Being There

A few weeks ago my friend Betsey lost her older brother. The death was sudden and unexpected. I don't know the exact cause of death but it was natural causes and in no way self-inflicted or drug related. As you can imagine, the shock to Betsey and her family was monumental. She disappeared from work to tend to the situation left by her brother's untimely demise.

When she returned to work it appeared as though it was going to be "business as usual." Betsey jumped back into her top-notch performance as a respected ski pro in the Vail Village Ski and Snowboard School, a job that is very demanding socially. She responded graciously to the well wishes of her co-workers and was strong and appreciative in the process. I too offered my condolences and tried to avoid any unsolicited advice based on my own recent experiences with losing a sibling. The scenario was that of death occurring, as it does, and life going on around it.

A few days ago, in the course of the "goings-on" around the ski school office, Betsey approached me. In a soft and obviously fragile voice she asked, "How long did it take you to get over it?" The question took me by surprise. Betsey is a tough Vermonter who spends her winters toughing it out on the slopes and her summers on hands and knees installing and maintaining landscaping. Such vulnerability was a rare display of human frailty.

The whole episode reminded me of how frail we can all be and how common the experience is of losing a loved one. The conversation that ensued after her inquiry raised more questions than it answered. We agreed that everyone's loss is unique to the relationship they shared with the deceased and that after losing someone close your life is changed forever. We spoke for only a few minutes but the shared vulnerability superseded the more formal nature of our working relationship. The tears that we both successfully held back acted as a medium for stripping away the typical boundaries that would stand between coworkers. Though painful the interaction was awesome.

I hope that in the future Betsey and I can be a resource for one another as we travel the path of life after loss. Perhaps by this example others will open up to people in their circle for support on loss or any circumstance that leaves them pondering how to cope with life's challenges.

There are many times in life when we seemingly can't do a thing for those around us beset by adversity. Being there for one another goes much further than we believe in those times. You can be very powerful in that way by both giving and receiving that support.

Be well.

Another Tough Lesson

The resources that I look to for spiritual development would point out that until you've done a good deed without the expectation of something in return, even verbal recognition, you haven't done a good deed at all. They would say, "One who hold himself up as good, in so doing loses the goodness."

This very concept has haunted me ever since I was identified as the match for Clyde's t-cell transplant. As happy as I was to donate the cells intended to make Clyde better, I hoped that by going through the process I would achieve some level of accomplishment that would designate me as one of "those people", capable of greatness and worthy of an elevated status. I fought that thinking but could in no way rid myself of it.

A recent event in my life indicates that perhaps I let my expectation of hero status leak out into my interactions with other people. This afternoon I had a friend tell me that I portrayed a sense of entitlement and arrogance in a meeting last Tuesday that in turn cost me an opportunity. While the feedback that was being provided hurt and led to extreme disappointment, I could understand what the source may have been. I had done all I could and still couldn't save Clyde. Her loss combined with my efforts to make her well allowed me to feel that I was owed something by the Universe.

The fact is that after Clyde's transplant and apparent recovery, I felt like I deserved a ticker-tape parade. I held my "good deed" up as though everyone around me should bow down for worship. For me, this behavior and attitude has been a source of great angst, even more so now.

The point of this post is not to solicit sympathy or praise from readers. Instead, it is my intention to share the lesson that I am trying to learn. The lesson is that you never establish "the type of person" you are. It's your duty to yourself and to those with whom you interact to earn your "goodness" everyday and with everybody.

Keep this in mind the next time you think you're owed something. Earn it every minute.

Be well.

Ride 4 Yellow - The Big day

Yesterday was a very big day. As many of you know I signed up to participate in the Ride 4 Yellow event in Steamboat Springs, CO. The event was a 25 mile mountain bike ride from the DuMont Lake Trailhead on Rabbit Ears Pass over Mount Werner and down to the top of Steamboat Resort's Gondola. The intent of the function was to raise money for the Lance Armstrong Foundation. Given my experiences with Clyde's cancer over the last few months combined with my affinity for riding bikes, this seemed a natural fit.

The appeal of participating was made event greater when I learned that Lance Armstrong himself would be riding along. That fact alone made the $100 entry fee and the commitment to raise $500 more seem paltry. I have admired Lance for many years, not only for his dominance of pro cycling but also for his unwavering diligence in raising awareness of cancer and the struggles of those afflicted with the disease.

In the weeks and days between enrollment and the actual event I was preoccupied with the possibility of meeting Mr. Armstrong. What would I say? How would I act? What would he say to me as a way of expressing his condolenses for Clyde's loss and in thanks for the money I'd raised? Would I embarrass myself on the ride?

Little did I know that the "experience" of the day would have nothing to do with any of those things.

Thanks to all of you and some who have never and will never see this blog, I was the third highest fundraiser. My total as of Sunday morning was $5,455.00. While in the grand scheme of the fight against cancer that may be a drop in the bucket, to the event organizers and me it is a massive total. Combined the riders, of which there were only 200, raised in the neighborhood of $240,000. If every community in America could do that we'd be talking serious money.

The knowledge that we had, collectively, raised that kind of money created a strong sense of community among the riders, most of whom were complete strangers at the start of the day. A bond was established by the understanding that we were a part of something special. Anyone that has held a fundraising event for the first time knows that generating large sums is next to impossible. We had done it. For me, knowing that my circle of family and friends had lead the pack in honor of Clyde is a source of great pride.

I went to Steamboat thinking that my story, Clyde's story, was very dramatic if not tragic. We were unique in the bond we shared and the loss my family had incurred. The Steamboat Pilot, the local newspaper, and the event organizers thought so as well. Each featured the story in the days before the ride (http://www.steamboatpilot.com/news/2010/aug/06/benefit-dollars-roll-steamboats-ride-4-yellow-even/). When I arrived on the day of the event I learned that nearly every rider participating had a similar story. Someone they knew and loved had been sick or died because of cancer. Several were themsleves cancer survivors. In a strange way this strengthened the sense of community even further. We were all working together to heal, give back and try to prevent others from suffering the same pain we'd all experienced. At the lunch that followed the ride there were close to 500 people, all of whom had experienced cancer in similar ways. This is a powerful realization. It gave a different meaning and purpose to the entire day

In the end, the the power of the day wasn't what I had anticipated. I never spoke to Lance let alone met him. I watched helplessly as he rode away from me in the first 100 yards of the ride and never saw him again. As for the ride, there were a couple of instances where I showed other riders, 10 to 15 years my junior, that a 48 year old guy on a 15 year old bike can still get the job done.

The meaning of the event was to strengthen the resolve of those participating by demonstrating that we have this enemy in common. Sure, Lance puts his name on it which gives the cause credibility but it's us, the riders, the community, that will eventually raise the money and awareness that will result in a cure.

Clyde was diagnosed 22 years before she died. In that time the technology of cancer treatment advanced by leaps and bounds. Each of those developments was driven and funded, at least in part, by people like you and me that have lost loved ones to the diseases we call cancer. The Livestrong message, if I understand it, is that we all need to take responsibility for getting to the cures.

Thanks again for you donating to this cause. It's impact is universal.

Be well.

Gaining Clarity, Feeling Better, Doing Something

If you've ever had a new car, you're aware of the phenomenon. Everywhere you look someone else is driving the same car you just bought. After you've had a child, everyone has a baby with them. This is a psychological process that has a name that I cannot recall. It's natural.

I'm going through a similar condition right now as I work through the loss of Clyde. It seems that there's a stage in a persons' grief process where everywhere you look, every song you here, something reminds you of the person you lost. I remember when a friend of mine lost his Mother to cancer. Nearly every conversation you had with him included a reference to his Mom. We noticed it as it happened but knew it was a part of his grief so we never said anything.

And so it is with me. I try not to verbalize each instance of this but it comes to mind many times a day. There's the car Clyde drove, here's a show she thought was funny, there's something on the menu Clyde would have ordered. I suppose it's one way in which her spirit lives on in us all.

Having talked to family in Madison recently, I understand that we're all finding our own way of working through this painful period. We have found outlets for remembering Clyde and filtering out the painful thinking while preserving the fond, loving memories.

In an attempt to turn my sorrow into action, I have decided to try to raise money and awareness for cancer patients and research. My first vehicle for this will be a combination of two things I now hold dearly. I will raise money by participating in a fundraising bike ride with the Lance Armstrong Foundation in Steamboat Colorado. The ride, August 8, will be short and social in nature but will provide me an opportunity to do something positive.

I'm going to ask you to participate with me by donating some money in Clyde's memory. Take a minute to visit my fundraising website at:

http://fundraising.livestrong.org/grassroots2010/mysisterclyde

The organization asks that I raise $500 for the cause. If I don't raise five times that amount I'll be very disappointed. I'm confident that you can contribute. I also know that donating 10%-20% more than you might have planned, when combined with the donations of others, will add up to a sizable contribution. Trust me, in the fight against cancer and in support of those that suffer from it, taking action can be very gratifying. I know this will help you feel great.

Thanks for taking the time to check this out. I'll let you know how the ride goes.

Be well.

A Part of the Human Condition

Since the beginning of humanity, every single person that has ever lived on this earth has suffered the loss of a loved one. Not some of us. Not most of us. Every person that has ever and will ever live has this in common. Maybe it was a member of your clan, your tribe, your family, a son or daughter, sibling, spouse, aunt, or whatever. Each one of us must suffer through the excruciating process of adjusting to life without someone dear.

As universal as the phenomenom is, as frequently and universally as it occurs it remains one of the most profound experiences of our existence. One cannot grasp the enormity of it all until they too have had direct contact with it.

As common as the loss of a loved one is, no two people share the exact same experience. In the case of Clyde's death, all of us that were close to her and those that knew about her but weren't close, live a loss unique to them. The sorrow my parents feel is different than the one Clyde's husband Tom is left to bear. Each of Clyde's siblings have their own vantage point from which to view this new reality. And the list goes on for everyone that knew and interacted with her.

It's been my experience that the uniqueness of my relationship with Clyde has made it even harder to bear the weight of losing her. It was me that was given the gift, the opportunity, the responsibility of being the donor of the t-cells that we all hoped would provide the recovery we dreamed about. When she passed, she had me in her on a cellular level. That is a special relationship to have with a person.

It may sound selfish but it is completely honest to say that Clyde's death was the end of a hope and dream for me. When the transplant was evolving in it's process I dreamed of a legacy in which I would be forever remembered as the one that gave Clyde her health back. It was a dream of hero status, the kind of thing that ticker-tape parades are made of. Instead, I will forever live with the phrase "you did your best but..." in the back of my mind.

Don't get me wrong. Having been able to provide hope for Clyde through cell donation is one of the high points of my life. I would do it again without hesitation. There are scant few actions one can take in an attempt to give a cancer patient their health back. That was one and I'd have done more if I could have. Still, with the transplant came a dream of having my existence on this planet validated as worthwhile and special. I hope it's not hard to imagine how that could happen. In the end it just wasn't to be. My dream of that dies with Clyde.

I've noticed that fewer readers are visiting this blog since Clyde's passing. It's my hope that those that do will find comfort in the lessons we're learning through this difficult time. I'm not done here. There is more to learn and share about this rich yet sad experience.

Be well.

Before Healing, Grief

I have started this post a thousand times. I wasn't able to finish it because I either dissolved into tears or feared that you would see through my need to be profound in this time of great pain. Either way, the post has gone unwritten for four weeks since Clyde passed away.

I still can't believe that's what's happened. Three months after the transplant, we all thought we had cancer beaten. Clyde was feeling great. There were no obvious signs of the disease. By all signs, the transplant had been a resounding success.

What wasn't apparent was that the enemy in our fight had changed forms. A rare occurrence in the fight against leukemia and lymphoma is a phenomenon called the Richter's transformation ( it occurs in about 8% of cases). This is when the disease literally changes form. In Clyde's case, the lymphoma changed from an indolent, slow growing, chronic form into one that was extremely virolent and aggresive. It attacked her spleen and liver and rendered her without energy and unable to combat the onslaught.

In the end, the fight was lost in two months. Twenty-two years of battle coming down to a change at a cellular level that proved too much, even for a warrior as tough and determined as Clyde.

As the cancer collected in Clyde's liver and spleen it was a source of great pain. The respective organs reside on the left and right of your stomach. The swelling of the organs made it almost impossible for Clyde to put anything into her stomach. The absence of nutrition contributed to her decreasing strength and energy. In the last several weeks she was very sick every day.

After having seen signs of a return to health it was very difficult to witness the decline. The major symptom that we all attached ourselves to was her red blood cell count. The report from each check-up was that of a declining RBC. On the days of the appointments we all waited for news of a turn-around. We belived that if her body would produce more red blood cells she would be alright. Unbenownst to us was that the lymphoma, in it's new, virolent form, was preventing her new marrow from doing it's job. We were losing her.

It's difficult to know the difference between hoping for a medical miracle and denial. The writing was on the wall yet we all waited for the clinic visit that would produce news of an unexplainable turn-around in her condition. For me, this lasted until the morning that Bob called me to say she had passed away.

It's been four weeks to the day. The pain of Cyde's passing ebbs and flows. I can go days where my thoughts focus on the gifts she gave me and the joys that comprised her life. Other days I can't work or focus. My siblings and parents are experiencing the same ups and downs. How can it be that Clyde is no longer here.

In the days and weeks to come it's my plan to lay out the thoughts and feelings that have dominated my existence in the last month. I know that there was meaning to the whole experience. It's my intense desire that there were lessons that will benefit those still living with lymphoma. I have a need to find the words that show my gratitude for the support you all have expressed. Thanks need to given to everyone that did all that was possible and available towards Clyde's treatment and recovery.

It would make sense that when the subject of a narrative dies that the story ends. The reality is that what we're going to get from Clyde in the physical realm has been defined. What we get from her in the mental, emotional and spiritual sense has only begun to play out. Please continue to read and help me understand the lessons and gifts with which Clyde has left us.

I'm going to have a good cry now.

Be well.

Rae Ellen Packard November 3, 1960 - May 14, 2010

Rae Ellen, my sister Clyde, passed away this morning from complications of the lymphoma she has suffered from and survived for the last 22 years. While our hearts are heavy with the loss, we are comforted knowing that she no longer suffers. We will continue to be inspired by the strength and determination she displayed in the face of her disease.

We all appreciate the love and support our community of friends and family have shown throughout this truly amazing journey. I promise to share the details of the last six weeks as soon as my heart and mind settle into the reality of Clyde's passing.

Be well.

"We need to get back out in front of the disease."

Boy, it's been awhile and there is a lot to tell about. It seems that the post-transplant road is not always smooth and makes many a twist and turn.

You'll remember that around 100 days post-transplant Clyde was living apparently cancer-free. We were all ecstatic and loving that Clyde was feeling well. She was going to work and going for walks. Life, it seemed, was returning to normal. Clyde was coaching me on how to live with the situation as it was. "You can't worry about the other shoe dropping," she would tell me. I was trying but not buying in completely.

A few weeks later, Clyde noticed a swollen lymph node in her groin and one in her neck. Swollen nodes are a classic symptom of lymphoma and other diseases. She tried not to panic but brought it to the attention of her transplant doctor at her next appointment.

Dr. Longo didn't freak out at what he observed during the visit. He reassured Clyde that there had been some latent lymphoma cells in her system that the transplant hadn't yet eliminated. In his words it was time to "unleash the beast" that is her new immune system. He took her off of tacrilimus, the immune suppressing drug, and cut her prednisone prescription way down. This was designed to ramp up the anti-cancer activity in her body.

A couple of weeks passed and though the swelling in her affected lymph nodes was reduced, Wally, as Clyde calls him (not to his face), was not satisfied. He ordered another full-body CAT scan.

After the scan was completed it was apparent that Cylde's spleen was quite enlarged. The spleen is, in effect, your largest lymph node. From the pictures, the medical team could see that something, likely lymphoma, was collecting in hers. Another course of action must be taken.

The next step in eliminating Clyde's lymphoma was to infuse her with more cells from me.

We weren't surprised by this. On the day in late September that I went for my lab work with Jan, she informed me of the possibility that one day I would be called back to Madison to deliver more cells. Dr. Hamati confirmed that on the day that Clyde got the t-cells. It turns out that close to 50% of t-cell transplant recipients go through this stage as well. There was nothing to be concerned about. It's routine.

All Clyde could do was wait. Dr. Longo put her on a cycle of Rituxin (a drug that targets only cancer cells) that would last four weeks. At that point I would swoop in, drop off some white blood cells and we'd all see what happened.

We don't know why but two things happened during this period. One, Clyde lost all energy. She would have to lay down for a while after taking a shower. She could do nothing which is very hard on your mental state. Not only had she been dealt a major set-back, she was bored out of her mind.

The second change was that she couldn't seem to produce or hold onto any red blood cells. Every week she would be transfused with between two and four units of red blood. It was an agonizing cycle with no good explaination or end in sight. It has been a grueling few weeks.

While Clyde's energy level continued to deteriorate, I was making travel plans for Madison. I made plans to fly home on the 1st of April and home on the 4th. As it turns out, I had the dates wrong. The hospital couldn't do the procedure then. No problem, I'll make a change. I was sure that when I explained the situation to the good people at Frontier Airlines, they would wave the change fee. It's interesting that as the airline industry flails, they counter it by making the experience of doing business with them as bad as possible. Their response, "NO!"

I arrived at the hospital on the morning of the 9th. The procedure was exactly the same as when the t-cells were harvested but without the Neupogen to promote white blood cell growth in my body. The target this time around was mature lymphocytes, the cells that fight disease and infection. I was connected to the apheresis machine by 9a and the process was over before 1p. Nothing to it.

Samples of my blood were sent to the lab to confirm that I do not have hepatitus or HIV. This gave Clyde a few days to recover a bit from the Rituxin. On Friday the 16th, she was infused with 54ml of the harvested cells. She'll receive another dose in a month or so and maybe a third dose a month after that. We'll wait about ten days to see if there is any effect from the first dose. Neither Clyde or I know what the signs will be but it ten days we'll see them.

The first good news in weeks was delivered that morning as well. For the first time in ages, Clyde did not "need" a transfusion. Her red blood cell levels were within the acceptable range. She was given a choice to get some cells or not. She took them.

Clyde has her first doctors' appointment since the treatment tomorrow. I don't know what she'll learn about the activity of the new cells but she will get news on her RBC levels. I'll let you know what she learns.

In a way it feels like we've started over. Any positive vibe you can send out into the universe will be greatly appreciated.

Be well.

Return to a Positive Mind-frame

I spoke to Clyde this morning. It always makes me feel better when I do. Her strength and ability to appreciate the "here and now" are reassuring. I hope that someday, I too will have that quality of spirit. After we discussed her recent Rituxin treatment, we laughed hard about life. The strength provided by the knowledge that we're fighting this together is profound. I feel like we share a remarkable bond.

I made my flight arrangements for my next voyage back to Madison. This trip, I will provide lymphocytes that will be transfused into Clyde. The medical team will use the same blood separating process that was employed the first go-around. The procedure, called apheresis, will take blood out of one arm, separate the needed cells and then replace the blood in my other arm. It takes about three and a half hours but is not painful. The harvested blood cells are supposed to "jump-start" the anti-cancer effects of Clyde's new immune system. When I spoke to Jan, the transplant coordinator, yesterday she confirmed that around 50% of t-cell transplant patients get this form of booster shot. To use her language, it will help us "get out in front" of the disease again.

I think I finally realized the angst I was feeling about Clyde's current condition was more about me than it was her health. I'm aware of how selfish that sounds but it's completely honest. The reality is that I was ready to be the hero. I wanted to be the person that cured Clyde's cancer. Yeah, that sounds a bit sick but it's the truth. It is unbelievably gratifying to think that you've been able to do that for another human being. The fact that we're having to go back and do remedial work felt like a defeat.

I asked Jan point blank if we should consider the transplant process a failure and she insisted that it wasn't. Remember her language, "we just need to get out in front" of the disease. Fifty percent of patients get additional cells and that lasting remission is a real possibility. Right now the lymphoma has gained some ground but the fight is not over. We are going to win.

When my kids are going to an audition or competition, I remind them that they cannot make the judges pick them as the winner. All they can do is their best. What happens after that is in someone else's hands. I need to remind myself of that as well. All I can do, all the medical team can do, is our best. Nature, chemistry and biology will take it from there. Fortunately, the medical technology and expertise are on our side. Add that to Clyde's positive outlook and I feel good about our chances.

I'm looking forward to going back and contributing again to Clyde's return to good health. I'm confident that this next step will help us get to the tipping point. With my cells and Clyde's strength I don't see how we can be denied.

Thank you again for your support and good wishes. The energy created will help Clyde get to the state of good health she deserves.

Be well.

So, You Thought It Was Over

It would seem a logical conclusion that all is well since there haven't been any new posts in over a month. Unfortunately, that isn't exactly the case. Clyde is doing well to be sure but complications are still lurking about.

A short while ago Clyde had a full-body CAT scan that showed no traces of cancer. As you'll recall, that left us all dizzy with excitement. In the weeks that followed, however, Clyde began to feel lymph nodes that were growing as lymphoma cells collected in them. While typical for someone in Clyde's stage of a t-cell transplant, we were all taken by surprise. This was the first negative news of the entire procedure.

Clyde's doctor was not at all alarmed by the emergence of the lymph nodes. He had mentioned to Clyde and Tom that some cancer cells likely remained. His response was to, as he put it, "unleash the beast." "The beast", in this case, are the new immune cells that Clyde's body is making since having grown bone marrow genetically identical to mine.

To this point she had been taking a drug call Tacrolimus. This medication prevented her new immune system from "rejecting" her body in a condition called Graft versus Host Disease. By preventing GvHD, the Tacrolimus also slowed her new immunity from attacking remaining cancer cells. In the presence of lymphoma symptoms, the newly acquired immune system has to be put into action, GvHD be damned.

The Tacrolimus was put on the shelf with the thought that Clyde would then kill the cancer cells on her own. Follow-up doctor visits showed some progress against the swollen lymph nodes but it was decided that another full-body CAT scan was in order. In the meantime, Clyde was given several transfusions of red blood cells as those counts fluctuated wildly, a by-product of the new immune system working.

The CAT scan was today. Some of her lymph nodes appear to be slightly enlarged but there weren't any that were alarming. The one symptom of note is that Clyde's spleen is considerably larger than it should be. Her doctor, while not panicked, is treating this as something that requires attention soon.

Tomorrow, Clyde is having another transfusion of red blood cells as well as a dose of Rituxin, a monoclonal antibody that attacks cancer cells without harming normal cells. Additionally, I will be flying to Madison sometime in the next ten days or so to provide some supplemental blood cells. Those will be transfused into Clyde to "jump start" her own anti-cancer immune response. Dr. Longo assures Clyde that 50% of t-cell transplant patients receive additional cells at some point. This step could be considered routine.

Clyde describes this new turn of events as a "kick in the gut" but remains positive about the outcome. "This is how it is" she reminds me. With that, we're both able to resolve ourselves to the task of kicking some cancer butt. With help from all of you in the form of positive vibes, thoughts and prayers, Clyde will be back on the trail of good news and improving health soon.

I promise to keep everyone posted on how this new chapter plays out. In the meantime, keep a positive thought.

Be well.

I Get Coached by Clyde

In my most recent posts, I have decribed how hard it is for me to be over-joyed with the news that Clyde, at the moment, is living cancer free. Don't get me wrong. Clyde's current health is thrilling news but I can't help but look "over my shoulder" waiting for Doctor Longo to drop the bomb that the whole procedure was for naught.

In the last week or so I've been starting to see the light. The fact is that people living with cancer have to possess a different mind-set. No one can describe the thinking better than someone that's lived with it for more than two decades. What follows is an email I received from Clyde a couple of days ago. This pretty much says it.


Hey Chard

I just read your most recent post last night. . .whether you
know it or not, what you have described (if I may be so bold) is the
feeling that every cancer patient feels every day after being diagnosed
with the disease. There's always the sinking feeling of "when is the
other shoe going to drop?" I've felt that way since 1988. But, what I've
also learned since 1988 is that you don't look forward and you certainly
don't look back. Each day is its own and needs to be seen that way. I
know that's easy to say but you really need to believe it, or the cancer
has won.

There is an incredible loss of control that the disease brings on.
However, no matter what you're doing in life you always have a choice. The
options may not be good but you can still answer every question with a yes
or no. Even cancer can't take that away from you. So what's the answer?
I've decided to accept the fact that I can't control the disease. If the
doctors could tell me to use a certain shampoo (let's pretend I have
hair), don't eat certain foods, walk a mile every day or anything else to
avoid a relapse I'd be all over it. But they can't. So my options are to
dwell in self-pity or live the day. Seems like the choice is pretty easy
to me. I'm not saying that every day I wake up in a fabulous mood, laugh
all day, have the ability to do whatever I want, whenever I want or
anything else so corny, but I can't (and won't) sit back and wait to die.

Next Tuesday Dr. Longo may not have good news to share. If that's the
case, we'll deal with it. We'd listen to the options and say yes or no.
It's funny that when the news is good we have a tendency to worry about
when the bad news is coming, but when the news is bad we don't
automatically wonder when the good news is imminent.

I'm afraid you've entered the "world of cancer" by your incredible
participation. It's a dark, scary place. Don't get lost in it. We've
won and will continue to win. Believe it.

Clyde


Wow.

Be well.

It's Sinking In

It's been a couple of weeks since we got the news that Clyde's tests had indicated that she was beating the cancer. After so many years with the disease it was almost surreal to have a clear CAT scan. Lymphoma, if I understand it correctly, is caused when the bone marrow creates white blood cells that are mutated. Those mutant cells collect in the lymph system and other organs. These collection sites become swollen to the point that they are noticed by the patient. A CAT scan clearly "sees" these sites. I don't think Clyde has had a clear scan in almost five years. That is, until a couple of weeks ago.

So the news is all very positive and we should all be ecstatic. The impression I get is that Clyde's mental state is just that. My reaction however, has been considerably more reserved. As the cell donor, obviously, I am very close to the situation. I too should be ecstatic but I haven't been, and I find that enormously troubling. After all, I can cure cancer, right?

Therein lies the rub. To think that we have "cured" anything seems arrogant to me. At the moment, Clyde is showing no signs of the lymphoma that she's carried around all these years. Still, a part of me needs a finish line, someone telling me that the game is over and we have won. The reality is that I know that declaration of victory doesn't exist in these situations. Sure, we have the lead at the moment, a big one at that, but we're up against a formidable opponent with an impressive win record. Part of me will need to stand guard for a long time.

T-cell transplant recipients that are cancer free after five years have a fifty-percent chance of being cancer free for the rest of their days. The strength of Clyde's character and the manner in which she has responded to treatment since being diagnosed leads me to believe that her battle with cancer is probably behind her. I want to believe that we have, in fact, won.

My happiness, as it relates to Clyde's disease, will come from acceptance. The facts that I must come to accept are that my blood has helped Clyde become cancer free today. The key word here is "today." We don't know where this is going to go tomorrow, next week or next year. What we have is a clean bill of health today. That needs to be enough.

Going into this procedure there were a mountain of risks and what-ifs. Clyde has overcome or avoided nearly all of them. Her medical team refers to her progress as "remarkable." Everything about her is remarkable if you ask me. Tonight she feels and looks great. She's excited about the possibilities that a cancer-free life holds for her. It's likely that her life expectancy has been greatly increased. Will the lymphoma return? Maybe, but today it's looking at our backs and we're pulling away. Today, we're in the lead. That needs to be enough.

Be well.

Remarkable

It's time to write the post I've been dreaming about for months and I don't know what to say. As many of you know, Clyde had a complete work-up today at the clinic. The medical team was looking very closely in an attempt to discover how the transplant was doing in the fight against Clyde's lymphoma. In addition to the usual blood work, the plan was to do a total body CAT scan and compare the results to CAT scans taken before the transplant. In the scan the doctors can see the extent to which the lymphoma is causing swelling in lymph nodes, the spleen, the liver and the kidneys. The greater the swelling, the greater the cancer involvement.

When Dr. Longo came into the exam room to discuss test results, he didn't want to talk about the blood test results. He wanted to share with Clyde that the CAT scan results were completely, absolutely, normal. All the lymph nodes, the spleen, the liver that had been swollen with cancer cells were now normal in size. There are no signs of lymphoma. As far as Clyde's doctors are concerned, the transplant is, at the moment, kicking some cancer ass.

If you're reading this and sensing an absence of enthusiasm it's because none of us really know what to feel about this news. Nobody seems to have the language to express the joy we're all feeling about the fact that it appears that Clyde has her health back. What do you say when someone thanks you for helping her feel better than she's felt in two and a half years? What would your reaction be if you were a parent learning that your child now has a chance at a normal life without reliance on chemo for a marginal existence. Put yourself in the shoes of anyone close to Clyde and the enormity of this news becomes almost overwhelming.

In the days to come I hope that I'll get my head around the miraculous success we're experiencing. I apologize for the scattered nature of this post. In the meantime know that Clyde appears to be cancer free and that your positive thoughts and prayers played a major role.

Send Clyde a note on her Facebook page at

www.facebook.com/home.php#/profile.php?id=1136971466 (copy the address and paste into your browser)

I know she'll appreciate hearing from you.

Be well.

Think Positive Thoughts...Please

Tomorrow Clyde will have a complete health evaluation that will tell us how the transplant is working against the lymphoma. Though anxious, Clyde is excited to hear that her new immune system is winning the battle she's been fighting since 1988. The testing will take all day but I will update as soon as I hear from her.

Over night, please put all of your positive energy out there to help Clyde get the news that there are no remaining signs of her cancer.

Tomorrow is a big day for "Team Clyde." All of the well-wishes you have offered over the last few months have made you a part of that team. We're about to learn that we are winning.

Be well.

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.

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.

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.

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.

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.

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.