Musings by OZ

Here we go again!

Ginny and I are making a move, we are heading north in search of our forever home.

In a series of unexpected events we have arranged a new life in a town I had previously not heard of, Clearlake California.

Unemployment was the catalyst that started us on this journey and living a healthier life is what convinced us that this is the right move.

A couple of weeks before Covid we came to the conclusion that we were tired of working so hard just to pay rent and put food on our table. We were ready for a change.

Ginny’s aunt mentioned that she thought Clearlake California was the perfect place for us so we jumped online and took a look around. We liked what we saw so I started to search for possible job options. I tracked down a cabinet shop that was looking for a shop foreman and started a conversation with the owner. Two weeks after I started looking for a job Ginny lost her job and I was laid off from mine. Sitting at home quarantined in our small apartment with nothing else going on I decided to take a risk and drive to Clearlake for a 2 week trial run at the cabinet shop. Halfway through the two weeks I started coughing, I also had shortness of breath and had a mild fever. I am immune compromised so just to be safe I headed to the Santa Rosa Kaiser emergency room. I spent half a day in the ER getting various tests including a Covid test. During my time in the ER I asked the nurses how the oncology department was. I learned that they have a great oncology department and a kind nurse offered to start the process for me and put me in touch with one of the oncologist.

For two weeks I lived in a $38 a night tiny cabin by the lake. The roaches arrived on the second day, I lived with them for 5 days before the owner sent an exterminator.  My cabin was sprayed for roaches while I was at work. I didn’t want to sleep in a tiny room that had just been sprayed, I looked for alternative places to stay but there were no options. It turns out that sleeping in a tiny room that had just been sprayed with roach chemicals was, surprise, not a healthy thing to do. I tested negative for Covid, the roach spray was the culprit.

This covid adventure led me to an oncologist that is now going to be my oncologist / hematologist.  My new doc studied my charts and test results and based on this info he diagnosed me with my third disease,  Thyroid cancer, Chronic Lymphocytic Leukemia and my disease Cold Agglutinin Disease, a trifecta of diseases.

Cold Agglutinin Disease is a rare autoimmune disease. It’s an interesting disease for sure. My immune system attacks my red blood cells and kills them before they reach maturity. As a result of this I turn purple. Temperatures lower than my body temp will cause various parts of my body to turn purple.  My ears, face, arms, legs and torso will turn purple in an interesting lacy pattern.  My toes and fingers go completely purple and I lose all feelings in them.  When my arms get cold they become fatigued, heavy and painful.  Ice cream makes my tongue constrict, turn purple and become painful.  I have been warned by the new doctor that I should take this new diagnosis seriously. Looking like an eggplant is not the only risk with CAD. If not properly treated this disease can cause my extremities to becomes gangrenous and die resulting in amputation.

Here are a few photos to show what CAD does to me

This is such a rare disease that most doctors have never heard of it. The random doctor in Santa Rosa not only diagnosed me with this disease, he is very knowledgeable and has treated patients that have it. I am very excited to see this new doctor, he is very enthusiastic about my case.

I am writing this as a sit in the chemo room at Kaiser. Yesterday I had a conversation with my doctor in LA. My symptoms are getting worse and after the talk with my doctor he arranged for me to visit the chemo room to receive treatment for CAD.  Today I get a 5 hour bio therapy treatment in the hopes that it will slow down the progress of CAD.  I am still fighting Chronic Lymphocytic Leukemia, it has not been easy, it’s taking its toll both physically and mentally.

I am having difficulty accepting that I now have another disease, I am tired of surprises. This secondary disease is most likely caused by the cancer. If we can deal with the cancer then the CAD should also resolve itself.

Next Wednesday, the 20th, I am picking up a 26’ rental truck and loading the apartment, on the 21st we will load up our storage unit and on the 22nd we drive to Clearlake. We make two stops on our way out of town. Our two pets Shpongle the dog and Peek a Boo the cat have been fostered out for a few years now. On Friday we are putting the family back together and heading to the lake.

Moving day

I am excited for this next part of our journey, its an opportunity to live a life that is better suited to us than the city life. I still have to deal with cancer and other health issues. This move allows us to set our priorities straight, it puts us back in touch with nature and allows us to live in a community that is healthier.

I wrote this a couple of weeks ago, we have now officially moved to Clearlake. The move was fairly eventful, I had two tires blow out in my U-Haul truck. The first one happened around 3 pm and I ended up being stuck on the side of the freeway for 4 hours in 109 degree temps. The second tire exploded at midnight so I climbed on top of the truck and star gazed for a couple of hours while waiting for the road side assistance to show up.

I started my new job this week, my first day was Monday. Today is Thursday and I am sitting in the Santa Rosa hospital getting another chemo treatment for the Cold Agglutinin Disease. Today is the first of 4 weeks of treatment, we are trying to get this disease under control before the end of the year when temperatures drop. Once I have completed this treatment my new doc will concentrate on the cancer. I am not sure what treatments I have ahead of me but its possible that I may end up getting stem cell treatment.

I am tired of being a cancer patient but a cancer patient I am so I will try to make the most of it. I refuse to let cancer ruin my life, I will triumph, I will live the best life possible no matter what the universe throws at me.