The Wait Is Over

Yesterday I secured an appointment with my medical oncologist for the morning of December 24. According to him the bone lesion on the femur is almost certainly prostate cancer. The most appropriate treatment for the PC at this time will be androgen deprivation therapy (ADT). The actual drug or combination of drugs remains to be seen, but I'll know next week.

A different doc who is an expert in mesothelioma ordered a bone biopsy for a lesion on the iliac crest, a specific part of the pelvic bone. All four doctors want to know what it is. They say it's unlikely to be mesothelioma, but you never know. That's not scheduled yet but it will probably happen within a few weeks.

Nobody wants to touch the lesion on the spleen. It's hard to biopsy and may bleed. At present the idea is to monitor it. It's all a little frightening, but it's good to have a plan.

Still Waiting...

I had the PSMA PET/CT on December 5, as planned. Three days later I was able to see the results. The prostate cancer (PC) has spread but not extensively. It has reappeared in the prostate gland. The small lesion on the femur is PC. The lesion on the pelvic bone is not PC and so remains a mystery. The spleen is also a mystery. There is no guidance yet as to how to proceed.

Why no guidance? So far no doctor has contacted me about the scan. Yesterday I made a call to see what's happening. I had a chat with an admin and then received a call from the radiation oncologist. It sounded like he hadn't seen the results until just before he called me and went through it. 

The back story is that there are four doctors in the communications loop, each of them a specialist in different but overlapping fields. They are looking at two different cancers and two unknown lesions. They have been in touch with each other but I think someone may have dropped the ball on following up with me, the patient. I politely triggered one doc to step into this yesterday. He's now requesting that the cancer oncologist meet with me ASAP. Everyone else will be copied on that message. 

Oddly, I'm not upset about this. I kind of wish the whole thing would just go away, so this period of inaction is welcome. But I know that things are going to get busy in 2025.

Hurry Up And Wait

Last week, the day before Thanksgiving, I met with my radiation oncologist. The rise in PSA since the last treatment did not cause undue alarm. However, it’s likely that the disease has spread to other locations. Tomorrow I’ll have a PSMA PET/CT to look for those other locations. Small lesions on the femur and pelvis are suspects. The lesion on the spleen is probably something else. Future PC treatments will have to be hormones or drugs. Now that the cat is out of the bag the pinpoint radiation treatment will no longer be effective to contain the disease.

The doctor who treated my peritoneal mesothelioma in 2014 recently retired, so I met with his replacement yesterday to talk about the lesion on the spleen and what it’s cause might be. He said that there are many possibilities (some of them benign) and the return of mesothelioma is not a favored diagnosis, nor is PC. Tomorrow’s imaging study should show definitively whether the lesion is caused by PC. If not, his approach will be a very specific imaging test to better define the spleen problem. Unless something specific is discovered, the plan will be regular images to monitor the size of the lesion and the spleen. If it continues to grow then a biopsy is likely. Biopsy results would determine future actions. Interestingly, the doc described the spleen as a loose sack of hamburger. It’s highly vascular and a biopsy may cause bleeding that would require a surgical repair. If the lesion continues to expand, the risk is that it may rupture unexpectedly, which would require immediate attention due to the risk of bleeding out and dying.  

Summary: This is a step-by-step situation. I’m pleased that these doctors are in touch with each other and that all of them see all of the test results and images. I’ll post again when the PSMA PET/CT results are in.

A Week Of Bad News

Last week started off positive and quickly went over the cliff. In my last post I mentioned that there is a treatment for hip tendonitis that could be a game changer for me. The technology is called extracorporeal shockwave therapy (EST). I won’t go into the details but to say that the doctor who can offer EST required an MRI of the pelvis to confirm compatibility with the EST. He is especially sensitive to my cancer history, as doctors don’t like to disrupt anything cancerous on the theory that disrupting a tumor may cause cancer cells to break off and travel to other locations where they can take root. I had the MRI on Monday and the results showed a lesion on the femur and another on the pelvis. These new lesions put the kibosh on the EST. The concern is that the lesions may be more metastatic prostate cancer (PC), which often spreads to lymph nodes and bones. As noted in earlier posts, PC was already identified in one lymph node and treated back in July.

 

On Friday I went for my six month CT scan and a visit with the doctor who performed surgery on my chest in 2018 for pleural mesothelioma. The scan showed that an existing small and stable lesion on my spleen has grown significantly. He wants to know what it is. He wants an MRI and a biopsy. I explained the bone lesions and the possible relationship to PC. In fact, I was scheduled for a blood draw that same day to monitor PSA levels associated with PC. He decided to delay the MRI until more PC data is available. I had the blood draw and my PSA level is now higher than it was before the July treatment. This likely means that the PC is spreading in spite of all treatments so far, but we don’t know where it is. I already have an appointment next week with the doctor who has been treating the PC. I expect he’ll want to do an imaging study called PSMA PET/CT. This should identify the already detected lesions as PC or something else. It may also find PC in other locations. The spleen lesion, if not identified as PC, could indicate a recurrence of mesothelioma. The worst case here is that I have two recurring cancers. I don’t know if it’s possible to treat them simultaneously.

 

In a perfect world, the Monday MRI would have been normal and I’d be starting EST to improve hip tendonitis. The Friday CT would have been clear, and the PSA test would show reduced PSA compared to six months ago. No such luck.  

 

How I Use Conceptual Boxes

I’ve been using the word “box” in two different ways. When I think about physical mobility and exercise, I’m thinking about the things that I can and cannot do. If I can do it, then it’s in my box. If I can’t do it, then it’s outside of my box. I care about this because movement and exercise are important for just staying alive. Anything that comes out of my box is a negative. It means I’m forced to abandon an activity and my box just got smaller. Anything that comes into my box is a positive. When I started riding e-bikes my box expanded significantly. When I had shoulder surgery in January my box got smaller. It gradually expanded as the shoulder healed. I want the biggest possible box. When your box is pushing against you from all sides, your next box will be a coffin.

I have also used “box” to refer to compartmentalization. This is a technique I described in my book. When you have a lot of things going on in your life it can be overwhelming, but you can break those things down and focus on one at a time. All of the other things go into the box (a compartment) until it’s necessary to retrieve them. You can have as many compartments as you need. It’s a super-useful technique. I don't want to be pedantic about my dual meanings for "box," so I'll continue to use words interchangeably and let you sort it out.

I’ve got some things compartmentalized that I have to retrieve this week. There is my “six month lease renewal” CT scan to look for anything changing in the chest or abdomen. If there are no changes I put it back in a compartment and walk away, returning in six months. There is also the first follow up on July’s prostate cancer treatment. This will come in the form of a PSA test and I will see the results of that test the same day. There is a specific number that determines my immediate future. Above that number is bad. Below that number is good. The CT scan and the PSA test both come on the same day, this Friday.

On the flipside, I’ve got something going on that could expand my box. If all goes well, it will increase the distance I can walk before my hips get sore. This could be a big win. I’ll get into it a little more in a week or two.

Altitude Problem

In September I took a trip to LA. The idea was to learn how to fly fish with a friend who is an expert at this fine art. The day after my arrival we drove north for a good five hours to get to Mammoth Lakes. The trout fishing is supposed to be great up there. Imagine my surprise when I could hardly catch my breath at 7,800 ft. above sea level, the approximate elevation of Mammoth Lakes. True, I live at sea level and did not have any time to acclimatize to the higher elevation. True, I came down with a snotty cold and cough on the day of my arrival in LA. True, I have one functional lung. But it never occurred to me that I might be “altitude limited.” Fortunately I brought my Apple Watch with me. It’s capable of measuring oxygen saturation level of the blood. This number should be between 95% and 100%. I made a measurement and discovered that my number was between 80% and 90%. This is a “get yourself to the ER immediately” level. I toughed it out for one night, thinking that I might die from lack of oxygen, which is ironic given that cancer is the established culprit in my case.

After one night in Mammoth Lakes I told my friend Paul that I had to get out of there. He agreed. We travelled 40 miles south to arrive in Bishop, where the elevation is 4,300 ft. My O2 levels improved but didn’t get to 95% for the most part. I was sluggish and easily fatigued. This did not improve until I returned to sea level.

I learned a little about fly fishing but didn’t have the energy to pursue it consistently. We pivoted and spent some time in one of the best wild hot springs I’ve ever been to. We toured the desert in a vintage Land Cruiser and saw a lot of cool things; shepherds setting up a winter camp, petroglyphs, “roads” through canyons just wide enough for a car to pass through. The trip did not turn out as expected, but I had a great time and was relieved to return to sea level.

I’ve had this lung disability since 2018 and had no idea that I had an elevation problem. This is another byproduct of cancer, a second order effect. I wrote about getting boxed in back in February. This is a great example of an unanticipated event that limits mobility and leads to de-conditioning. 

 

The Silent Disease That Is Crippling Us

There’s a word we all use when talking about health that is descriptive but may have strayed from its original meaning. The word is “disease.” Most people think of disease as a pathological illness. “He has a terrible skin disease,” or “she has advanced breast cancer.” These are pathological conditions. But the word can be parsed differently. The prefix “dis” means “not.” The word “ease” means “without difficulty.” Thus “disease” is a distinct lack of ease. Everyone can experience a lack of ease that is not pathological but is related to their health. A common example is stress. Excess stress will have a negative effect on a person’s best possible health outcome. You can read my book to explore this relationship in greater detail.

There is a specific source of disease that troubles me. This disease is the extreme stress caused by healthcare and insurance organizations based on how they charge patients for services. Extraordinarily high prices for services and drugs may not be covered by insurance. Even with very good insurance (which is expensive) there are instances where claims are simply denied. In either case, when the healthcare providers are not paid they look for payment from the patient. The patient is trapped between two organizations over which they have no control. Not everyone is capable of grappling with insurance companies and healthcare billing organizations. If the bill is small, the patient may just pay it, but the personal circumstances of patients vary and there are patients who simply cannot pay the bill. How bad is it? Only 45% of Americans have $1000 stashed away for emergencies. If the bill is bigger, or the patient has no emergency funds, they may have trouble paying rent, buying groceries, or even continuing with medical treatment if the condition is chronic. The healthcare provider may send the bill to a collection agency, at which point the patient is under regular assault from heavy handed debt collectors. In fact, medical debt is the single biggest cause of personal bankruptcy. One can only imagine the amount of stress this causes, and that is the threat that works against the patient achieving their best possible health outcome.

It's ironic that so many pathological diseases can be treated or cured, and yet the very same people who provide these services have given you a new disease. They are the cause of this disease. They are singularly responsible for this disease. It’s the one disease that they can wipe out completely in every case, and yet it goes untreated. There are so many brilliant medical researchers and practitioners who drive healthcare forward (and are well funded), but the business practices of their organizations are stuck in the dark ages.   

I’ve gotten a taste of this in my own experience. The doctors who treat me work for a large, prestigious medical center and are generally unaware of how billing works. I’ve begun to explain this to them and they’re often shocked or horrified. I gently remind them that it’s their job to advocate for their patients. It’s horrible to do this because I really want those doctors to excel and they shouldn’t have to be distracted by business problems, but this is where we are. Where are the business innovators? I wish I had an answer for that.