Cycle 4 Week 14: A chilly morning in the park

Sunday morning was pretty chilly (-2 C) when I was walking around before sunrise in the park. Unfortunately I really feel the cold due to my compromised immune system. My February monthly blood test results are encouraging. My cancer levels are 48 down from 50 in December. My Myeloma Specialist has increased the dosage of two of the drugs I take with my chemo, so hopefully my March results will be much better.

Overall I’m doing alright, eating healthy, and remaining positive each day.

Feeling Springtime in the air!

Cycle 4 Week 14: A chilly morning in the park

M protein (g/L) (if 0, then no cancer detected)
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5


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 - Britannia ShipyardsSteveston – Britannia Shipyards

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Five on Friday

It was a beautiful week here in Northern California. Yesterday was 75 degrees. It got breezy in the afternoon but still nice. It’s supposed to start raining Saturday and go almost a week with snow in the Sierras. Well, we do need it but the sunshine and perfect 70-degree weather is hard to beat.

We are exploring different places to walk, so yesterday we went into Auburn and had a coffee at Depoe Bay( which roasts their own beans) and then walked around. We went up to the Gold Mining Museum and looked around and then walked the sidewalks. It was nice and I was surprised at the different routes we could take that would add up to a few miles. So, we will do this again after the rain stops.

I’ve decided to stop going to the gym and just walk and pull out my 5lb weights. Even though Sundays are the lowest people day, I just can’t risk it.  We are in the high-risk group. I am concerned with either of my Adult children who do work in the public sector bringing something home but I guess that’s the risk. They do wash their hands frequently and are quite conscious of what this means to us.

Budget wise things are good. I have way overspent on stockpiling stuff but I just figure that’s a one-off for now. I do still need a few things like cat food for Finwe who is a very picky eater. We also had our bi-annual Allstate bill come in. For 3 cars it was a little over $1,000. Seems expensive. Even our old Dodge van was $290 for 6 months. It seems high but I like Allstate and we’ve had them for 40 + years. This is the type of annual bill that will have to be paid out of our savings as the regular income only covers monthly expenses.

I did request a form for UCD financial help since the medical bills in August are what is causing a headache. Especially since the August 30 bill is for the Cystourethrocopy when the Cobra insurance wouldn’t pay the full amount. That alone was almost $4,000 with our part being over $1300. So I’ll fill out the form and see what happens if anything.

Well, today is not a walk day at least right now at 6:30 am, maybe later.

Cycle 3 Week 11: Enjoying a beautiful morning in the park!

I’ve been remaining calm and trying to relax over this month as there is alot going on with my health. I went to a park on a beautiful morning to enjoy nature and the fresh air.

Last month I received my Feb monthly blood test results and it was a bit of a shock as my cancer levels continue to rise. My cancer levels are now 50 from between 47-48 in December. I had hoped my cancer levels would drop and then remain low and stable between 0 and 2 with ongoing chemo for a long time.

I’ll soon see my Myeloma Specialist and should find out whether another chemo treatment is available. If the answer is no/not right now, I’ll remain on my current treatment and hope for the best while I wait.

Focused on happy thoughts and positive vibes.

Cycle 3 Week 11:  Enjoying a beautiful morning - No time for stress!
Self-portrait: A beautiful morning in the park

M protein (g/L) (if 0, then no cancer detected)
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
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


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.

End of the day on Granville Island
Sunset on Granville Island

The post Cycle 3 Week 11: Enjoying a beautiful morning in the park! appeared first on Fade to Play.

The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

Friday Stuff

Happy Valentine’s Day!

We don’t do much special since I hate crowds and would not even consider a dinner out on VD day. I did buy some nice carnations at Safeway and some roses at Costco so they are on the table looking pretty.

D126A6A1-573C-4FEE-8D37-0AAA6677D393.jpeg

It’s been a maddening week trying to get a camping reservation. Every single morning ( including today) I have been on the computer at 7am on the dot( watching the second hand) to reserve a spot and absolutely NO LUCK!

There are so many people trying to get reservations for August that it’s almost impossible. Today, I’m trying for 5 different spots and not sure if that will slow down the computer. But if I don’t do the 5 then there’s no chance. I’ll update after 7am.

NOPE>>>>>NADA>>>>>ZILCH

Let’s see what else. Barclay had to go back down to UCD med center to pick up an immunosuppressant drug because he’s had skin itching and slight rash.  That’s the one he’s been off of since December so they don’t want any GVSH happening.  We’re also dealing with medical bills from August that the Cobra was supposed to cover and they don’t have it straight. I’m ready to just chuck it and make payments. We’ve been trying to get this squared away for months and they just aren’t getting it.   They keep saying he had 2 insurances but he didn’t an only had the Cobra. What a PITA>!

I’ve applied to the LLS for my grant for 2020 and that will pay my AARP supplemental insurance.  They do such an amazing job and I’m grateful for the grant. If I ever have to go back on Revlimid they would help with that co-pay as Revlimid is a tier 5 drug and runs about $20,000 a month. With insurance you need to go thru the donut hole and then still it runs about $1500 a month.  I can’t see me going back on Revlimid but who knows.

Speaking of which, my labs came back very disappointing. They almost double!! ( well the Kappa light chains did) so that is a very bad thing.  I see my doctor next week so I’ll see how he sees this change. My ratio went up too but still is overall low at 6.58 mg/L. It’s the ratio that is more important. Still, it freaks me out that myeloma cancer cells are activating and multiplying. WTF….  well, I knew it would happen sooner or later as Multiple Myeloma is incurable but can be held in check.

Today I’m just planning on staying home and doing somethings around the house. I need to mop the kitchen floor and wipe the bathroom.

Tonight I think I’ll make a pizza Margherita although I ‘d need to run to the market for some fresh basil.

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.

Stuff

What a week!

The colonoscopy went fine although there were polyps so I will need to do another in 3 years? 5? not sure, as I haven’t gotten a message from the doctor yet. Oh well, the best-laid plans of mice and men:(

Now I’m feeling under the weather. I think my body just saying enough already and to rest. On top of the 2 days of jury duty last Thursday and Friday, then the colonoscopy prep on Monday and then out the door Tuesday at 6:30 am, all a bit much for me.  So today I’m just going to take it easy and drink lots of lemon water.

I am going to make marmalade although no one locally has Seville oranges. I’d probably need to go to Whole Foods down the hill and I’m not doing that.

The budget is set for February and I did take cash for groceries for the week.   I’m going to budget $125 a week. I went to Target yesterday and bought slice cheese and a few other things but other than that haven’t spent any extra money.

We were thinking of going to the coast but now it looks like it’s going to be a little too cool so probably not. Cool is around 50degrees.556B21DA-3A6C-409A-855E-C00C782CA2F6.jpeg

This was one of my Christmas presents as I’ve always wanted a French candle. Clearly not frugal but lovely. Would I get another, No! It had a lovely fragrance but the cost didn’t really justify that. Well, now it’s a pen holder. I also have always wanted a Jo Malone orange blossom candle. it’s in the same price range so probably not.

I have an appointment for my labs tomorrow. Oh, joy another test. Probably not good news so, WTF, right?

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.

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.