Naps are good

I was supposed to have my ninth chemotherapy session this past Thursday. Before administering the four drug regimen through my port, they draw blood to check on my level of anemia. Anemia is expected because of bone marrow suppression but if my hemoglobin (Hb) gets too low they will need to do a transfusion. On Thursday I was just above the transfusion threshold (a Hb of 8 is the threshold and mine was 9). Every other session, I see the Physician Assistant on my team and she takes an updated medical history and does an exam. My current level of fatigue and shortness of breath got her attention. (I think it's when I told her that I have to stop about every half block and catch my breath when I'm walking the dogs). She spoke with my oncologist, who decided to postpone Thursday’s treatment and rule out pulmonary or cardiac toxicity, which can be side effects of the chemotherapy drugs.

They did a computed tomography (CT) of my chest to rule out pneumonitis (negative) and I had an echocardiogram yesterday (no changes from a pre-cancer study). Therefore, the fatigue is just due to age and the chemotherapy itself. It is a relief that I have no serious side effects and I can now proceed with the last four chemotherapy, treatment sessions and get beyond all of this oncology care. My last treatment will be July 16.

There is a couch in our family room that is particularly comfortable: I can frequently be found there taking a nap with two Cairn terriers sleeping right next to me. They love naps.

Luna

Trash barrels to the curb

I need to confess I had this delusion that I could continue to regain my energy between chemotherapy sessions. I did pull it off after the first four sessions, but now, after seven sessions, I feel like a shell of myself. I don’t think it’s possible to avoid chemo- exhaustion; you can’t block the inevitable; the effects of chemotherapy are cumulative.

A good lesson I’ve learned in recovery is to stay in the moment, be present as much as possible all the time; (don’t project into the future).  But now, when it takes me an hour to take the trash barrels out to the curb, I find a revert frequently to a haunting question (which is fear of the future): I will probably survive, but what if I never regain my strength or energy?

I go around daily with severe fatigue and shortness of breath. Bad sleep. I was seen this week at the oncology urgent care clinic, and they found I had a pulmonary embolus (PE) in my right lower lobe.  Somehow, the radiologist could report that there is no strain on my right ventricle, which means the PE is mild. Add an anti-coagulant pill and press on.

I have chemo brain fog as well; I am thankful that I’m retired and there is time to think slow.  My 12th and last chemo session is July 10th. Diane is probably going to have to bring me to the seventh floor at Fred Hutch in a wheelchair, but I hope it’s not on a gurney. The infusion nurses are all very competent and cheerful; next week I’m going to bluntly ask them to level with me about my probable condition over the next two months.

I started this blog to stay in touch with my friends. While all of this negativity is real, I also know it is temporary. Sharing and being vulnerable isn’t easy; hiding reality is even more difficult. Thank you for sharing my journey; I value each and every one of you.

Her name is Mabel; her name is a derivation from one my chemo drugs (nivolumab) as concocted by my chemo RN’s; she is my chemotherapy teddy bear gift from Diane. She optimistically goes to every session.

Medical Research

I am going to send out a medical update on myself in a few days. But right now, I feel compelled to comment on the defunding of medical science. This is something I know a lot about.  NIH is (was) the premier funding source for medical science research in the whole world. But even so it isn’t easy to get an NIH grant (I had two NIH grants, and they were the most intense, time-consuming written documents of my whole career). NIH funds only about 12% of all proposals and they rarely give you all the money you request. Once a study involving human subjects is underway, it is run by skilled technicians or RN’s under the supervision of the investigator. Back then, it would be unheard of to have the funding abruptly cut off. That study is over, probably forever, if the funding were abruptly withdrawn: (The technicians would need to immediately find another job as their salary is their living expenses; the human subjects would leave, and the chain of data would be broken; and many investigators (poorly paid MD’s) would leave the university if medical research could no longer be their calling). If the study was a randomized treatment trial, the incomplete data would be useless, and the subjects would need to get on with some sub-optimal treatment for a possibly life-threatening/life-altering illness. Even if the government were to restore the funding several years later, irreparable harm would have already been done, and most studies could not be started up again. A careless person with a political whim does lasting harm, and that instigator has no clue. I think each major research university around the country should publish a simple list of the major findings their medical researchers have produced in the last five years. You would be impressed.

Virgin River Narows, Zion NP

UPDATE

Looking back, my last blog post on March 30 sounded a little negative after getting the results of the second PET scan. A few days later I had a telemedicine visit with my oncologist, Dr. Poh. Recall that the radioactive glucose uptake value (SUV) was way down from my baseline scan and showed that the tumor itself was close to being metabolically inactive. She explained that the large SUV drop indicated that the chemotherapy has been very effective. There are relatively few tumor cells still present. The fact that the tumor mass itself is still relatively large (it decreased about 50%) was not surprising to her considering its initial large size. (It likely is mostly fibrous and necrotic tissue and may not ever completely go away). Bottom line: nearly tumor free and a very good result. Stay the course, and finish out the chemotherapy (7 more infusions every 2 weeks). Gratitude is a major concept in recovery and these results make Diane and I feel very grateful.

Canyon Lands NP, UT

Settling into a routine

The Palouse; eastern WA

I have now had four chemo Rx sessions (every 2 weeks): the infusion takes about 4 hours, go home, struggle to sleep for 2 days (because the Rx includes a high dose steroid), battle fatigue the rest of the week, followed by a fairly normal week. Then do it all over again (8 more). The Lymphoma related skin condition with severe itching and poor sleep has been the worst aspect, but that is now getting better.

I am still doing the weightlifting twice a week. I wear a mask at the gym. The weights being moved are less with fewer reps because I just don’t have the stamina. But I still really enjoy it. I get a number of blood draws every week; the clinic is monitoring my WBC count where they want my neutrophils to remain adequate and my lymphocytes to be low. The oncologist didn't think I would lose my hair, but I am; I'm now nearly totally bald with no eyebrows. I must log onto the UW/Fred Hutch EMR multiple times a day for appointments or labs or something. In the days prior to an electronic medical record the number of phone calls for cancer patients must've been ridiculous.

The clinic monitors my overall progress using PET scans: a radio-labeled modified glucose is injected IV; since the the tumor is metabolically hyperactive it uptakes a disproportionate amount; the tumor size and the uptake rate is measured. I just had a second PET scan this week, and the results just became available today. The tumor shrank in size about 50% and there was a dramatic decrease in the uptake rate. However, we were led to believe that the tumor would shrink more than it did. I just finished a note to my oncologist in the EMR asking her would not the decreased uptake rate (and probable decreased mitotic activity) make subsequent chemotherapy less effective (maybe we should also debulk it). The “sigh” you just heard was from her saying to herself, “please spare me from any more MD patients”. Cheers.

Chemo Treatments

I’m now on a four-drug treatment schedule for the next several months: every other Thursday I go to Fred Hutch for a chemotherapy infusion. Tomorrow, March 6, is the next infusion. For about three or four days I feel awful. But it is not immediate; symptoms [fatigue, muscle aches, shaking chills] occur about a week later. I sleep a lot, but only several hours at a time; overall, I’m a little sleep deprived. The skin condition and constant itching is supposed to get better soon.

You will be surprised to hear: the most prominent cancer symptom is my emotions. I am quick to get tearful and emotionally overwhelmed but all in a good way. Examples: talking to my granddaughters, a movie, holding one of my dogs.  My whole life, I’ve had trouble getting in touch with my emotions; not anymore.

I have two shadows that follow me everywhere. Meet Clacey and Luna (below). Between the two of them and Diane, I feel well cared for.

Back-to-Back ER Visits

My first Chemo Rx appointment at Fred Hutch was 2/5/25. As you would expect from a premier cancer treatment facility, the visit went smooth. Each patient has a private infusion room: everything is clean and modern, as the clinical buildings are all relatively new. Recall that I have this central line IV port: the RN attached an IV to the port and proceeded to infuse each of the 4 drugs consecutively over varying periods of time specific to each drug. Each drug is prepared in a separate IV bag by the outpatient pharmacy with the dose very specific to the size and weight of the patient. If you have ever had a blood transfusion, the process is similar: two RN’s confirm my identity , the name of the drug, and the dose for each of the drugs. I was one-on-one with my nurse as he/she never leaves in case there might be a complication. The whole visit took about four hours. Diane was there the whole time and drove me home.

A list of potential complications for each of the drugs is long, and varies from nausea to cardiac arrest. During and after the infusion I didn't have any complications until last Thursday/Friday (days 8/9). I had severe fatigue and slept for most of those two days. Early Saturday morning I woke up with shaking chills and a fever of 102. The oncology physician on call wanted me to be seen at the ER in case I had an infection from an unexpected early drop in my white blood cell (WBC) count. We spent most of the day at the UW ER on Montlake. As it turned out, I didn’t have a low WBC; my fever and fatigue were from a new case of Covid. I was discharged on Pax/Lovid. Early the next morning, I was sitting on the upper step of ours stairs sending a text message. When I was done, I stood up abruptly and proceeded to have a syncopal episode; passed out, and fell down half a flight of stairs to the landing. I made such a loud commotion it woke up Diane. I hit my head and there was a large knot on my left temple that subsided to a big bruise mark over the day. That evening, I noticed if I moved my head too quickly that the room would spin and I diagnosed myself with a mild concussion. I related this my primary care doctor the next day, who then wanted me to go back to the ER. We spent much of Presidents Day in the emergency room at Overlake. The CT scan of my head was negative showing no bleeding or internal damage. As it all played out, the fatigue, fever, and syncopal episode were all due to Covid, which is good, because I have 11 more chemo treatment visits. The next chemo Rx is this week on Thursday 2/20.

DIAGNOSIS & Rx PLAN

My interventional radiology biopsy was last Tuesday. The lymphoma pathologists at Fred Hutch do special stains and check for specific markers in order to determine the exact diagnosis. I have a classic Hodgkins Lymphoma with scattered giant cells [remember Reed-Sternberg cells for all my medical friends] . According to Dr. Poh, my lymphoma specialist, the best chemotherapy regimen is clear based on a multi-center study published a year ago; it will be a 4 drug regimen called NAVD. Tomorrow they will place a central IV line with an infusion port on my chest. They will infuse all 4 drugs every 2 weeks for 6 months. beginning this Wednesday 2/5. The prognosis is good (80-90%). Diane and I feel optimistic.

WAITING and more WAITING

You haven't heard from me because nothing of any substance has happened since my first visit with the lymphoma specialist on January 9. At that visit, she explained that she really needed tumor tissue with associated genetic markers to know the specific type of lymphoma. Basically, all lymphoma diagnoses lead to chemotherapy. The exact chemotherapy regimen and prognosis varies, depending on whether I have a Hodgkins or non-Hodgkin's lymphoma and the primary cell type.

Since I already had a prior interventional radiology (IR) procedure at Overlake that didn't get sufficient tissue, Dr. Poh recommended a surgical biopsy. The Lymphoma clinic made a referral to the Surgery clinic and that is when the waiting began. Despite many phone calls, we did not hear anything for more than a week. Finally, this past Tuesday on January 21, I had an appointment with the surgeon. He had very carefully reviewed the anatomy of my tumor on the CT scan and, as he showed Diane and I, the anatomy was all quite complex. For my medical friends, the lymphoma extends from about T 10 to L4. The vertical dimension is 12 cm. It wraps around my aorta and envelops the renal vessels. He was not confident he could do a laparoscopy and get sufficient tissue without having to revert to a laparotomy (open abdominal surgery) where I would need to recover for a month before they could start chemotherapy. Therefore, he sent an urgent referral to Fred Hutch interventional radiology. . But it didn't get treated as urgent despite rather blunt messages [essentially emails) from me in the electronic medical record. As of today, the biopsy is scheduled for next Tuesday the 28th. I've asked for a pathologist to be present to make sure we get sufficient tissue. That is where things stand as of today.

Fred Hutch & PET scan

Wednesday 1/8 was my 1st appointment at the Fred Hutch cancer care center.  They did a PET scan where they inject a modified glucose compound that has been labeled with radioactive fluoride.  Any tissue that is hypermetabolic [that has absorbed more of the glucose compound] will show up as a “hot spot” on the image.

Results: “Multiple, intensely FDG avid retroperitoneal and paraspinal nodes, the largest of which is a nodal conglomerate, measuring 77 x 60 mm. Given the observed activity and bulky disease, it is a probable lymphoma”. Basically, they found the same mass that was seen in the emergency room on x-ray plus some nearby smaller masses [scattered lymph nodes in the same region]. The tissue was very active, which would be expected from a cancer. The good news was that there were no other sites elsewhere in the body.

Today I met with the doctors in the lymphoma division at Fred Hutch. They did a thorough medical history and physical exam. They very much agree with the radiologist that I have a probable lymphoma but “the devil is in the details”. There are a number of different types of lymphoma, and each has a different treatment protocol. I’m almost certainly looking at chemotherapy in the near future and most lymphomas respond well. I am good prognosis, in general, in that I am otherwise strong and healthy.  But, as expected, they need a good sample of the lymphoma tissue to analyze for genetics and various cellular markers. Then they will know which specific combination of chemotherapy drugs to use.

Diane and I were both impressed with the clinic facility, the staff, and the doctors. I am confident I am going to the right place  [the sign above the reception desk says “Lymphoma Clinic”].  The next step is for the General Surgery division to schedule me for an operation to basically do a large biopsy of the mass and thereby get all the tissue information needed. Their best guess was that the operation would be in two or three weeks.  I feel fine; until they get around to doing the operation I’m going to do weightlifting and play golf.

Health Update for Family and Friends

Hi there

On December 9,2024 I played Chambers Bay with Brad Cox one of my good golf friends. He noticed, as did I, that I was particularly short of breath. The next day, I mentioned it to my primary care physician thinking she would order some pulmonary function tests or something similar. Instead, she had me go to the emergency room to rule out a pulmonary embolus. As part of the evaluation, the ER did a CT x-ray, that to everyone's surprise showed a 8 x 10 cm retroperitoneal mass.[underneath my heart, surrounding the aorta, and near my kidneys]. The mass had a particular fuzzy/mushy appearance on x-ray that made it very suspicious for a lymphoma.

X-ray appearance is one thing but it is not definitive. There needs to be a tissue diagnosis after either a biopsy or an excision. On December 19, at Overlake, interventional radiology did a biopsy through my back under conscious sedation. They removed tissue from the mass that was submitted to pathology for diagnosis. Subsequently the pathology department at Overlake submitted the tissue to the University of Washington for consultation. On December 27, that consultative opinion came back as essentially normal lymphatic tissue. However, the pathologist noted that there was only overall a rather small amount of tissue. Basically, pathology wanted more tissue to examine. Currently waiting for word from the oncologist as to how to proceed. I suspect she will want to surgically excise the mass in the near future.

While Overlake has been wonderful in terms of my medical care to date, both Diane and I favor the Fred Hutch Cancer Center at the University as our preferred oncology care center. This goes back to our roots at UW medicine. However, it is never easy to connect with the university in terms of arranging medical care. Lately, through Michael, my Strength Coach at the weightlifting gym, I've been learning how to use AI. Yesterday I used AI to search the Fred Hutch for faculty physicians in the hematology/lymphoma division. Fred Hutch puts on an annual review course for oncologists and AI was able to provide me with the list of lectures. Last year three physicians gave lymphoma lectures. Went to the Fred Hutch website and I looked up those three physicians and one of them had listed her email contact. I emailed her and got almost an immediate response and in this way I'm now connected with Fred Hutch with an appointment with Dr..Christina Poh on January 9th. I corresponded with her today : she wants to do a PET scan which will be on January 8th. Maybe I will need an excision biopsy of the mass eventually.

There have been associated medical problems going on for the last few months as well. These are probably related to the probable lymphoma. I have a diffuse skin condition with a lot of itching that is, in retrospect, probably due to various cytokines secreted by the lymphoma. Once again, AI was amazing when I asked it about lymphoma and skin conditions. Also, I was back in the ER at Overlake once again early in the morning on December 21 to rule out a blood clot in my lower leg. Ultrasound did reveal a blood clot, but it was in the Soleus muscle and not a classic deep vein thrombosis. The ER physician put me on injectable Lovenox [a blood thinner] ,twice a day, which certainly seemed to me to be excessively aggressive treatment. Yesterday I saw the vascular surgeon at Overlake who agreed. For now, I'll be on an oral antithrombotic medication until all this oncology stuff is straightened out