Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

Bleurgh – bored and fed up now!

So I’ve now been on treatment for 6 months and I am ridiculously fed up with feeling exhausted and good for nothing for 3/4 of the week. What is worse, is that my figures for the last 2 months haven’t improved, if anything, they’ve gone up ever so slightly. We’re still hoping that’s a blip but it does make you wonder why you put yourself through the grimness of chemo if it doesn’t do what it’s meant to do.

I shouldn’t moan. (But I will).

Other people have it far worse than me. Their side effects are worse (or they say they are!), they suffer with bone issues on top of all of the chemo treatment, they have other significant side effects or additional complications that make it worse.

But I just hate not being able to do the things I normally take for granted. Some days, I haven’t even had the energy to walk Marley. Others, I can’t make dinner for the kids and they have to do it themselves while I’m asleep on the sofa. The ironing piles up to the point the MIL offers to do it. I can’t really work now as I can’t focus on it and I don’t know when my bad days will happen sometimes, and working, even in my job, can take it out of me. Sport, and especially netball has had to be paused. I can’t go out more than one day at the weekend and even that, exhausts me the next day. And then when I do feel well, I do silly things like wallpaper stripping that totally wipe me out afterwards! That’ll teach us for continuing the house renovations right up to transplant date!

Basically, my whole life has pretty much gone on hold, and its a total drag if I’m honest. I’ve gone from feeling (even if I wasn’t ‘myelomawise’), 100% fine to feeling like I’m about 50% most of the time. It’s a strange concept taking drugs that make you much worse before they make you better. I know when I get to the transplant I’ll feel like 0% for a while, but it feels like the journey moves homeward at that stage. At this moment in time it still feels like I’m touring with no idea of what direction I’m going. Maybe I’ll feel better once I have a transplant date in the diary.

Anyway, I’m ok so this really isn’t a call for sympathy. Last week I was REALLY fed up, this week only semi fed up (at the moment). Today I feel ok – I normally do on a Monday until late evening…that’ll be the devil steroids (although they seem more under control now and the sleeping tablets help counteract that side of them too). Wednesday and Thursday are my worst days normally. And I just have to make the most of the weeks where I don’t feel bad on a Tuesday or Friday….I never quite know. Perhaps I need to avoid that wallpaper stripping in the house….but I get so bored if I don’t do anything!

Enough of the wingeing though. On a positive, my friends in Belbroughton arranged a brilliant ‘no frills’ disco for my #50KB450 at the weekend. It worked brilliantly, hopefully wasn’t tooooooo much work for them all, and raised £500 for Myeloma UK and my target. And it was loads of fun!!

It will take us over the 10% mark which is great! If you want to see an update on what has been going on just pop to my #50KB450 tab at the top of this page. The next event is that Deb and Brigitte are doing a 3 hour body combat event in Stourbridge on the 29th Feb.

Finally a big 🎉🎂Happy 18th Birthday🎂🎉 to Holly for Wednesday! She has really generously asked friends to donate to her fundraising page for #15KB450 instead of presents – not many 18 year olds would be that selfless! She’s also doing the 2020 challenge and running that many miles in 2020….mental! If anyone else would like to support her, it would obviously be great!

Cycle 2 Week 9: Cancer is doing weird things to my body

In mid-Dec I was having headaches that wouldn’t go away so I went to my hospital’s Urgent Care for an assessment. A CT Scan didn’t reveal lesions or tumours. While waiting to see an ENT (Ear Nose Throat) Resident, I had a period of uncontrollable chills and shaking, that I attributed to my body being cold. The ENT Resident examined my nasal passage and found I have chronic sinusitis due to my cancer, so he prescribed a nasal spray to repair it. He also said that the random lumps in my mouth were benign.

Later that week when I arrived for chemo treatment I was coughing and had a fever of 39.1C, so I was isolated and various tests were taken. Chemo treatment was stopped for two weeks and I was placed on antibiotics. Results from the CDC revealed that the uncontrollable chills, headaches, and fever were a precursor for the Adenovirus, a virus that attacks people with immune suppressed systems. One of my pre-chemo drugs is actually an immune suppressor. Thankfully after a couple of weeks I had fully recovered from the Adenovirus and my chemo treatment continued.

My Dec blood test results were pretty meaningless (jumped to between 47 and 48 from between 40 and 42 in Nov) as it was based only on my first chemo treatment which was Cycle 1 Week 1. Cycle 1 Week 2 and Cycle 1 Week 3 were cancelled due to the Adenovirus. I remain confident that January’s blood test results (based on usual 4) will show a drop in my cancer levels.

Overall, I’m really focused on listening to my body, eating healthy, and relaxing as much as possible to help my chemo be as effective as possible. Bed has been my friend recently.

My mobility is compromised due to the lesions in my pelvis, so walking up stairs is no longer possible, without significant difficulty.

I really don’t stress about the various things going on with my body. I have an incurable cancer and I’m alive, so I’m thankful for that.

I take each day as it comes and focus on being calm and happy.

Cycle 2 Week 9: Cancer is doing weird things to my bodySelf-portrait: Rest is key for my health

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Steveston - Canada GeeseMay 2014: Steveston – Canada Geese

The post Cycle 2 Week 9: Cancer is doing weird things to my body appeared first on Fade to Play.

2020 – A (Belated) New Year!

I started writing this post a couple of weeks ago at my last consultant appointment and forgot to post it so here it is with a postscript at the end!

Although my last post was written on Christmas Eve, looking back on it I must have been Hugh as a kite!! I hadn’t realised quite how bad it was until Nick told me on Christmas Day – by the end it didn’t make any sense at all! But the good news is that the sleeping tablets got me asleep and I had a much better Christmas because of it!

In fact we had a lovely Christmas and New Year. It was massively busy with guests but a great time of catching up with people and making the most of my health as it is at the moment.

And now we’re on the countdown. Or at least I am. Unless anything changes, I have 10 weeks left on treatment, before I have a 2 month break and then my second Stem Cell Transplant. I really do think myself lucky to have had 9 years inbetween my transplants but it doesn’t stop the interpretation that I’m feeling about going through it all again. We’ve got a date now for February to discuss the procedure (and how it might have changed from my first time) so that will be interesting … it has definitely made it feel more real!

But as for the here and now, things plod along really. As I said, I’m back on the velcade and it has hit me hard this week. It always seems to when I have a break! I slept for 3 hours last night (while the kids made their own dinner and sorted themselves out), and then got up this morning, pottered for half an hour and then was back in bed until it was time to leave for hospital at lunchtime! And I’m still exhausted and feeling. Very bizarre.

None of it is made easier by the fact I’ve now also been diagnosed with Meibomian Gland Dysfunction (MGD). It basically means that the glands in my eyelids are blocked and so can’t secrete tears properly. So I either have really dry, itchy eyes, or I have tears rolling down my eyes! Normally the latter! It makes you just feel even more tired and blurry eyed than normal which I can’t imagine helps my overall feeling of wellbeing.

Haha. Also just had a letter today from Sajid Jarvis saying well done for winning the Helpline Volunteer of the Year Award! He’s our local MP but I was quite impressed that he wrote. I might even see if we can get him to donate something for Sam’s #15B415 challenge! Someone might want the normal bottle of wine that gets sent through, signed!

Postscript:

So not much to add since what I wrote above. Everything is still on track, and the sleeping tablets are continuing to help me to cope with the lack of sleep…although this week has been exhausting (but due to sorting my dads house all weekend and lots of wallpaper stripping!). I’m still waiting to hear whether my stem cells from first time round are viable but will hopefully find out next week….it’ll be a massive relief if they are!

In the meantime, I’m feeling pretty positive about the #50KB450 fundraising at the moment. We’re nearly at 10% already, much helped by asking people to donate instead of sending me bday cards this weekend! I’m also sending out lots of letters to businesses that I know to see if they can help as that’ll be my easiest way of raising money! Sam is doing really well with his #15B415 challenges (he’s raised over £1000 himself!), and all the other family and friends who have got involved have done amazingly well already, with more coming in all the time. I feel ever so humbled by how much people have been prepared to do!

Stanyan Street

The Oakland Gang: niece Tillie, me, Nephew Joey, my wife Marilyn, and Noah our oldest son.

Due to my cancer, multiple myeloma, the physical adventure of traveling challenges my attitude. I dislike flying: the herding, the depressing bag of pretzels, and the cabin’s claustrophobic fit. Yet, once again, my wife and I chose to spend the holidays in San Francisco’s Bay Area.

We stayed in Oakland at a hotel on Broadway, close to where our oldest son lives. We were joined by a niece, who lives and works in a town nearby and her brother, our nephew, who was visiting following the completion of his degree at Tufts University in Boston.

Lake Chalet

I’d arranged to re-schedule my twice monthly infusions so as to not interfere with our activities. My treatment also includes oral drugs, which can continue when I’m on the road. I take a chemo type pill once a day and a steroid once a week. I’ve become inured to the daily pill. Its side effects blend into the general fatigue syndrome that characterizes my blood cancer. The steroid, though, radically alters my mood, my energy, and, perhaps, my personality.

IMM

We dined at a number of excellent restaurants: Itani, brunch at Lake Chalet, The Berkeley Social Club,  a morning snack at The Rotunda on the first morning, the hotel’s restaurant for breakfast Christmas day, then Farley’s East on the penultimate morning. Prior to seeing the movie, Little Women, we ate Thai street food at IMM and finally a goodbye meal at Tay Ho, a French/Vietnamese restaurant.

The highlight, however, was Christmas dinner at my brother and sister-in-law’s house in San Francisco. The Oakland gang merged with the San Francisco gang. 

Brother and Sister-in-Law’s house on Stanyan Street

The house sits near the top of Stanyan Street above Golden Gate Park. It is of Victorian vintage, built early in the twentieth century. (1904)

There are three levels situated on a steep slope adjacent to Sutro Forest. My brother and his wife live on the top floor. Their daughter and son-in-law and 12 year old grandson occupy the main floor. A laundry and storage, as well as a small studio apartment finish out the dwelling. There is also a two car garage, quite a luxury in parking starved San Francisco. They bought the house for $100,000 in 1973.

Oakland street art.

They admit to initially being anxious about the mortgage. At the time, my brother was a San Francisco fireman. His wife worked in medical research. She then chose to get a law degree and eventually became a patent attorney. Along the way, she also bore a child. By investing in their ingenuity, they were able to persevere through those early busy years. The house is now worth much, much more than the purchase price.

Stanyan Street

Main floor of the Rotunda in Oakland, CA

Christmas day was my steroid day. Under the influence of the drug, I sometimes jabber too much. I have also been known to say the wrong thing at the wrong time. Such are the perils of the steroid high. My faux pas filter, however, managed to keep me out of trouble. The convivial conversation even  prompted me to toast the three family lines in attendance. 

But, the enduring star was the house itself. Nurtured by my brother and his wife through the years, it has hosted numerous events commemorating family passages. There was a going away party for my wife and I decades ago when we immigrated to New Zealand. Then, in the not too distant past, a support reunion party for me prior to my stem cell transplant.

Tay Ho

Furthermore, two of their granddaughters lived there while launching into adulthood. And, my SIL’s mother spent her final days in one of the downstairs apartments. Birth, death, and all the transitions in between: such is the legacy of the Stanyan Street house.

When the evening ended, my wife and I returned to Oakland with our son. The lights of the Bay Bridge glittered with holiday flair. My slumpiness from the myeloma had vanished temporarily, along with other aches and pains of disease and aging. The day’s activities had drained the jolt of energy caused by the drug. Yet, I still floated in the steroid’s groove and mused, without judgment, as to how my body is no longer entirely my own. It is managed, to a degree, by pharmaceuticals. That’s ok. I would not be alive without them. 

Worcester Rd – the new pharmacy!

As I started this blog this morning I was taking a wide variety of drugs and cocktails!

  1. Daratumamab – immunotherapy drug
  2. Velcade – chemo drug
  3. Dexamethasone – evil drug – should not be allowed past go. Ruins relationship, friendships and more!
  4. Lanziprazole – protects stomach…I think
  5. Co-trimoxazole – godminly knows, I just take them and hope!
  6. Pregablin – reduces impact of neuropathy in feet, calves and hopefully is reducing pain in back.
  7. Colosevelam – deals with mile-bilemalabsortion – don’t look that condition up if you’re eating!
  8. conjugated oestrogen – for early menopause that kicked in at 35
  9. Sertraline – for the depression that can’t help but find a homely place in our house with everything else that is going on! My saviour

But today I’ve been joined to another regime. And today……drum roll……-another one is joining the ranks in the form of ZOPICLONE – a sleeping tablet. And it’s already made me spaced out and unable to hold a straight line! Hoping I’ll be ok for tomorrow as driving to oxford to visit my dad!!

I’ve also been given next week off velcade and Dex so we can have some time where I’m fit enough to do some things. Hurrah! Bloody fantastic! Might even have a little topple for new year!

But it made sense to try as I’ve only been getting between 1and 4 hours on a Monday with Tuesday slightly better at around 6-8 hours. But I feel awful between Tuesday eve and Friday eve and it’s miserable. If sleep is anything to do with it, I’d like to vaguely enjoy Christmas Day! We’re cooking for 6 but hopefully will be organised enough we can look to the guests to help nick to wash and clear!

  • Remember
  • Don’t overdo it – it’s only one day
  • If you burn anything hide it and pretend you never had it on the menu
  • If you burn anything remember you’ll be eating twice your body weight for 6 hours solid so will be totally grateful it was one less thing to eat
  • When you look at yourself the next day and wonder why you ate everything you knew will make you fat, and a month to get off the hips, please don’t bore us all with your plans for the gym!!
  • When you say ‘I shouldn’t’ when offered that extra drink….don’t if you really don’t want to …. but if you do….bloody do it!
  • Right I’m jibbering rubs is hand want these tablets to send me into a deep sleep! Wish Me luck

Anyway, can’t see me writing again for a few days so wishing all my friends, family and general subscribes a 🎄VERY HAPPY CHRISTMAS🎄

Rainy Day

It was a rainy day and I had to drive to Sacramento for my oncology appt. The drive was slow but not too bad. My appt went well. I’ve had Dr. Laptalo as my medical oncologist since I was diagnosed in 2005. He was a fellow then and then later board certified. He’s a good person and I trust him. Again, it’s really just waiting till my numbers are higher to start anything. That’s ok. He did recommend I have the colonoscopy after the diverticulitis bout. So I will schedule that for January or even February. I had him look at my CT scan with contrast and he said there was nothing unusual. So that’s good.

Then I came up to Rocklin and went to Walmart to exchange the flannel shirt I had picked up by accident in XXL. That is way too big for B. Then home.

Tomorrow I have a gym day and then some errands. I need a candy thermometer to make the peanut brittle and I need to go to the bank.

I am feeling somewhat frustrated with the house and it starts to feel really small this time of year. It’s usually when I start looking at decluttering more or at least moving some things around so there is more space. Winter/rainy days do make things seem closed in. Well, that too will pass.

Dinner is veggies and one of the cheese fondues. It’s not the one I usually buy so I thought I try it tonight.

Monday Blues

It’s raining and I’m not walking and it’s 5:30 am. I haven’t bought the Frogg Toggs yet so I don’t have any rain gear. I guess I’ll get my ass in gear and do that this week as I don’t mind the rain as long as I’m covered up.

It hasn’t been a great week. I had some pain in my side last week and it turned out to be a mild case of diverticulitis. So now I’m stuck on antibiotics which wouldn’t be so bad but there’s 2 and one is one that is NO alcohol(wine for me) as it will give you a violent reaction. So not fun for me as I love my ritual of wine in the evening. Well, maybe change is good.

Then my CBC and CMP came in and they were all fine. Unfortunately, my Kappa light chains went up another 11 points to 55.7 and Lambda went down so that means the ratio went up( not good) to 5. 1.  I’m not freaking out but it’s clearly not a good sign. Treatment is out there again the question would when is my doctor going to think it should start. He still seems to think my numbers too low. They are low and I don’t want to start Velcade soon but time is ticking and I don’t want to have fractures or let my numbers get too high. Granted they are still low as when I started treatment before they were over 1000mg/L. I guess it’s just wait and wait some more.

I did do quite a bit of house tidying this morning. I decided I needed to do something or I was going to go stir crazy. So I swished and swiped the bathroom, tidied my office area, mopped the kitchen floor and washed some of the entryway windows. I plan to go out and put on the gas heater and clean the sun porch.

Well, on that depressing note I’ll close.

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Latest Posts

November hasn’t been a kind month

It will be a year tomorrow that Barclay was getting a blood test and was told to go to the ER immediately. He had almost 0 platelets, and extremely low RBC, WBC, and hemoglobins. Seriously bad.  I knew it was something bad and that this wasn’t just a blip.

 

He got in to see the local oncologist pretty quickly( like that same week). MDS was a possibility or aplastic anemia.  After getting more transfusions he got a BMB but the BMB wasn’t done right and the sample was inadequate.  This was when we were still with Sutter.  So eventually it was done correctly and the diagnosis was MDS high risk.

He then was transfusion-dependent and without a transplant would last maybe a year.

The rest is history.

Today was almost that year mark and another BMB.

Now my turn. It was right before Thanksgiving in 2003 when I had the fracture in my T-10.  Of course, I didn’t know that then or even that it was Multiple Myeloma. the NP I saw said a strained back. No Xray ( which would have at least seen something). I lived with that for 18 months till the spring of 2005 when I saw a doctor about some back surgery since my back still hadn’t really ever gotten 100% better.  Then I had an MRI. There was a plasmacytoma. The rest is history.

So November brings up some difficult emotions.

Transversing blood cancers is difficult. I’ve been fortunate that my Myeloma has responded when I’m in treatment.  I’m grateful I’m not starting treatment this month but hopefully can get to spring before I start.  B’s MDS is tricky and I hope he has a long if not permanent remission.

There’s always the questions” Why Us?” But I don’t bother with that anymore. Nor do I do prayers or the ‘God’ thing’.  Life is what it is and I believe we must live presently and with good intentions. There are no second-guessing these things.  I believe we must js\ust put one foot in front of the other and

remember what Bilbo Baggins says” It’s dangerous business going out your front door”.