Simple Sunday

It’s still cloudy and chilly here in Northern California. There was a big storm that came thru Wednesday and Thursday with I 80 getting closed due to spin-outs. The temperatures are supposed to go into the mid50’s and low 60’s next week so that’s better.

When it’s this chilly which is all relative, I don’t wander around outside much but I’ve decided to start doing at least 15 min outside even if it’s just raking.

Of course, I walk most mornings very early and it’s quite freezing. Literally 32 degrees, but somehow that’s just my MO.

I’ve had jury duty this week and I go one day next week. It’s all quite interesting but for me, with my IBS, I get quite nervous about bathroom access. I did fine because I didn’t eat in the morning.  I’m keeping track of what I’m eating to see what, if any, pattern there is. Plus I am somewhat claustrophobic so being confined to the jury room is a little stressful.  But I made it along with 12 others.

I’m definitely not used to being out all day and that was very stressful. My daughter made dinner both nights so that was nice.

I canceled the medical part of the Cobra so hopefully, that went thru as you do it by email. It takes up to 7 business days to reflect so I’ll be checking the online site. We did request to keep the dental and vision at least until I get that covered by something else. What do other people do? Is it AARP that has a separate dental plan and what about vision?

B was also able to get the very last of his 2019 SDI because we had the doctor say he was still disabled. It wasn’t a lot but it will certainly help.

We went to Costco and did some grocery shopping and filled the car up with Costco gas.

I read that there has been a norovirus at Yosemite from mainly people eating at the Ahwahnee so now we are decided to probably not go since we cannot even risk B getting something like that as it could activater his GvsH.  we have some time to think about it but there are other places we can go. We’ll see…..

I didn’t get to the gym today so I will go tomorrow.

 

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. 

Midweek Musings

We had a nice drive to Sacramento yesterday for B’s clinic appt. Traffic moved fairly well thru the usual difficult areas( where I -80 merges to Business 80) and the downtown area.  His appt went well and the good news is they have reduced his Tacrolimus to every other day. This is the biggest drug that targets keeping at bay Graft vs Host. So we need to watch for any flare-ups but the NP was pretty confident that this is the time to start. So that means maybe by February he can go off Noxafil which is the Tier 5 that we are holding on to paying the Cobra for. Actually, with the plan set to restart in January, we’re not sure if the Cobra co-pay will reset( I’m assuming it will) and that means, well, I’m not sure how much the co-pay will so that’s a big question mark.

We are set up with Plan D medicare for him but that’s not what we’ll use as that immediately goes to Tier 5 and the 25% start. So way to much $. I guess we will just need to wait and see how it plays out. I’m hoping we can drop the Cobra by March.

After clinic we went to Trader Joes and OMG it was a madhouse. I almost walked right back out. But we managed thru and I got what we needed for Christmas( fondue, and ham) and lots of good food( french fries, they have the best frozen) and other things including TJ’s wine!

We stopped for a pizza slice and then headed home.

Today is a gym day. And then I need to hit Home depot for a bulb for my salt lamp.  Then home to bake some more cookies and maybe make the fudge.

Tonight is a new recipe for a spinach pie. One of the very few memories I have of my mother and this was not when I was young but @ 16, she made a spinach pie that was like a pizza. My sister doesn’t remember it so I’ve been trying to recreate it. This recipe calls for ricotta so maybe that’s what she used.

I’ll update after it’s done and give a review.

 

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”.

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

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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!

Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged

My late Sept blood test results show my cancer levels jumped to 21 from 16. Based on my current progress, I expect to begin chemo in late 2019 or early 2020.

It will be challenging on my body and mind, but I remain hopeful for low stable levels for a long time.

Although I’m easily fatigued and mentally weak, I feel fortunate I can appreciate the changing Autumn colours in my city.

Have a great day!

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

Self-portrait:
Early morning in Quilchena Park, Vancouver
Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged

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

Sixth and WillowJune 2014: Sixth and Willow

The post Late Sept blood test results: Cancer levels jumped, positivity levels remain unchanged appeared first on Fade to Play.

Head Up and Get on

It’s been just over two months since I started on phase 2 of my treatment journey….i.e treatment since I relapsed. I felt so bouyant when I started it, and really ready to just get on with it, have a few months of treatment and go on to my transplant. Of course I knew what to expect so surely it was going to be a relatively easy walk in the park …. the house and the family would be fine, and work wouldn’t get in the way until I got to the time I went into hospital for my transplant.

Nope…..

I’m struggling. Really struggling emotionally. And actually finding it quite hard to admit it to most people. I’m trying really hard to keep life normal and I know that’s good and mentally in some ways, will keep me stronger than if I allow myself to totally collapse. But it doesn’t take much when I take some downtime, for me to have the time to totally break down in tears and struggle to get my head around this current treatment regime and how it is making me feel, behave and act. I think that’s why I’m keeping so busy because I don’t want to be a wreck whenever I’m not! Poor Nick and the kids don’t know when I’m going to be strong and when I’m struggling and they have been amazing at trying to keep up

Anyway, Nick and I had a small breakthrough this week where I acknowledged for the first time that the side effects from the drugs, largely the exhaustion, but other smaller ones too, were impacting on my ability to cope. I have so many ‘big rocks’ in my life (as Nick likes to call them!), that I’m struggling to manage them all. The family, friends, my father (now with worsening dementia & moved to a home), work, the house, the garden, netball. All of them that have been majorly important to me, and that I haven’t wanted to compromise on any of them.

For the first time, I admitted that something had to be put to one side, and after a long discussion, I have agreed that the something that I’m going to cut right back on is my businesses. It’s been a really hard choice but I’m finding it harder to do it well, and I don’t want to let clients down, In addition, being social media, it is something that stays in mind almost 24-7, and I often find myself working when I should be resting – not good for anyone! I’ve worked so hard to build it up and frustratingly, I was so close to feeling like I was getting where I wanted to be, but I’ve made the decision now to take away the social media management aspect of the business and just focus on LinkedIn training as and when it comes up. At least then I can fit it around when I feel capable of doing it, and it only takes up a couple of sessions of headspace! I don’t quite feel better for having made the decision, but I think I will once I stop at the end of the month. Hopefully it’ll only be temporary until I’m back on my feet next summer, but we’ll just have to see. And hopefully I won’t regret it.

The other thing I’ve found really hard, and I’m only just starting to admit this to Nick, is my relationships with other people. It’s been strange to see the change in how people handle what’s been happening this time round. I’ve got some amazing friends. Some new ones up here in the Midlands, who are always checking in on me even with their own issues. And some amazing friends from my school days who I know are there at every corner too and, despite us now living what feels like a million miles away, I know that they are always there if I could only pick up the phone more often and tell them I need them! And a number of other great friends who really care and keep in touch.

But despite all of this, and despite having the best family in the world, who support me every day with love, cuddles and understanding, I feel very alone sometimes. Maybe my fundraising hasn’t helped as people are so bored of the whole story, that they have switched off what is going on now. Or maybe people I thought cared, just didn’t. Or wrong place, wrong time. I think it’s quite a common thing to happen with cancer (finding that friends drop off) but I didn’t experience it first time round. Or maybe I just didn’t acknowledge it that time, because the people who ignored my diagnosis weren’t that important to me. This time, they have been and whilst I try to understand it, it can hurt sometimes.

I’m very aware that when we made the choice to move to the Midlands, we made this aspect of our life more difficult. We knew that we were taking ourselves away from a support network that was easy, and we did it in the brave and optimistic hope that I would stay in remission. But with the knowledge that I may not. So, this isn’t meant to be about me guilting anyone particularly although I understand that there’ll be people out there that will think I am, or will say what I’m saying is unfair and puts pressure on. But as I’ve always reminded people….this blog is for me first and foremost and I needed to get this off my chest in the way that works for ME. Let me be 100% clear….I don’t want support from people who don’t care because that’s not genuine and I’m not up for fake friends/ relationships. It’s just hard if you realise that perhaps some people you thought would care, haven’t found the time to even ask the question if you are ok.

Anyway, it is what it is and I have decided again that I also need to get some counselling to try and help me make sure I’m handling things better and addressing the bits that are more difficult. It’ll take some time for that to happen though but hopefully the feeling that I’m taking things in hand will help me a bit.

It’s been a busy but productive week

We had a nightmare drive to Sacramento on Tuesday. I have to say this really was the first time it was so awful. First off, we stopped to get gas and the car in front of us( so we couldn’t get to the pump) had what appeared to be someone living out of their car. We waited politely and waited and finally, I backed up and zoomed around to get to another pump.  The lady must have been in the bathroom washing, but then after she pumped her gas she proceeded to wash her car windows. I was getting frustrated at this point and this put us almost 15 minutes behind.

Then traffic was really heavy for some reason and I knew we would be late for B’s infusion appt( to flush his port and labs). We were 20 minutes late. That is a first.

Well, it all ended great with the NP telling us that the BMB results were excellent and chimera was 99%. Truly science is amazing.

We both got our Flu shots and both are arms a little sore. But not too bad. So that’s done.

B got his LLS reimbursement for the insurance so that’s a big deal and in the coming months will make a huge difference. Thank You LLS donors who make these grants possible.

Today I’m heading into AAA to sign up for the home insurance( that they canceled  and we now will be with them but they’re underwritten.) Plus it’s about $600. more annually. WTF!!!!

I might go to the gym afterward or I may just flake. I’ll see how it goes.

I was trying to plan another mini trip to Capitola but Airbnb’s are really expensive and so are hotels. We decided not to spend money on that. I checked New Brighton but it is all full, probably with retirees in huge RVs. 😦

Barclay is still processing going back to work but I don’t want to give up his SDI yet. That money is non-taxable so we will not owe next year. But it only goes thru December and that’s it. But it has been a huge blessing. If he goes back it won’t be his old job as that’s been given to a co-worker and he couldn’t really travel like he did.  His boss has indicated he could do something from home ( ideal ) but he’s still not sure. He’s only 4 1/2 months post-transplant and most people don’t go back to work for a year or not at all.

If anyone has any thoughts or input I’d appreciate the ideas as we definitely conflicted about it.

th

Still Lifes

“In every heart there is a god of flowers, just waiting

to stride out of a cloud and lift its wings.”

Mary Oliver from The Kookaburras

Still Life With Wildflowers

In late August of this year, of the summer when my wildflower garden flourished and yielded a wealth of colorful bouquets, crickets sang each evening their mindful refrain. “Soon,” they said, “the season will tip into autumn.”

In the garden, cosmos plants stretch beyond my height, seven feet or more. The flags of their flower petals flutter with the benediction of a breeze. Coreopsis and zinnias; daisies and coneflowers; bachelor buttons and black eyed Susans spill across the borders of the rocky path.

Poppies

Gardening focuses a too busy mind. Often, I am knuckle deep in soil and its mix of bugs, worms, and microbes. I breathe the earthy fragrance of organic material and enjoy common cause with other creatures.

Birds visit during the day. They pluck seeds from the same blossoms where bees nuzzled pollen. Beetles, spiders, and winged insects are drawn to the abundance of plants as they make their way through the territory of their brief lives.

Early Summer Wildflowers

Me too … I reap the peace of communing with wildlife and harvesting flowers that pose as still lifes in the kitchen and bedroom.

The late American poet, Mary Oliver, created still lifes with words rather than paint or photography. Her poetry arose from wandering in the hills and fields of New England. She developed a knack for finding the extraordinary in the ordinary.

Wildflower Bouquet

In her later years, she moved to Florida. She continued to write until the end of her life, taking inspiration from nature in the estuaries, ponds, and dunes of her new surroundings. At the age of 83, she died from lymphoma, a kissing cousin to my blood cancer, multiple myeloma.

My disease paints a picture similar to a still life: it doesn’t move, yet there is a fascination with the details. I have ups and downs but, basically, things are about the same this year as they were last summer when the season began to turn. I persist in a plateau phase with a lengthy history. The relevant blood markers remain stable, the treatments have not changed, and my quality of life is decent.

Still Life with Ukulele

Metaphorically, though, I am under house arrest. I don’t travel well due to the side effects of a busy treatment plan and Mr. Fatigue visits on a regular basis. Nonetheless, I approach 12 years since diagnosis. Cautious management and lots of luck has forestalled the incurability associated with MM.

There is much to be grateful for. Lately, it’s wildflowers, still lifes, and Mary Oliver. That’s plenty … until I write again.

 

Who Made The World