Thursday, December 24, 2009

It's a Merry Christmas

Lindsay has a huge shamrock plant that she's had for a very long time. It's a magnificant plant with broad leaves that open and close as the day runs it's course. Last fall, as the economy and the country's sense of confidence and well-being went into the toilet, the shamrock acquired some sort of shamrock disease. The plant became weak and started losing it's color. Bugs invaded it and it appeared as though the shamrock was doomed.

Lindsay happens to be very good with things that grow. She did some research and learned about methods she could try to revive her prized plant. I came home one day and the shamrock had been thinned and cut way back. She had applied a pesticide to rid the plant of bugs. Now it became a matter of regular watering and watching to see how the silent plant friend would respond.

Over the next several weeks, maybe months, the shamrock started to come to life. I didn't really notice but the leaves became thicker and a deeper green. The plant was getting healthy.

With the economy in the toilet our business was also down the drain. Lindsay and I were feeling great stress about the prospect of our main source of income being down the drain and my pending unemployment from my skiing job. One gray spring morning we were sitting in the kitchen sharing our thoughts of dread and gloom when at the same time we noticed that right in the middle of our newly revived and flourishing shamrock, was a single white flower.

The realization that we had noticed this sign of health and life stopped our conversation immediately. I think we both had a tear in our eye because here, right in front of us, was a profound symbol of rebirth. The shamrock that had been on death's door was alive and well. For me it was affirmation that things were going to get better.

As it turns out, the shamrock is a metaphor for a far more important return to health. Since late September and early October we have seen Clyde experience a very similar metamorphosis. A woman that was thin and weak and gray is now bright and strong and full of life. Her fears and apprehensions about her future and longetivity are turning to excitement and anticipation for what a healthy life holds for her.

We all understand that Clyde is not yet out of the woods. While her current health is better than it's been in years we still don't know about the anti-cancer effects of the transplant. That's to be determined in the next few weeks. We do know that now there is a good chance for recovery and health and that alone is the type of miracle that we hear and talk so much about at this time of year.

The flower in the shamrock didn't represent the business recovery Lindsay and I were thinking about when we noticed it. Instead it was a symbol for something far more significant. When compared to a picture I took of Clyde in Kay's kitchen at the end of September to one taken by Rooch on Monday, I can see a white flower among the lush leaves of a reborn plant.

Merry Christmas to all of you and thank you for prayers and good wishes all year.

Be well.

Friday, December 4, 2009

Beginning of a New Chapter?

It's been a while since you've been updated on Clyde's condition. I spoke with her yesterday as I always do on the days she visits the clinic. She had an appointment with Dr. Longo on Thursday and was again very excited by how well he thinks things are going. When you're facing a procedure like a t-cell transplant that cannot be undone, you're putting a lot of trust in your medical team. That's been Clyde's life for the last few months so she hangs on the words coming out of Longo's mouth. He is nothing but positive.

The blood work shows that all of her counts are steady or rising. The key markers are in the "normal" range. They are continuing to cut back on Prednisone and are happy with how her body and "my" cells are playing together. We're getting to the point when I should stop referring to her blood cells as "mine." (the period is inside the quotation marks, Lance, did I do that right?) At this point she has new bone marrow that is producing new blood cells all the time. Those cells are hers and only hers. It's absolutely amazing if you ask me. Our entire family walks around shaking our heads in disbelief at how fortunate we've been through the process. I can only imagine how Clyde feels.

I do know that she feels well enough to go to work for a couple of hours a few days a week. I'm afraid that people will see her out and think that she's out of the woods and all healed. She's not, yet. When she reported to her doctor that she was feeling head congestion he immediately prescribed antibiotics - strong antibiotics and lots of them. Infections still need to be beaten down swiftly and soundly as no one really knows how strong her immune system is.

Despite a head full of snot, Clyde feels well. I don't know if you know anyone like this, but when I talk to Clyde I can hear her appreciation for health and life in every word. She is a person that is living every moment in the way it should be lived. What a lesson that is for the rest of us. We all gripe about this and that when in fact we should recognize the miracle that is every moment. We should all do ourselves a favor and get on Clyde's bandwagon of moment-by-moment celebration for life.

In about six weeks we'll get results from a complete examination of Clyde's health that will tell us if her new blood is working against the cancer. I'm already feeling anxious about it. I get the sense that while it's in the back of Clyde's mind, she's just looking forward to tomorrow. Awesome.

Be well.

Wednesday, November 25, 2009

A Thanksgiving of a Lifetime

I've always thought Thanksgiving was the best of all our holidays. There's no mandatory, token buying of gifts, no religious dogma, just people being thankful for the life they live and the people and things around them. Look around your own life. As difficult as things have been, you have a lot to be thankful for. Tomorrow, if you're like most of us, you'll take some time with family and/or friends and acknowledge your unbelievable good fortune. It's a beautiful tradition.

In our family, the harvest this year has been nothing short of miraculous. First, we learned that there was a possible cure for Clyde's cancer, a disease that she's suffered with for 21 years. Then we learned that my blood matched hers for the purpose of the t-cell transplant. My blood not only matched, but is perfect for the procedure. Then, the procedure went off without a hitch. Clyde was healthy enough to receive the transplant and the medicine I was given made the t-cell harvest more than bountiful. Clyde received the transplant without a severe reaction.

A few weeks ago, tests confirmed that the t-cell transplant has worked exactly as planned to this point. Clyde walks the planet with bone marrow cells that are genetic clones of my marrow. She is treated at one of the top medical facilities in the country and by one of the most successful doctors in the field. And all of that is happening in the town where Clyde lives.

The miracles don't stop with Clyde's amazing progress. My oldest brother, Bee, has been living with a transplanted kidney for more than five years and is healthy. His wife and kidney donor, Anita, celebrates five years in remission from leukemia this week. Our parents, all in their mid- to late 70's are healthy and able to live fulfilling lives. We have an abundance of things for which to be thankful.

Look around your life. It's my guess that you too have a great life. I'm not suggesting that you live without problems and difficulties. You do. We all do. But when you take the time to truly observe your life with an eye towards the good, you'll see that you possess great fortune in the form of lifestyle, friends and family. I know it sounds corny but I'm confident it's true.

Take the time tomorrow to recognize all that you have. Ask those around the dinner table with you to do the same. Support each other's observations of good.

Tomorrow, our family will have an obvious focus for our thanks. Clyde, and everyone else for that matter, is healthy. The miracle that was brought to us by modern medicine is working. We have the support of all of you in Clyde's journey.

Take a look at your life. You too have abundance right in front of you. Acknowledge it.

Happy Thanksgiving!

Be well.

Saturday, November 21, 2009

Sailing Right Along

Clyde called me yesterday to report on her lab visit. She has been feeling well, going to work for a couple of hours at a time and enjoying her time resting. At her visit to the clinic this week she had a chance to be examined by her transplant doctor, Dr. Longo. She enjoys meeting with him. Clyde tells me that he possesses a calm, confident demeanor that she finds comforting.

Her lab results were what was expected. Her white blood cell count was a bit low as it can be given her current drug mix. The red blood cells and platelets were good. She has been taking a magnesium supplement so that level was good as well. Dr. Longo was very reassuring that everything is progressing as expected.

The rash that Clyde has been experiencing has disappeared. She had been applying a steroidal cream along with her mega-dose of Prednisone. Since the rash is gone it's time to ween off the steroids. This is great news for the people of Wisconsin as it's rumored that the poor play of the Packers is due to the shortage of steroids caused by the size of Clyde's dose.

At the moment that's all there is to report. We're getting closer to the 90 day CAT scan that will tell us how the new bone marrow is doing against Clyde's lymphoma. When Clyde mentioned that to Dr. Longo, his reply was "Yeah, that's gonna be cool." What the hell does he mean by that? We're hearing it as encouraging.

In the meantime, get outside and enjoy this amazing world we live in. It's ski season now.

Be well.

Friday, November 13, 2009

On the Phone with Rooch

In this time of Clyde's transplant and recovery, everytime there's news, good or bad, I spend some time on the phone with both of my sisters. The two of them, Rooch and Clyde, have been very good friends for a long time. They're a pair of bookends, Rooch, blonde and fair to Clyde's brunette and olive complexion. Still, they've counted on each other through thick and thin for many years.

Yesterday was another very big day. We learned at Clyde's lab appointment that she now has "my" bone marrow. It appears that graft has taken hold. The lab is only able to measure up to 95% of the cells but what they see contains male chromosomes. That would be me.

This is a huge milestone. The cancer fighting benefits are yet to be determined but at this stage of the process, there is no better news to get. Cancer, consider yourself warned, we're coming for you next.

Needless to say, Clyde is ecstatic. Many of the failures along the way that she feared can now be put behind her. Now, armed with new bone marrow and a positive outlook, she can go about the business of getting herself healthy and back to some semblance of a normal life. Her appetite is good, she's sleeping and has begun an exercise routine that includes a mile walk every day. We are all excited about the potential success that lies ahead.

The phone conversations with Rooch after the last two rounds of good news have been very helpful for me. Anyone that knows Rooch is aware of her unflappable positive attitude. When you talk with her you cannot help but be buoyed by her confidence in the good things in life. For me this is important right now. Through this whole story I have detached my "self" from the biology and chemistry that is the transplant. There is no doubt now that my blood is at work helping Clyde regain her health but I don't feel like "I" have anything to do with it.

Rooch on the other hand is always very generous with her praise for the effort I put into the process. Be assured, the sacrifice was minimal but she continues to treat me like I'm some kind of hero. That feels good to me. I explained earlier that I haven't been able to let the good new sink in. Rooch's talks are helping with that. All of us have had worry and doubt about the success of Clyde's procedure. Talking with Rooch is always reassuring.

In times of family crisis, those involved seem to find a role to play. Clyde's the Warrior. I'm the Donor. Bee is the Experienced One. Rooch is the Keeper of the Positive Thoughts. Each player is essential to the others and at times, the most important of the set.

Clyde goes back to the lab next Thursday for the weekly check up. The medical team will be weaning her off the steroids soon and hopefully starting to back off the immonosuppresion drugs as well. In the meantime she feels well and is held aloft by some seriously positive attitude.

Thanks again for your positive thoughts and prayers. You are helping more than you know.

As for you Rooch, we couldn't be doing this without you.

Be well.

Tuesday, November 10, 2009

We're Doing It, We're Doing It...

We're Doing It, We're Doing It...That's what the voice on the other end of the line was saying when I picked up the phone yesterday. It was Clyde and she had just returned from the clinic.

Over the weekend she had developed a rash on her rib cage and torso. It didn't hurt or itch so she didn't give it much thought until it started to get bigger. There was no fever with it but she gave her doctors a call anyway. They asked her to come in on Monday so they could see it and attempt to determine what the cause was. Our Mom, Kay, went with her to the clinic Monday around midday. She got in quickly and the medical team took a look at the rash. After a thorough examination, Dr. Longo, her transplant doctor explained that the condition was a symptom of Graft versus Host Disease.

More specifically, this type of rash and the location of it on Clyde's body indicated that it was a symptom of Graft versus Tumor activity. In his words it's a sign that my "good" cells were attacking her "bad" cells. Read the last two sentences again. The cells transplanted into Clyde from my blood are attacking her cancer! That's the point of the whole procedure. This was the first indication that the desired medical process had in fact begun.

The news took Clyde by surprise to say the least. This is the most positive development in the course of her illness in more than two years. By the time she called me, she was bouncing off the ceiling. After the ups and downs of the last several weeks, Clyde was due for some positive news. This development is as positive as it gets.

I am surprised at the affect the news had on me. When she told me I realized that it was unbelievably good news but it was so huge that it didn't sink in right away. I'm not sure now that it's hit me. It was easy for me to get excited last night when I got home and told Lindsay and the kids but I'm still plagued by my cautious nature on it. We are not in the end-zone yet. We are driving and have wonderful momentum but I want empirical proof that the cancer has been destroyed. We're just not there yet.

I know I'm being a wet blanket. We should celebrate the small successes and good news with wild abandon. I want to feel like something big has been accomplished but for some reason I'm holding out for the declaration of victory. The final gun sounding with "Team Clyde" ahead on the scoreboard.

Please don't let my tempered enthusiasm dampen yours. Our collective, positive energy on this has given Clyde much needed momentum on the road to recovery, remission and cure. Keep up the great thoughts. I truly believe we're winning but understand that the fight is not over. The rash Clyde has now is a warning sign at the same time it's a positive one. The doctors will get the GvHD under control and the recovery will continue but there will still be ups and downs. Keep up the good vibe. I will be patient and let the most recent good news sink in.

"We're doing it, we're doing it....!"

Be well.

Saturday, November 7, 2009

And the Bone Marrow Says?.......

Nothing...yet. Results of Clyde's bone marrow biopsy on Thursday won't be back for another week or so. I sat on pins and needles all day Thursday waiting for the results. Clyde called mid-afternoon to report on her clinic visit. Her blood counts are very good. Her white count is well within the normal range and the red counts, including platelets, were slightly below normal but not to the point that she needed a transfusion. Her mineral levels, magnesium, potassium, phosphorous, etc. were all good as well. Her meds were not adjusted at all which is a nice development. It's been the case recently that she's been taking too much of or too little of one drug or another. The immunosuppression drugs have been the tricky ones to dial-in. They've been responsible for the last visits to the hospital - nasty side-effects.

The medical team told Clyde that when the biopsy results come back, they expect to see both her cells and mine active in the marrow. I'm not sure what leads them to believe that but it sounds like good news to me and Clyde. If that is the case, the doctors will start adjusting the immonosuppression drugs to try to help my cells get to work on the cancer. I may be over-simplifying the process a bit here but that's generally the program.

The CAT scan Clyde had in the last couple of weeks showed the presence of some cancer in various places. It didn't appear that anything was getting worse but there wasn't significant progress against it either. Cancer, consideer yourself warned. We're coming for you and it's just a matter of time.

Clyde's spirits are high and she's feeling well. She attended a meeting at her office last Tuesday and is getting out of the house a bit. Her appetite is good and she still has plenty of opportunity for rest. At the moment things are going very well.

A big thanks goes out to all of you that took the time to send Clyde a happy birthday wish on the 3rd. She received a lot of wishes and notes on her Facebook page. She called me that afternoon to check in because she was getting birthday wishes from people she didn't know. My faith in the goodness of people was reinforced by all of you that took the time to prop up a person you'll likely never meet. I'll never be able to thank you enough. You are good people.

I'll let you know when we hear about the biopsy results. In the meantime please keep good thoughts. If you want to send Clyde a message, find her on Facebook. Her name is Rae Ellen Packard.

Be well.

Saturday, October 31, 2009

Quick Update

Reports from Madison (Oregon, WI really) inform me that Clyde has settled in at home and is feeling well. She called me herself on Thursday afternoon to fill me in on the action at her lab visit earlier in the day. It was Bee's turn to watch her so he took to the clinic to be analyzed. In Clyde's medical state, someone needs to be with her at all times. As her health can take a serious turn very quickly, her medical team wants someone there to assess her condition and make calls on her behalf should a situation arise. Most of the family has been taking turns sitting with her, watching TV, movies or her sleeping.

At the clninc her blood showed a good presence of white blood cells and a red blood cell count in the "normal" range. This is all good news. They gave her some magnesium, in which she seems to be chronically deficient. They also wanted to give her intravenous phosphorous to help keep her cell walls strong and flexible. I wasn't aware that humans need phosphorous. I told her to go home and eat a couple of sparklers but she seems to think that taking the prescription they gave her was a better idea. Whatever.

Intrigue was added to the situation by the doctors' announcement to Clyde that next week they will perform a bone marrow biopsy. The significant piece of that procedure is that they will be able to see if the t-cell graft is taking. Suddenly we're all looking forward to the test results with a bit more anticipation. The test will take place on Thursday and I'm glad I have a busy week to distract me from my anxiety. With the instability her condition has shown in the last few weeks I'm confident that something big is going on. I can hardly wait to hear that her marrow is showing activity from cells taken from me. This is awesome!

That's the update for now. Please keep a positive vibe going for the marrow biopsy this week. This could be big.

Be well.

Tuesday, October 27, 2009

You are now free to move about the cabin...

After ten days in the UW hospital Clyde has been liberated. She got home in the late afternoon on Monday. She says that when she's sick the hospital is the place to be but when she's feeling well, she wants to go home. That's a sentiment that's hard to argue with.

While in the hospital she had a colonoscopy and an esophagogastroduodenoscopy to look at her digestive tract from top to bottom (so to speak). The pathology from biopsies taken didn't reveal anything conclusive but the medical team is convinced that Clyde had an episode of Graft versus Host Disease. It's likely that this won't be the only time GvHD rears it's ugly head. Hopefully, the exactness of the blood match will keep the episodes rare and mild.

With some adjustments made to her meds and the addition of a few more, the symptoms seem to have resolved and Clyde is back on an upward trajectory.

In the last several sets of labs, Clyde's blood counts have been very good. Her medical attention was excellent, as usual, and she had a lot of time to rest and eat. Her weight continues to come up and all of us that are close to her are feeling very optimistic once again.

I am a firm believer that your positive thoughts and prayers have created an energy that goes a long way towards ensuring Clyde's most positive possible outcome. My family and I cannot thank all of you enough for the vibe you're putting out into the universe. We have a remarkable circle of friends and supporters.

Be well.

Friday, October 23, 2009

Some information coming in...after dozens of tests.

I spoke to Clyde for a few minutes this morning. She's feeling much better, compared to yesterday anyway. In the last few days she's had a lot of tests done to determine what's causing her nasty symptoms. The highlights include everyone's favorite, the colonoscopy. While she was in a drug induced nap, they also snaked a camera down her throat to see what was happening. The conclusion after all that was inflamation of the lining of her stomach. They could see that in a full-body CAT scan done a day or two ago but the camera views confirmed it. Inflamation of tissue of the digestive tract is a symptom of Graft versus Host Disease.

While that can be a huge problem, the medical team is not too up-in-arms about it at the moment. They have taken blood, given blood and infused her with several minerals to keep her body working properly. At the moment, she has 7 bags dripping into her arm. That's unbelievable.

The most significant drug currently being administered is Prednizone, a synthetic steroid. This is a drug that can cause more problems than it treats and it treats a lot of diseases. Because it's a steroid, it can work well against inflamation. It is also anti-tumor and immunosuppressing. The side-effect profile is an amazing list of conditions you don't want to have. The bag is not dripping into my arm, but I have absolute faith that the medical team at the University of Wisconsin Hospital will monitor Clyde to control whatever comes up.

It's now clear that Clyde's recovery is going to be a long road. We're on day 17 and there have already been two inpatient hospital visits. Take my word for it if you don't know Clyde. This woman is a warrior. She faces the challenges with a stiff upper lip, almost daring the disease to knock her down. Not that there aren't moments of fear and emotion. Courage doesn't mean never being afraid. It means being afraid but standing up for the battle anyway. Clyde has been fighting the good fight for almost 21 years now, everyday.

On a side note, I vsisted with a friend of mine last night that is fighting a brain tumor. My conversation with him reminded me that Clyde isn't the only cancer warrior out there. The next time you see a friend or relative that has beaten cancer or is living with it now, see them for the fighter they are. These people are to be respected.

If you're a Facebook member, you can write on Clydes wall at

It doesn't matter if you don't know Clyde. She's a fellow human who stands for the fight in all of us when faced with monumental challenge. Support her if you have a minute. She will appreciate and gain strength from your words.

More updates to follow as we learn more.

Be well.

Wednesday, October 21, 2009

Let's Play "Stump the Doctors"

Here we are on Day 15 and Clyde is in the hsopital again. This is her second visit as an inpatient since the transplant. On Tuesday evening, she had a temperature that peaked at 104.8. Yikes! After Tylenol, her temp came down to around 99 but she didn't feel very well.

Several rounds of testing failed to reveal the cause of the elevated temp. Clyde had thought during her last hospital visit that she had a slight sinus infection. She was given some antibiotics but still the temperature came up. The medical team has tested for H1N1 and the more common flu but both results were negative.

Tests of her blood show that her white blood cell count has risen dramatically in the last few days. It's believed that the cells that are present are actually my cells beginning to prosper in her blood stream. After her battle with Posterior Reversible Encephalopathy Syndrome last week, she was taken off the immonosuppresion drug Tacrolimus. Perhaps that opened a window for the Graft versus Host Disease to make an appearance. There are other symptoms present (that we won't cover in great detail) that also support the GvHD diagnosis, but nothing is for sure at the moment. Some GvHD is desired as that is how the transplant works against the cancer in her body. The medical team assures her that it is controllable when it arrises but it can be a serious problem.

For now, she is feeling better than yesterday but still not herself. I'm getting reports a couple of times a day. Testing continues and I will update as soon as there is some news.

In the meantime, keep a good thought.

Be well.

Friday, October 16, 2009

Bump in the Road

So it's not always going to be smooth sailing. Things had been going unbelievably well through the first eight days that we all started hoping that it was going to be easy.

Yesterday, day nine, we got our first reality check. Clyde woke up around 2:00a with a raging headache. She got up and took a Vicodin for the pain and went back to bed. After laying there for 30 minutes with no relief from she the pain, she got up and took another. That put her to sleep, blissfully I assume. At about 5:00a she woke and needed to use the bathroom. She says she knew where the bathroom was and what she needed to do to get there but could not get her limbs to comply with the orders her brain was sending out. She woke up Tom, her huband, who helped her get up and get to and from the bathroom. Needless to say, loss of motor-control was very distressing.

Tom, being the amazing care-taker he is, called the medical team at the UW Hospital. At 5:30a you get an answering service who contacts the doctor on-call. When the doctor responded, Tom described the symptoms and was told to bring Clyde to the ER immediately.

Upon arriving at the hospital, Clyde was put through a battery of tests and exams including a CAT scan of her head. The scan showed a build up of fluid that was causing pressure inside her head and resulting in the lack of coordination. A CAT scan didn't show the detail necessary to reveal all the required information so an MRI of her head was ordered. Results of that suggested a diagnosis of Posterior Reversible Encephalopathy Syndrome.

As the name suggests, PRES is a build-up of fluid in the back of her cranial cavity. The key word in all this is "Reversible". The condition sometimes presents as a "rare but serious" side-effect of a drug she takes for immunosupression called Tacrolimus. This drug, branded Prograf, may not be entirely to blame for her condition. Doctors tell us that PRES can be caused by high blood pressure, low platelettes, low magnesium, low potassium or recent doses of Rituxin. Interestingly, Clyde had ALL of those symptoms as well. In that some of those are side-effects of Tacrolimus, she has been taken off that drug in favor of Mychophenlate, marketed as Cellcept. The medical team is confident that Cellcept will work as well as Tacrolimus without the same risks.

I spoke to Clyde this morning and she is feeling much better. She has a good appetite and has been getting out of bed to move around her hospital room. She reports some residual disconnect with her left foot but the doctors assure her that it is temporary. The location of the fluid build-up also lends itself to the idea that her left side will be the last to recover. She'll spend one more night in the hospital but should home in time to watch the Badgers kick some Hawkeye ass.

A word about Tom, Clyde's husband. That guy has been a rock star through this entire process. They celebrated there 16th anniversary yesterday. Given the circumstances of the day, I guess "celebrated" my be a bit of an overstatement. Clyde had been diagnosed five years before their wedding so they both have been living with her cancer for their entire relationship. He has been there for her at every turn. That cannot be easy for him. We don't envision marriges that include all the trials that go along with living with cancer. "In sickness or in health" has been his way of life since day one. We're very thankful for everything he has done for Clyde and often refer to his strength when things are up in the air. There is nothing we will ever be able to do for him that will reward him for all he has meant to Clyde and the rest of us. Thank you Tom.

So, the road to Clyde's recovery will not always be smooth. We have proof. Thankfully, this scare is a temporary one with no lasting effects. Let's hope they all work out this way.

Be well.

Wednesday, October 14, 2009

Update - Day 8

It's hard to believe that it's been eight days since Clyde's transplant, perhaps the only t-cell transplant in history chased by a bowl of chili. The reports I've gotten since, Clyde on Saturday, Bee on Monday and Rooch last night, are all resoundingly positive. Clyde has been to the clinic three times and each time has left with high marks.

On Wednesday, the day following the transplant, she was there for a dose of an immunosupression drug. She went again on Friday for a dose of Rituxin. Tuesday she was in for more immunosuppression and some potassium or magnesium or some letters off the Periodic Table. Apparently the immune suppressing drugs deplete some vital element tha can cause spasms in the muscles, in extreme cases to include the heart. Her levels were at the low end of normal but they supplemented just in case. Her blood counts have been low but where the medical team expects them to be. At this point, her white blood cell count is non-existent. Her hemoglobin is low, as are her platelettes but not to the point that she requires a transfusion.

Rooch told me last night that while tired, Clyde is feeling well. She reported that Clyde has gained some weight and is eating very well. It's a rare opportunity to able to brag about one's sister gaining weight and eating a lot. I guess that's one of the benefits of being this close to the procedure. Donate some t-cells, earn a license to discuss Clyde's eating habits. My guess is that this privilege will be revoked in the weeks to come.

I also understand that Clyde has been getting outside a bit for a walk around the block. For many of you that won't seem like a lot of exercise, but when you've been nearly two years in acute chemo, that's epic. She has always been an excellent athlete. We all remember her as an "All-City" basketball player in high school as well as the driveway H-O-R-S-E champion. My own obsession with fitness makes me glad to hear that she is using exercise as part of her recovery. Maybe now that she has some of my cells she'll take up triathalons.

As far as my own recovery goes, it's been fairly simple. As far as I can tell there have been only two side-effects.

Prior to the procedure I was completely consumed by the thought of what it would take place and what the consequences would be for Clyde. In that state, I managed to become completely unavailable emotionally from my wife Lindsay. I simply wasn't there to help her deal with the day-to-day demands of a family and small business let alone a marriage and friendship. Lindsay's birthday fell on the day that my blood was harvested and I made some serious mistakes around that. Side-effect one is needing to repair the damage caused by that. I'll start with this, Lindsay, I'm sorry.

The other side-effect is the let-down now that the process is done. For Clyde the process of the transplant is on-going and will last for months. For me it was about five days long and ended as we watched the transfusion disappear into Clyde's arm. "Ended" may be a strong word in this case as it lives on every time I see one of you that's been following this story and you ask how things are going. Please know that your interest is hugely appreciated. It reminds me of one of the more important events of my life.

For now, and hopefully forever, things are progressing beautifully. It sounds as though Clyde is getting stronger everyday. Today is day eight. Keep a good thought for day nine, ten, eleven...

Be well.

Thursday, October 8, 2009

So What Happened?

I'm aware that this post is a bit slow in coming but I think I've been trying to sort out the transplant day a bit.

We all arrived at the hospital at 8a as instructed by Clyde and her transplant team. She went in to the Infusion Center immediately for fluids. We were instructed to take turns visiting with her as the space is small and the schedule for the facility was very busy. Clyde's husband, Tom, was given a pass on the alternating but the rest of us, Rooch, Bee, Kay (our Mom) and Bill (our step-dad) and I went in and out while she got her fluids. The medical team also took a blood sample which is a routine done with such regularity that it's not even mentioned before it's done.

The "product" that had been collected from my blood the day before (Monday) was to have been seperated so some of it could be frozen for later use if necessary. The blood lab puts the cells through a process that accomodates for the fact that Clyde and I don't have the same blood type. They would also have bathed the cells to be frozen in plasma that was also seperated from my harvested blood. This keeps the blood's viscosity (slippery quality) for when it's needed.

In the meantime, the medical team was debating on whether they should split the harvested cells or give the entire bounty to her on this day. If I understand, the trade-offs at play here are effectiveness against the cancer versus the risk of Graft vs. Host Disease. The greater number of my cells given to her, the greater effect against the cancer but also the higher the risk of GvHD. Dr. Hamati, the transplant doctor, made the decision to give all the cells right away without freezing any. Given how closely our HLA (Human Leukocyte Antigens) matched, it seemed as though Dr. Hamati didn't consider GvHD to be as big a threat as it can be in some cases. With that, the lab's work on the "product" was reduced and the transplant proceded mush sooner.

Against the wishes of the clinic staff, we all crowded into the room where Clyde was set-up. Dr. Hamati took the little bag of blood product and hung it on the transfusion stand. Jan, the coordinator connected the bag to the lines permanently installed in Clyde's arm. When she opened the valve on the line, we all watched as the salmon colored fluid inched it's way towards Clyde's arm. I don't know how long that journey took but we were all completely focused on it. Finally, the "product" reached the needle in Clyde's arm and the process that cannot be un-done started.

The medical team stood with Clyde for ten to 15 minutes asking her questions about how she felt as the t-cells made their way into her system. Sometimes when a person gets the cells, there's a reaction the happens almost spontaneously. This is serious so the doctors were very careful to monitor Clyde's own perception of what was happening to her as the transfusion progressed. She reported no ill-effects. There were none. We all sat there joking, taking pictures and silently hoping that we were witnessing a miracle.

The whole "transplant", which was nothing more than a simple transfusion, took no more than an hour. It was almost anticlimactic. There was no "event". That was the god news. It was as uneventful as anyone could hope. The medical team was very pleased at how simple it went down. When the little bag was empty, Jan disconnected it and Clyde was free to leave. It was amazing.

Afterwords we did what all t-cell transplant patients do after the procedure, we went to the Laurel Tavern for a bowl of chili. It was unbelievable. Here was my sister, sick with lymphoma for 21 years, having had a t-cell transplant an hour ago, sitting in the Laurel eating chili. It was surreal.

Clyde went to the clinic on Wednesday for another round of Rituxin. Her blood counts were as expected-white counts very low and heading lower, red count and platelets holding their own. She feels tired but otherwise fine. She will avoid public places while her white cell counts recover but hopes to get outside. Her appointment schedule with the clinic is pretty full.

She started anti-rejection treatment on Sunday to ward off GvHD. The doctors monitor that very closely. It's important that some GvHD happens. That indicates that my cells are working against the lymphoma. The GvHD needs to be held in check however, so it doesn't attack and harm any vital organs. It's a very delicate balance. Clyde will be weaned off the immuno-suppression drugs in about a year if things go well.

The transplant itself didn't really solve any issues. What it did was put Clyde's recovery into nature's hands. We are again left to wait while the biology and chemistry of a t-cell transplant play out. We know that Clyde feels good right now. We know that t-cell transplants lead to complete remission about 60% of the time. We know that the path to recovery is not a straight line.

I'll keep you posted on Clyde's ups and downs on her road to recovery. Check back often. This story is far from over.

Be well.

Monday, October 5, 2009

Harvest Day

I gave my t-cells today. It took only 3 1/2 hours. For that, Clyde gets a shot at a cancer free existence. It seems like a small price to pay, as though we should have tried it years ago.

The opportunity is not without it's risks. "Graft vs. Host Disease" will be a factor. Not in a "maybe" sense but in a "how severe" sense. Clyde's immune system is so compromised that her body will not reject my cells. The problem comes from my cells attacking her body. That's how the cancer is defeated. My immune system which will be in her body ad will attack and kill the cancer. The medical team will use anti-rejection medications to control the combat between cells. Slowly, over time, Clyde will be weaned off the meds as my immune cells become hers.

Today was an easy process for me. We got to the hospital around 9a. Jan the coordinator met us at the Infusion Center and I had needles in my arm by 9:30a. It was a pleaseant surprise to have 3 of my 4 siblings sitting there with me for the morning. Bee came by to pick me up and Rooch and Clyde arrived at the hospital as the needles were being placed by Noreen, my blood harvest expert for the day. Needless to say, despite the tension intrinsic to procedures like this, we had a lot of laughs. Noreen was the wife of someone my older siblings new. There were stories to tell, social networks to compare and tongue-in-cheek insults to share with our new friend. It was a very supportive atmosphere.

The days leading up to today were exactly as they were described. I started with the Neupogen shots on Friday morning. We were staying at Margaret's (Lindsay's sister) house in Boulder. Before heading to the airport I gave myself a shot. It was no big deal. As predicted, bone pain was not far behind. It started in my sacrum. Within a few hours, my lower back had become very stiff and sore. The discomfort was well controlled with Advil. Friday evening, after a second shot, the pain extended to my sternum and ribs. Jan had warned me about this possibility. If she hadn't, I have been very concerned that I was having a heart attack. It surprised me that the bone pain I had been warned about would throb in concert with my pulse. Pain of that sort in your chest can be very unnerving. Jan's warning was of great comfort. By the time the shots were all administered, I had aches in my back, spine, ribs, sternum and head. Pain in the bones is caused by the bone marrow producing white blood cells at an accelerated rate in preparation for harvest. Now that the procedure is behind me, I'm asured that the bone pain will be gone in a day or two.

We had a get-together last night at Rooch's house. It was a casual party around dinner time for the purpose gathering the family and showing support for Clyde. She was so tired from three days of chemo that she was a non-player at the party. This morning at the hospital, Clyde was so weak that her medical team whisked her away for lab work. As it turned out, her red blood count and hemoglobin were very low. Shortly after I was finished, she received a transfusion. Rooch reported that afterwords, she looked and felt much better. Low blood counts are expected after several days of chemo but for things to go well, Clyde needs to be strong. She's fortunate to have a medical team that is so attentive to her well-being.

When we were done this afternoon, the medical team was very pleased with how things had gone. My white blood cell count was very high and the density of t-cells was also very good. We were also able to harvest an exceptional volume so some of the collected cells will be frozen for future use. All signs point to a successful transplant.

That transplant takes place tomorrow. Clyde will arrive at the hospital at 8a. We'll all be there to watch and support as the t-cells are transfused into her. After all the planning and preparation, the transplant will take about 30 minutes. From there, we're all counting on the chemistry and biology to go Clyde's way. I'll keep you posted. Keep a good thought.

I'm very tired after today so I'm not going to bother proofing tonight.

Be well.

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.

Friday, August 28, 2009

The Beginning of the End - The Word "Cure"

I chuckled a bit when the system wanted to check the name of this blog for availability. I know other people that have a sister named Clyde but they're all my siblings. At some point I'll get with the discussion about the name thing, but the subject of this blog isn't names.

This story, for me anyway, starts with a phone call to my apartment in Boulder, CO, in January of 1989. It was my Mom calling to inform me that my sister Clyde, Rae Ellen really, had been diagnosed with a form of non-Hodgkins Lymphoma. For most people that won't mean much beyond the knowledge that Lymphoma means cancer. In 1989, having grown up in the '60's and '70's, cancer meant death.

So the journey begins.

For me, the journey hasn't been all that involved. I live 1000 miles away. I haven't had several (read many) rounds of chemo. My hair has never fallen out. The journey has been all Clyde's. Twenty-one years of journey - that's a long time.

For family, it's been a gloriously long time. As many people are aware, when you're not a doctor or other qualified health-care provider, there's little you can do for a cancer patient. We're all deeply grateful that Clyde is still with us. Grateful that her will and fortitude have helped her endure all the un-pleasantries that go along with the label of "Cancer Survivor". Grateful that now, after 21 years (long or short depending on your perspective), the doctors treating her have mentioned the word "cure".

"The Beginning of the End" may seem an ominous title for a blog post about a sister with cancer but understand, this is not about the end for the sister. It's about the end for the sister's cancer.

Over the next month or so, a different approach is going to be employed to treat and ultimatley cure Clyde. I'll do my best to keep the world informed about the progress as we tread off into the previously unknown territory of t-cell transplants.

The writing won't be professional but the subject matter should be gripping.

Be well.