Rick’s Corner     

I guess it’s time to clear the cobwebs from this blog (and, not so coincidentally, my mind) and do something . . . . like maybe use it.

Thank you all for your kind words. I don’t know that my writing is all that great nor my thoughts all that profound (although in my defense, is it possible to have profound thoughts about a missing cell phone?). Notice, however, that I am gratefully accepting all compliments sent my way. I have no intention of giving any of them back. I’m going to use them all in my autobiography “Why Do I Need A Phone When There Is Always Ringing In My Ears?”

The latest tempest in a teapot event here in Houston (tropical storms excluded) is that those graduation pics from my radiation treatment have turned up missing. Tracy said she didn’t do anything out of the ordinary after she took the pictures, but there it is.

And there it isn’t. My own personal theory is that the powers of Fernando Lamas are at work here and there are no bad, human-being-as-a-raisin pictures allowed. Some might say that I am looking too far from fabulous. But they will not have the pictures to prove it.

I have an appointment to see my transplant doc on Friday. Based on tests I’m having done on Thursday, Dr. Donato will decide how soon I enter the hospital. It’s possible I could enter as early as Aug. 5, which also happens to be my 55th birthday. Let the rebirth analogies run rampant.

FYI, all three of my doctors (Dr. Ha – radiation, Dr. Donato – transplant and Dr. Duvic – oncology/dermatology) have commented about how well I have come through radiation treatment. I have to admit that two weeks after my last radiation treatment, I am feeling pretty good. The bottoms of my feet and my armpits, both of which received spot radiation treatments, are still tender/painful, but they are improving daily. Also, I am no longer using a wheelchair. No one is more pleased than Tracy about that.

For those of you who may have missed it, my cousin Wendy wrote what I think is a really great poem about all of this. I’m going to try and move it to the comment section of this post so that everyone can more easily find it. Wendy has had several pieces published over the past few years and will be entering Northwestern U. this fall(?) to begin work on her doctorate.

Thanks to all who continue to write and offer their well wishes.

Rick
7/28/05

With the hurricanes in the Gulf, we’ve been getting a lot of rain lately. When you have rain in 95+ degree weather, the sun peaks through and you get…rainbows! Lots of rainbows. Traditional Western culture sees rainbows as symbols of renewed hope. Actually, no two people see the same rainbow because they can’t occupy the same vantage point at the same time. (In fact, the rainbow you see one minute is not the one you see the next, since the raindrops reflecting the light are constantly in motion.)

That seems right. Hope is personal and changeable. I really don’t need such spectacular reminders of reasons to hope. In every clinic waiting room at MD Anderson, small, transient communities form which offer support. They share everything from advice about how to overcome effects of radiation or chemo, to amusing stories about doctors or treatments, to jokes to food. (The radiation waiting room typically has the best treats!) Human manifestations of kindness and grace.

A few days ago, we were in the blood testing clinic waiting room, and the tech pushed a heavy-set woman out of the clinic in her wheelchair. The tech asked her if she could make it to her next appointment. She referred to her appointment schedule (these are multi-page print-outs that everyone is given to help keep them on schedule). She said,

“No problem – I can push myself.”

I asked her where she was headed. She told me she was going to the BMT clinic. That’s on Floor 8 by the C elevator. We were on Floor 2 by the A elevator. It would be a bit of a strain for her to push herself. I told her I was headed in that direction (OK – I WAS thinking of running to the car to get something) and asked if I could push her. She said that would be great – and we had quite an interesting talk all the way up to 8th floor and over to the BMT clinic. She confided she was hoping for good news…and also confided that when she told the tech she could push herself, she asked God to help her make it – because she didn’t know how she was going to. I guess I must have heard that prayer. What a wonder it was to meet her and have the opportunity to help her.

I have received several e-mails and cards which I have not acknowledged and I’m sorry for that. Seems like I just can’t get around to answering everything.

But there is one thing I have left unanswered that I would like to respond to now. Every week, without fail, the residential managers where I work have sent me a card wishing me well.

I can imagine that this is quite an ordeal for some of the managers. It isn’t easy finding eight different ways to say ‘get well’. Anyway, whoever is initiating the effort, thank you very much. Getting these cards is a real day brightener.

Also, should anyone be interested, Andrea Barry has agreed to head up a type of fan club for me to better organize group efforts on that end. Please check with her as I know she has several projects going and could use your help.

Thank you all.

Rick

I just wanted to mention that today (or I guess yesterday now) was my last day of total body radiation. I described the procedure for this in my first post. I decided some of the things weren’t entirely accurate, such as the machine looking like a giant R2D2. In fact, the machine looks more like a giant phone receiver.

I don’t know what my recent deal with phones is all about. I’ll have to look into it when I get back to Omaha. For the time being, if someone would please just take a message. . . .

Anyway, today was significant for me because I really disliked doing total body and I’m glad it’s done. Those huge eye protectors were far more difficult to deal with than I let on. I’m really,really glad those are done.

So this is my little celebration (insert noise makers here). Wednesday through Friday I finish up spot radiation and then I have my true graduation. But I thought now was worth noting. I feel better than I thought I would at this point. No more eye protectors. No more ‘walk like an Egyptian’ poses held for a seemingly intolerable length of time.

Today has been a good day and I am grateful for it.

Rick

I’ve been saying this for a while to some of you. Some of you probably think I’ve become a real drama queen. There have been times when I have been in considerable pain when I’ve written a post or e-mail and what I’ve written has reflected the pain.

Whatever the reason, whatever the degree of pain, now seems to be the right time to take a break. If something important happens, I’ll trust that someone else can keep you informed. Look for ‘graduation’ pics at the end of the week. We’ll talk again sometime later.

Rick

I have wanted to write something about Dr. Duvic for a while now. I suppose I haven’t because I wasn’t sure I could adequately explain why this woman is so special to me. I still have those doubts, but we’ve come to a time where I do it or I don’t do it and I choose to at least give it a try.

For those one or two of you who don’t know, Dr. Duvic is my doctor, my oncologist. She has a reputation of being one of the top experts in CTCL in the entire country. From the moment I met her, I knew I couldn’t be in better hands. She has always taken the time to patiently explain to me why we’re doing the things we were doing. Almost from the beginning, our goal has been to achieve a bone marrow transplant.

So here we are. My most recent clinical trial was slow to show results, but whether due to Dr. Duvic’s sixth sense or some special knowledge she had, we stayed with the clinical trial for 4 1/2 months (the trial was supposed to last only 4 weeks).

Now I deal with a radiation doctor and a transplant doctor. But I still see Dr. Duvic on a regular basis. She advocates for me. When the radiation doc was more concerned about a whirlpool treatment adversely affecting radiation treatment and said no out of hand, it was Dr. Duvic who asked him if we couldn’t do something more for a patient’s comfort, we got a different answer.

When I was diagnosed with congestive heart failure a couple of weeks ago, it was Dr. Duvic who insisted on additional tests so that we would better know appropriate treatment.

I don’t mean to suggest that everyone else is incompetent. They certainly are not. I do mean to suggest that Dr. Duvic sees me as a human being first and a patient second. My limited experience says that is pretty rare. Whether it is or isn’t, Dr. Duvic’s ‘bedside manner’ has hit a home run with me.

Last week I met with Dr. Duvic for follow up. Things were pretty hectic, but they usually are. On the following day Tracy and I were concerned about whirlpool appointments. Long story short, Tracy ended up talking to Dr. Duvic. She told Tracy how overwhelming the day before had been and that after it was all done, she had gone home and cried.

I don’t know if this was said for effect or not. But someone I had placed on a pedestal had revealed she was a human being. Imagine, I admired this doctor for seeing me as a human being and I couldn’t even return the favor.

Dr. Duvic would probably have a problem with me revealing this story, but I do it with only the best of intentions. Dr. Duvic is a wonderful, remarkable woman.

Many of you have offered up prayers for me and my well-being. I would humbly ask you to do the same for Dr. Madeleine Duvic. Include this wonderful person in your prayers.

God bless Madeleine Duvic.

Rick

I suppose the rest of you saw this coming and out of politeness or concern for my health, chose not to mention anything. I respect your concern. There was no guarantee, after all, that anything would happen or that things would play out the way they did.

Unfortunately, something did happen. Even now it hurts me to say that last Wednesday I lost my cell phone. I know – it’s not as if there weren’t any clues. Ever since I’ve been here at M.D. Anderson, my phone cried out for attention. The timing was terrible. I had nothing to give, as all my attention is directed at getting healthy again.

And so now it’s just time to say it’s over. I said I lost my cell phone, but in truth it ran away, escaped if you will. I never once set the phone on a table or desk and then walked away from it. Never once.

Each time the phone turned up missing, it had snuck out of my pocket, hoping to go unnoticed long enough to cover its trail. And, at the risk of being labeled some sort of conspiracy nut, I find it curious that each escape attempt occurred at the clinic. Apparently there was a glamour or excitement there that I could not match. So be it.

I have managed to keep the same cell phone number, so you shouldn’t have a problem calling me. I, on the other hand, have lost my phone directory and so may have trouble calling you. If that is particularly troubling to you, feel free to send your number any time.

And as for those of you who are thinking, ‘Why should this new phone be any different?’, let me assure you that I have been proactive in this matter and paid extra for the ‘loyalty’ feature. I didn’t even know that the mobile phone stores offered such a feature, but they do.

For those of you who might like a similar cell phone, just ask for the ‘mercenary’ feature.

Rick

. . . well, not really. It seems to be going at an incredibly slow pace. I tell myself I have only three weeks of radiation to go when I feel I can’t manage another three minutes of it. And I apparently have yet to experience the worst of it, according to the docs and the techs.

For those who may have forgotten, I’m continuing two days a week of total body radiation and three days a week of spot radiation. That schedule will continue until I’m done. As patients leave the radiaton area for the last time, they are allowed to ring a bell several times to signify their graduation. I personally don’t think that sounds like much fun . On the other hand, if the bell were to be attached to a tech’s body part and she was given a three second head start . . . . (insert Groucho leer here).

Since I’m falling asleep as I write this, I guess that’s a pretty good indication to wrap things up. I can’t express how great it feels to get to get an e-msil, card or letter.Thanks to everyone.

Rick`

I start localized radiation this week. It involves outlining parts of my body with blue sharpie. That’s for the entire four weeks, not just a one time thing. My shirts, my pillow case and the toilet seat are all turning blue. I don’t know what I’m going to do.

The people of MD Anderson have found yet one more indignity for me to endure. Maybe they think I’m not really commited to this and I need one more test.

I’m so glad Zach is here with me this weekend. It helps with the lonliness. Cards and e-mails would help with this also. I keep thinking I’ve unknownly offended large groups of people. So, this is me begging.

I have a lot of dead skin around my fingers which makes it difficult to type. Also, fishing for change is an adventure.

That’s it for now. Don’t know when I’ll write again. Thanks for listening.

P.S. from Zach

Shh, don’t tell Dad. I rewrote the contact page so that you can e-mail Rick directly if you want. I thought this would be handy since we took down the Contact Info page. Filling out the form takes all of 2 minutes, and participation is not limited. Just click the contact link.

Last Monday, when I was so busy looking for my cell phone, i sat in the waiting room near a woman I knew. We had a conversation, one that we had had once before. I haven’t attempted to write this before now because I didn’t know if I could make sense of what I was thinking. I still don’t.

I don’t remember this woman’s name, but she and I were two of the three people chosen for a clinical trial last January at MD Anderson. She had had CTCL far longer than I, although her blood was not nearly involved as mine.

Her skin was far more involved than mine, however. She wore a knit cap that she kept pulled down low over her face. She told me the cancer had caused her to lose her hair except for a couple of small patches. In addition, she had a couple of noticeable tumors on her face. One of her treatments had caused a heart attack. One of the things I had noticed about her was that although she had clearly suffered, she was still very conscious of her appearance. It seemed silly to be so concerned about appearance at such a serious time, but I understood perfectly. I was the same way.

Towards the end of the trial, we met again. We both assumed we were ending our time on the trial (as things played out, it was the end of the trial for her. I had three more months of this drug).

We talked about what was next for us. Neither of us really knew specifics. She thought that she would go back to treatments she had already done. She hoped for a few good momnths here, a few good months there. Our doctor had talked to her about a bone marrow transplant, but she wouldn’t consider it.

I told her that although I didn’t know how I was going to get there, I was hoping for a bone marrow transplant. At the time I didn’t even know if I had a matched donor. I told her it was the only real answer for me. I wanted a life without cancer and I would risk everything to get. She wished me the best of luck and said a BMT just wasn’t practical for her. It demanded a care giver for at least 100 days and all her family had jobs, families, commitments of their own. It just wasn’t possible for her.

I was surprised at her answer. A BMT is the only real answer to surviving this cancer and she was sayiong she couldn’t possibly, that it might inconvenience her family? I stopped short of saying anything further. Maybe there was more involved than just being surrounded by an insensitive family.

Fast forward to our meeting last week. She was sitting next to what appeared to be her daughter and grand-daughter. She was obviously suffering tremendously. She confirmed that she wasn’t doing all that well. The cancer had spread to her blood and she was in a lot of pain. She was hoping Dr. Duvic had an answer for her. What wasn’t being said was that maybe there wouldn’t be an answer.

I briefly told her that I was doing radiation prior to doing transplant and that although I was already going through a fair amount of pain, the transplant would make it all worth it.

She went back to the answer she had given me three and a half months ago – her family didn’t have the time to give her 100 days of care giving. The woman who looked like her daughter didn’t say anything. She didn’t come sit next to me and ask for specifics about how this was working for me. She didn’t do anything.

There really wasn’t much left to talk about. This poor woman, who was suffering tremendously (I know because ‘been there done that’) had, to my mind, run up the white flag. She was giving up and just hoping that there might be something to help her with the pain.

In retrospect, I may have been unfair in my conclusion. Maybe there was something more than just an uncaring family. Maybe different circumstances dictate different answers. Maybe.

Or maybe not. This woman hasn’t even bothered to see if she has any matched donors. Her doctor is recommending a transplant as her best option. And her answer is no.

If there are indeed extenuating circumstances here . . . well, the hospital is only a few miles from Tom DeLay’s congressional district. Do something, Tom. Or do some lives deserve a spotlight and others don’t.

What’s the old saying – If you try, you might fail, but if you don’t try, you’ll definitely fail.

So . . . I guess I’ll try.

Rick
6/20/05