Monday, September 28, 2009

The Name Thing

Since we have a bit of a lull in the action, now might be a good time to visit the name thing. It's a bit unusual for a girl to be named Clyde and in fact that is not her real name. Duh!

"Clyde" was born Rae Ellen, the fourth of five children born to George and Kay. The five of us, Robert, Ruth Ann, Randall, Rae Ellen and Richard, have all had a bit of "name" thing since the start in that our names all begin with the letter "R". In the fifties and sixties I guess it wasn't that unusual to do the same letter thing. It doesn't happen very often these days but once in a while you will run across it.

The "r" constant wasn't the only thing we had going for us. Look at the list and you'll see the birth order is boy-girl-boy-girl-boy. Additionally, we were born in '54, '56, '58, '60 and '62. Remarkable planning for Catholics in that era. It's a bit of a surprise that there are "only" 5 of us. Queen of Peace grade school had it's share of families with 8 or 9 kids. For some, having kids was a hobby.

Back to the topic of names and nicknames. My explanation here is likely to be "clarified" by my older siblings but the story as I remember it goes like this. Bob, the oldest, took it upon himself to re-name his youngest siblings in his teenage years. Randy, Rae Ellen and Ricky became "Butch", "Clyde" and "Chubs". Randy earned Butch by way of his perfect flat-top haircut. I became Chubs for no apparent reason as I was a fat kid only in my diaper days. Rae Ellen became Clyde because of her resemblance to our Uncle Clifford (George's brother) who was also called Clyde. I don't remember Ruth Ann having earned a nickname at that point. Her monicker, "Rooch", didn't come about until her high school years and was a gift from her friends. It was about that time that Bob became known as "Bee". I have no idea where that came from but I'm sure to get a briefing shortly after this story posts. I will update you all with the facts and corrections to the name story but this my take on how Bob, Ruth Ann, Randy, Rae Ellen and Rick became Bee, Rooch, Butch, Clyde and Chubs. It should be noted that in the last 20 years or so my nickname has changed from Chubs to Chard, the second half of RiCHARD. Aren't they clever?

Here's the latest on more clinical matters. Clyde had her first official round of conditioning chemo last Wednesday. She went in for a round of Rituxin, a monoclonal antibody normally used because it targets only cancer cells. It's stated purpose now is to help get her white blood cell count down to "make room" for the transplanted cells. She will be admitted to the hospital for a more potent round of chemo on Wednesday. She'll get treatments on Wednesday, Thursday and Friday and then basically hang out and recover until she receives the donated t-cells on Tuesday.

Jan, Clyde's transplant coordinator, sent me my course of Neupogen today. I will self-administer the shots on Friday through Monday and they will harvest my white blood cells on Monday.

Please keep a positive thought for Clyde. We're getting to the thick of it very soon.

If you have any clarifying comments to make about the re-naming process, and some of you will, let me know and I'll be sure to post a correction/update.

Be well.

Wednesday, September 23, 2009

Some Nitty-Gritty on the Lab Day

The lab day went a long way towards instilling confidence in the knowledge and expertise of the medical team at the UW Hospital. The whole process for that matter seems unbelievably credible. The UW Hospital has done something in the neighborhood of 20,000 of these transplants since 1981. They have it down.

The first confidence boosting evidence was a copy of the report on the compatibility of my blood with Clyde's. For this procedure, a comparison is made of the blood's HLA's. HLA stands for Human Leukocyte Antibody. These are an antibody that lives on the surface of white blood cells. There are eight markers on your HLA's. To be a good match, all eight need to match. A sibling is a person's best hope for finding a perfect match. Each sibling has a one-in-four chance of matching. Not only did I have identical HLA markers, but the lab went further to look at additional blood markers. We were a perfect match on those as well. It was reassuring to me, and I'm sure Clyde, that the blood profile was so perfect.

Prior to the harvest of my blood cells, I'm going to give myself shots of a drug that will cause my bone marrow to over-produce white blood cells and force them out into my blood stream. I learned that the drug I'll be administering is made by a company that has been a client of our event planning company for many years. The drug, Neupogen, has been used for this purpose in thousands of transplants. It is a tried and true standard. For me it was reassuring to know the company, Amgen, and many of the people that involved in that organization. They have a wonderful group of people that work hard and believe in the good that comes from the products they manufacture. Amgen is a huge company with offices in many aprts of the country. I have no idea if the offices in Boulder, for whom we work, have anything to do with the production of Neupogen. Still, it feels to me like it's one more piece of the puzzle that we can absolutely rely on.

The vibe I'm getting is that this amazing opportunity is coming together as though the stars have aligned for this purpose. With the opportunity comes risk. Clyde, I and our entire family thank all of you for your continued positive thoughts and prayers. Something good is about to happen.

Be well.

Tuesday, September 22, 2009

Ready or Not, Here We Come

Monday was a day.

Clyde and I spent the better part of yesterday at the University of Wisconsin Hospital so I could undergo my pre-transplant lab work. The plan for the day seemed straight-forward enough. Arrive around 9:30, have blood drawn, pee in a cup, fill out paperwork, call it a day. For all intents and purposes, thats what happened.

Clyde and I had agreed that she would accompany me on my maiden voyage into the vast frontier that is the UW Hospital and the transplant process. For over 20 years it was she that was observed by friends and family as she was poked and prodded by the health professionals and she relished the idea of witnessing the wince on the face of another as the needle went in. It's hard to blame her. Not that she took pleasure in the pain of another, but understand where she's coming from. She's the pro in that environment and it can be gratifying to put one's expertise on display in support of a fledgling patient.

The experience was a bit more thorough that I had planned. The afore-mentioned tests were indeed administered. Additionaly we went to see the facility in which my blood cells will be harvested. Jan, the coordinator, took her turn at evaluating my physical and emotional health. Then my very own transplant doctor, an obviously wise, 40-something man whose name escapes me, took his turn at the same process. Questions were asked and answered by both me and the medical team. In the end, though the infectious disease portion of the blood tests are not yet back, we all agreed that my health and blood compatibility will work well as the source of the needed blood cells.

Looking back on the experience, the unexpected part of the day was the massive reality of it all. For the first time, the major players, the medical team, Clyde and I, were actually acting on what had been, to this point, a fantasy, a dream, a plan. This transplant had, in every way, started. No longer were we envisioning what it would be like, how it would look, how it would feel. It was really happening.

As much as that is a good thing, it also brought us all closer to the fears and risks that go along with the promise. How will Clyde feel in the weeks and months to come. How long will it take for all of us to see results. Holy crap, here we go. After more than 20 years of a lifestyle dictated by the needy demands of a disease, the door to a different way of life had been opened. No longer is this an "off in the distant future" event. The time has come.

While I'm sure she'll adapt quickly and happily to her disease-free exsitence, the reality of the process and imminent life change are huge. For the first time, I saw Clyde's emotions come to the surface. For the first time since early 1989, I saw my own emotions about her illness on display. The clinical steps of the day were expected. The emotional feature was a complete surprise.

Since leaving the clinic early Monday afternoon, I am overwhelmingly convinced that the transplant will be a success. The events of Monday simply made the reality of the process huge and real.

Be well.

Friday, September 18, 2009

Momentum is Gathering

We're getting closer. I received an email today from Clyde. As it turns out, the medical team now confirms that she exhales just fine. There is some test she was given that measures how she exhales, or how much, or how fast. the first time around, she just didn't quite meet the standard for those requiring a t-cell transplant. Today she went over there and she showed them! Apparently, she blew them away, so to speak. That was her last test. The tooth is healing, she exhales fine, good to go.

Now it's my turn. I will be traveling to Madison tomorrow. My day for lab work is scheduled for Monday morning with the medical team at the University of Wisconsin Hospital. Jan, the transplant coordinator, told me that they will take blood, check heart and lung function and other tests. The biggest concern is that I am harboring some infectious disease that would be passed on to Clyde with my blood. To my knowledge, that isn't an issue. I have been working out all summer (at least until I broke my ankle a few weeks ago) and have been otherwise taking good care of myself. I think I'm healthy. I guess we'll find out next week.

Clyde learned an interesting factoid about the consequences of this procedure. As the t-cells do their work on her metabolism, her blood type will change to match mine. It will take 90 to 100 days but eventually she too will be B+. She was concerned that because I'm male, she'd suddenly grow a full beard and need to scratch herself. Jan assured her that the blood type change would be the only meaningful change. Too bad for Clyde. I can tell you that a good scratch once in a while can be very gratifying.

We'll learn a lot about the process is the next few days. Clyde and I are both looking forward to getting started. I know we're both a little nervous as well. It's times like this that make for a rich life experience. The whole family will remember the next couple of weeks for a long time. Keep thinking positive thoughts.

Be well.

Tuesday, September 15, 2009

The Ball is Rolling

I spoke with Jan the transplant coordinator yesterday for almost 30 minutes, She is very good at listening and gathering the information that the medical team needs. I can't imagine the depth of her patience. I'm sure in her job she finds herself listening to many, many stories that really have nothing to do with the medical procedures for which she's preparing. Jan is awesome.

We confirmed my appointment for my lab work and physical exam on Monday the 21st. Bee, (another name story we'll get to) my oldest brother, has some airline miles so he booked a flight for me. The typical itinerary, Denver-Dallas-Madison. Yes, I said Dallas.

The exam should take two to three hours. Jan will teach me how to give myself a shot so I can administer the drug I'll need to ramp up the production of the cells that they need to harvest. Oh joy. The interesting thing about the drug is that it's made by a good client of our event planning business. The company, Amgen, has been a client for fifteen years or more. They are a great organization with very nice people. I look forward to thanking them for the role they'll play in Clyde's recovery.

On the other side, Clyde's tooth is healing well. She should get signed off by the UW Hospital oral surgeon today. Later this week, she'll get a dose of Rituxin, a monoclonal antibody that targets cancer cells and leaves healthy cells alone. She'll be admitted to the hospital on the 30th for a more robust round of treatment pre-transplant.

When Clyde and I spoke yesterday there was a moment when we shared a mutual sigh as the reality of the situation hit us. I don't want to speak for her, but my guess is that this is a veritable rollercoaster at this point as she balances the threat of the risks with the promise of being disease free. I have every confidence that we're moving towards a positive result.

When you think about Clyde's situation, please send positve thoughts out into the universe. If you pray, please pray for the most positve outcome. To some it sounds nutty, but I believe that we can create an energy around Clyde's treatment that will produce complete remission of her cancer.

Be well.

Sunday, September 13, 2009

So Now What?

OK, so you've been brought up to speed on the history of this whole thing. Honestly, my recollection doesn't come close to telling the whole story. It would take Clyde and everyone else involved in the long process for the story to be complete. Now the question is, "what happens next?"

Before a transplant like this, there are specific steps for the donor and recipient to go through. For Clyde, that process has already started. She went a couple of weeks ago to have an insanely thorough physical and emotional evaluation. They tested her blood (11 vials worth), her lung function, her heart function, x-rays, and about everything else you can test in a nine-hour physical. She reported that it was grueling. The results came back that she was doing very well. There were only two issues to deal with before she was ready for the last phase of her pre-transplant preparation.

An x-ray of her jaw revealed that she had an impacted wisdom tooth. As often as things like that result in an infection, and with the level to which her immune system will be suppressed by chemo, it was decided that the tooth had to go right away. A week ago Friday, Clyde paddled off to the oral surgeon and had the tooth extracted. I was concerned that her low platelet count would result in a lot of bleeding, but as I mentioned before, I am not a doctor. Things went off without a hitch and she has that hurdle behind her.

The other issue raised by her uber-physical was a matter of lung function. It seems that during some test, she didn't exhale enough, or quickly enough or something. The medical team is giving her a re-do on that test and it doesn't seem to be a huge concern to anyone.

With those two issues behind her, Clyde will be laying low and getting stronger in preparation for her "conditioning" phase of chemo. In this round of treatment, doctors will administer a rather robust round of drugs attempting to knock down as much cancer as they can, while at the same time reducing her white blood cell count. With her counts down, her body will be better able to accept my t-cells when they show up.

For me, the process hasn't really begun yet. I got a call on Friday from the transplant coordinator. "Jan" has been counseling Clyde for a while but this would have been my first contact. As it was, I was in a meeting and was unable to take the call. When I returned the call, it was late Friday afternoon and Jan was on her way to Margarita-ville already. I'm confident that we will get together via phone on Monday and she will lay out the plan for my preparations.

I know already that I will need to travel to Wisconsin for my own day of lab tests. It's my guess that the focus will be on my blood and the quality thereof. It's important that my blood be free of pathogens (diseases) that would be passed along to Clyde. It's likely that that lab day will be September 21. Clydes follow-up visit with the oral surgeon on the 14th will confirm that schedule.

Beyond that, I know that the medical team will be "harvesting" my t-cells on two or three consecutive days beginning on or around October 1. Prior to that I will be given a drug that will put my bone marrow "on steroids" for the manufacture of white blood cells. That will interesting in that I will be giving myself the shots. I'm treating that as a good opportunity to teach my kids that shots are no big deal. Of course, we all know that shots are awful and the idea of giving them to yourself goes against everything we've always considered to be good. I will, for Kate and Jack's benefit, be a brave little soldier and just stick that huge, nasty needle into my own body. No big deal, right?

The way the schedule is written right now, Clyde will get my t-cells on or about October 6.

Something that has gone un-said to this point is that this entire story has played out under the remarkably capable guidance of the medical team at the University of Wisconsin Hospital. From top to bottom, the staff there has been top-notch at every level. What would you say to a team that has worked to keep you sister healthy for two decades? My family's gratitude will never be sufficiently expressed to that amazing team of medical professionals.

That's about all I know about the process going forward. We will learn more tomorrow after I speak with the coordinator and Clyde sees the oral surgeon. Check back for the update.

Be well.

Thursday, September 10, 2009

Sit on the Couch, Wrapped in Bubble-wrap

As it turned out, my blood is a perfect match for Clyde's. The requirement is that the donor's blood has to have identical HLA's, whatever they are.

Words cannot explain how big a deal it is to have a match. For Clyde, it's a shot at lasting and complete relief from a condition that has plagued her for more than two decades. I don't know how many people can grasp how long that is. There are kids in college that weren't born when she was diagnosed. George Bush 1 was president at that time. Now, for Clyde, there's a light at the end of the tunnel.

Since we found out that I am the match last Spring, I have been trying to get my head around what it means to me. On one hand there is a tremendous sense of responsibility. I find myself thinking about my own safety more than usual. Clyde wanted me to sit on the couch wrapped in bubble-wrap when we learned of the test results so nothing would happen to me. I am definitely more thoughtful about what I eat. I take vitamins and fish oil daily. I have greatly curtailed my use of intoxicants. When the time comes, I want to be healthy. Clyde's counting on me.

On the other hand, I'm overwhelmingly grateful for this gift. There was nothing done on my part to qualify me for this role, yet I get a chance, a good chance, to give the gift of health to another person, a family member no less. The significance of that is "meaning of life" big. What else have I done or will I do that is bigger and of greater meaning than that? Nothing. A person could be a champion of industry, have made all the money in the world, created the world's most beautiful musice or art and still not have contributed to another's well-being on this level. Sound corny? It might, but until you're in this position, it will be very hard to understand. I know Anita get's it. She's my sister-in-law. She gave a kidney to my brother a few years ago. She earned the right to feel this way. Surgeons took out her body part. She felt pain and fear. In my case, all I have to do is lay there while they take blood from my arm. More or less risk-free. And for that I get a sense of fulfillment from life that few enjoy. It is a wonderful gift.

Apparently, words don't explain my side of the equation either. I don't mean to understate the importance and reward of being a good parent to my kids or husband to my wife Lindsay. Through those efforts I contribute to their health and well-being as well, and that's enormously important. I will work for those rewards for the rest of my life. Still, somehow this is different.

I'm looking forward to the process starting in earnest. In a few weeks we'll be in the thick of it.

Thanks Clyde for the amazing gift you're giving me. I'll do my best to return the favor.

Be well.

Monday, September 7, 2009

Treatment to This Point

When Clyde was first diagnosed, her 1st course of treatment included oral chemo. I can't tell you what the drugs were but they appeared to take care of the problem. Over the span of nine months, the lymph nodes where the cancer was collecting reduced in size to the the point that the doctors couldn't detect the disease. The toll on Clyde didn't seem that great either. Granted, I wasn't around much, but I understand that in the course of treatment, she never missed a day of work due to side effects or the illness itself. There was some hair loss and I know there were days that she felt like hell but Clyde is a person of strong will.

The effect that the first chemo had on Clyde's disease lasted for a long time. At her 5 year check-up she was cancer free. The same at 10 years. I think it was 13 years before symptoms returned. We can only imagine how it felt to think you're in the clear only to have the process start over. Again, Clyde's stoic nature hid whatever fear or frustration she was feeling.

In the time that Clyde was in remission, science was making great gains in the treatment of her condition. A new class of drugs called mono-clonal antibodies were developed. These drugs were designed to attach themselves to a protein coating on the cancer cells. They kill the cancer without damaging healthy cells. This all but eliminates the nasty side-effects associated with conventional chemo. Clyde was given a drug called Rituxin. It came in a drip and worked very well and quickly. Again, the cancer was put down and stayed that way for almost 5 years.

After that round, the cancer returned several times and more quickly. There was a round of radiation on one specific spot. Next there was a round of R-CHOP, an acronym for a particular cocktail of drugs. About a year ago Clyde was involved in a clinical trial that nearly killed her. I don't know what she received and I'm not sure anyone else knows either. She wasted away, suffering from the treatment considerably more than from the disease. It was hard to watch. When it was decided that she be taken off the trial and put back on traditional chemo, she felt better. I've never known a person to feel better and gain weight while on chemo but compared to the trial, it seemed easy.

The only downside to going back to a "normal" chemo is that it became evident that it was no longer working very well. Doctors saw improvement in some areas, no improvement in some areas and cancer growing in some areas. Suddenly, Clyde was left with the option of a t-cell transplant for her best hope of the complete remission she had seen earlier in her treatment.

The t-cell transplant option was something we were all aware of. It had been discussed last spring as an alternative. In this scenario, t-cells are "harvested" from a donor by selectively removing them from blood. The procedure is done in two variations. In one, t-cells are harvested from the patient themself and transplanted back. The other process is to take the cells from another person and transplant them. Clyde is getting ready for the latter process.

The best donor for for this type of transplant is a sibling. Each sibling has a 1 in 4 chance of being a good match. Clyde has 4 siblings, there should be a match, right? All four of us went off to the local lab to have blood drawn. When the results were all in, the math had worked in Clyde's favor. She has a match. The transplant could be done should it become the best option.

It's the best option now. In the next several weeks, after all the tests are done, all the hurdles cleared, the transplant will proceed. Bring it on.

Be well.