Spiderman: Round 2

Well, it looks like I get another chance to become a superhero. Tomorrow I will be down at MD Anderson again to receive an injection of radioactive isotopes if all goes according to plan. Since the beam radiation turned out to be a "no-go" for my pelvic region, the doc and his buddies decided that this was the next course of action.

My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.

Acceptance

In one of my earlier blog posts, I made reference to the stages in the Kubler-Ross model grief cycle in which the last stage is acceptance. At what point can a person look their own mortality in the face and accept it? At what point can they reach an inner peace with the fact that their days on this earth are near an end?

In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.

Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.

I am trying like hell not to give up, but at what point do you start working on the acceptance thing?

More learnings

Here's an update on what we learned at our appointments today.

Shoulder. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.

Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:

1. Foot massages (self given since he's extremely ticklish)
2. Move foot around in a bowl of rice to stimulate the senses
3. Wear fuzzy socks occasionally to change up the sensory routine
4. Wear looser, more cushioning shoes

We're ending the day with an MRI of the pelvis (after an x-ray of the pelvis and femur to make sure there are no near-fractures that need to be treated). Time for the weekend...

No more jumping rope...at least right now

Josh has, despite the additional pain he's been feeling over the last 5-6 weeks, been continuing to try to work out 3 times a week, including jumping rope, bench press, step-ups and the like. Yesterday, the doctor told Josh that he's not to jump rope or do anything more physically demanding than walking for the near future because of the risk of fractures.

We learned yesterday that:

• The primary tumors in his chest are still stable (after their considerable reduction with chemo).
• He has a very small mass growing next to the two primary tumors, but the doctor isn't worried about that yet.
• The cancer in his bones (particularly his hip area) has surged since last time...hence his increased pain.
• The radiation he had to his L5 vertebrae in his back did great things to beat the cancer back in that location. The doctor is very excited about this result.
  

Bone Pain. Today Josh gets a pelvic MRI and Monday he gets another lower back MRI. And he meets with a radiation oncologist on Monday to understand the plan of attack. The options it sounds like we have is either radiation in a pill form that will attack the cancer in all his bones or traditional radiation targeted in all the areas they can hit (rather than taking a selective approach on where his pain crops up). It depends on what the MRIs indicate. Unlike the last radiation round that Josh took up in Dallas, he'll definitely be in Houston for this one since it's much more involved.

Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.

Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.

Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.

Test Week

This is the week my wife and I head back down to MD Anderson for the next set of two-month scans. My last day of chemo was July 15th, so this will be the second round of scans post chemo to check to see if the tumors are stable or progressing. I have CT scans and MRIs and X-rays set up for Wednesday and then meet with the doc on Thursday to go over the results. My gut instinct tells me they are stable. Don't ask me why I think that...I just have a feeling. The rest of my body: that's another story.

I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.

Atypical diet

At 39 years of age I have to admit there were times I wished I had the physique of my high school days. I have never really been overweight, but looking in the mirror I sure would have liked to make that stomach bulge I see go away. Mission accomplished.

Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!

Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:

1. I don't feel good.
2. I rest to take it easy.
3. I become inactive.
4. I don't eat.
5. I lose weight.
6. I get weaker.
7. And back to #1: I don't feel good...

I am finding it hard to break this spiral. I have never had to eat to gain weight before and I am not really sure how to do it. If I were on the outside looking in on my situation, I could see myself as being one of those guys who would reply with a simple "just eat more." But it isn't that simple.

My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.

I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.