Broken

Leah enjoying life!

Nothing can prepare you for the death of your soul mate, nothing. The loss of Leah has been completely devastating, and my heart is broken. For some reason, I thought that perhaps I was more prepared for Leah’s death as I’ve been mourning for quite a while now, but to watch her take her last breath, took me out.

Cali and I have spent the last week and a half, working through the intense grief, that apparently is supposed to get easier to deal with as time goes on, but will always be a part of your being. We spent last Saturday evening with Lindsey and Rosa, on the train for dinner, finding ourselves in tears most of the trip as we so desperately miss Leah. I didn’t know it was possible to cry so much, but it is and Cali and I share our tears freely. We both look forward to the day when we begin to remember all of the good times, and not so much of the past 17-months.

Our home feels empty now, somewhat larger than I remember, more like a shell, devoid of the laughter, fun, and conversation we so enjoyed as a tight knit family. I don’t know if I can stay here or what’s in my future. I know that in order to move on and stay healthy, I will need to make a life change. Don’t know what that is right now, but soon I’m sure a path will appear before me, and I’ll take it.

I met Leah the first day of college at Fort Lewis and fell madly in love with her and knew immediately that she was the person I wanted to spend the rest of my life with at that very moment. We shared everything and loved each other passionately.

For some strange reason, I remember the day just prior to graduating from college, we decided to travel the world and living life a bit backward, going against the societal norm of finding a career and settling down, knowing that life is indeed short. And travel we did, at high speed, throwing caution to the wind, enjoying each and every new experience along the way.

Leah and I basically grew up together from the age of 18. She was always game for adventure, whether it was embarking on our first bicycle tour from Germany to Greece, covering some 3,200 miles, or planning flights to far away places with Cali in tow, Leah sitting “left seat” as trusty navigator, always enjoying the journey. We did everything together as a family, loving every moment, taking nothing for granted.

I look back now at our last bicycle tour from Germany to Venice, Italy just two summers ago, Leah happy and healthy. We remembered it as our favorite. It was the culmination of a life spent together as a family, watching Cali as she overcame her fears of cycling on her own, carrying her own gear, making decisions, meeting interesting people along the way, enjoying life and our time together. Leah and I remarked after the trip, that we now felt comfortable sending Cali off into the world alone, and that she was very capable of not only surviving, but thriving anywhere she wanted to travel.

Leah and I experienced some heartbreaking moments together during the last few days she was alive. We talked about how much we loved each other and how incredibly sad it was that we were so inseparable, so in love, that in fact death was the only thing that was ultimately going to end such a fortunate, passionate relationship. Leah told me just a couple weeks prior to her death that “she was now suffering.” We were enjoying the view of Lake Dillon together when she voiced this, and I remember thinking that I would have been complaining a heck of a lot sooner than this! Leah never complained, handling her disease with the same grace and courage in which she lived life each and every day.

Leah and I spoke freely of her dying, what she wanted in terms of a “celebration of life,” where she wished her ashes spread, how she wished Cali and I, along with her parents, friends and family, to continue on and to find happiness once again. Originally, we were going to ask our favorite pastor, Rich Mayfield to speak, but found that he now lives in California. I always enjoyed listening to Rich’s sermons as he was more a professor of Sociology than pastor of religion Since this wasn’t a possibility, Leah asked me to put together what she wished to be a party, as she didn’t want more tears shed, but instead wished family and friends to enjoy the day together, to remember her for her spirit and love of life. She asked if I would speak, so I will work to find the right words, peppered with the humor she was forced to live with, knowing that it is impossible to recount Leah’s life and passion in such a short time. I don’t know if it will be possible to hold it together, but believe I will find the positive energy through friends and family to get through the day, hopefully with the same grace that was Leah.

Here is Leah’s favorite passage from Rich Mayfield’s book Reconstructing Christianity which sums up her Christian belief:

“I have long advocated that the only understanding of heaven that I can fathom is a         heaven where everyone is there… Christian, Jew, Muslim, Buddhist, Agnostic, Atheist, everyone. It is the only image that is in keeping with the teachings of Jesus. Two nice women came to see me some years ago, Bibles in hand, to convince me of the error of my ways. We talked for awhile and, I suppose, they finally decided I was hopeless. As they left one of these sweeties turned to me and said, “How sad it will be when we get to heaven and you won’t be there.” I replied, “It won’t be heaven unless I am there!” God’s love is for everyone or it isn’t for anyone. As far as I can tell, Jesus never played favorites. Neither should we.”

Leah’s obituary:

Leah Jean Ashby Greksa 48, was born in Golden, Colo. February 14, 1964 and died May 16, 2012 in Georgetown, Colo. due to complications of a bone marrow transplant, following a diagnosis of a rare form of non-Hodgkin’s lymphoma.

Mother to Cali, a freshman at CU Boulder, and married to Mark, with whom she co-owned the Royal Gorge Route Railroad in Canon City, Colo., she possessed a passion for family and adventure travel that served her well throughout her life. Leah also never took her health for granted and became an accomplished kayaker, rafter, cycler and runner.

She grew up in Golden in the railroading business; helping her parents, Lindsey and Rosa Ashby, operate tourist trains in Central City and Georgetown. In 1999, she and Mark launched the Royal Gorge Route Railroad and spent the following years growing it into one of the finest rail experiences in the nation. They worked as a team to implement a vision of fine dining and great service, all based on their experiences traveling the world. Leah always worked diligently to ensure passengers were made to feel special, just as she wished to be treated throughout her many travels. Her favorite spot on the train wasn’t in one of the dining cars, but out in the open-air car, talking to guests from around the world. To commemorate her warm spirit, passion for travel and love of the Royal Gorge, the Royal Gorge Route Railroad has named its newest open-air car after Leah — it’s called the Leah Jean.

Leah attended Fort Lewis College, where she met Mark. They fell in love their freshman year and after graduating in 1986, traveled the world by bicycle and backpack. Together, they racked up thousands of miles traversing European cities and countryside. Shortly after the birth of their daughter Cali, Leah began leading the family on expeditions through Europe, Thailand, New Zealand, and Australia. Throughout her life, she also loved to fly in the family’s small plane. As navigator, she helped guide them to destinations like Mexico, the Bahamas, the San Juan Islands, and many points in between. During her 16-month battle with cancer, she often remarked that she had lived more in her 48 years than most experience in several lifetimes.

Leah’s final wish was for Cali to live a life filled with a passion for adventure, fearing little, and embracing people of all lifestyles and beliefs, learning and loving, just as she did, and always valuing diversity.

Leah and her family thank the many fine health care workers and especially the BMT nurses at CBCI and PSL, along with Summit County doctor Tanja Britton who delivered compassionate care each and every day. They understood the devastation of disease and shared a similar definition of quality of life that, unfortunately, many oncologists ignore. Leah and her family would also like to thank so many friends who were there for them, providing emotional support along the way.

Leah is survived by her daughter Cali and husband Mark, Summit County residents, and parents Rosa and Lindsey Ashby, who live in Georgetown.

Friends and family are invited to celebrate Leah’s life at the A-Frame at Arapahoe Basin, June 2 at 3 p.m..

In lieu of flowers, the family kindly requests that donations be made to the Leukemia & Lymphoma Society or to a local hospice care facility.

More from the Summit Daily News

A Tribute to My Mother

Leah Jean Ashby-Greksa
February 14, 1964 – May 16, 2012 

 My mother died this morning at 2:15. Despite the immense amount of suffering my mom endured the past 16 months, her passing was as peaceful as my family could have hoped for. Her body slowly shut down and both my grandparents and my dad were there with me as my mom breathed one last time and then was gone.  Instead of giving her body to a stranger to transport to the funeral home, my dad and I took her to the funeral home and crematorium in Idaho Springs at 3:00 this morning. I found it surprising that not many people take their own loved ones to a crematory or funeral facility after death. Perhaps it is because we as a culture want to distance ourselves from death, to wipe our hands clean of it. Because death is not clean. But to me, taking my mom to the crematorium was important, and much more comforting than giving her up to a complete stranger.

Watching my mom die was the most difficult experience I have ever had. Not just the immediate death, but the entire process of the cancer treatments and complications. Nothing, not even 16 months, can prepare someone for the type of grief, the death of a mother, wife, or daughter brings. While in college, I was able to escape pain for a while, but my mom was never far from my mind. The last several months were extremely difficult because I watched my mom endure extreme mental and physical changes. At some points, I wished that she would be able to die and escape all of the pain she was in. I admire her so much because even though the disease had ravaged her body almost past the point of recognition, she never complained. My mom never asked why she had to be diagnosed with such a devastating disease. Instead, she dealt with it more gracefully than I believed possible. Her handling of her own situation was a testament to what a strong human being she was. She remained active throughout her chemo treatments, hiking, biking, and traveling as usual. Instead of bemoaning her diagnosis, she maintained a positive attitude and kept living.

This morning, after very little sleep, my grandparents and dad sat in the living room of my grandparent’s house in Georgetown and talked about what we all thought happens after death. Although brought up a Christian, a combination of my experience with my mother’s disease and death, meeting new people in college, and my own questioning has lead me down a different road in terms of faith and spirituality. I think that, as humans, we desperately want to believe that our lives have meaning and that we don’t just cease to exist after death. I used to have a conception of a heaven where people went after death. However, upon reflection, I think that people are too diverse for there to be a heaven. My perception of heaven could be a hell for someone else. I also disagree strongly (but respectfully) with the belief that only people of a certain faith go to heaven. I consider myself an agnostic, but if there were a God, why would a loving God damn good people simply because they choose to believe something else? At the end of the day, we’re all human. I think that instead of focusing on little differences in beliefs that tend to divide rather than unite people, we should focus on the universality of kindness. There were so many people who helped my family out during this difficult time. They were also all very different in terms of beliefs. These people were atheists, agnostics, Christians, Buddhists, Jews, and others. But in the end, they all shared a common trait of kindness. Kindness they showed to my mother and family. I think it’s important to bring the idea of religion up because it is a theme people think about in relation to death and illness. In the end, I believe that no one really knows what happens after we die. One thing is certain though. We all die. It’s part of life. And until we do, no one really knows what happens after we die. I’ve decided that I’m not worried about it. I do believe in souls, and I think that my mom is at peace somewhere. I like to think that instead of being in a type of heaven, that she is now part of the universe. Perhaps the energy that made up her soul is now part of a new life.  Ultimately, one way people can help my dad and I is to avoid telling us that my mom is in “a better place.” We loved her so much and she loved us. Leaving us was difficult for my mom as well as my dad and I. We were so lucky in the fact that we had such a tight family. Life is not going to be the same without her. My mother was always my best friend. Our family traveled and spent an incredible amount of time together. My mom loved life. To tell us that she is in a better place would belittle her existence on Earth and assume belief. Through experiences in life, I have learned that the most important thing we can do as humans is care for others no matter what and to not assume belief. My mother did have a strong faith, and my father and I both admire her for that.

It hasn’t even been 24 hours since my mom’s passing and I already miss her.  I loved her so much, and I will cherish every good memory I have of her (which are many). I want to say thank you to everyone who have helped my family. Your kindness was an immeasurable gift of which my mom, dad, and I all appreciated. My mom was an amazing, beautiful, happy, intelligent, and adventurous human being who will be greatly missed.

One of my mom’s wishes before she died was that we celebrate her life instead of mourn her death. In accordance with her wishes, we are holding a celebration of my mom’s life on June 2, at the A-frame building at the base of Arapahoe Basin, at 3:00 p.m. Family and friends are invited. Food, drinks, and stories are to be provided.

In lieu of flowers, please consider a donation to the Leukemia and Lymphoma Society or your local Hospice.

April 21st – Difficult Times

Leah, on 02 and on the way to Mesa, AZ

We’re now coming to the end of a long journey, filled with hope and despair, joy and sorrow, tears and laughter, all permanently sewn into the fabric of my being.

We were able to fly Leah to Mesa, AZ on March 23rdfor a week in the desert. It didn’t go without a bit of a hitch as when we were departing Boulder, climbing through 6,500 feet, I felt just a tiny vibration and low rumble, coming from somewhere outside the airplane. It wouldn’t have been a good day to crash, as Leah had been really looking forward to flying and not crashing, so did a 180 and made a precautionary landing back to Boulder. Cali and I hopped out of the plane, and as I was looking under the fuselage, Cali told me that I was “missing something off of one of the propellers.” She would make a good pilot! Turned out that one end of the prop on the left engine decided to shed a de-icing boot on departure, so the prop was out of balance. I called our mechanic, who told me that we were looking at 3-days before we could find a replacement. This wouldn’t work as we all wanted to get Leah out to AZ as quickly as possible. I decided to have the mechanic remove the boot from the other side of the spinner and voila, the propeller was now again in balance.

Removing the other boot from the prop.

It was as if the positive, smart, liberal (all of those words go together…) energy was just flowing from the CU campus into my brain. Or maybe it was that Fort Lewis education just finally kicking into gear… At any rate, trying to explain to Leah that we may have to wait for a replacement part wasn’t going to work. Her folks stood at the ready, just in case, but Leah was not going to drive out to Mesa, and made that quite clear! Even though I’m the pilot, she’s basically in charge…

Engineer Mountain

Leah sat in back of the plane, and Cali, my co-pilot for this trip sat in front, as we flew over the Flat Irons, Central Rockies, and directly over the heart of the San Juan Mountains. As the town of Silverton passed beneath us, I started a descent so Leah could enjoy a spectacular view of Engineer Mountain, which we had scaled just a couple of years ago. The day was perfect and Leah of course knew the names of all the peaks and where we were along the way. I just follow the GPS magenta line, waking up just minutes prior to landing. I’m still scared of heights.

During the trip, I noticed Leah’s GVHD (Graft Vs. Host Disease) continuing to worsen, her skin continuing to flake off everywhere, and the redness and edema a constant issue. The photopheresis (therapy to treat GVH by taking blood through a separation machine that removes and treats lymphocytes, then returning them to your blood stream) wasn’t working. The GVH was still keeping her gut from absorbing nutrients, and weight loss continued. Leah’s parents arrived Tuesday, and we all enjoyed our new place in Las Sendas, taking care of Leah. Even as temps approached 92, Leah was still so cold, due to the GVH. Cali and I managed to get her out on a short walk under the peaks of the Superstition Mountains, which she really enjoyed. It is absolutely devastating to watch my soul mate continue to decline, so wasted from the cancer, treatment, and now the GVH that can’t be controlled. Her mind is still working well, but her body just isn’t cooperating. Leah has GVH in her skin, gut, and lungs and it is severe.

We had our ups and downs during the trip as Leah fell and dislocated her hip while in Mesa, so off to the ER via ambulance we went. I was hoping that we would avoid seeing another hospital on the trip, but that wasn’t to be. She did fine after the dislocation was reduced, but ended-up dislocating it yet again on the drive home with her parents. We enjoyed our time together as a family with her parents, hanging out of the patio and taking in the desert views.

Last Thursday, Leah spiked a fever of 102, so we rushed to the ER at PSL. With the GVH worsening, any tiny bacteria can easily find its way into Leah’s system, and quickly multiply. When we arrived, her pulse oxygen levels went down into the 60’s, she was tachycardic with a pulse of 147, and respirations were almost 40. We spent almost 5-hours in the ER, with more chest x-rays, CT scans, IV antibiotics, and fluids. Leah didn’t know where she was or why we were back at the hospital.

We got her back into a room in the BMT wing at PSL yet again, where they worked to stabilize her. Knowing this disease, now graft vs. host, the last thing I want Leah to experience would be an awful, painful, heinous death. Our oncologist agreed that although we could continue this brutality of “treatment,” the writing was on the wall and the idea of hospice care was valid. Leah doesn’t want to see another hospital again, and just wanted to go home to Georgetown, where her parents have helped out so much, making Leah comfortable. So the decision was made to have in home hospice care available. Having been through the experience of losing my mom to cancer, and having the help of hospice, I know that these caring professionals provide a service that unfortunately, goes largely misunderstood. So many die painful deaths in hospitals and this service goes largely underutilized, as most don’t understand the role of hospice. The rule of thumb is that when life expectancy is 6-months or less, get hospice involved. We have much to learn from our European neighbors on “end of life care.”

Wednesday night, Leah and I had the extremely difficult conversation of what all of this really means. Unfortunately, the oncologist at PSL didn’t do the best job of explaining why Leah’s health continues to deteriorate, so Cali and I tried to explain, followed the next morning by a nurse practitioner that worked to help as well. Leah doesn’t remember the conversations, so I explained the hard facts of this awful disease that keeps her from absorbing nutrients, continues to deteriorate her skin, lungs and ravage her body. We talked about working to make her comfortable through the end, where she would like her ashes scattered, and how she wishes to be remembered. We talk about the fact that we both feel fortunate in that we’ve had the most wonderful 30-years together. More than most could ever hope for, but I tell her that I want more, as does she. We’ve seen so much together as a family in one lifetime, never losing our sense of adventure, always planning the next trip, enjoying our family, never taking our health for granted. The result has been nurturing our daughter who is fiercely independent, smart, caring, and who looks forward to traveling the world and bringing positive change to our society. Not too bad.

When I look back at this nightmare, I’m now angry. Not at anyone or anything in particular, just experiencing general furry. If I dig a little deeper into my emotions, the trigger I find is with our medical system. I’ll be brutally honest in that to me, Leah has suffered immeasurably (as has our family and friends) and since last July, there has been no quality of life that I can measure. None. I’m sorry, but to watch helplessly as Leah spent months in the hospital, taking countless pills each day, running back and forth to the clinic, hospital, having blood draws, constant transfusions, and becoming so fatigued that she spent many days in bed fails to qualify as a good “quality of life.” I do believe however, that when we find ourselves as the recipient of such a deadly disease, that our definition of quality changes, and we will cling to life perhaps, in any form. It’s easier to make a determination from the outside looking in, no doubt.

When I left the hospital and BMT unit last Monday, I spoke to one of the BMT nurses who had helped Leah over her many visits to PSL. She made some interesting comments that more families and patients considering these vicious transplants would benefit from hearing. She felt that the number of “survivors” of BMT’s was far less than even 20%, and of those that do survive, the quality of life is fraught with many complications of a life filled with the side effects of GVHD. Neither patient nor family members are prepared for what really lies ahead of them and most die a horrible death. I offered the suggestion of taking patients and families through these BMT wings of the hospital so all can see this reality prior to transplant, but she stated that this would “scare most potential candidates off.” She then commented that she often wondered, “why she continues to work as a BMT nurse as she didn’t believe in the program. “ I found the comment telling, as I sensed this from other fine BMT nurses during our time in the hospital as well.

It would be helpful to all involved with a potential transplant candidate to sit down and discusswhat “quality of life” means to the patient and their family, for it will change drastically. That’s a fact. I can say unequivocally and without hesitation that I would never consider an allogeneic stem cell transplant, ever. I would consider an autologous BMT (from my own cells) but that would be as far as I would go. At the end of the day, modern medicine fails the majority of BMT patients, as the doctors do not know enough about GVHD, how to control it, and when it will strike. I know enough now, that it appears that the folks at PSL are working hard to get as many patients signed up for these transplants in order to continue work toward finding better drugs to fight GVHD. Is this fair? Only if they do a better job of educating patients and their families, stating the brutal facts, honestly, and without bias.

Throughout this entire process, I worked to educate myself so I could better understand the cancer, treatment options, side effects, and probabilities of survival. I remained hopeful throughout the chemo process, but became less hopeful when Leah experienced both acute and chronic GVHD that was in the “severe” category. In order to manage your loved one’s care in our medical system, it is imperative that you understand what the heck is going on, question, and help to find solutions that may not coincide with a doctors plan, but will better help your spouse or loved one enjoy some sort of quality of life. At the end of the day, most doctors lack the time to talk about quality of life, as in the BMT world, you’re basically a lab experiment and if they could, they would hook you up to a ventilator, pump your body full of even more toxic chemicals, to demonstrate that they were able to keep you alive for x number of days, and attract more patients to the program. There’s no compassion and it pisses me off. However, the doctors are doing what they’ve been trained to do, at any cost, so perhaps it’s just a matter of better training in “end of life care” and “compassionate care.”

My last encounter on the way out the door at PSL Monday was with the psychiatrist/case worker that has worked as a mediator along the way and as our advocate. She’s thoughtful and has been a thoughtful ear on the other end of the line when I had so many questions and ideas that I thought would prove helpful to not only Leah’s care, but to other patients in the system. I asked her what she thought about our decision for hospice at this point. Her answer helped me feel a little better as she and her husband share similar life values as our family. She said that she would have made the same decision as she has been witness to awful deaths in the hospital, then had to deal with the emotional distress of family members for months down the road. As I thanked her for her help, her comment caused me reflect about the young man in the room next to Leah’s. His door was ajar when I left Leah’s room. I noticed him tethered to a ventilator, unconscious, with a maze of IV fluids and medications flowing throughout his body, three nurses attending to him in what looked to be a last ditch effort to save his life. His family waited outside in the lobby, visibly shaken, tired, talking about his end of life wishes. Just two-days prior I had seen him walking the halls with his wife hand in hand. He most likely will never make it home, but will die, a lab experiment, in a cold room, in the hospital, unconscious.

When I look back, I’ve forgotten how busy we were running to the clinic daily, the chemo pumps, blood work, transfusions, moving to Denver for 3-months, fighting for Leah’s survival, laying next to her in bed, listening to the chemo pump delivering toxic chemicals throughout her veins. If you truly love your spouse, this will absolutely tear you apart as you know these drugs are killing the good with the bad, and life will be forever changed and not for the better.One thing I could have done better, was to have asked for help earlier on in this process. If you are reading this as a BMT candidate, spouse, or caregiver, get help early on. I thought I could do it all, but it caused massive burnout and almost took me over the edge a few months ago. Fortunately, Leah’s parents offered to step in and help, which most likely saved my life as I began going down a very dark path. To watch your wife suffer through this process takes you places you don’t want to go. To see Leah’s parents endure this struggle is emotionally heart breaking as well, but they are strong individuals, who treasure time with their daughter.

Cali is struggling as well, and I never gave it a second thought as to educating her about the disease and the road we would be going down, trying to save her mom’s life. Our caseworker remarked as to how “well grounded” she was. She continues to do well at CU boulder, and will be with Leah and I this weekend. My sister flew out this week to spend time with us as well.

Friday, the 20th of April, I spent the day with Leah and got her into the car for a drive up Guanella Pass. She had been looking forward to it, and although tired, we so enjoyed the trip together. We cried together as we shared our feelings of just how much we loved each other, how this just flat out sucks, and how I was working on planning her memorial service of which she really wants a big party, celebrating her life. She asked me what my plans were and how she thought it important to take Cali away, perhaps to Spain, and work on healing together. I do very much want to run away and although have been grieving for quite a long time, am devastated by the thought of the finality of the death of my wife.Today, I walk with Cali on the trails outside our home in Dillon. We cry together, holding each other, and experience the healthy emotion of what is surely to be the imminent loss of a mother, wife, and best friend, so dear to us, and such a vital part of our lives. I try to ease Cali’s mind, explaining my emotions losing my mother and how I coped with loss. She wonders if she’ll ever be OK again, and how long she’ll be so emotionally torn? No real easy answer, but I know that she’ll be OK after time, will be stronger through this experience, and will be better able to help others perhaps with this life experience now a part of her being.

Leah seems to be very much at peace right now and tomorrow we’re going to breakfast to the Sunshine Cafe in Silverthorne, where some 24-years ago, we picked a date to get married.

Our friends and family have proved to be a lifeline for us during this time. I thank all of you for your continued support, taking my phone calls, listening to the rants, questions, and offering advice.

Thank you.

In and out of hospital yet again

Last Saturday, Leah was able to ride the train again. First time in over a year!

I noticed a nasty, fluid filled cough of which she dismissed. Unfortunately, Sunday morning she was complaining of fatigue and her cough worsening, so I made arrangements for readmitting her to the hospital yet again. Her pulse oxygen levels were dropping and blood pressure high, so called Cali so she could visit her mom at PSL as I was particularly worried about these symptoms.

They ended up performing a thoracentesis to drain over a liter of fluid from her lungs, which helped Leah to breathe better again. They also gave her two-rounds of Albumen and heavy doses of lasix in order to once again, get rid of the continual problem of edema in her abdomen, legs, ankles, feet, and now arms. More CT scans and fluid analysis. No lymphoma markers found in fluid, but they want to perform another bone marrow biopsy later next month.

Met with one of the docs yesterday as they found that Leah’s thyroid is in the tank, so introducing yet another medication to the mix of 17 other daily meds. No, it never ends.

Fortunately, Leah was released from the hospital, with influenza A, but feeling better with some of the reduction in fluid. The constant battle with ongoing edema is due to continued GVHD, which is causing malnutrition, low protein levels, and edema. Same thing we’ve been dealing with after 6-months, post transplant. Unbelievable.

Am flying into Boulder, CO tomorrow morning to pick-up both Leah and Cali then flying to Mesa, AZ to spend Cali’s spring break there together. Leah’s folks will join us next week as well. Leah’s excited to fly and enjoy our time together.

Am hoping we will be able to avoid trips to the hospital while in AZ!

Dark Cloud

I haven’t posted in over a month now as I have been struggling to find anything optimistic to communicate.

Leah had her feeding tube removed a few weeks ago, but then suffered another serious infection. With the help of some serious antibiotics, she fought off the infection and was released again from the hospital.

She continues to battle chronic Graft Vs Host disease, with swelling in her abdomen, legs, ankles, and feet. Due to all of the treatment, conditioning, full body irradiation, etc., it has had an impact on her mood and personality, which is expected with such an insult to the human body.

Leah has been staying with her parents in Georgetown as she is still too weak to get up on her own and requires a walker to get around. I do not have help in Dillon, so when Leah is with me for even a couple of days, I begin to simply self destruct working to cook, clean, and care for Leah, watching work pile-up and not being able to provide focus on our business or get outside and maintain some semblance of sanity. I can see the strain on Leah’s parents which is concerning as well. I’m working on getting round the clock professional care, so Leah can get back to our home in Dillon, but with much needed help.

My only source of being able to maintain focus mentally, has been what I’ve always done together with Leah, and that’s been getting outside each day to do a long run, Nordic ski, or bike ride in order to release the stress, and think clearly. I’m agnostic, so prayers don’t do much for me.

Trust me when I say that when something like this happens in your life, you will question the existence of a God, and certainly that of a “merciful, powerful, forgiving one.” I have more questions than answers and am most certainly going to Hell as told me by extended family… Apparently, I’m also not to be tolerant of other religious beliefs or sexual orientations… Don’t get me wrong, you get a lot of prayers going through this ordeal and not all by religious zealots. It’s the people that are quick to judge and don’t use their brain that absolutely freak me out. I do appreciate the thoughtfulness and prayers by our friends who have helped us out. It’s the thoughtless “I’ve been praying for you” that gets me thinking more deeply about the comment and religion behind it. Fortunately, I was never an alter boy… Leah is a believer, so continue the prayers in her direction.

We’ve been married now for almost 24-years and the number of times we’ve fought, I can count on one hand. We’ve had a wonderful life together. Chemo and stem cell transplants change everything, and we are struggling to hold everything together. This is no one’s fault, it is just a fact of going through something that is so emotionally stressful on so many levels, that you begin to come apart. I believe as humans, we’re only designed to take so much.

Unfortunately, being type A, I have little patience, and am used to being in control of just about everything. I believe this has been helpful in managing Leah’s care, being her advocate, while at the same time working to keep our family business thriving, staff employed, and my brain working. Slowing down is not a possibility as that’s who I am and slowing down will kill me.

What begins to deteriorate the human spirit is watching bad medicine destroy your soul mate, not knowing if she will live or die, and working to come to grips that in fact, no quality of life exists for either of you. This is the stuff that they don’t cover when you sign all of the “informed consent” paperwork, prior to transplant. The real stuff on how this will tear at every fiber of your being, taking you beyond what you may be capable of dealing with, constantly walking under a very dark cloud is the new norm for me. I find no joy in life anymore and am simply going through the motions.

I’m not alone as I read through case study after case study of families dealing with the emotional distress, dealing with life threatening disease and treatments. I am heartened now in that both caregivers of AITL patients and those with the disease are following this blog, working to gain a better insight on the disease from a caregiver/spouse’s perspective, some of the options available, and our life experience with this disease and now BMT’s.

After talking to nurses both at CBCI and PLS, none would choose a transplant, none. They’ve seen too much pain and suffering by patients and families that fall apart. The medicine has yet to be proven and they don’t have a clear enough path to properly address both acute and chronic GVH, which is what usually ends up killing the patients. That, and the fact that a disease like AITL, usually reappears, or patients develop secondary cancers that are incurable. There are a very few that survive, but are broken as human beings. The Graft Vs. Host disease is devastating.

I took Leah down to Denver for our weekly visit to see our oncologist last Wednesday. Our social worker/psychologist was in attendance as well, as we have been talking through many of the issues involving our case and my concerns for quite some time now. It was finally said, that Leah will never be the same and we’re going to have to come to grips with that reality. I have made it quite clear that our previous oncologist’s claims at the beginning of the process were outrageous and downright unfair. We had a pretty good idea that a complete loss of quality of life was a distinct possibility, but were told that Leah would be back running, biking, hiking, after this process, blah, blah, blah. Unfortunately, many patients are given this hope and offered the Kool-Aid.

Our current oncologist is more human and knows that we don’t appreciate the bullshit and that I’m pretty well read, knowing we’re on a slippery slope. He fstill wishes to be somewhat optimistic at this time, hedging that more infections loom, GVH could worsen, and we really don’t know if or when Leah will gain any strength. I appreciate his candor and remain a pessimist.

The chemo/transplant industry is hugely profitable and is growing at an astronomical rate. CBCI and PSL lose transplant patients each week, due to relapse and/or uncontrollable GVH. This is the stuff they don’t tell you pre-transplant.

Coming to grips with the fact that you are going to have to try and figure out how and if you can take care of your spouse in the short-term and possibly long-term, with the very likely possibility they may never fully recover is daunting to say the least. I take a bit of solace when speaking to the psych doc who tells me that I’ve done a pretty darned good job of coordinating Leah’s care, getting educated, and being thoughtful through the process. I know that some fall apart after just a short duration of a nightmare like this, but it doesn’t provide any relief.

If I was 90 years of age and quality of life for me was sitting on a couch all day, watching television with my spouse, this road perhaps would be more manageable. I’m 48, struggling to keep all the balls in the air, experiencing all of the emotions of guilt, sadness, and depression, that all caregivers go through and have now hit a wall, very hard.

Although I of course desperately wish Leah to recover, I know the odds are very much against us and both the physical and mental toll on Leah is debilitating to watch. She’s definitely tougher than I could ever hope to be, and battles on. Although I try to manage a smile while together, it’s more difficult.

Thank you to my friends who I’ve spoken with over the last few weeks as I struggle to get out from under a very dark cloud. Your thoughtful insight, care and listening helps me get through the day as we go into the 16th month dealing with this awful disease and associated treatment. To be honest, I don’t see a light at the end of this very long dark tunnel and am burning out. I’ve figured out that the best I can do is go along for the ride and continue to fight alongside Leah as long as she wishes to continue this journey.

I will continue to be a huge opponent of Allogeneic stem cell transplants and continue to urge people looking into this form of treatment to take the time to talk to patients and their families to get clear picture of what life will be like for all involved, if you so choose this path. Talk to a number of BMT nurses outside of the clinical setting. Take notice that you will not see a BMT nurse in the office with you when you sign your informed consent forms, just the BMT coordinator and your oncologist. We have never seen our BMT coordinator since transplant. Be brutal with them and ask the pertinent questions: Would you do a transplant? How do you define quality of life? What’s more important, quality or       quantity? How will my personality change? How will this impact my family? Will the clinic be involved with providing support for my spouse/caregiver? What if I’m left unable to care for myself, who will coordinate my round the clock care? Statistically, what are my chances of developing acute GVH? Chronic GVH? If there ever comes a point, will you have the balls to tell me when enough is enough and no matter how many drugs you give me, I will continue to suffer severe swelling, have to endure constant blood transfusion, visits to the hospital, feeding tubes and the like? How profitable is this process to your clinic and hospital?

So there it is in black and white, honesty.

Test results

Great news today as Leah’s Bone Marrow Biopsy and PET CT came back clean! A little stressful waiting for the results this week, but great news today! The folks at the Shaw Cancer Center were wonderful and have made arrangements for a hospital bed to be sent over to our home in Dillon, so Leah can get in and out of bed on her own. This will be a welcome tool for sure. 

We’re scheduled to see a different Oncologist Monday, so will discuss many issues and work to get answers on where we are with the GVHD and what we can do to work on helping Leah get some strength back. 

I’m sure Leah already e-mailed many of you the news. Thanks for checking in! Will take her to AZ next Thursday to enjoy some warmth! 

Many Questions

Many questions

I struggle in finding answers to questions that may not be answerable. 

What do I want?  Why continue to confront our good doctors, to ask the outcome of the unknown? Why challenge for a definition of what constitutes quality of life to an oncologist? Define compassionate care? Would you do a stem cell transplant?   

Would I recommend a stem cell transplant to someone now, knowing what I know in dealing with my wife’s struggle to regain some sort of quality of life? No. Absolutely and unequivocally, NO!

Ah, but that answer is much simpler to those who watch, and care for their loved one, as opposed to the human being faced with an aggressive disease, and a most certain death without a transplant, that also carries high risk of ultimately proving fatal. If you ask Leah, she is glad she gave it a shot and she is tougher than most humans I know. She amazes me with her continued spirit of living.

Quantity vs. quality. Number of breathes vs. the breaths that leave you breathless.

It’s an interesting dilemma in that the mere definition of “quality of life” means different things to different people. For some, perhaps just being able to breathe, lying in a bed, unable to walk freely about is quality. For others, this kind of state of being would be totally unacceptable, equating to true suffering, ultimately hoping for a quick end. I am having a tough time with this now as I desperately want Leah back to the way she was prior to having cancer. Oh, it’s not realistic and we blame no one, as life is random. You still dream.

Out of the hospital once again

On January 20th, I drove to Denver to help Leah with her discharge from the hospital. She had developed a rash from her GVHD (Graft Vs. Host Disease) since she has been tapering off the prednisone. It has become progressively worse and is now in her liver as well. We waited for nearly 4-hours, for the oncologist to make his or her rounds, pharmacy to give us the final list of all the medications Leah will be taking each day, and get the final OK to check-out. It takes forever and is quite disorganized, but at least they never tell you when to expect to actually leave the building… The way to get the system moving is to tell the nurses that indeed you are leaving with your wife and will sign paperwork later.

It sure would be nice if our oncologist (the doctor who is our primary) would perform the final evaluation, but this is simply not the case. Instead, it’s another oncologist from the same team. It’s a very screwed-up system and not even close to acceptable. I lost it when he told Leah that the rash had become pretty severe and that they were going to put her back on prednisone. I asked that we go outside Leah’s room, so I could have a word with he and the P.A., which didn’t happen. I then communicated to both he and the P.A. that “this stem cell transplant has been a fucking disaster” and that they have too many patients to keep track of in order to provide quality care.” I went on to explain that they really need to work on providing more than just paperwork for “informed consent,” but instead walk potential candidates and their families through these BMT wings so all can see patients on ventilators, feeding tubes, and the like, suffering through what is basically experimental medicine.

The response was “Leah is still alive.” True, but my response was “show me quality of life here folks.” I was and am furious. By why? We made our decision together, knowing the risks along with the remote possibility of some reward, but now having the value of hindsight need to work to find solutions to improve a broken system.

The ultimate question for anyone diagnosed with cancer that should be asked from a compassionate oncologist would be: “Would you rather have X-months, living a quality life, free of chemicals, clinic visits and hospitals, or would you rather have the remote possibility of a longer life, filled with pain, severe weight loss, feeding tubes, needle sticks, nausea, severe fatigue, and endless trips to the hospital?”

Am I glad Leah’s alive? Of course, but she’s not the same and it kills me to see her struggle. My wife is broken and the fine people at the cancer clinic will do everything in their power to continue to mix the Kool-Aid, hoping that most will continue to drink, never asking questions, or challenging the establishment, demanding better treatment, making all just a little bit uncomfortable.  

Just a Statistic?

In our eyes, Leah has become a “vital statistic” in the system as her cancer is so rare, and not many are still alive after two BMT’s. We believe this is why our primary oncologist still demands (for no apparent reason) to take trips to Denver, where we can wait for hours, then provided with a visit by the doctor, then drive back home.

I recently filed a complaint and “suggestion” letter to both CBCI and PSL as I had the opportunity to read our oncologist’s “doctor’s notes.” Leah and I were absolutely dumbfounded by what was dictated. Leah missed an appointment on January 25th and you would have though the sky had fallen. Leah had a long conversation with her oncologist and he basically said that we could lose his license if she failed to come down, then threatened us with a loss of our insurance, and that the blood tests we have done at home aren’t providing the correct information they need at the clinic! There was more, but won’t go into too much detail as my blood pressure rises when thinking about it. Anyway, on January 27th, in the clinic, I read through his notes from that phone conversation. It’s ugly. Basically, he made me out to be a person who was starving Leah! My friends who know me, probably would say the same, as my specialty entree is toast, right? But it’s really good toast…

 Turns out that he ripped both Leah and I for our decision to try and have a quality of life up in the mountains, and verbally attacked us in front of staff. Word gets around quickly, so I am going up the food chain and we are demanding a new oncologist. There is so much more at work here and I will share the letter at some point, but will have to remove the names to protect the guilty.

To be fair, I’m sure the docs are a bit frustrated at us for asking the difficult questions, challenging them along the way, and deciding on our own, what is best for Leah. As it turns out CBCI was acquired by PSL (hospital) as is happening across our country where hospitals are buying up clinics. We’ve watched good, compassionate nurses disappear, and have heard that indeed PSL is focused primarily on profit and urging the nursing staff to refrain from hugs and tears.

Certainly, as a nurse, you wouldn’t want to grab another human being that’s fighting cancer or recovering from a stem cell transplant, hold them tight, and perhaps shed a few tears afterward? Heck, that would be human, and would take a bit of time. Not profitable.

Still Feisty 

ImageLeah spent over a week with her parents in Georgetown, and then I had time with her at our home in Summit until last Saturday. She needs some help getting up and laying down, but is truly a stellarly (I believe George W. Bush used that term?) strong woman. I watch her take pictures with her I-Phone of the view out our window or of our home and start to cry. I love her so much and desperately want her healthy once more. She is in a good place right now and just so happy to be out of the hospital. She still tries to tell me what to do. I have been cooking for her like crazy and my latest specialty is soups. Cream of celery, asparagus, spinach, and feline (just kidding).

Desert Dreaming

I flew to Mesa, AZ where I put an offer on a home that just went under contract for us here in Las Sendas. Our dear friends, Lynn and Shirley have had us as guests in their home here, and we knew that this would be a great place to spend part of our winters. So, we’ll share a home part-time with Leah’s folks, and get out of Summit County, so Leah and family can enjoy some warm weather and a better place to heal! It’s an awesome place, quiet, backs National forest with a ton of mountain bike/hiking trails for all to enjoy. Most importantly, it has an amazing kitchen so I can cook my bread and make…Toast. Then I can starve my wife and her parents with… my toast.

A Long Diversion of 26.2…

I’ve been training for a marathon that is on February 19th here in Mesa, so ran what was supposed to be a long trail run today. Fell on a steep downhill, tore up my forearm pretty badly, had four stitches sewn into it (fortunately, it was “two-for-one-stitches-day”) at the urgent care clinic here in Mesa, and was on my way. Scraped my hands pretty badly, but will go on a long run (on the road instead) tomorrow. Am flying back this weekend after home inspections, etc. Will be taking Leah with me next week, as she will be stable enough to join me in Mesa, to be at the finish line for the run. It looks like our dear friend Cheryl is going to fly out from Dallas (no fault of her own, as she is originally from CO) and meet us as well. We’ll then hang out together and enjoy some warm weather and get her outside!

Best to everyone and thank you for your continued phone calls and visits to Leah. We are fortunate to have such caring friends. Love to All. Next Monday, I’ll be toasting bread again, so feel free to stop by for some gourmet toast. It has more calories than you would think…