Over a year since I relapsed and we’re now on route to my transplant.
Today I started on my G-CSF injections. These are used to stimulate my stem cells and I have to take three, every evening for 4 days. I actually don’t mind the injections as I’m lucky enough not to have a fear of needles. I’m not sure about the rest. Like with childbirth, I have parked my previous experiences 10 years ago, well in my internal being. Somewhere not to be revisited unless I read back on my blog (hmmm, why did I decide that was a good idea?!?!)
So, there is a chance of some side effects…bone pain and flu like symptoms the most common….the rest too scary (and hopefully too unlikely to even bother mentioning!!). So I took the first ones tonight and then followed them with a couple of G&T’s….didn’t read whether alcohol was recommended with them …. oops!
So, off to bed now and hoping for a decent nights sleep. I haven’t been sleeping well recently. Lots of dreams. Possibly anxiety related although I don’t feel particularly anxious. Might succumb to another sleeping tablet to help though. Why fight it.
Cancer requires one to slow down and simplify their life. Predictability in ongoing routines helps me to manage an otherwise unpredictable disease. Finding peace in a time of uncertainty is the goal.
Once a month, I receive a dose of immunoglobulins. It’s a support treatment. It doesn’t kill cancer cells. Instead, it boosts my immune system, which is depleted of defenders by my blood cancer, multiple myeloma. The immunoglobulins help to protect me against bacterial and viral infections. Things like the common cold; things like Covid-19.
Due to my “sucky” immune system, I also practice preventive measures to minimize unduly exposing myself to random bugs. I was social distancing before it became a meme. I learned from nurses at the time of my stem cell transplant in 2008 that an emphasis on personal hygiene would prolong my life. It’s simple, common sense behavior. For 12 years, I’ve avoided salad bars, chosen not to fly, and washed my hands … a lot.
My health is decent, managed by a series of treatments that have not changed in some time. The plan is busy but not arduous: I take oral drugs at home and have two monthly visits to the infusatorium. One is for a dose of the aforementioned IGG cells. I receive a cancer killer drug at the other visit. After that, I get a few weeks break before doing it all over again.
In order to combat the disease, my oncologist designed a coherent plan. It’s based on science. If necessary, we adapt when the cancer develops wrinkles that need smoothing.
These days, much of the rest of my life is similar to everyone else’s. That’s assuming they are following the prevention methodologies of social distancing, personal hygiene, and mask wearing. With the coronavirus we all have immune systems jeopardized by an infectious disease.
Unfortunately, many people refuse to adhere to practical preventive measures. Why is it that there is blatant disregard for common sense? It starts with leadership. Our president refuses to model safe behavior.
In fact, he stumbles to be relevant in multiple crises. Obviously, he missed his chance to lead. Mayors and governors act decisively. They govern. The president, however, fails to articulate a clear message. He muddies the water with “gut” assessments of biology. And, his repeated contention that fewer tests will lead to fewer cases, murders logic.
The misinformation, in conjunction with a lack of direction, lead to an increase in the infection rate. More deaths follow. The economy flounders as millions of Americans cannot work. All this for want of a national plan to control the pandemic.
It’s hard to find peace under this cloud of uncertainty. Things must change. Leadership must be found. Be sure to vote this November. Your life may depend on it.
We got the tree quote and it came in at a good price. Plus we’re adding in having the very large oak that hangs over the barn trimmed. That will cost $1,000 but partly that’s because he needs to bring in his boon. I’m good with the cost and it’ll be a relief for the big tree to go. We still have the 2 other leaning Ponderosas and the one that leans toward our neighbors is a concern as the soil there is much softer as it is downhill. But I just cannot deal with that right now. If it gets worse, then we will need to do something.
I had an exhausting trip to Costco but I got almost everything I wanted/needed. Of course, the next day I realized I hadn’t used the coupon that was tucked quite nicely in my wallet and I didn’t see when I went to pay. Oh well, next week maybe. Costco seemed to have most everything except no liquid hand soap or Clorox wipes. I have plenty of regular CLorax that I can mix with water if I need to make up a disinfectant. The hordes were after toilet paper that apparently you have to make a beeline for the minute you enter the store and the meat counters were crammed with people trying to get stuff. I didn’t need any meat at all so I avoided it. I suppose I could have bought something as back up but I think with what I have, we’re good.
B’s biopsy came back great. No blasts, no MRD disease, no sign of MDS so that is really a gift. Hopefully, this GVHD will get resolved with the new drug. But since it is so expensive and they are( well, the hospital aid fund) paying for it, that it will do the job and then he can get off it.
I’m planning on driving down to see my doctor at the cancer center instead of doing a video chat. I just want to touch base with him and get his impression of my light chains going up so much. It’s not a good trend and I really would rather start Velcade than risk fractures or other horrible things. There’s no guarantee about anything but at least it’s the logical thing to do. I really hate the thought of dealing with dex and pretty much losing 2 days a week but at some point that will be the reality. I can tell though, my energy shifting and I’m more tired and less energetic.
I also have my delayed dentist appt at the end of the month to replace a crown. Not looking forward to that.
Such strange weather we’re having. It’s hot then cool, then hot again. Today it’s quite cool and we even have a twinkly fire going just to warm up the house. Weird.
I was reading this guys post as he’s on someone’s blog list that I read( I read lots of British blogs), but he was commenting on JK Rowlings’ comment about transwomen and I really flipped at what he was saying that he agreed with her that whatever sex you’re born that’s what you are. Really? How narrow-minded. Trans women are women and trans men are men. Period. He also said he had never read Harry Potter or seen the movies and I thought how weird he’s got this appreciation for JK R and hasn’t even read her stuff but when she goes off the rails about trans women he’s all for it. What astonished me is his comments were all agreeing. Well, I commented he needed to learn about transgender people and that it had nothing to do with ” the clothes” they wear. ( He was saying they can dress like a woman but they’re not real women). Anyway, my comment posted, and then, just like that, he took mine down and the other person who also tried to clue him in.
My kappa light chains went up to 176mg/L so a 66 point increase.
Lambda only to 13. mg/L ( normal as I am not Lambda myeloma)
ratio up to 13.44 so a 4 point increase.
Not happy but what can you do. I will see my doctor at the end of June. Not sure if I’ll do the video conference or just go down to Sac. Probably I’ll go down. I mean he isn’t going to start treatment yet anyway, but I’d like to check in physically.
We’re still looking at when I hit 500 mg/L so that maybe January. Or if things speed up sooner. You can’t really tell how it will go except it won’t go down.
I won’t lie that it doesn’t upset me but since this month is my 15 year since diagnosis( I’ll write about that later), you do get somewhat hardened to the fact that remission isn’t forever.
Other matters, B had his BMbiopsy Wednesday and was pretty loopy from the drugs but he said it went well( if enduring one of the most painful procedures you can go thru, can be ok).
I haven’t done any grocery shopping since the Costco Instacart last week. But I will go tomorrow as I need salad stuff and milk. I’d like to get to Trader Joes maybe next week. I guess it all depends.
We’re in for a cool down here in Northern Ca. It’s been hot but not 100 degrees hot, just 95 degrees hot.
I read in the WP another Confederate statue was taken down. It was some Admiral. They did it either at night or early morning and it was whisked away. Good Riddance. I also read that Lafayette Park where the peaceful protesters were attacked by the police used to be a slave market. One of the biggest. maybe Trump should read( ha ha ha) some history about the cruelty of selling black people.
I live in Hood River, Oregon. The river for which it is named flows north from the foothills of the Mt. Hood National Forest. Its three forks converge ten miles south of town. My youngest son and his family shelter in place near that spot. From there it meanders through woods, pastures, and orchards before emptying into the Columbia River at the waterfront where I often walk.
My wife and I moved here more than forty years ago. Good fortune came from that choice. We raised our sons in the upper valley. Our first home sat on a plateau between the middle and west forks of the river. The roots of the grandkids sprout from the same soil that nurtured their parents. They share the same legacy of mountain forests and streams; wildlife and rural community.
The county of Hood River depends upon agriculture and tourism for its existence. The orchards and vineyards thrive in spite of the virus. Tourism, however, stopped abruptly when Oregon’s governor imposed restrictions to prevent the pandemic’s spread.
The itch to be normal again is strong. But, uncertainty circulates through our community. One day there’s confidence the coronavirus will dissipate in the ether of time. The next you are reminded that this disease persists with an ubiquity reminiscent of dandelions. It’s everywhere.
Locals, unemployed by the shutdown of small businesses, return to work with caution. Some retail outlets prefer to continue offering their products from behind closed doors. Some restaurants feel takeout only is still appropriate. Other stores allow customers to browse their wares. A few serve food with revised seating to maintain a semblance of social distancing.
Our health department reports 16 cases of COVID-19. Some have completely recovered, none required hospitalization, and no one in Hood River has died from the virus. Sheltering in place and the discouragement of visitors worked to keep the level of infection low. Now, as we open ourselves up to outsiders, the risk of disease looms.
What have we learned from the pandemic of 2020?
We know that 370,000 people world wide have died from the disease.
We know that the United States owns over 100,000 of those deaths.
A disproportionate number of the deaths are borne by the elderly.
We know the delayed response from our national leadership was a mistake.
Rosy pronouncements from the White House conflicted with reality again and again.
We know its disorganized rollout of plans and promises seldom materialized into action.
We know, incredibly, the president has fostered division instead of unity.
The result is confusion and the world’s worst rates of contagion and death.
The result is a collapsed economy that still wobbles.
We know 40 million people are unemployed in the United States.
Forty. Million. People.
We know simplicity, once enacted, made a difference.
Social distancing, masks, and good hygiene flattened the curve.
We know essential workers in a community are ordinary people, doing ordinary jobs.
We know, if we choose to adjust priorities, hope exists to renew our troubled planet.
The wonders of our rivers and forests and wildlife carry on, unaffected by the crisis of disease. The human community, however, restricted activities to protect themselves from contagion. Now, with the relaxation of those controls, what consequences will the latest new normals deliver?
Answers elude us about things such as whether public schools can open next fall. Then, there’s the renewed permission to be going out and mingling with one another. It’s like a blind date with mortality. You hope to be lucky.
I wait. Time goes by. There will never be no risk. But continuing with safe behaviors will increase your luck.
Sometimes unexpectedly, a really amazing thing will happen to you – like a friend calling to meet up for sushi, or finding a beautiful flower, while walking through a forest.
My cancer levels for May dropped to 36 from between 47 and 48 in April. I missed 2 weekly sessions of chemo while hospitalized for 10 days due to my blood infection, so this is really incredible.
My first night, while still in ER, I was given a COVID-19 test and thankfully found out the next morning I had tested negative. During that night, I didn’t sleep much, I worried about my grocery shopping that morning and wondered if I had unknowingly infected others.
I’m wearing a mask whenever I leave my apt now, to better protect others from me – today and tomorrow. It helps give me peace of mind, especially when I go for chemo treatment or when around people with compromised immune systems.
M protein (g/L) (if 0, then no cancer detected)
May = 36
Apr = between 47 and 48
Mar = 47
Feb = 48
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.
I’m sure that Frugal Friday works anymore since groceries are much more pricey and I’m still buying to build up the prepper pantry.
I added some Bob’s Red Mill polenta to the pantry in the vacuum seal bags. Also in the Costco home delivery order got the 2 pack of Lemon Juice, Rosarita beans, and a case of their corn. I have a Costco Instacart order ready to go but will wait till next week. That way that will take me almost into June. Oh yeah, they had SAF instant yeast and I also got some really nice powdered cocoa for baking.
For the prepper pantry, I’m making a list of dinners that I could put together from what I have to see how many months/weeks I would have. I have some combinations of dinners we eat normally like beans, tortillas, salsa, pasta with sauce, rice-based meals. Mostly, I’m trying to have meals that we normally have so things aren’t weird like Spam for dinner:( From the freezer, I am adding some meals like chicken, or organic beef, but that would really be stockpiling unless I bought a 1/8 of a cow from a farmer. If I knew someone that did that I would consider it. Right now, I’m good with Costco’s organic ground beef and chicken.
In other news, Barclay is continuing to have GVHD with intestinal stuff and skin rashes. His doctor ordered a new drug call Jafaki. The drug is enormously expensive and the co-pay was coming in at $1500. a month. ahh, there is no way we can pay that now we are on a fixed income with no extras coming in. Our Medicare prescription plan had it for slightly less. So he talked with the financial coordinator and UCD Medcenter gave us a grant for $7000 that is JUST for the Jakafi. Let’s hope this does the trick. Tomorrow is his 1-year re-birthday and I would really like to have the GVHD be gone. Well, I guess we will see but at least we’re not going bankrupt from a drug cost.
Today we walked and it was refreshing. I have the pizza dough ready to go in the bowl. I also cut up a whole bag of Vidalia onions to freeze. Last week I made the mistake of trying to make a larger pizza and it was not good. It was too big for my pizza steel and was a mess. It tasted fine but it was falling into the oven because it was too big. You’d think I’d learn:( So this week it’s back to 2 pizzas.
I just finished reading Adam Savage’s ” Every Tool’s a hammer”. He’s the guy from Myth Busters. Quite interesting. Check it out.
We had a huge rain cell come thru yesterday in the afternoon. There was thunder( a lot) and lightning, hail, and torrents of rain. Quite the spring storm. There was snow in the Sierras which is not that unusual in normal times. Well, everything is soaking wet.
We just got back from a nice walk. I wanted to do another round but nature was calling or maybe it was my cup of coffee so we left. But it was really nice and fresh out. All the geese families are getting big.
Our chicks are getting big too and the others seemed okay with them but the 2 Auracana are being mean to the black one so we’ll need to see if we have to separate them more. It’s a pecking order but they can do harm to an outed chicken so we don’t want that.
Barclay has labs today and then a video conference. This time last year he was in UCD med centers Bone Marrow Transplant Unit getting chemo conditioning for the actual transplant. A whole year has gone by, wow. Except for ongoing GVsH intestinal stuff he’s doing well although still too thin.
Then tomorrow he has to go down to UCD med center for a urology appt with a new guy. My daughter has volunteered to drive him down. It shouldn’t be a long wait and I suggested she pop over to Corti Bros. We could use some Mikes Blend meat for chili or burgers. I made the burgers with the Crowd Cow burger meat and it was good. I’m not sure I’d say exceptional but I’ll wait to make a final evaluation after I make the chicken and the one steak I bought. It was delivered quickly and with dry ice, so that kept it all frozen.
We’ve been having game night on Wednesdays and here’s one of the games that is hysterical to play.
It is not for children so be aware.
This is one of the cards that I thought was beyond funny.
too funny:) You kinda need to be where we are to appreciate it.
We’re planning to do take out Mexican tonight. The first time in 3 months. Hope it’s good and safe:(
Oh, and our idiot president is taking Hydroxychloroquine. What a complete idiot. How can we even have a president that is so stupid? It is beyond me. Good grief, Charlie Brown. Vote Blue, no matter who so we can move on to some sense of normalcy. Or at least someone who isn’t a third-grader.
We always try and have a Beltane fire on or near May 1st. In cross-quarter on the Celtic Calendar, it’s the beginning of summer. Burning away the old and planting for the new. It is between the Spring Equinix and the Summer Solciste. We had a fire the night before so that was good enough. We might have one tonight if we sit out.
This week I finished reading Jane Austin’s ‘Emma’. 500 pages of Jane Austin and it was astonishingly good. We have all the JA’s in Easton Press editions. I also reread a couple of e-books. I like the author Meg Wolfe. She used to have a great minimalist blog that I really enjoyed but I guess having written 5 books in this series took all her time. The first is the ‘Uncollected Death’. Charlotte Anthony is downsizing and is commissioned to write the memoir of a woman who then is murdered. There are 4 other books in the series which I’ve read but this one is my favorite.
I’ve moved most of my house plants( and there’s a lot), out to the sun porch. I’m going to see how they summer over out there. It does get hot out there so I’ll have to see whether this is a good option.Then I moved all the LP’s under the Heywood Wakefield so they are near the turntable. I’ll see how this works too. That freed up a wood crate I had so I may use that somewhere else. Mostly, I’m trying to reduce visual clutter in my office room/space. I have the one wall with Grateful Dead LP covers framed, and our Woodstock original Life magazines framed, B’s Bob Dylan poster and my favorite Star trek poster. It’s all colorful and pleasing to the eye but I wouldn’t want to add to it.
We’re doing really well food /pantry wise. I finally was able to get Costco to deliver toilet paper here although they are 14 days out for delivery. We have enough though. Plus the other big thing is coffee. We all drink coffee so we go thru a lot. So I ordered 2 Starbucks French roast as it is on sale. It’s still cheaper to go in to the store( Costco) to get it but that would mean going into the store. So it’s worth it for now to pay the extra $5.00.
I haven’t been too creative with cooking. Mostly just cooking to get by. We even didn’t do Friday night pizza because no one wanted pizza. So we had the frozen manacotti I did a week ago. It was good. I did try making a sourdough focaccia and it was ok. Not great but I think I will try a different recipe and see how that goes.
Speaking of Costco, I checked Instacart/Costco and it looks like I can get delivery here so I may try that when I need the next round of stuff. But for now we’re good.
This morning after our walk I went into the Holiday Market an got enough fresh stuff for the week and they had tofu so that was exciting.
Next week Barclay has to go down to UCD med center to see the doctor because he needs his port flushed and another IVG infusion. I’ll just sit in the car and read although this time I may go for a walk.Last time I didn’t but I think it should be ok.
I also had my Zoom video appt with my doctor and it was quick and easy. We’re in agreement that starting treatment while the pandemic is going on is not a good idea. But we did agree when my kappa light chains get to @ 500 then that will be a good place to start. It really depends on how quickly the cancer cells start to activate. This last time it only went up 18 points so that was quite a bit less than the time before. Really it’s just a waiting game. I’m not happy about but WTF. Not much you can do. So we shall see. it’s out there in the future somewhere.
A few pictures from around the yard
This time of year in May everything is nice and green and so pretty. My daughter does an amazing job as gardener!
In the early spring in this year of the pandemic we live in a house on a street that divides the city from the county. The trees in the fruit orchards nearby are past peak blossom and west winds scatter their petals onto the pavement. Strangers walk by the house, in groups of two or three or alone. Some wear masks, some don’t. The roads are quiet as families shelter in place and many are out of work and few cars drive by.
Downtown, some retail businesses operate a version of what was once a normal schedule. They restrict access to limit exposure for customers and staff. Hotels are closed to deter tourists. Restaurants provide takeout meals only, which further discourages outsiders. Deserted streets and empty spaces prevail.
In my garden, I plant petunias and nasturtiums in the sunshine. Coleus plants go where indirect light filters through the overhanging branches of trees. Birds chatter and sing and bathe in a concrete trough, oblivious to the worries of us humans.
At the hospital, which I visit twice a month to treat my cancer, everyone must wear masks. Nurses, in the infusatorium, move among us like bees attending a hive. They set IVs, adjust the flow of chemo drips, and take vitals.
The coronavirus has yet to deplete the hospital’s resources. Gloves, masks, face shields and paper gowns seem plentiful. These protective measures minimize the dangers. True safe distancing, however, is an illusion one accepts in order to continue treatment against the more visible foe of a malignancy.
As of the 26th of April, our town has just five confirmed cases of the disease. No one has died and none of the five are hospitalized. The air is clean to breathe, the colors of spring bright, yet concern about the future mars the improving weather.
In the last month, global deaths from the coronavirus occurred at a rate of 50,000 every eight days. The elderly carry the load of this mortality. Paeans to beloved grandparents pepper human interest stories in the media. Many die alone, in the twilight of their lives, absent the providence of human touch and the presence of loved ones.
Illness and death aren’t the only factors in the equation that defines our current hardship. Restrictions on movements and livelihoods can lead to isolation. For many, financial ruin is a reality. Everyone feels the weight of an uncertainty that goes on and on and on. Bailout checks signed by an empathy challenged president won’t soothe the anguish. Weeks become months, and a sticky cobweb of contagion adheres to our consciousness.
We all want something settled and predictable to counter the chaos caused by Covid-19. Patience is our ally. Hanging in there is good advice.