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.