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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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”.

Holidays, Treatment plans and celebrations

I thought I’d make the most of my hospital day to update my blog.

It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.

I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.

It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it 😉 ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.

The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!

While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/

What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.

This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.

Oct blood test results: Cancer levels spiked, positivity levels remain unchanged

My Oct blood test results show my cancer levels spiked to 29 from 21 in late September.

I spent about 5 minutes trying different self-portrait ideas, before I was too fatigued to continue and had to leave to rest at home. Although my disease causes chronic fatigue, it has felt more pronounced, like having a full brain, making thinking and physical activities much more challenging.

At this rate, I expect that my November blood test results will also increase and that in December chemo treatment will begin again. Not going to panic. Just staying calm and positive.

Happy November!
—-
M protein (g/L) (if 0, then no cancer detected)
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4 (post-chemo)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan 2019 = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct 2018 = 48

Oct blood test results: Cancer levels spiked, positivity levels remain unchanged
Self-portrait: A morning stroll through the park


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 mid-October 2018 to late-May 2019, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

English Bay - VancouverJune 2014: English Bay, Vancouver

The post Oct blood test results: Cancer levels spiked, positivity levels remain unchanged appeared first on Fade to Play.

When sleep is like a Facebook timeline!

Last night was a Dex night. I often don’t get to sleep till 3am on the first night, but now I’ve added sertraline back into my concoction of drugs, I thought I’d go to bed at a relatively normal time.

I actually got to sleep pretty fast! But after that it was such a surreal night and genuinely felt like I was working my way through my Facebook / LinkedIn timelines!! It was all I could do to stop myself getting up and doing the things I was having go through my head.

What was weirdest was that it wasn’t really a dream either.

I’m thinking I need a break! Hopefully by the end of this month I’ll have cut down my work quite significantly which will mean that I can take a bit of time out. I might even come off Facebook for a few weeks if I can set up my work to run without me!

In the meantime, I’m grateful for a semi normal nights sleep on a Monday!

Proud as Punch

I’m not very good at singing the praises of our children. I think it’s historical and probably isn’t helped that it was how I was brought up, but I’ve made a decision that I need to change that. And I’m going to start now. (And don’t worry we’ve told them too!)

I am SOOOO proud of them both!!

Recently, we have had letters from the High School, about both of our kids and how well they are doing.

For Rebecca, we have had two within the past week! One regarding her amazing fundraising where she raised over £1000 by walking the 3 Peaks in 24 hours for her Romania community project that she is going on, alongside her contribution to the school in general, and one for her amazingly helpful input at parents evening.

For Sam, we had one about how he had been really inclusive and kind and helped the new Year 7 students to settle into the school….something I can promise doesn’t happen with all of the kids!

I know that these things might seem small to some, but with everything that the kids are having to deal with at home, I am so proud that they aren’t falling to pieces at school, or using it as an excuse to be quite inward thinking. They are still keeping hold of the values that we’ve tried to teach them over the years, namely to think of others as well as themselves. And don’t get me wrong….I totally wouldn’t blame them if they had become more self-centred with all of this.

We do have two amazing children. They are so kind, and so giving and I feel really blessed to have them. On Wednesday, I was struggling and a bit teary while Nick was away and Rebecca was out. Sam spotted it straightaway and came and gave me the biggest hug in the world….he knew what I needed! And even Rebecca, someone a little less tactile than Sam, seemed to know I needed more from her when she got in later in the evening…she straightaway gave me a big cuddle….and I can promise you, that is not the norm from her.

They are living with such a hard situation. I think that sometimes we take it for granted after all this time, that our family is living with the Big C. With myeloma. With a big cloud hanging over our heads. I know that I certainly take it for granted that it is always in my mind (especially now I’m back on treatment). It impacts so many of the things that we do, whether it is the every day decisions of what to do, the holidays we can or can’t go on, whether the kids can join clubs (Can we get them there? Can we get them home?), even, whether they can go somewhere with their friends.

But yet it is so easy to just feel like they, in particular, should just get on with these decisions without challenging them or feeling that they are unfair. Poor Sam even had to deal with a science lesson this week telling him that stem cell transplants were a cure for cancer, especially bone marrow and blood cancer – not easy when he knows there is no cure for myeloma. But again, I was so proud of him for coming home and telling us about it. Talking about it. Not bottling it up. It’s so important.

They are the most special children. I love them so much. We’re so very lucky.