Mike

Remember those pesky space invaders, well look at them now in the chart below. My blood is free of cancer. Now I will get my bones checked. I had a bone marrow biopsy this summer and the presence of cancer was quite low. If they are gone my maintenance treatment will be minimal, but may not end completely.

You may recall that I did not leave my heart in San Francisco but I did leave four feet of my small intestine in Santa Clara, California. Less intestine, less nutrient absorption so I was having trouble keeping my weight up and had to limit my diet and eat lots of small meals. That is all pretty much over but I have treated it as a license to pig out on sweets.

The treatment itself comes with side effects- fatigue, weird sores, gastrointestinal issues, etc. all of which I have at a tolerable level but I am hoping with the elimination of some of these drugs these issues will go away.

I have to remind myself that the Force may be with me but multiple myeloma is not curable and the Empire May Strike back.

Dotti

I am feeling great! I can stand and walk pretty much all I want. My energy is back to normal. I can’t remember how long ago I felt this good… I’ve been painting again, working with clay, learning to make pine needle baskets, and learning to crochet. You’ll notice my love of cooking has not returned yet… but that’s okay. We still eat well.

First, it’s a beautiful spring full of blooming trees and shrubs. Color everywhere. More sun and less rain than usual. The birds are super active and enjoying our feeders and birdbath.

Dotti

As we’ve said before, friends and neighbors have been amazingly supportive. I’m making slow but good progress on getting back my normal hip and leg strength. I’m able to work in the garden for an hour and more using my folding garden seat. I can stand and cook as much as I want to. I’m looking forward to being more active as we move into summer.

Mike

When Mike arrived back home he was still packing 10 pounds of the fluids from the surgery and was a cherubic 209 lbs with edema in his legs sequoia worthy.The surgeon said not to worry you will pee it all out. He was right. In 5 days the extra fluid was gone. In 4 more days after that he lost 10 more pounds. In 4 more days after that he lost another 10 pounds. This would have been welcome news except there was no end in sight. The discharge staff alerted him that a shortened intestine would make absorbing nutrition from food more difficult and he might need to eat more, smaller meals but that wasn’t doing the trick. This called for Jyoti, the dietitian heavyweight who deals with short intestine cancer patients. She told us that Mike’s diet had to be turned upside down. High fiber- out. Dark green vegetables- out. Calorie counting-out. Bring on the meat, full fat yogurt, peanut butter on everything. Sounds crazy but it worked. The weight loss stopped within a day and his ankles are well turned if he does say himself.

He started back on his cancer treatment on May 1. Not surprisingly the space invaders aka lambda light chains ticked up with a month of missed treatment but it wasn’t dramatic. May be a while before we see how the treatment is doing. Stamina is coming back but walks require a few Wordle and Connections rest stops.

If you are going to Devil’s Island you have to have a mate. I’m not back here sitting in this chair without my wonderful mate. I probably was functional enough to call 911 but after that I needed Dotti to be, well, Dotti.

The next thing you need is to be sure Devil’s Island is in one of the most prosperous communities in America. 911 worked. I was 14 minutes from a large well staffed hospital and this will surprise many of you. It was Kaiser. A hospital that only employs RNs- no LPN and few other support staff. I arrived at the ER in an ambulance at about 6:30 AM. As the surgeon told me later I was on a short survival clock. I was in surgery by 5 o'clock. By 8 pm I was out of surgery. My torso looked like I was attacked by the swingline staple killer where they extracted ⅓ of my small intestine and sutured me back together. I had a breathing tube, a nasal- gastric tube, 4 IV’s and we later found out 14 pounds of fluids that were added in the surgery. A few days in the ICU followed.

My mate and I needed some other mates. Be sure Devil’s Island is in a place where you have family and friends. Our oldest son Andy was johnny- on- the- spot. He is an extreme example of the sandwich generation -- 80 year father and six week old and 4 year old daughters. His wife Soja had to absorb more of the work as Andy tended me.

And what’s the chance your oldest friend in the world lives on Devil’s Island? Well mine does. In 1968 draft deferments for graduate students were eliminated so we decided to move to California. He stayed. Our support on Devil’s Island was made complete when our other son Ben quickly bought a ticket and came to stay with Dot and then Dot and me at our Airbnb.

Ok we are about to get off Devil’s Island but, whoops! I get blood clots in both legs! A call to the doctor who says the dreaded GO TO THE EMERGENCY ROOM. We are expecting it to be like home – patients everywhere, long waits, gurneys in the hall. Andy drops us and we find half a dozen people waiting in a room that could seat 30 or 40 people. I am quickly seen, the blood clots are confirmed and I am back in the hospital.

Meanwhile we didn’t have enough of our medications and our car was sitting at SeaTac airport adding daily charges. To the rescue: Our neighbors Steve and Carol corralled our medications and shipped them to us overnight. Our friends Suresh and Anju picked up our car at SeaTac, stored it, and then brought it to us at the airport when we returned. We were home in less than an hour after that.

Getting back home took some doing. We both needed wheelchairs (Dotti’s hip still limits her walking) and I needed a walker at both ends. The airlines and airports would only commit to wheelchairs from the ticket counter to the gate. That left a few gaps. More help from the mates. My friend Steve drove us to the airport and Ben rode along. Ben took our bags to the ticket counter and we hopped on the wheelchairs. I just had to get to my seat. One of the kind people who took us to the gate on a wheel chair said she would come back and at least get me to the door of the plane, something the airline and airport said was not possible. That was good enough. We were off.

When we got to Seattle there were no wheelchairs awaiting us. I had gate checked my walker so we were able to get into the terminal. After some time, a wheelchair arrived for Dotti but they had no record of one for me. Eventually a chair showed up for me. The two wheelchair attendants took us into the terminal, retrieved our bags, and planted us on a bench where Suresh and Anju could see us and give us our car. Suresh and Anju gave us our car and a hug, and we were home in under an hour.

About an hour after we got home, a neighbor brought us homemade soup after she saw us arrive. Another neighbor brought some grilled steak and homemade bread, and insisted that we should accept help from friends. The next morning, there was a bag with an assortment of homemade goodies at our door from another neighbor. An old workmate of Mike’s offered to set up a Meal Train for us and Dotti accepted, so we have started getting 4 or 5 home cooked meals a week for the next 3 weeks.

The moral of the tale: good health care is crucial but nothing replaces a wonderful mate, loving capable children and their mates, and a legion of wonderful friends.

Thank you for all your online and in person support!

It’s possible he will be discharged tomorrow but not at all certain. I’ve extended the rental to Monday hoping he will be strong enough to travel home by then. Dotti

Well it is one damn thing after another. We were taking advantage of the two weeks between cancer injections to come to California to see Andy with his four person family. Sylvia (6 weeks) is a sweetie and Tavi was very glad to see us. Their new house makes their lives much easier.

On Sunday the night before we were supposed to return I woke up with a terrible stomach ache. Apparently four feet of my small intestine decided to make an exit from the abdominal cavity and died. We called 911 and got to Kaiser in Santa Clara and they operated on me right away. They cut out the dead part and reattached everything and I am in the hospital waiting to see if all the new plumbing works. Praying for pee and poop.

We are not sure when we are headed home, but we have found Airbnb for next week. Then we head back to the old cancer treatment. Getting to 80 in four months is harder than it looks.

Dotti

I’m doing very well after my hip replacement, and getting lots of steps in at the hospital. Gradually getting stronger muscles but still using a cane. While Mike is in the hospital I’m staying at Andy and Soja’s.

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We are on cruise control so we won’t have much to report unless something goes awry. I am getting my routine injections at Kaiser every two weeks and the side effects seem to be diminishing. The treatments have restored my kidney function to normal and have been killing off the space invaders aka lambda light chain proteins.They are down 70% since I started treatment last May. The downside of the treatment is that my infection fighting white blood cells are half of what they were before treatment. Low but not crazy low. My red blood cell count is taking a hit as well but I have been anemic, ie, low red blood cells off and on since 2009. Again low but not crazy low. Unless something dramatic happens, this will continue at least until April. Conceivably they could up my medications to make things go faster but with Dotti still recovering my condition is not limiting us and I can cope with the side effects at this level.. With the aid of bougie services, ie, prepared dinners, and regular house cleaning, we have warded off visits from the health department and malnutrition.

Dotti

It’s been a week since my hip replacement and I’m incredibly pleased with how well I’m doing. Today I was able to walk outdoors briefly using the walker, briskly and easily. I’m starting to use a cane indoors a bit so I have a hand free to carry things. I have taken only a couple of real pain meds in the last week. Otherwise it’s just Tylenol. Mike is cooking for me and helping me dress as needed. Cathy Funk was here to help until Sunday. I mostly slept while she was here but we did manage to do a little art together before she left. Generally everything is getting easier and less painful, though it’s never very bad. I still ice, exercise, and walk around the house multiple times each day. The muscles in my leg are beginning to remember how to move and lift. There’s still a lot of swelling. And I now have a spectacular sunset colored bruise gradually spreading from my hip down toward my knee. My latest abstract art.

I am almost done pouting about being offered and rejected for the clinical trial. I fell back right back into my treatment plan at Kaiser. Tomorrow I start the 4th cycle of 6 cycles before I am scheduled to be ready for maintenance in early April ..All depends on how I am doing. I am awaiting the latest status of the space invaders aka Lambda light chains. Hoping for none or at least back to a normal level. The upside of dealing with Dot’s hip surgery has been much easier without driving back and forth to Seattle.

Want to mention that Ben and Akiko delayed their return to Los Angeles in part so they could see Dotti after her surgery. Many of you know Akiko’s apartment is in Altadena, a mile from Eaton Canyon. Her apartment building is OK as of now but it is in the evacuation area and they can not return yet.

Dotti

I am recovering nicely after the hip replacement surgery yesterday. My surgery was delayed because of an emergency surgery so I went in at 9:30 am and didn’t get home until about 9:30 pm.

All I’ve needed for pain so far is Tylenol. I was taking Oxycodone a few nights a week beforehand so this is amazing. The biggest issue so far has been nausea and gastric reflux. Hope the pain levels stay the same!

Cathy Funk is staying with us for a few days so I have extra support and TLC. Quite a comfort to have her and Mike here.

Dotti

Is out of surgery and all went well. The surgeon commented that her hip was very arthritic. He was very enthusiastic about how well the surgery went.

She is not home yet because she had a general anesthetic which took her a while to come out of. They have checked her pain level which was OK but she still needs to eat, drink and have PT before they will discharge her. PT goes home at 7 pm. It was 4:30 when I was at the hospital so there is a good chance she will come home tonight.

More to follow when she is home.

In the words of Emily Latella ( Saturday Night Live Character from the 70’s) never mind!

Janssen, the drug manufacturer for the clinical trial, determined I am not eligible for the trial. Fred Hutch completed a frailty index assessment required by Jannsen for me using the results of all the tests they did on me in early December and selected items from my medical history, attached my medical history and sent it off to Jannsen. Jannsen did not specify a look back period for completing the frailty index. I had a malignant tumor in my kidney 3 years ago. Fred Hutch looked back one year, which a publication I found says is appropriate, Jannsen looked back 5 years and determined I was ineligible. The lead researcher called with the news on Sunday. This was a serious shock after the amount of emotion, planning and testing involved.

So……. I go back to Kaiser and continue the three drug treatments I was receiving in October and November. The treatment is working well according to my blood tests.

The upside of not doing the clinical trial is we don’t have to move to Seattle for 6 weeks and endure Dr Frankenstein’s blood sucking machine, we don’t have to worry about conflicts with Dot’s hip surgery and we can maybe see our new grandchild in February. The downside is I will be on some of these drugs with their side effects for the foreseeable future. However, the injections that keep us in Lacey will be less frequent.

Dotti

My hip surgery plans are proceeding smoothly for January 14. Several friends have offered to come help us right after the surgery, in case we need it. While the change in Mike’s plans was a shock to both of us, there are positives as he said. I’m glad that I don’t have to worry about recovering quickly to support Mike through the hospital stay, etc. The possibility of some short trips between his treatments is a bright spot too.

We are almost done with the screening for my clinical trial and we are still on board to do it in late February. I appreciate the following whining is a first world problem that contrasts with the struggle that most have in getting adequate health care but nearly five full days of poking and prodding and lengthy discussion in a world class facility and a platoon of talented health care professionals of all the possible risks and side effects was exhausting and fattening. I stress ate enough muffins to gain a pound a day.

Of the 36 vials of blood they tested- I hate it when reality can’t be exaggerated- the one that stood out for us was that my space invaders aka free lambda light chains were down to 66 from 1000 a few weeks ago. Still not in range but getting close and my kidney function is now normal. Unfortunately but not unexpected my blood counts continue to drop and I may be getting a transfusion soon.

The next step begins on December 17 for several days when they extract some of my white blood cells to get genetically modified. An entire 12 pack of Costco muffins may be required for this. After that it is routine care every other week until late February when those modified cells come back from the lab.

Dotti

Good news – I have been able to move my hip surgery to a week earlier, January 14, which will give me more time to recuperate before Mike has his new T cells infused. Initially I panicked when the original date of the 21st was not going to work due to lack of staff (health care these days!) but the doc is willing to move it earlier rather than later. Last week’s walking, driving and sitting was painful.

One positive from last week is that we were able to see many of our friends in Seattle. All those long-time friendships are so precious. Another wonderful thing is the ability to stay in our friend Jean Paul’s condo – a very comfortable and convenient place to use when we’re there.

Mike

Had the final weekly injection of my 28 day phase 2 regular treatment today at Kaiser in Olympia. The coming final week of the phase has no medication so I am looking forward to respite from the zooms and crashes that the medication creates.

People are confused about when we will move to Seattle. If I do the clinical trial at the earliest we would move to Seattle at the end of February through the middle of April. In the meantime I will get my routine treatment at Fred Hutchinson which will involve a day trip to Seattle every other week until the clinical trial begins.

In December, there are two things I need to do to prepare for the clinical trial. Screening, aka, poking and prodding week is scheduled from December 2 through the 5 to determine that I am eligible for the trial and for me to sign the informed consent. That involves - and I wish I was making this up - 15 separate appointments. It is hard to tell when they are determining whether I am sick enough or well enough for the trial. I understand that the informed consent is like a Torah reading without the chants. Someone told me the consent is 39 pages long and frees them from liability for everything from losing my luggage to speaking in tongues and 39 pages of other stuff.

Assuming I am screened into the study, I go up to Fred Hutch for one day on December 19 for them to harvest some of my white blood cells. They hook up a Dr Frankenstein machine and pass my blood through it to separate the white blood cells from the red blood cells and then they collect a smallish number of those cells that are then shipped to the lab to be genetically modified into citra-cel aka cancer fighting supercells. The words harvest and blood in the same sentence makes me think of Stephen King which is not a good thought.

Then we continue routine treatment until the citra-cels are sent back which I have been told would be no earlier than February 22.

Dotti is still scheduled for her hip replacement on January 21.

We are grateful for the concern and support of all our family and friends!

Another Wednesday, another injection which so far is like the 6 before it.  I switch to the Fred Hutchinson Cancer Center beginning on December 2 for both my routine care that I now am getting at Kaiser here in Olympia and for preparation for the clinical trial that will begin no earlier than February 22.  Three years ago I read a book by Walter Isaacson called the Code Breaker: Jennifer Dodra, Gene Editing, and the Future of the Human Race.  Well by gum the future is here.  On December 19 they are going to extract some of my pedestrian white blood cells and send them to be  genetically modified to recognize cancer cells, put them back into me in February and let them as super cells fight the cancer.  If this works – and Seattle traffic doesn’t get me – no chemo, no radiation, no drugs after that. They say that multiple myeloma can’t be cured but this seems to have web feet and quacks like a cure.  

The start date of February 22 or later allows for a change to Dotti’s future —

Dotti

Now that we know the timing of Mike’s procedure, I have booked myself a deluxe hip surgery on January 21, 90 days after the steroid injection that hasn’t helped, and a month or more before he gets his fancy T-cells.  If I need help taking care of Mike I will call on some of you good people in Seattle to help us.

Injection 2 of phase 2 today.  So far the treatment has reduced my space invaders aka lambda free light chains from 1500 to 1000 so the treatment is clearly working.  So far I am having the same mild side effects  from the medications as the previous injections.  Somebody asked me if I have lost my hair and lost weight. These treatments are not chemotherapy, they are immunotherapy, ie, using my immune system to fight the cancer, so hair loss is not a side effect and weight loss is not predestined.  

We have been exploring places to stay in Seattle if I do the clinical trial and we made a discovery worthy of an Eastern European folk tale that I would call the 4 Stressless Recliners.  In 1974 I began the descent from counterculture want-a -be  to full bourgeois pig by buying a stressless recliner. Before I had a car, a tie, and the IRS attached my salary for my unpaid “war’ tax,  I bought this ridiculously expensive chair.  In fact my first wife, Antoinette and I bought two.  When we divorced, we each took one. Not wanting to start a new marriage chair deficient, Dotti and I bought another stressless recliner.  Over the years the chairs were as comfortable as ever but were a bit shabby.  We handed ours down to the next generation.  Ben still has his in his living room and is looking for duct tape that matches the leather.

An old friend and neighbor, Jean Paul, from my Seattle days has offered us the use of his apartment.  He won’t be there this winter and another mutual friend sent us some pictures of his apartment

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Antoinette gave Jean Paul the original stressless recliner! I can be “stressless” in my recovery. 

Dotti

Unfortunately, the steroid injection in my hip has not helped so I’m dependent on my cane, lots of tylenol, occasional ibuprofen (not good for my kidneys which were stressed by a lot of NSAIDS in the past) and rarely an oxycodone left over from past knee surgeries. 

Also to minimize pain I’m doing very little walking, which is sad.  It restricts what I can do with Mike and my friends, and I haven’t been able to work in my garden much all summer or fall.   Recently I drove around our neighborhood to enjoy seeing the fall colors which I would normally see when I’m out for a walk. I’m still doing PT exercises regularly and that strengthening and stretching helps.  And heating pads, hot soaks, and massage help.  I rarely cook to avoid standing so we’re getting some prepared meals delivered for most dinners, and they’re surprisingly good. I had a great suggestion from Andy for that. 

No surgery possible until at least January 22, 3 months after the injection. There’s a higher risk of infection if the surgery is done sooner. 

Mike

Injection 1 of phase 2 today. No immediate bad effects. Still in the glow of my week off from treatment. My immune system and kidney function are improving but my anemia not so much. I won’t get a test to show how I am doing killing off the space invaders aka lambda free light chains for another week.Took a nice long walk today that may be more of a reaction to the election than the drug honeymoon.

We know a little more  about our schedule in December. On December 2 I will meet with the care team. They will conduct tests as necessary to check out my fitness for the clinical trial. On December 19th I go back for the collection of some of my T cells.  Those cells are sent to the pharmaceutical company to alter into cancer fighting  Super Cells to fight the evil cancer cells. That process can take 4 to 6 weeks.  When they come back to Fred Hutch we will then have to decide to do the clinical trial or not.

Pictures of the process to remove these cells looks to me very much like Dr Frankenstein's lab. They insert tubes in each arm and strap you down so you can't move.  I am not sure if bubbling beakers and cackling are involved. I have decided the key to coping with this is Siri.  I have been practicing with some success getting Siri to play music, radio, podcast and sending and receiving text messages however she has yet to scratch my nose.  

Dotti

I don’t have anything new to report, but reading Mike’s message, I think I know who will be scratching his nose if needed!  

Today I got my 4th injection, which is the last treatment of Phase 1. Treatment is divided into 28-day periods, with no meds on the last 7 days.  I can do Phase 2 in Olympia but I must receive Phase 3 and 4 at Fred Hutchinson Cancer Center in Seattle if I want to be eligible for the clinical trial. I will be starting those two phases at Fred Hutch on December 2 but that doesn’t commit me to doing the trial, just leaves the option open.

 No ill effects from the treatment but early this week I had a bout of fatigue.  One of my drugs, Revlimid, is taken every day for 21 days, and then suspended for 7 days. On days 20 and 21 I was falling asleep in my Captain Crunch but on day 23 when I stopped Revlimid I bounced  back.  So now I have the Tilt a Whirl of the steroid and Splash Mountain of the Revlimid. Just a good old trip to Medical Disneyland.

Dotti

I had 2 pain free days a week after the steroid injection, but today the pain is back.  I’m sure I overdid my activity by standing and driving too much yesterday, so maybe I’ll feel better tomorrow.

It was a busy day in cancer world.  I just had my third treatment with no new side effects.  

Dotti and I met with a new oncologist at Kaiser who was terrific.  He was reassuring on both the likely effectiveness of the treatment and slight deterioration of my blood count.  Although I will not get a report on my space invaders, aka ‘lambda free light chains’ for two more weeks he could see improvement in my kidney function which shows the treatment is working!  Although the treatment reduces my blood counts, as my kidney improves that could boost my blood count so the repeated treatments are not destined to ever drive my blood counts lower and lower.  Also I learned a new wordle- suitable word from the oncologist’s name tag: ‘locum’, one who temporarily takes over the duties of another. My starting word on Wordle tomorrow.  

We also have some clarity about the next 90 days.  We had a zoom appointment this morning with the director of the myeloma center at Fred Hutchinson Cancer Center.  To maintain my eligibility for the clinical trial we will move care to Fred Hutch at the end of November.  By then the injections are every other week instead of weekly.  I can be treated there for 2 more months before we have to decide on the clinical trial.

The standard of care for multiple myeloma requires that even if the cancer goes into remission,  continued treatment is required with fewer, but somewhat nasty drugs.  The benefit of the clinical trial, if it works, is there is no treatment required thereafter.  The cost is we have to move to Seattle for a couple of months – I will be hospitalized for a week or two and have to stay near the hospital for a month, and I agree to regular check-ups in Seattle for 2 ½ years. A hard decision when I have such little experience with the standard treatment. 

Dotti – 

I had a steroid injection in my hip on Tuesday the 22nd, felt much better the next day (either  I’m very suggestible or the lidocaine they use lasted a long time), and now I’m back to the usual aches.  It usually takes up to a week to be effective.  Think positive thoughts for me! 

The best way to understand my treatment is to think of the arcade game from the 70’s, Space Invaders.(Kids, ask your parents).  My invaders are called lambda free light chains. Normal is 26, in September before treatment I had 1600. I have not yet gotten a new result on how I am doing killing the space invaders. It takes longer to  get this test.  Shooting the space invaders can and usually diminishes your  life force but new blood tests don't show any trend below my pre treatment levels but no improvement either.