and we use that to reserve for Nevada Beach which makes camping there half price. If you are 62, you should go get one as the price will go up to $80 in October. Right now it’s $10.

So I’ve been wanting to go to JAX’s in Truckee that I read about. Guy Ferrera went there and reviewed it as it is a diner. It did not disappoint. The turkey melt with avocado was delicious. B had a chocolate shake and boy was it sweet. Anyway, lots of people up there and traffic on I 80 was thick. But we still had a good time and I got my pass. IMG_0819.jpgIMG_0818.jpg

Today, I’m going to the gym and then to Target to get my notebook for budgeting. Then into the store for a few things like polenta which I like to get bulk.

It’s Friday night pizza on the grill again as it’s supposed to be 101 today.

Getting ready for camping

We are packing up most stuff today in the tent trailer and then tomorrow we’ll pack the Santa Fe. We have really learned how to minimalize our camping food, equipment etc.

For instance, we use to pack everything under the sun including all our food. Now we just do basics like cream, butter, eggs(our own). Then as we plan a meal, I’ll go to the market. In Capitola, where were camping, a Nob Hill is maybe 3 miles away. So if we’re going to do grilled chicken, I go get it plus whatever else. It really makes it easier. Now if we were boondocking somewhere remote this, of course, wouldn’t work. But we don’t tent trailer that way. If and when we get a hard body, I would definitely do some different style camping. Or when we go up the coast to Bodega Bay to camp, there are no stores nearby. There is a tiny market but it’s more for travelers. At Bodega Bay we do pack a lot more.

I do plan out our dinners and this time we’re using the Lodge every night. I have one night not planned and we may do something else. So far here’s the menu:

  • Lodge dutch oven mac and cheese and a salad
  • Lodge dutch oven pizza( we did this at Tahoe last year and it was great)
  • Lodge dutch oven chili and cornbread vegetarian( I might cook up a small amount of beef but I’ll wait and see how we feel)
  • Lodge breakfast casserole
  • Lodge  lasagna( this is the fall back meal if I want to cook a 4th night)
  • Lodge double stuffed baked potatoes is a possibility too.

I usually buy packaged salad and that is a side.

I’m off to the gym this morning and then to Grocery Outlet for a few things. If you get a chance go read this blog frugaltexasgal

It’s pretty darn good.

 

 

The kingdom of the sick

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor

Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window.  I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops!  It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise.  My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.

Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.

I saw an excellent musical last year called  A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor.  Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I?  It is a world where every day I am aware of my health, managing my health is a full time job. There hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.

I am increasingly disconnected from the well world. Fatigue, chemo brain,  loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of  infection, steroid crashing or simply being too tired.

I am frequently asked where I’m off to next on my travels, anything planned? Answer is it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands.  Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day.  In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of locations of  for filming of my favourite Nordic noir dramas and ate lots of pickled herrings.

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Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.

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In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.

Naples, Florida

img_0228This is the gulf side of Florida. Quite the vacation destination. I guess Naples is a very wealthy area.  It seems so when you look around but certainly at the Ritz Carlton. It’s very nice and very posh, and very very expensive. Gee, I sound like Trump..very , very ,very …. oh well.

We’ve been walking along the beach, plus sitting out on the beach.  The food has been excellent but ridiculously priced. But since there’s nowhere else to eat unless you go out of the Ritz,  it’s what you do.  The really fun thing is the salt water lap pool. Years ago when we use to swim laps it was great. I loved it. But then the pool we belonged to closed down so now the only pool near us is part of a club which is quite expensive.  I’m going to look into the couples rate since I’d love to start swimming again. We’ll see. An extra $100 month isn’t in the budget yet.  Maybe next year.

Today is the last day and there’s an offsite dinner. I’m not sure I’m going to attend as I’m starting to feel a little maxed out and tired. We leave the hotel tomorrow fairly early 5:45 am so… I won’t mind just hanging out in the room and looking out at the beach.  This must have cost a fortune for the company but it’s a way of them saying thank you to these very talented people who are the best in the company.

I’m pretty proud of B for getting this award and us being able to have a free vacation, a very posh vacation.  I’m sure I’m ging to be quite tired when I get home and it’ll take a few days to readjust. But I’m ready to go home.

On a whole other note, one of my daughters’ rescue border collies, just started having seizures. It happened last week and I thought maybe it was her back that went out but my daughter said no it was a seizure.  She took Bonnie to the vet and did an x-ray and nothing showed up so she’ll start anti-seizure medicine. It’s very odd that it’s only been 5 months since they were adopted and now this. Of course, she is 10 years old, but it just seems odd that this would start now. Hopefully the medicine will work and she can still live a normal life span. I’m sad about it but my daughter is great wit these things so she’ll handle it.

Well, off to walk.

Updates ,Just Keep Walking Project(JKWP) and more

In the JKWP, we are at day 136 in the fourth year.  We walk every day in the rain(today), snow (hopefully not soon), and in the dark (today) and in the light (summer). Next week when we travel to Florida we will walk intentionally even if it’s not the very first thing. We need to leave for the airport quite early so our walk will be later. If you’re just starting out walking, I’d say the best thing is to lace up your shoes first thing and then go. That’s what I do. I get out of bed put on my sweats and lace up my North Face walking shoes. Then I ‘m ready to go. I go out early as it suits my personality. I’m now and have always been an early morning person. I’ve upped my distance too and that’s nice. Mostly since I’m off Dex. Dex just makes things harder with its ups and downs.  So get out there and walk.

Next update: my sister and her 3 daughters are safely back in Connecticut. It was a short visit but they had fun. Everyone avoided talk of politics and religion. I think no one wanted controversy. That’s all good.  Family is family and since we do have differences, it’s best to be tolerant. As an atheist, it would be easy to go on and on about things. But , we each have our own journey to take and that’s that.

Next…. today , finally we get to sign our refi.  We had to pay the annual house insurance and property tax since they were due within 60 days she said. So that was a hit. And we still need to pay a small OOP amount. Not happy about that but it’s a done deal and finally over for now.  My plan is to try and do another refi in2- 3 years and try and get the interest rate lower. But for now,it’s ok.

My doctor appointment went well and he said I didn’t need to see him for 2 months. Wow!!! But I still want labs every 4-5 weeks just to keep up. So I’m still hoping for 6 months but we’ll see. But anyway great for me.

Then we went to the brand new Sacramento Food Coop and wow, it is impressive.  I’m not a member but I just might become one since the bulk foods were amazing. So. fun!!! Plus, I’m trying to work towards zero waste ( in a small way) and this would be a great option for bulk every thing.

Then we went to J Jill in the Galleria. Now remember I hardly ever shop and really don’t ever go to the mall, but I needed something for the evening attire event in Florida. I found a nice black overshirt and I got a black dress off eBay. So I should be set, plus honestly, I don’t care and at night black is black and I’m sure no one is really going to be looking at me.

So, that’s it I think. It’s raining and suppose to get worse today. But we’re snug with a fire going. OMG, it might not be Friday night pizza.  I don’t have any mozzarella so it might be burgers as I got some yummy rolls at the coop yesterday.

imagePart of my vintage Halloween collection.

one of the last things I collect and love.

We’re going….

So it was approved for us to fly the day before. So we will leave Wednesday and come back on Sunday. We will have to pay for the one night as that’s not included.  Economy will tough but it’s 4 hours to Dallas and then an hour break to get to the other plane and then on to Ft. Meyers.

I’m sure it’ll be an adventure !!

Well… it’s really hot here today like 94. but then by Thursday it’s going to be 64 , so what’s up???

 

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

 

 

 

Happy New Year 2016!

Greetings! For those of you that may not have heard from us in the past year, can you tell from this picture that life is good? Hope that puts your heart and mind at ease right away. We realize that in the world of unpredictable Multiple Myeloma, not hearing from fellow survivors for a bit can be scary. 
In November of 2015, EZ and I were able to celebrate our 40th anniversary (a month early) in beautiful Samana, Dominican Republic! It was an amazing time away for the two of us, to reflect on all of God’s goodness in our marriage, and in Ernie’s battle with MM. We took long walks on the beach, snorkled, dined in fine fashion, watched beautiful sunsets, and just enjoyed celebrating love and life.
With EZ’s diagnosis six years ago, we were shocked, saddened, devastated, fearful, confused and overwhelmed. But today, we are grateful and full of hope for our future. Our prayer is that others would be encouraged by our journey, and see that there is One bigger than ourselves and our circumstances. Thank you to our family, friends, and church for your prayers and support over the years. 
EZ’s M-spike remains at 0, “undetectable”. The results of his bloodwork remain stable, as they have all year. He continues to take 10 mg Revlimid daily, with no days off, and has been on this regimen for 5 years now, tolerating it exceptionally well. Yes, he lives with neuropathy, daily sweating, a suppressed immune system, and insomnia, but overall, he can still enjoy life every day!
I can’t wait to share more highlights (EZ’s deep sea fishing trip to the Bahamas), and lowlights (the passing of his sweet Mom), from 2015. My goal is to blog much more often. We love and appreciate those we have met online, traveling a similar, or dissimilar, journey with MM, and never want to lose touch. There were many times in the past that we never imagined traveling again, or seeing our 40th anniversary, but here we are. If you are facing difficult circumstances, try to keep the faith and hold on to hope for the future. We are proof you might be surprised by all the blessings that await you!

 

Baby Talk Part Two

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Firstly please ignore the post from last week, I was spewing out a quick draft whilst waiting to be seen at the hospital, clicked on what I thought was the button to save it but it turned out to be the one to publish it! Damn, those that follow my blog by email will have seen all my spelling mistakes and poor use of the English language!

Anyway back to Part 2 of Baby Talk. Just to refresh your memory from my last post, Baby Talk Part One, I’m at the post auto transplant meeting with the transplant boss. She’s told me the bad news that it looks like my stem cell transplant hasn’t worked, then she dropped the bombshell that I am unlikely to respond to Revlimid as the next line of treatment and then that the donor transplant as an option is a no goer as there will never be an adequate match for me. Can it get any worse?  For those reasons she suggested a cord blood transplant which she has never done for myeloma before but would be willing to give it a go.

She explained what is involved and the risks and benefits of the procedure. The risks are numerous from failure to engraft, meaning that the cord blood stem cells don’t take in my bone marrow so I could die because my bone marrow has been wiped out by the conditioning chemo I will receive prior to the transplant. Then there is high risk of infection whilst I am neutropenic and waiting for the new stem cells to engraft and also for the next year or so. A clean diet must be followed for 6 months and travelling abroad is not possible for 6 to 12 months. Hence all the holidays! And finally I am highly likely to develop some graft versus host disease which in the first 3 months or so is called acute and after that it would be considered chronic which could be a long term issue. GVHD is where the new stem cells don’t like being put into my environment (me being the host) and attack it causing skin, gut, mouth, liver or other organ problems which can be life threatening or “not compatible with life” as another doctor recently said to me.

And of course while all this is happening there is the possibility that the myeloma is coming back. The only good thing about getting GVHD is that hopefully it means that the new stem cells don’t like my myeloma cells either and attack them too, as long as the myeloma burden is not too high. And that in essence is how a donor transplant works whatever the source of the stem cells ie adult or cord blood. It is a form of immunotherapy, the aim of which is to replace my defective immune system with a new healthy one.

So the benefit is that it could give me a new immune system that deals with the myeloma cells and kills them in a way that my own fails to do. That is if I survive the procedure and don’t get any life threatening infections or GVHD. This graft versus myeloma benefit could last a long time, as I said before, a small proportion of patients may be considered “cured” and die of something else.  Or more likely according to the boss, I could get a year or two out of it before I relapse. I have to view it as extending my treatment options rather than being a cure. When I relapse I can be retreated with previous drugs that I may have been resistant to as my immune system will be different as well as being able to try any newer treatments that have come on to the market so it gives me more options (with the remote possibility of being curative) than I seem to have if I don’t have it.

If the autologous stem cell transplant had been effective then the decision would have been more difficult as I could perhaps count on 6 months or so remission, then a slow relapse before I needed to start treatment again. But the way it looks now is that my light chains are slowly creeping up and I would need to start treatment quite soon and that treatment might not work, if the boss’s fears prove to be correct. I’ve been quite heavily treated and the more treatment you have the harder and stronger a different myeloma clone comes back.

I left that meeting feeling overwhelmed and upset but more or less deciding to go ahead with the cord blood transplant assuming there were cords available and my light chains had not risen significantly higher. I would have a 3 month post transplant bone marrow biopsy to find out. Then I thought of more questions to ask after I left and had a second chat with the boss to talk it over again the next day. The talk was of having the transplant as quickly as possible and I needed to make a decision so that the cord blood tissue typing process which takes a few weeks and costs thousands of pounds could be commenced.

This was probably the most difficult decision that I would ever have to make. How do you decide? Toss a coin, ip dip, set up a poll on my blog and ask readers to vote, weigh up the evidence (there is hardly any), ask my friends what they would do (they don’t know), ask others I know with myeloma?  I was on the horns of a dilemma. The boss said there was no right or wrong choice, just the one that I felt sat right with me. Am I a risk taker in life, no not really, but maybe this was the right time to be one?  I am also very indecisive about the simplest of decisions which coupled with my cautious nature and resistance to change does not equip me very well to make decisions. Yes I had previously decided to have a donor transplant before but the risks were fewer, I was 3 years younger, in very good remission following my transplant and assuming I would have a fully matched adult donor available. At the second meeting I thought about asking the boss the question what would you do if you were advising your sister or if it was you, not sure whether to ask it or not as I thought most doctors would duck out of answering that question, but she volunteered the information saying that if she were me she would do it. I asked her if she was recommending that I have it with all the inherent risks and she said yes she thought it was my best option, not that there were many.

It was that strong expression of opinion which is quite unusual from doctors that helped me make my mind up to go ahead with it and she said she would initiate the cord blood matching process and arrange a bone marrow biopsy. I asked about going on holiday as it was only two months or so after my transplant and a little early for travel abroad and she said go for it, life is too short and so I did!

Between coming back from Egypt and going to Iceland I had a bone marrow biopsy and when I got back I got the results which were that I had 5 to 10% abnormal cells in my bone marrow. If it was much higher than this than the cord blood transplant wouldn’t go ahead and the doctors seemed to be pleased with the results and I was given an estimate of mid to late March for admission for my transplant which involves a stay in hospital of 4 to 6 weeks.  I have 10 cords that match and the absolute best two have been selected, one from within the UK and the other all the way from Australia! NO expense spared! I have passed the various pre transplant heart and lung tests, am feeling pretty fit and good to go.

I now have a date of the 20th March for admission and the start of the conditioning chemotherapy which will go on for 5 days, followed by total body irradiation on the 6th day and the cord blood stem cells infused in the same way as my own cells were last time on the 7th day. Then I have to wait for the new cells to engraft whilst becoming neutropenic. If they do engraft and my neutrophils pick up I’ll be allowed to leave, if they don’t then as a last resort I could be given my own stem cells back to rescue me as I still have some left. Then I will be closely monitored and on powerful immunosuppressant drugs for around 100 days afterwards.

The last month or so I have spent lovely precious time with my family and friends. I have been happy but also highly emotional in a good way,  everything and everyone seems better and brighter, like I am seeing the world through rose coloured glasses or maybe I truly have been living in the moment (or maybe I have taken drugs of a non medical nature).

I am nervous, scared and anxious and despite my views on positive thinking (see a previous post, hello relapse, goodbye remission)  feel that this is the time to take a risk and be positive as long as no one is telling me to be positive!

I intend to blog about my experience in hospital to try and while away those 4 to 6 weeks in an isolation room but in the meantime wish me luck!