It is mid-April and the weather is beautiful here in Atlanta, Georgia (as long as pollen everywhere doesn’t disagree with you.

My previous dose of chemo (Lomustine) was about three weeks ago, which is the time period where we saw my blood levels dropped last month and I had to have a platelet transfusion. My numbers seem to be holding pretty well this time. There were some slight drops, but nothing concerning and platelets are fine.

Side Effects and Challenges

I have occasional headaches and pressure in my head which suggest swelling in the brain. To remedy this, I increase my dosage of steroids. The problem with this solution is that steroids have a whole set of unpleasant side-effects, including:

• muscle weakness. Tina and I take several walks daily, but weak thigh and calf muscles  make these walks quite a chore. (No one said recovery and acheeiving good health was going to be easy, so I carry on and am glad we have pleasant nature walks near the house.
• voracious appetite. The steroids make me want to eat a LOT. Self-restraint is tough. I over-eat. My weight is fine, but I see how it could get out of control. At least we are eating good food. I often repeat Michael Pollan’s quote to myself, “Eat food, not too much, mostly plants.”
• Blackouts. I’ve had some bouts of feeling unsteady, almost like I’m going to black out. We’re fairly certain these are not seizures. I am conscious of what is going on and know I just need to sit down for a few minutes to recover. Tina can see these episodes coming on and it’s a little scary for her. As long as I can communicate that I’m ok, she is able to not panic and help steady me.

Fundraising

Tina and I were asked to participate in a video/photo shoot for a fundraising event for the Atlanta Cancer Care Foundation which provides some financial assistance for patients like me. The event is sponsored by the Legal Function of The Coca-Cola Company. So, Tina and I shared some of our experiences and these video clips may be used in a video at the fund-raising gala at the World of Coca-Cola.

Next Steps

I’ll have another MRI in mid-May.

I feel as though things are going very well.

Turn of the Season

This is very important to me. We finally got a warm sunny day and it lifted my spirits. Tina and I went for our daily two-mile walk through Deepdene Park without me complaining about the cold. Winter still hasn’t gone into hibernation yet, but I feel Spring is going to kick him out of here very soon.

Latest Blood Results

My body seems to be generating platelets now. My numbers were high enough yesterday so that I did not require another transfusion. Other blood numbers hover kind of low from the chemo, but nothing to worry about.

Platelet Donation

Several people asked about donating platelets on my behalf. I asked about this and apparently it’s an antiquated idea. Certainly if you have healthy blood to donate, someone, someday could benefit from your donating so I encourage that. But as far as doing it for me, it’s not practical. As you are donating blood if you want it to be meaningful to you that it’s for me you’d have to handle it like Dallas (Matt Dillon) in the movie, The Outsiders: “Let’s do it for Kebo!”

Can’t Forget Fun

I received a donation this week from someone I don’t know with the “stipulation” that I had to spend it on something fun. What a great gesture. Thank you. Having fun needs to be part of my recovery and treatment plan. I’m certain I can figure something out!

Discipline and Breaking the “Rules”

We had a gift certificate to use for a nice dinner out and used it last night. It came with a cocktail or glass of wine. Although I think it’s in my best interest to avoid drinking alcohol, I went ahead and had a glass of pinot noir with the justification that resveratrol is an antioxidant and even recommended for cancer by some sources. Tina ordered the salmon so I got the duck breast (I’m one of those that can’t order the same dish even though it was a healthier choice). And for dessert, chocolate truffle cake with vanilla ice cream. Normally I would never have all that sugar. It’s pretty easy to think, one meal of decadence isn’t going to kill me and I did enjoy it thoroughly. It felt like we were on a normal date like years ago. But going forward, I think I have to be more diligent about my self-imposed restrictions.

For the last week or so I have been been working on building a custom protocol for myself regarding nutrition. Rather than follow existing protocols like Budwig (flax and cottage cheese) or Gerson (juicing), it will incorporate concepts from these programs as well as some things I feel are right for me to contribute to Natural Healing. I’m excited to share my ideas, probably after my next MRI.

“Avoid knives and mosh pits,” was the advice of my oncologist’s nurse practitioner last week when she informed me  that my blood platelet count was dropping very low. Platelets prevent bleeding.

Saturday night I did have a lot of nose bleeds. I was tested again on Sunday and the platelets had dropped further. After today’s re-check I was taken immediately for a transfusion.

Decreased platelet count is an expected effect of chemo, so this is no big surprise. It is my first experience with it though.

The transfusion of donated platelets should last about three days at which point I will be tested again. Hopefully my bone marrow will start generating platelets again so that I don’t need another transfusion. Luckily, the transfusion is quick and relatively painless.

Other symptoms

I’m having some minor vision issues. I noticed while helping Tina list items to sell on eBay (mostly women’s clothes).

I don’t have significant pressure or headaches but occasionally have some curious sensations in my head.

I don’t fixate on symptoms or the tumor because I believe that “where thoughts go energy flows.” I don’t want to empower anything negative.

My muscles are weak which can also be attributed to chemo and steroids. Also, I have gotten away from a regular yoga practice. We walk quite a bit every day. Spring is almost here. By then, I expect to get back to some physical training, including yoga.

Next MRI

My next MRI is in two weeks. Then, we’ll go consult with Duke again.

Other options

Although Duke said we were running out of options, that is not entirely true. The NIH contacted us to report that I do qualify for  their super aggressive immunotherapy study.

While an aggressive, progressive or risky treatment might seem a reasonable plan of action for where I’m at now, I’m inclined to choose a natruopathic approach. That is, nourish my body, mind and energy so that it is in an optimal state to fight the tumor itself. This probably sounds ridiculous to some people and it may very well be, but their are no clear choices. This is tough.

We shipped the most recent MRI and data to my oncologist at Duke. She called Tina to share that it is her belief that there are not any hopeful treatment options available to me right now. That is, she doesn’t know of anything to stop it from growing. I have discontinued Vorinostat and will soon begin taking oral chemotherapy palliatively* — meaning for the purpose of extending life and alleviating symptoms. (Well, this does not resonate with me very well because I’m in a state of mind similar to when my cancer was first diagnosed — denial. I don’t feel sick. I’m not suffering from symptoms.)

What I’m suffering from is great riding weather, but knowing it’s too risky to be riding now.
*I’ll be taking Lomustine (one pill every 6 weeks) and daily Temozolomide and the next MRI will be in 6 weeks.

Surgery is not an option. Too much risk, and not much hope of success.

The previously mentioned NIH immunotherapy clinical trial probably isn’t an option either because we would have to wait several weeks for a chemo wash-out period before starting a new treatment, and they haven’t tested my tumor yet to see if I even have the gene to qualify for the study. I would also have to spend four weeks in the NIH hospital in DC far from home.

We’re not doing nothing.

We’ll make more treatment decisions and maybe some travel decisions too next week. I’ll continue with all the grass-roots efforts:

• nutrition, supplements, meditation, pranic healing sessions, acupuncture, etc.

And painting

I’ve been working on a series of paintings/drawings of my father’s Hawk tattoo.