When the rubber meets the road

We went to meet with Dr. Ann Mallott, oncologist at UC Health - Memorial Hospital North. The world is so weird right now. Andy couldn't come in with me so he was on speaker in the car. The hospital felt deserted. The facility is nice. I knew my BP was up, though. There is something about the whole conventional medical thing that gives me anxiety anymore. I wish I trusted it all but so much of it is misguided. As I often say, I know just enough to get me in trouble. Everyone there seemed nice. It's hard to really feel like you get to know anyone though, through masks. As Dr. Haverkos and her medical assistant both predicted, I liked the oncologist a lot. I had several questions on how things were done with Belinostat and tried to give her a very short synopsis of it all. My main question was if it was safe to start treatment considering the pandemic. She took the question very seriously and essentially said there wasn't a right or wrong answer. Because of the T-C...

I took Prednisone for 5 days (missed one) 3/16 - 3/21. I was so excited to have total relief from the pain and swelling. It came back with a vengeance last night, however, only 2 1/2 days since the last dose. It seems worse now. I am having trouble walking because my ankles hurt so bad. Funny how quickly I was thinking that maybe I could put off treatment. As I understand it, they won't let you just take prednisone because the steroidal drugs depress the immune system. They can also cause shortness of breath, which is kind of scary when you think of the coronavirus and how we are all watching for that as a major symptom. We go to the local oncologist Thursday and I expect to start the IV therapy Monday. I will go every day, Monday through Friday, twice monthly. If I feel better, I plan to try to work in some capacity. Maybe the new movement to online educational services will allow me to work from home. We shall see. Like everyone, I am trying to wrap my mind around the i...

Dr. Haverkos just called. I do not qualify for the clinical trial unless I have tried another treatment like chemo and it didn't work. So...it appears we start Belinostat. I tried to schedule that appointment with Dr. Ann Mallot at Memorial Health in Colorado Springs but they don't have the referral yet - so I wait for their call but we should start it soon. 5 days of IVs and then 16 days off. This will go on indefinitely. I have to do it all in one clinic so I can't go back and forth to California. Fatigue and anemia is still a side effect which has made working kind of crazy, so I don't expect to go back to work any time soon. Of course there are more possible side effects but...I've got to do something and this appears to be the least toxic at this point. Of a bit of concern; my immune system is already suppressed because of lymphoma (although I have been happy with how I've fought off colds and such these 3 years). It is then more suppressed because I am t...

Yes, we traveled to Seattle, Washington when it was considered ground 0 for the coronavirus. I so hope we never regret that decision.  As I detailed in the last post, we went to see Dr. Andrea Shustov who I learned about from patients on facebook who said he was different.  We left there stunned that this expert didn't chastise me for waiting so long - in fact, he congratulated me for my decisions! We finished our time at SCCA house and  flew to Colorado. What a difference 3 days made - lots more masks on people in the airport and planes.  I made all the kids wait until we had changed and washed up before we could hug. The grandkids were so excited to see us. What medicine! My the end of the night we got home, I was really hurting though. People ask me what my symptoms are. I know I look healthy and when I am at work or out, I am using all of my energy to be functional. But, when it hits- it's as if I have the full-blown flu. I get the chills, ache and hurt ...

Here is a detailed summary of our meeting with Dr. Andrea Shustov at the Seattle Cancer Care Alliance (SCCA). A huge thank you to my sister, Julie, for typing out the conversation while listening in via phone!!! It was a very fast 2 hours together. If you just want the basic summary, scroll to the bold blue paragraph toward the end. (-: I fully expected him to tell me I needed to jump into CHOEP or some other chemo regime, followed by a bone marrow transplant. I have absolutely dreaded this. It is all that has been offered by the famous City of Hope and 3 other oncologists. I know so many others who have gone through it (many on facebook that I've met over the past 3 years). People get through it but I would be going in with the knowledge that Periperal T-Cell Lymphoma's almost always relapse afterward. I went in praying that I would be the exception but knowing that this could be jumping into a world where I am at the mercy of drugs and other interventions that often lead ...

We boarded a plane with more empty seats than we've seen in awhile this morning. The 2nd leg, into Seattle, was even more empty. I surprisingly saw very few masks, even in Seattle today. The world seems to be going crazy and shutting down with the CovID-19 virus (corona virus), but life seems to be going along here as normal. People are constantly using Purell - as we are. We decided to rent a car because it is about $125 for the 3 days and taking an uber to where we're staying cost $47 one way. It's probably better not to depend on public transportation right now - it could shut down at any moment. The schools are now closing for the next 2 weeks; I overheard a mom lamenting on what she is going to do with her kiddos for the next 2 weeks. We are staying at SCCA House - Seattle Cancer Care Alliance. This is a pretty cool place where cancer patients and caretakers can stay in a large hostel-type facility with tons of heightened cleaning standards to protect patients goin...