Fare You Well

My wife, Marilyn Peters, a successful and respected trial attorney, was diagnosed with incurable, Stage IV stomach cancer in April 2014.  Marilyn possessed all of the best traits we can strive for as humans—she was moral, compassionate, passionate, smart, inquisitive, honest, adventurous, sensitive, caring and loving.  She was loyal to a fault to her family, friends and colleagues and was a mentor to and advocate for so many aspiring lawyers.  She was the ultimate extrovert and cared deeply about the lives of those around her.  She was never afraid to speak her mind and to fight against unfairness and hypocrisy.  Despite the devastating news, Marilyn determined to battle the disease and to carry on her life day-to-day with dignity and grace.  She continued to manage her career, enjoy every day with family and friends, care for her elderly mother, who died last December never knowing of Marilyn’s cancer, travel, ski, hike and practice yoga, while undergoing the debilitating treatments that cancer patients have to endure.  She did not wallow in self-pity—she knew many family, friends and colleagues who had cancer—some of whom survived and others who did not.  As a keen observer of everything going on around her, Marilyn saw the grim and anxious faces of the family and patients in the oncology waiting rooms awaiting fateful diagnoses or to be poked, prodded, scanned and poisoned in their efforts to battle this heinous disease.  She knew she was not alone or singled out.  

Our daughter, Sara, suggested that Marilyn write a blog of her experiences and Sara, a graphic designer, set it up.  I believe the blog was intended to be personal—therapeutic for Marilyn.  But soon I began to receive comments and emails from people who were reading her blog and remarking how honest, open, beautiful and inspirational it was and how much it impacted them emotionally.  

Marilyn passed away on August 20, 2015.  She dictated her last blog to her friend Judy the day before.  Marilyn was lucid and in control to the end and in many tearful conversations told friends and family how much she loved them and that she was no longer afraid to die.  None of us in her immediate family read her blog until after she died.  While this may sound corny to some, but in the case of God v. Marilyn A. Peters, and despite God’s immense advantage, Marilyn did not lose, but rather reached a mutually agreeable settlement.  Here is her blog.

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Alan Greene, Marilyn’s best friend and devoted husband and law partner for 34 years.  

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The Time Has Come

Although when I was diagnosed I knew it was likely I would be writing this post, I had hoped it would be sometime farther in the future.  That was not to be.  Yesterday, I learned that my treatment is not working, and that my cancer was progressing rapidly.  It was recommended that I be put into hospice to get ready for the end of my life.  Today, I did get set up with hospice.  Truthfully, the news did not surprise me.  I am going downhill fast every single day.  The speed at which I am declining is shocking.  In fact, the hospice nurse estimates that, at best, I have two weeks to live and maybe less.

The subtitle to this blog was “A sometimes rocky road to peace and wellness”. There are different ways to describe peace and wellness.  Most people probably see it as getting well and getting rid of the cancer and living without it.  That is what I hoped.  Another definition is to reach a point where the peace and wellness is knowing that your time has come.  That is where I am  right now.  Most of the peace and wellness I have reached is as a result of my dear family and friends that have always been there for me and continue to be.  Without them I could not have reached this point.  I have been surrounded by so much love.  That makes me a very lucky person even though I am going to die from this cancer.  How many people get to hear on a daily basis that they are loved.  Rarely does that happen.  Usually people die and people extol their life.  I have been able to hear it while still alive.  That has been a blessing.

Those of you who have followed my blog are constantly giving me words of encouragement.  And that has meant a lot to me, as well.  I have heard from so many people that the blog has been inspiring.  That makes me very happy.  For me, it was not only a form of therapy, but a way for me to honestly tell people what this journey is like.  I have tried to be absolutely honest in everything I have written.  So many times people who are dying of a terminal disease don’t talk about it and don’t tell you all of the dirty details.  That is not me.  I hope that my honesty has helped people understand what cancer patients go through as they fight advanced cancer.

Obviously, I expect this to be the last post, but I write with the help of my friend, Judy, who is typing it for me.  When you think of me, think of me as a warrior who fought a very hard fight and never gave up.  Think of me as someone who loved life, loved her family, loved her friends, and was surrounded by so much love that it has brought me peace and light.  I am not afraid of dying because I am not living.  Instead, I want all of those who love me to keep me in their hearts and remember me with joy.  I love you all.

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Dying By Inches

As I sit here today, I have had my second immunotheraphy treatment and have to wait until September 1 for the next treatment.  Although I have had two treatments, my symptoms keep getting worse.  Every day I wake up weaker than the day before.  Except for my emaciated chest and arms, every part of my body is now swelled to extremes.  While I wait to see if the treatment will work, the cancer is relentless and continues to advance and attack my body.  I cannot sleep.  I cannot get comfortable no matter what I do.  My only escape is when I doze.  I dream about being sedated for three weeks until my next treatment to escape what has become almost unbearable to me.  This has happened fairly quickly.  Alan looked at his credit card bill and only one month ago we went out to dinner. Since then, except for doctor visits we have not been anywhere.  It is somewhat hard to believe this is happening so quickly.  Frankly, based on how awful I feel, it seems forever since I felt even a little normal. What I do feel is that I am dying, agonizingly, by inches.  Every day I hope that I will at least stabilize.  So far, that has not happened.  Instead, every day I am a little worse.  I still shower and dress myself, but every day that becomes more challenging.  I am also so short of breath from the pressure of the swelling that even taking a few steps leaves me breathless. In the midst of this, I am also losing vision in my left eye.  I am supposed to see the eye doctor, but I feel this is just more of an insult.  The suffering from the cancer  seems to be enough without adding to it.

We obviously are hoping for a miracle with the immunotheraphy. If it does not work, however, I think I am out of options.  At my appointment Tuesday, the social worked talked to Alan and I about hospice.  She was not suggesting I go into it yet.  She was, instead, getting us ready to think about our options.  Alan and I have also discussed getting some personal help for me.  As a person who has always been strong, independent, and able to do what I put my mind to, it is a new experience to feel so helpless.  I no longer feel comfortable being alone.  Luckily between Alan and my kids and friends, I have not.

Knowing I had advanced cancer, I  knew there would be tough times.  I did not envision just how horrible this would be.  Of course, Dr. P told me the amount of fibers in my belly, which prevent drainage of all the liquid building up there, are among the worst he has seen.  Lucky me.  I did so well for so long, that this sudden onslaught has been somewhat a shock to me, my family and friends.  My plans for Napa, for going back to Utah, for returning to South Beach, are all on hold.  I hope to get well enough to return to Utah but I told Alan the other day that it was possible I would not see our house there again.  I am not being morbid, just realistic.

Alan and my kids are wonderful.   Their care for me is amazing. Alan never stops and he cries with me every day.  Sara and Alex have both cared for me, and both had to help me clean up after I got sick.  I have spoken to them about the reality of what I face, and how much I love them.  I watch their faces and the pain and stress they feel watching me suffer is almost too much to bear.

Every day I cry over this situation and the fact I am surviving, but not living.  The surviving is not fun.  My family and friends sense how bad things are, and I have had a constant stream of visitors.  Sometimes I doze while they talk.  Yesterday I slept for 30 minutes while my cousins Denise, Clarice and my friend, Jen, visited.  Other times, I am able to talk and their visits provide a welcome distraction.  My kitchen looks like a florist shop with all the flowers that have been sent or brought over.  Every day I receive a slew of cards encouraging me.  Every one I read reduces me to sobs. This is not a bad thing.  The love and care is constant. I talk to Deb and Judy every day.  I receive numerous texts and messages telling me to stay strong and that my friends love me.  Yesterday, my friend Danielle told me how important I was to her as she gently massaged my legs.  Diane has returned again and again and is my source for feta cheese, one of the few foods that taste good to me.  I wrote in the past that the love people express, the feelings they express to me, and their blanket of support, is a silver lining of cancer.  It does not take away the suffering, but it reminds me I am cherished.

I know this post is a dark one.  I felt I had to describe how it feels to be this sick.  This does not mean I am giving up and telling the cancer you win.  It just means I am realistic and want to convey just how difficult this struggle has become.  I refuse to say this is the last time I will post.  I refuse to say it is over.

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Love And Misery

It is hard for me to write this post because I am so weak and so miserable.   At the moment I am existing, not living, There is never a minute I feel anything but miserable, and some days I am also nauseated from day to night.  Two days ago was one of those days. I spent much of the day with my eyes closed, breathing in and out and trying, but not succeeding, not to get sick.  I have no appetite and little appeals to me. I force myself to eat and drink in order to survive but I do not enjoy it and each day it becomes more of a challenge. I look so thin, it is frightening, except, of course for my belly. My best description of my belly is Danny DeVito as the Penquin in Batman Two. It has even gotten to the point where I can barely concentrate to read.  My body is breaking down and I can feel it getting a bit worse every day.  Sleeping is a challenge.  At best, I doze off and on, feeling miserable in between.  At worst, like last night, I wake up coughing and then get sick even though there is little in my stomach and I cannot afford any loss of calories. How I feel is horrid and certainly makes me understand why people can lose their will to live. When living is agony every minute it is hard to remain upbeat and strong. When living is just counting off the minutes of the days, that is not living.

My next immunotherapy treatment is in a few days and I am determined to get it. I even arranged, the day before, to get hydrated at Karmanos because I know I am dehydrated from getting sick every day and because drinking is a challenge. I worry I will get too dehydrated or too ill to undergo the treatment, and I definitely intend to undergo it. Without treatment, it appears inevitable that my body will continue to break down until it stops working.  I could spend this whole post writing about how difficult this is and how much I am suffering but I refuse.  Instead, I want to talk about the love around me as I suffer.

My husband has been my main care giver.  Alan has barely worked the last couple weeks, but instead spent his time caring for me, feeding me and assuring me, when I say I am no companion, that he just wants me here and wants me to survive this.  The worry on his face is never gone but the love is in everything he does. We continue to cry together and he tries to tempt me with food.  He refuses to let me be alone, only going out when others are here. Alan is such a beautiful soul, and I want to survive and spend more time with him, living, not just existing.  His sleep is as bad as mine because he hears every time I am up or getting sick.  He calmly takes care of me and comforts me every time I cry, which happens a lot.

My kids have been wonderful, sending me texts that they love me and calling. Sara was here the other day when I got sick all over myself and in the bathroom.  She got me clean clothes, helped me strip and clean up, and helped clean the room.  I cried that she had to experience that.  When she left, she sent me a loving, encouraging text that made me cry.  Alex, of course, is always being a care giver like his dad and walks around with tears in his eyes as he looks at me.

My friends have been wonderful. Deb brings me a smoothie every morning and checks on me. Judy comes by just to watch over me.  They check in on me every day. Jackie checks in every day and comes to watch over me.  Then there are other friends.  My friend Karen, in Tucson, sends me an inspiring quote and then some memories of when we were young, every day. Dianne came over and read to me yesterday as I was suffering.  My e-mail is full of messages from people at work telling me they are praying for me and I am in their thoughts.  Joe and Laura came to visit and their love and concern was so apparent. Our Dallas office sent cards and flowers, as did Kelly in Dallas.  Nicole and Don sent flowers. Three women from my office, Christyn, Meg and Daniella, send a cooler filled with a week’s worth of food.  Ava sat with me while I simply closed my eyes and breathed. Kate brought me an inspiring book and Kathleen brought me tea and a smoothie.   In the meantime, Lynn is beside herself because she wants to do something for me.  At one point yesterday, Diane and Alan, Joel and Jackie, and Geri were all visiting.  The cards and flowers have been nonstop.  Today I opened about ten cards.  Each one made me cry. These are only some examples.

My family came over Wednesday and want to visit every week.  My aunt, uncle and cousins cried when they saw me, but their love and concern and their visit meant a lot. Clarice made me her pound cake, which she knows I love, Denise and my aunt and uncle brought meat and spinach pies and grape leaves. While I could not eat them, my family enjoyed it. Mary is coming today.  I suspect she will be shocked at how bad I am – she last saw me five weeks ago when I was doing a lot better. Then I drove to her mother’s with lunch and we enjoyed it together.   Today, driving anywhere is a pipe dream.

The love I have received has kept me going in the face of the agony I am feeling.  It has caused me to force myself to eat and drink and to fight back.  I hope that the next treatment starts providing some relief, so that I can live a little, eat more, stop losing weight, and can be aware and awake most of the day.  For all the love I have received, thank you all.

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Trying To Catch My Breath

What a difference a year makes. A year ago, Alan and I had just returned from a trip to Utah with his college friends and their spouses, celebrating their 60th birthdays. I was in Utah when I wrote a love letter to Alan on his birthday on this blog. At that time, the only symptoms I was experiencing were from the chemo. I could count on three horrible days on chemo and one day afterwards when I was totally exhausted, but then had ten good days to enjoy, with each day getting better. While the chemo was cumulative so that it took longer and longer to recover, I did recover each time. In Utah, that meant hiking, going into town, cooking, going out to dinner and fully enjoying ourselves. One year later, and I cannot imagine being able to travel to Utah, let alone do all the things we did last year. Now, I am experiencing bad symptoms from the cancer and am not able to do much other than hunker down and hope the immunotherapy works. I cannot imagine hiking. I cannot imagine going out to dinner. I can barely do yoga.

As I wrote in my last post, my belly is huge. It looks like I am nine months pregnant or more and is hard as a rock. My belly button is now an outie. The size is the result of two things – some liquid, but mostly a spiderweb of lympathic tissue surrounding my digestive system. This is apparently a common occurrence with advanced stage stomach cancer (and lung cancer). While my doctors have tried to drain the fluid to give me some relief, there is little they can get because most of it is trapped in little pockets of tissue and not worth poking me to drain and then opening me up for potential infection. My belly distends not only as far out as it can, but to the sides.  It causes constant discomfort, constant pressure and constant shortness of breath as it presses on my diaphragm. My breathing is mostly labored because of the pressure on my diaphragm. Some days are better than others, but there are days I can barely carry on a conversation.  No matter what, I sound breathless when I talk.  It is not easy to catch my breath.

There is no minute of any day where I am comfortable. The best I can do is distract myself. As a result, over the last week I have read one novel a day. I-books is getting a lot of business from me.

Nausea arrives every day, sometimes just at night and sometimes for most of the day. Along with the nausea has come vomiting, which, while not an every day occurrence, is occurring. Last night just as I got into the couch where I sleep sitting up, I had an overwhelming wave of nausea and immediately was sick. Not fun. It also is worrisome because over the past couple of weeks, I have had less and less appetite. I definitely have lost weight. My arms are scary skinny, as is my chest. Yet, I cannot eat too much at a time or I get acid reflux or get sick. Plus, very little appeals to me. I am someone who always loved good food.  Going to dinner or making a nice dinner was a big part of our social life. That is not happening now. I can eat very little solid food, with my best meal at breakfast where I can still get down toast and eggs and feta cheese. The rest of the day it is a struggle to eat. I have not had solid food for dinner for the last ten days, instead drinking Ensure or smoothies. The thought of chicken, fish, rice, or potatoes, turns my stomach. Thank god for smoothies and ice cream bars. For some reason, I can always eat an ice cream bar. I know I have to keep up my strength and so I force myself to eat even when I am not in the mood. Nothing much tastes good. Yesterday, I thought I wanted macaroni and cheese, but one bite made me super nauseated. I did not eat it and had a smoothie instead. It is also a challenge to drink water but I have to do better.

The discomfort gets worse as the day goes on. I am pretty much worthless from late afternoon on. On Alan’s birthday, which was Sunday, Alex and he cooked the birthday dinner and ate it without me while I had an Ensure sitting on the couch in my library. I did, however, have a gift for Alan – a new yoga mat I picked up the day before. I also feel like a slug – I am hardly moving around. I decided yesterday that no matter what, if I woke up okay this morning, I would go to yoga. I did. It was hard. I had to modify everything and at the end of the class the teacher and other students who know me were both hugging me and crying.  But, I did it, even with a lot of modifications, and I feel better that I moved my body today.

Its hard to say how much of this predated my treatment and how much is from the treatment. There is no question that I was experiencing many of the symptoms before the treatment last Tuesday. The treatment, however, has probably worsened them, including the nausea, vomiting, shortness of breath, coughing and lack of appetite, all of which are common side effects. If I think about it, and I try not to focus on this, I am miserable 24 hours/seven days a week right now.

The effect of this on my emotional state is not surprising. There have been a lot of tears, including between Alan and I, and in front my kids. I cry easily in front of friends, who cry with me. Alan and I have had a number of tearful conversations about my current state and the love we have so luckily shared these past 34 years (33 years of marriage and one year together before then.)  We have been lucky, and are still each other’s best friends, but that makes this that much harder. The tears I have cried are tears of frustration, tears of grieving for the way I want to live my life but cannot right now, tears for the stress this is causing my family and friends, tears for the life I may never have. Because there is not one minute of any day where I feel good, I have to try really hard not to give up. I will not, but this is certainly an immense challenge.

On Sunday, Alan sent an e-mail to his ski and college friends about me that I was not supposed to see. One of his friends, however, replied to Alan and copied me. It broke my heart.  All throughout the e-mail was nothing but his love of me and the suffering he is going through watching me suffer.  While reporting on my current state, he reminded them of the grim statistics for this type of cancer, statistics I refuse to let rule my life. He told them that we both had been very teary eyed the last couple of weeks, but despite that, I am fighting on and we have not lost hope. That is true, but the fight right now is as hard as it could be and the misery I feel is hard to bear. I continue to be blessed by the love and support of my family and friends.  Without them, I am not sure how I would be doing. For them, I will not give up.

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Fighting Fatalism

For the first time, in the past few weeks, I have been experiencing symptoms, not of my treatments, but of the cancer that is progressing while I wait for treatment.  Aside from the fact that my pregnancy belly continues to grow and is now pressing on my diaphragm, leaving me short of breath, I have been having almost daily bouts of nausea, some worse than others.  In some cases, the nausea has lasted rom morning to night, reminding of the lovely days I was on chemo last year.  Mostly, however, it has come late in the day, making my late afternoons or nights miserable.  This has limited what I can do.  Last weekend we cancelled dinner with Jackie and Joel on Friday night at a restaurant we really wanted to try because I was feeling too nauseated to go out, and then, on Saturday, after I got ready to attend my friend Joe’s annual summer party and met Deb and Norm for an early dinner before going to the party, instead, I barely ate dinner and Alan and I turned around and went home.  Since then, I have stayed away from making plans at night. Last night was an exception – I felt pretty good all day and agreed to meet Jackie and Joel for dinner.  Unfortunately, by the time we got to the restaurant I had full blown nausea and could barely sit there and eat.  I realized that, at least for now, I better make plans for lunch, not dinner.  When I feel that way, I hunker down, the couch is very inviting, and I try to be as still as possible.

This has also meant cancelling our trip to Napa and definitely nixing any plans to go to my nephew’s wedding in California.  At the moment, I am in no shape to be drinking wine and eating wonderful dinners, nor can I plan enjoying a night time wedding after the long travel to California.   That does not mean I will not be traveling later this year – I just have to start treatment and start feeling better so that I can count on being able to enjoy the trip.  This does mean that I am resentful at the limitations this is causing in my life. I am used to doing what I want and doing it even if I have discomfort.  Nausea is another thing.  It is debilitating.  It is impossible to enjoy anything or even concentrate much, when you are nauseated.

While this has been going on, I continued the waiting game.  Until yesterday, I had no confirmation when I would start immunotherapy.  We were still waiting to hear from the clinical trials’ sponsor.  On Tuesday, my worse day this week, when I woke up with nausea and went to bed with nausea, in my frustration I actually said to my friend Rena, when she said Karmanos still had not received confirmation that I could go forward with the clinical trial: “Don’t these f**** people realize people’s lives are at stake.  What is taking them so long!”  She told me to go ahead and express that frustration – she felt it too.  Then she suggested I speak with their social worker the next day to deal with the emotional toll this has taken.  The nice thing about that suggestion is that I ended up getting a free massage at Karmanos the next day as a result of the social worker.  That was heavenly.

The emotional toll of the waiting and the increasing symptom is huge. I have, and can, cry in an instant.  This comes from frustration, from anger, from just feeling crummy overall and from the delay, delay and more delay.  It does not take much to get me going.  I am certainly a very strong person but even the strongest person would be tested by these events.  On Monday, Alan and I sat on our couch holding each other and crying together. He is as frustrated as me, and also clearly so worried.  Every time he looks at my belly it reminds him the cancer is progressing.  He researches the reasons, and he knows that the fiberous tissue now growing like spiderwebs around my belly is a symptom of progressing stomach cancer.  I know that too.  I do not read the research, through, because I do not need to.  I can gauge what is happening by the way I feel.  He told me earlier this week that when we promised to love each other in sickness and in health, his thought was that I would take care of him and outlive him in our old age, not the opposite.  I told him I know, and I still plan on being around.

The biggest emotional toll on me has been fighting the sense of fatalism that can take over when I am clearly feeling limited, and not up to the physical strength I expect of myself.  Yes, I am doing yoga, but certainly at a slower and more modified level.  Yes, I take the dogs out, but the walks are short.  Yes, I meet friends for lunch most days and am fine, but I make no plans for long walks, and make no plans for anything approaching evening because I am not sure I can handle it.  I know that I have already beaten the odds with the advanced cancer I have, but that is not enough.  I want, and plan, to continue to beat the odds.  However, over the last few weeks, as I felt my symptoms increasing, I had to fight the feeling that this may be it, that I should not expect a long life, that I was fooling myself.  I thought about family, friends and colleagues I knew who had lost their battle with cancer.  My mother in law, Libby, was only 56 when she died, and was so full of life.  How I wish she had lived to see her grandchildren grow up.  My close friend Sue, whom I loved and whom my children loved, was a beautiful soul. Sue always had a smile for everyone, always saw the best in everyone, and told me every time she saw me that I was beautiful. I also remembered my colleagues and friends, Kathleen L., Dan S., Fred M.  They were vital people, full of life and had so much to give. They died too young.  I also thought of my sister in law Sue, who is one of the strongest persons I know. Sue has survived Hodgkins disease and breast cancer and is now dealing with heart problems caused by the treatment she had over 30 years ago for Hodgkins.  Her attitude, strength and ability to handle adversity are an inspiration to me.

It is funny how you can go into a dark place when you are feeling terrible, and helpless.  I refuse to stay in that dark place because it does me no good and does not help me survive.  Fatalism gets me nowhere.  I truly believe that if you believe that you are going to die within a certain period of time, that you have no chance and that those beliefs will come true.  I refuse to so believe.  I refuse to give in to that darkness.  There are no guarantees, but that goes both ways. The odds may be terrible, but I have beaten and will continue to beat the odds.  I will not concede that there is a specific time I am allotted and that is it.  Instead, even if I cannot plan going out at night right now, I will continue to live each day.  The treatment is starting and that has taken away most of the frustration I have felt.  Other than my now 8-9 months pregnant belly, I look fine, and I feel vital (except when I am miserable with nausea).  People who see me say they cannot tell there is anything going on with me and even as I modify greatly my yoga practice, I was told the other day by a newer student in my yoga class: “You must have been practicing yoga for a long time.”   She did not see me as limiting my practice.  She saw me as the long practicing yogi I am and have been.  So, instead of focusing on my limitations, I will focus on what I can do and will continue to do.

My plan is to go somewhere with Alan in a month or two where we can enjoy each other, to go to Utah at the beginning of September to hike and then at Christmas to ski, to go back to enjoying dinners with friends, and to go to South Beach, again, in February, with my daughter.  I also plan to spend time in Florida visiting Judy and Deb who will be there all February.  Fatalism has no place in my plan to live life.  I will not only survive, I will live and focus on the good in life.  Now, I plan to go outside and enjoy my garden and this beautiful afternoon.

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The Waiting Game

I have never been good at waiting.  Patience was never my strong suit.  While I have improved, it can frustrate me when things do not happen right away.  Part of this is because I act quickly if something needs to be done and have a hard time understanding why someone takes more time than they should, or delays what should get done right away.  Over the past couple of months (indeed for most of this year), I have been forced to wait – to wait to recuperate from the hospital, to wait for results of tests, to wait for a clinical trial to open and to wait for treatment to start again.  Since the beginning of the year, I have had only two chemo treatments, one in late April and one in early May. Before and after those treatments, I was in the hospital, first as a result of a severe reaction to the chemo maintenance drug I was on in January and then in late May when I had an obstruction.  It has now been almost two months since I got out of the hospital, and my treatment still has not started, and it is not slated to start until, likely, in another two weeks.  Most of this was due to a delay in the start date of the clinical trial in which I will be participating.  It was supposed to open in mid-June.  That did not happen.  Instead, it did not open until the end of June.  I learned, while questioning my team at Karmanos, that a clinical trial cannot open until the institution conducting it receives the drug.  Then, and only then, can the screening that always is necessary for the trial, start. Then, there is the delay while the screening occurs and the tests are evaluated. Finally, you wait to hear that you are in, and can be scheduled for treatment.   In the meantime, I spent time thinking and worrying about the fact that my treatment had not started, that in the last six months I have had only two chemo treatments, and that I want to move aggressively against this cancer.  This has clearly been an exercise in patience, and in the waiting game.

Dr. P and I agreed that my next course of treatment would be an immunotherapy trial taking place at Karmanos.   I have been told that the drug is very promising. It boosts your own immune system to target and fight the cancer.  It can be taken alone or with chemo drugs.  To qualify for this trial, I had to have yet another scan, another EKG, more lab tests and another biopsy.  Those were finally scheduled last week, starting the day after the trial officially opened.  I was not looking forward to more poking and prodding – at this point I have been poked, prodded, stuck with needles, have given more blood and spent more time in testing, than I ever imagined was possible.  I was especially unhappy about yet another biopsy because I had one in late April. This trial, however, required one within 14 days of starting treatment and would not agree to use my previously gathered tissue.  The testing took more time than I ever anticipated.  I spent six hours in the hospital on Tuesday, most of the time waiting between tests and to see the nurses and sign the consent for the trial.  By the time I left there, I was exhausted and totally nauseated because I had to drink the chemicals for the scan on a stomach that had had no food for seven hours.  Not good. The next day, for my biopsy, was actually a bit better.  Although I was surprised I was going to be sedated for it, because a number of samples were being taken, it made it go by fast.  The waiting in recovery was the longest part.  In all of this, I was most surprised when I was told that my treatment would likely not start until three weeks later, the week of July 20.  That upset me, not only because of the delay, but because, of course, that is the week Alan and I were scheduled to go to San Francisco and Napa with our friends Jackie and Joel and to, hopefully, go to my nephew’s wedding, if we could time it right with my treatment.  When we scheduled this, we thought we had plenty of time. The delays, however, took that time away.  We are now trying to move the trip.  The wedding does not look like it will happen.

The waiting has been an exercise in patience and, although I know that I cannot rush things by being impatient, that did not stop me, early on, from asking my team a number of times if the trial had opened yet.  They, too, were hoping it would open earlier. Once I learned that the trial would not open until late June, I accepted the fact that I had to let things take their course and just do what I needed to be ready. One lesson I learned from my yoga practice was to have more patience, because sometimes it took weeks or months to be able to do whatever new asana my yoga teacher had given me.  After I had meniscus surgery and after I broke a little toe, it took months before my practice was back to where it had been before those injuries, and I learned to be patient and mindful as I worked my way back.  I was never a patient person, but became more patient as a result of my practice. Now, I have had to put that to work when it came to the trial I was to be in.  Once I learned that the trial would not open when planned, I finally came to the point where I told myself that there was nothing I personally could do to hurry things along, but that what I could do is what I had been doing all along. I could continue to do yoga, to meditate, to visualize the cancer cells being attacked, to do the homeopathic remedies that I had been given, to do acupuncture, and to let the cancer know I was fighting it, with or without the drugs from the clinical trial. I could continue to be strong and healthy and refuse to give in to the disease. I could use the time to gain more strength.

In fact, only in the last two weeks have I finally felt as strong physically as I was before my last hospitalization. While what looks like my pregnancy belly remains, I no longer feel wiped out mid-day and no longer walk slowly, but am back to strength and striding. My friend Dianne, with whom I had dinner last weekend, remarked to me that I was so much stronger than two weeks prior when she and I went to the farmer’s market together. I realized she was right. That day, after we walked around for about an hour, I had to go inside the warehouse building and just sit and rest. So, at least some of the time spent has been time well spent, getting me back to full strength and ready to take on the challenges of the new treatment.  This week, however, I have had bouts of nausea every day, nausea not brought on by treatment. Deep down, this worries me that the tumor in my stomach is growing.  With so much time having gone by since my last treatment, and the little treatment I have received so far this year, I know that would not be unusual.  So again, I am not happy about the two weeks left before I start treatment.  My team is trying to get me started on treatment five days earlier, and have tentatively scheduled me for that earlier start, but that all depends on when my biopsy results come in.  They were told by the trial sponsor that biopsy results could take up to ten business days, which means two weeks from the biopsy, or two weeks from last Wednesday. Then the sponsor has to notify Karmanos that I am in, before I can get their drug.  So, we are at the mercy of the sponsors of the trial.  Unlike me, they are not facing advanced cancer.  Understandably, they want to make sure that their trial is scientifically pristine.  I just want to start the drugs and get treated.  It is a long process and certainly can be frustrating.  I did not face this with the last trial because it had been going on for some months.

My solution is to re-double my efforts at practicing mindfulness and patience because to do otherwise would bring on stress.  Stress is not good for anyone, let alone someone with cancer.  I will increase the time I meditate, I will rest when I feel nauseated, I will do yoga as much as possible, and will make plans to enjoy these days off treatment.  No one knows how I will react to the treatment – if it will make me sick for days, or exhaust me. At least I am going into it physically recovered from my last hospitalization.

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