This Has Been A Rough Part Of The Journey

As I was looking back on this year, since January, I realized that despite the nausea and other side effects I experienced last year with the chemo I was then on, it was a breeze compared to what has happened and what I face this year.  Last year, I dreaded chemo more and more as time went on.  When I look back, however, it does not look so bad.  I had chemo every other week.  It worked to shrink the tumors.  For three days, I was miserably sick.  For some days during and after I experienced some pretty bad side effects other than nausea.  The day after my three days of chemo, I was exhausted, but then I bounced back and had ten days I could count on where I became stronger and stronger and had stamina.  We travelled a number of times for long weekends.  I hiked.  I enjoyed good dinners, company and wine without much limitation other than generally staying away from red meat which is hard to digest.  I was never so sick I had to be hospitalized.  I knew the routine and could count on it. While I did not love how awful chemo made me feel, and while the cumulative effects made it worse and worse as the year went on, I could count on the ten days I felt relatively good and make plans based on them.

This year has not been so routine.  In late January/early February I was hospitalized for 11 1/2 days, was very dehydrated and then had to recuperate.  I then learned in March that the cancer was growing so that my short break from chemo would be over.  That meant starting the process of reviewing my options once again, going to MDAnderson in Houston to explore their clinical trials and then starting a clinical trial chemo at Karmanos.  While I liked the fact that the new chemo was not as rough – I had nausea but it was not unremitting, and the chemo was three weeks apart rather than every other week, I never had the full benefit of two weeks off. After the first round of chemo, I started bleeding heavily vaginally and spent much of the second week going for tests, getting biopsies and seeing another oncologist.  The second round of treatment was worse.  By the Sunday of the second week, in mid-May, I was doubled over in pain, in the emergency room and then spent nine days in the hospital.  That hospitalization was more serious than the first.  I was in great pain at first.  I bled internally.  I almost had serious surgery and was lucky to dodge that bullet.  I came home much weaker than the first time. The recuperation from that hospitalization has been much slower and I run out of steam most afternoons late in the day.  My digestive system has greatly slowed down and is no working that well.  I have what looks like a pregnancy belly that always gives me some pressure, and which definitely interferes with my yoga practice.  While I am getting better, I am still not at my level of strength and stamina before the hospitalization.

Last week I was sent for an MRI and for draining of some of the fluid around my belly to test it.  I received the results this week when I went to my oncologist.  The fluid contains live cancer cells, which means the cancer is growing again and my second type of chemo is not working.  This is frightening because these cells are obviously migrating.  I now, 14 months after being diagnosed, face the fact that there is only one more FDA approved third type of chemo for gastric cancer and in Dr. P’s words, third rounds of chemo are usually not as effective.  There are clinical trials, however, and Karmanos has a trial of an immunotherapy drug that has shown great promise and for which I would be the first Karmanos patient registered.  Unfortunately, I do not know yet if I am eligible because they have to test my tumors and I have to do yet another biopsy because the trial requires one within six weeks.  I told Deb and Judy yesterday that I feel that I have been poked and prodded nonstop since my diagnosis.  While I never get used to the discomfort, I accept it as part of the price I have to pay.

When I received this news from Dr. P earlier this week, I was devastated and spent much of the day crying.  In fact, I almost ran out of Karmanos, because I wanted to get home and lick my wounds.  I rushed out so quickly, I realized once I was driving my car that I still had a line hooked up to my port that needed to be removed.  I had to turn around and go back.   I am stubborn and strong, but this cancer is stubborn too.  It is really trying to kill me, and I refuse to give in, but I am worried about how fast I have come to this point.  Emotionally, I am much better today and continue to visualize myself healthy and cancer free.  But until I know whether I can be in the trial, I will have underlying stress which I can feel. Stress is not a good thing for cancer.  I have been meditating every day to relieve it, have been doing yoga, and have been focusing on enjoying life.  Right now, however, as I write this post, I can feel the stress.

I knew starting this journey there would be setbacks, but knowing that in the abstract and knowing that in reality are two different things. I am also angry at the circumstances in which I find myself once again.  It is not fair. I did everything I was supposed to do to stay healthy – ate well, exercised, tried to keep my stress down, but despite, that I have advanced stomach cancer that simply does not fit my lifestyle or age.  I am one of the lucky random people for whom no explanation exists for why I have this stomach.  There are many of us.  I know I am not the only one who feels this way. I would guess that everyone who has cancer has similarly thought about the unfairness of having cancer cells trying to kill them.  I know plenty of people who have faced this fight, most of whom survived but some who did not.  All of them thought it was not fair. All were surprised by their diagnosis.

While I wait for my tests to be scheduled and wait to start treatment (waiting is hard because I want to aggressively attack the cancer), I am determined to enjoy my life, live my life and I continue to visualize myself as healthy and whole. Everyone who sees me says I look fabulous, that I do not look like anything is wrong with me, and that my yoga practice continues to be strong. When I hear that, I sometimes think the outside of me is not matching what is going on with the inside, but then I decide that the outside is matching and that I will continue to be healthy. I tell people I am not sick – I have rogue cells that need to be destroyed.

My friends and family have surrounded me with even more care and love since they heard this news.  They continue to offer prayers and thoughts for healing, which I accept gladly. They continue to tell me they know I am a survivor and as the days have gone on, I have gone back to thinking that as well.  On the day I heard the news, I did feel beaten.  I woke up the next day angry instead and back in the fight.  Onward and upward.

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All For One, One For All

Anyone who has read the book, The Three Musketeers, or has seen the movies, recognizes the phrase that is the title to this post. I have had this post in my mind for weeks, but due to other circumstances (hospitalization and recuperation), am just getting around to writing it, finally. If you remember the story, it starts with three musketeers who have each other’s backs, but ends with a fourth. That is how I feel about my dearest friends Deb and Judy (we three are the three musketeers, Athos, Aramis and Porthos – don’t be impressed; I know the names because I Googled them), and Jackie (who is the fourth musketeer, D’Artagnan – for some reason I remembered his name without using Google).

Deb, Judy and I met in our second year of law school. We each had transferred to the University of Michigan Law School from Wayne State University Law School. I had originally been accepted to U of M, but chose to go closer to home until the professor for whom I worked the summer after my first year urged me to go to U of M, which was nationally known and would open more doors for me. I was slated to be on law review at Wayne State, along with Deb and Judy, but none of us ended up working on law review because we transferred. In a twist of fate, had I stayed at Wayne State I would have met Alan. He was on law review. He was not in any of my first year classes because he was in a different section than me. Thus, I did not know him from first year, and because of my transfer I did not meet him until my first year working at Dykema. In hindsight, I am glad it worked out that way. Who knows what would have happened had we known each other in law school when I was still with my first husband and was very unhappily married. When Alan and I met, we were done with school, I finally had the money to divorce my first husband, Alan and I were working at our law firm, and able to have our friendship and then romance.

Deb and Judy and I were inseparable in law school. We took most of the same classes. We quickly became each other’s confidantes and shared everything going on in our lives. Deb and Judy were by my side as I went through a separation from my first husband. I remember walking in Ann Arbor with them when they asked how it was going. I burst into tears because he had shown up at my house and refused to leave, which caused me to have to leave and find a place to stay. He did not want to separate or divorce. It was my choice, and he tried every which way to force me back into a relationship. I even agreed, out of guilt, to go to marriage counseling with him, which only solidified for me that the marriage was a mistake, and which I used as a forum to brutally tell him that there was no way I could stay married to him. I had known from the start the marriage was a mistake and told Deb and Judy how I had finally said it out loud six months after getting married to my college roommate and close friend, Dianne, and then tamped it down out of guilt. They were there for me. In fact, there were times I spent the night with Judy, especially in our third year once she moved to Ann Arbor. I also remember the day I ended up with a root canal after three days and nights of agonizing pain in a tooth. Judy found the dentist for me, and I finally had relief. That day, when I told her that after taking Percodan that I felt like my head was floating off my body, she said you are not driving home, you are staying with Al (her husband) and I tonight. Judy introduced Deb to her first husband, and while the marriage did not last, for a time Alan and I used to regularly go out with them and we all attended her wedding the September after we graduated from law school. Judy and I also lived through Deb’s romance and wonderful marriage to Norm, her second husband. We are so glad they are together. He is the right person for her. Deb and I also went through Judy’s first pregnancy with her – I remember she decided she wanted to start her family sooner rather than later. She got pregnant during our last year of law school. As we were all taking the bar exam that July, Judy was having Braxton-Hicks contractions, making Deb and I very nervous she may give birth. Luckily, she lasted until September near her due date. I also remember her telling Deb and I her firstborn’s name was Greg, and we told the firm. Then she changed her mind, twice, until the name Tony finally stuck. After that, we decided not to announce the names of her later children until we knew she had them finalized. We went through so many life events together: divorces (mine and Deb’s), Deb’s sister’s closed head injury from an auto accident, the dementia of Judy’s mom, including seeing the beginning of it, the loss of parents (Deb lost hers when they were in their 60’s and Judy lost her dad young and her mom was lost to dementia years before she died), the loss of my parents, Deb’s breast cancer and our celebration in Chicago when she reached the five year survivor mark (and thank god, its been over 17 years now). We knew each other when our parents were all alive and shared those memories.

Judy, Deb and I all accepted jobs at Dykema right out of law school and we continued to be inseparable at Dykema. I spent my whole career there and they spent most of theirs. I cannot tell you how wonderful it was to work with my best friends. I also remember when Alan and I started dating, Judy told me because he was Jewish he would never marry me and I should think about ending it before I got hurt. I told Alan, who, of course, was greatly upset. We laugh about it now – after 33 years of marriage. Judy loves Alan as does Deb, but Judy spoke from love of me, not because of dislike for him. She wanted to protect me. When Judy left the firm in 2003, it broke my heart. It was a horrid year – the year my son had to have serious surgery for pectus excavatum, and Judy was upset with Alan and I because the firm was doing her wrong, and our kitchen and downstairs were under construction starting that fall. I cried a lot in sirsasana after my yoga practice, about Judy, about my son, and about the frustration I was feeling. Deb, of course, ever the mediator and caregiver, worked the middle and kept me calm. When Deb left 4 years ago, it broke my heart yet again. I cried a lot. Alan reminded me he was still with the firm and with me. I told him I knew, but although he was my best friend, it was not the same as having my girlfriends there. I remember the week after Deb left, walking into her office (I had put her in the office next to mine) and just feeling so sad. I missed her every day. I have talked with Deb about my wishes should I die before her (the odds are clearly there for me). While she hates to hear it, I know I can count on her to follow through.

We all were very busy with our lives. We still saw each other but not as regularly as we had when we were all at the firm. Then, I got my cancer diagnosis. From that day, on a daily basis, they have reached out to me. They were there at my house the Friday I saw Dr. Death, and Deb arranged, through her contacts at Karmanos, to get me an appointment the next Monday morning at 9:00 a.m. at Karmanos. Deb, whom I once told Judy was the most selfless of the three of us, has never missed a chemo appointment (maybe one) and just puts my doctor’s appointments in her schedule. She is fiercely protective of me, and will challenge the nurses and doctors to make sure I get the answers and right treatment. Judy worries about me like a mother hen (she is a mother hen to five children) and almost cancelled her trip out west when I was hospitalized the last time. Judy cancelling her trip would have upset me. She, like my friend Jackie, has fed me and made me food, including when I was hospitalized in January/February this year. Judy likes nothing better than to have us to come to her house where she can feed us wonderful homemade middle eastern food and, of course, send me home with leftovers. When Deb’s Uncle Bus died recently, it killed Judy not to be there. We both arranged food at the funeral home and at Deb’s house, me from here and Judy from out west, to support Deb. We also have had a bad habit of shopping together since my diagnosis, and egg each other on. I have always loved to shop and now we do so in Birmingham, at Nordstrom Rack or other places. We even ended up with serious estate jewelry because of me. They want to see me as much as possible and they do not know how wonderful that has been for me. We have each other’s backs. We truly are the Three Musketeers.

Jackie is the fourth Musketeer, D’Artagnan, who joins the three later. Jackie I first met when Alan and I began dating. She was married to Joel, Alan’s good friend, whom he met freshman year at U of M. Joel, like Alan, was a Deadhead. Joel met Jackie at U of M and although he was originally from New York, he stayed in Michigan and married her. He is one of most talented architects and they both are very involved in the community. One of my earliest memories of Jackie was being at her house, she was wearing overalls, and her adorable daughter, Jennifer, was doing a happy dance. She was maybe 18 months old and so adorable. I did not yet have kids. As the years went on, I became closer and closer to Jackie. We went up north with our families and skied together. I remember going to Boyne Mountain when the actual temperature in the car read minus 20 degrees, yet our husbands kept going and we tried to ski. How stupid was that. We went to Whistler/Blackcomb together to ski when Alex was 11 and Sara was 13. Alan lost Alex the second day we were there. When Jackie and I returned for lunch after skiing together and he told me Alex had been missing for over an hour, I freaked out. Jackie told me I was much easier on him than she would have been. I kept visualizing Alex lying in a crevasse somewhere. Instead, he apparently rode the lifts without telling anyone he was lost (although all lift operators had been alerted) and found his way to the mid-mountain on her lunch and he found us. Joel and his son Jacob, skied Aspen with us – I think something at school kept their daughter Jennifer from being able to come, and Jackie stayed with her. We also travelled with Joel and Jackie, on one of our nicest trips to northern Italy three years ago. Jackie planned that trip for months. We went to Piedmont, Bellagio on Lake Como, Santa Margherita, Cinque a Terre and to Lucca. Jackie is an incredible trip planner. Every place we stayed was so beautiful and her itinerary was the best we had done in Italy. We were supposed to spend a week in Paris last June with Joel and Jackie, but chemo got in the way. This July, however, we are planning a trip to Napa with them. I cannot wait. I can say that the places chosen by Jackie look incredible, as usual.

Our kids are close. Not only have they skied together most of their lives, but they also came up north with us in the summers. I remember one summer when we spotted the only snake we have ever seen at our place up north. It was a small black snake and when it saw us, it made a shape like a cobra. Alan ran to get a shovel, presumably to kill it. I ran into the house to grab an Eyewitness book we had there about snakes to see if this snake was described in the book. It was. It was an Eastern Hognose snake and it is harmless. I read out loud to the group that when it feels threatened, the Eastern Hognose snake first mimics a cobra. When that doesn’t work, it plays dead. Just as I read that, the snake stopped acting like a cobra and flopped over like it was dead. It was hilarious. We still laugh about it. My son was disappointed that despite many more trips up north, we never saw that snake or any other snake again, but it makes for a great story – Alan holding the shovel and me holding the book. Obviously, we followed much different approaches to the problem.

Jackie and I have also had a regular ski widow’s weekend for the past four years as our guys do their annual ski trip. The first year, when Sara was living in L.A., she came to Santa Monica with me. We hiked, ate well, rode bikes and visited with Sara. Since then, we have gone to South Beach where we can count on good weather in early February, great food, great art and design and fun people watching. Jackie, of course, always has new suggestions of things to see.

Jackie came to just about every chemo, made me lots of food, gave me food that she said worked for her when she was nauseated from gastritis, and has had us over to her house for dinner too many times to count. She is a great cook, by the way. She checks up on me regularly and makes me feel cherished. We are lucky to have such good friends and I am so glad she and I became so close over the years. That closeness has only grown since my diagnosis. From Alan’s friendship with Joel, I gained a close friend.

The spirit of one for all, all for one rings true for these friends. I have many other friends as well, and I hope they do not feel slighted by this because all are precious to me. Judy, Deb and I have been and have remained a team since law school and that is a rare and beautiful thing. Jackie, Joel, Alan and I have been very close as couples and as friends, for almost as long, and our kids are also close and truly like each other. They are such warm and giving people. I count myself lucky to have these other musketeers behind me, supporting me, loving me, crying with me and over me, and worrying about me. It makes me feel cherished. It is one more reason I love my life. I toast all of you. No matter what, I know you are there for me.

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Facing Mortality Every Single Day

While we all know we are mortal, and from time to time think about it, having advanced cancer, and having been through two pretty awful hospitalizations, has put me in the position of facing, head on, every day, the fact of my mortality. Most people do not think of their mortality every day, and when they do think of it, consider it something they will have to deal with in the future. For me, it is a constant I cannot escape. My last hospitalization really brought this home. I was much sicker than the first hospitalization. I was in extreme pain. I was facing emergency surgery and internal bleeding. There were no guarantees, and there were times when I knew that this could be it and that I may not survive. In addition, the fact that this came on without warning hit me hard. I seemingly was fine the day I ended up in the hospital. That week I felt strong. I practiced yoga for more than an hour every day, including my second series practice of Ashtanga. I worked, I ran around and felt fine. On Sunday, the day I ended up in the hospital, I never stopped until I doubled over in pain. In the space of one hour, I went from feeling great to agony. One hour after that I was in the emergency room, being given dilaudid and off to an emergency CT scan. It was frightening. Unlike my first hospitalization where for a week before being hospitalized I kept getting worse and thus had advance warning, there was no warning this time. It hit me that I could collapse any day, without warning. It hit me with full force that I could die any day. While I knew that in my head, now I knew it in my heart.

The effect of this was devastating to me emotionally. When I got out of the hospital, I was so weak at first I needed help to walk. I could not get comfortable because my feet, legs and stomach were so filled with liquid that I had constant pressure, including on my diaphragm. I could not sleep well. I was short of breath from the pressure. Most of all, I cried over the unfairness of this, over the fact that I had absolutely no warning this would happen, and I feared that it could happen again without warning. While I am better about it now, the first few days I could cry at any moment. Every time I talked to anyone about what had happened I had tears. That is not me. I cried in front of my children, my husband and my friends. I told people how awful it had been and that I was angry that my life was not only forever changed but up in the air. Alan and I had a very difficult and emotional conversation about what we wanted as far as services when we died. While he reminded me that anyone could die any day without warning, that provided little comfort to me because in my case, it is much more likely. Most people who die without warning do not know it is coming. They wake up without knowing this is the last day they will live. They live their lives assuming they will be there the next day. I do not have that luxury any more. When I think of the past, before my diagnosis, I think of my certainty that I would live a long healthy life. My family lives long and healthy lives. My uncle, who is 93, continues to live on his own, is totally cogent, and tough. My aunt, who is 90, is the same. Had my mom not contracted sepsis in the hospital, I have no doubt she would be going strong at 91. Even as sick as she was, she lived until 90 and, until she contracted sepsis at age 84, she was on her own, making Sunday dinner for us, going out with my aunt and her girlfriends and going strong. I also did everything that one is supposed to do to be healthy. I ate well. I exercised. I meditated. I slept well. I also have a a wonderful marriage and children. I have been lucky and blessed in my life and my love and partner, Alan. That makes it even harder to bear.

There were times during my hospitalization when I even questioned whether the fight in which I am engaging is worth it. I understood, as I suffered in pain, why people sometimes give up. That is not in my nature, but I think anyone, no matter how strong, who is not living but simply existing in pain has to question whether it is worth it. I want to live, not simply exist. I also think anyone, no matter how strong, who faces the sudden, debilitating hospitalization I faced, would be emotional and cry at the drop of a hat afterwards. If I did not, I would not be normal. The fact that I need to share my feelings to deal with me, is good because it helps me heal emotionally. This blog and the posts I have written, have had a healing effect on me as well. People who read this blog tell me over and over that it is inspiring and that my toughness and determination are inspiring as well. For me, it is a necessity that I write out what I am feeling, and that I share it as well. It is cathartic. I also believe that those who face this type of fight and who have friends and relatives watching them do so, should know how tough it is.

When Alan and I talked about what we wanted when we died, I cried non-stop, but we had the conversation and I am glad we did. Neither of us want anything religious. We want a memorial service where anyone who wants to talk about us can do so, and then a day at the house when people can visit. We both talked about cremation and then mingling our ashes once both of us were gone. I told my friend Deb, to try to get this blog published for me. Of course, Alan continues to say, he expects me to outlive him. That did make me smile. I just want as much time with him and my children and family and friends as possible.

Facing mortality every day, and knowing, truly, that there are no guarantees, is hard, but there is also a silver lining to it. I have constantly told my children over and over how much I love them and am proud of them and that I am frightened and angry at my circumstances, but that we must deal with it. I have looked at my husband every single day and told him over and over that he is, and has been, my best friend for over 30 years, that we are lucky in the marriage and relationship we have had and the life we have had. I have talked frankly with my sister in law, Sue, who has faced death more than once and is one of the strongest people I know. I have been lucky to have her in my life. I have told my friends how much they mean to me, and told them what I want after my death. They have constantly expressed their love, hugs and support and we have a closeness because we know there are no guarantees. When I am hugged by those I love, I hold on tight to show how much I love them back. I have appreciated every single day that I feel good and am living, and not just existing. Most people avoid these conversations and thoughts and do not communicate what they want if they die, because death is considered far off and something they can put off dealing with until later, and because they do not like to think about it. In some ways, I am lucky that I have to deal with it and can discuss this with my family and friends.

I am not giving up and I will continue to fight with all my strength and will. I am planning my next trip, to Napa, with Alan, Jackie and Joel, in July, but I will make sure to have travel insurance in place. My nephew in Sacramento is getting married on August 1. Alan and I plan to go, assuming I am fine to travel. Unfortunately, I am now on a low fiber diet, so many of the foods I love to eat, such as salads, veggies, berries, grains, lentils, kale, are off limits. I am enjoying ice cream, however. It has been over a week since I returned home from the hospital. Each day I am a bit stronger. Already this week I have practiced yoga three times, and I plan on going to yoga tomorrow. I have worked a bit, and I am again going out with friends and family and living. I am grateful for every day. Life is beautiful. Life is to be treasured. Remember that and never, ever, take it for granted.

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Indignities Of The Body, Not The Spirit

During this last hospitalization, in the midst of being so ill and so weak, there were many indignities I suffered and things I had to do that I could not imagine doing without total embarrassment. This included having the NG tube inserted, which on the first unsuccessful try caused me to choke and had to be pulled and tried again. I got sick in front of my friend Deb and my son Alex, not to mention nursing staff, more than once, in a basin while in bed, and there was nothing I could do to stop it. Because the NG tube was attached to a suction tube at the wall of my room, every time I had to use the bathroom I had to call the nurse to unhook the attachment so I could go to the bathroom and a number of times the contents of the tube spilled on me and I had to be stripped of the hospital gown and redressed by the nurse or nurses’s aide, and washed down by them (although I helped when I could). If the nurse or aide was too slow, which happened a couple of times, I actually soiled the bed to my complete and utter dismay (and continued dismay-I almost did not list this one). By Friday, when my blood counts dropped precipitously because of internal bleeding, I was too weak to go to the bathroom and had to use a bedpan with the assistance of the nurse or aide. This was a scenario I never, ever, could have imagined in the past because I am strong physically, and years of yoga have made me very flexible, but I had no choice and was grateful for the help. On Friday, when I was sent down for another CT scan and was too weak to transfer from the bed, I became one of those patients that had to be lifted onto the table by my sheets. My bladder had to be catheterized once in bed by one my doctors while the nurse and aide looked on and they measured what came out. I felt like an infant who could not survive without adult help. Sitting here today, it is hard for me to even write about these things because under normal circumstances I would be so embarrassed by what happened and what help I needed. At the time, however, I had no choice, and was grateful for the kind nurses and aides who did not blink an eye and who brushed off my apologies every time I needed them to help me with basic human functions. They told me over and over again that this is the easiest part of their job, and that my attitude, and gratefulness to them, made them happy to help. Every time I apologized, they told me to stop.

Despite this, I concluded that while my body suffered indignities, that did not touch who I am as a person. My self, my spirit, my essence, remained the same throughout. Yes, I am independent and do not like being vulnerable. Yes, I felt totally vulnerable and dependent. Yes, I hated feeling that way. Yes, I felt not just like an infant, but also sometimes like a 90 year old sick person and not a vibrant human being. But, who I am was not changed by these things. In some ways, I almost became an observer of the fact that my body was not functioning well, that I could not do anything about it right now, and that I had to accept that fact. I also thought a lot about my mom, and her illnesses the last six years of her life, where every time she was hospitalized, she needed this type of help. I became more sympathetic to her and what she went through having now been in the position of needing the same help. Of course, she was much older and had many illnesses, but the indignities are the same. What I tried to do was to show how grateful I was to the nurses and aides who helped me, to thank them every chance I could get, and to be grateful each time I could go back to doing things on my own. As soon as I felt well enough, I also tried to push myself, walking down the hall, going to the waiting room to visit with friends and family who came to see me instead of just sitting in my bed, and, when I felt like it, simply crying over the frustration and pain when I needed to cry. I asked for help when I needed it, and when I did not, I did it on my own. I stopped asking for pain medication as soon as my pain was bearable, knowing that I needed to wean off the medication. When my friend, Daniella, came to visit on Sunday, one week after I had been hospitalized, we discussed this, and she observed that of course the indignities were to my body, which had nothing to do with my real self. Hence, the title of this post.

The second conclusion, and one I came to as a result of my first hospitalization a few months ago as well, is that nurses and nurses aides truly can be angels in disguise and are the most important people to recovery. They are the hardest working people I observed in the hospital. Good nurses and aides make all the difference, and can act proactively to help you recover and to coordinate your care from the doctors. Three of my nurses, observing what was going on with me, actively called my doctors, made suggestions and helped get me out of the hospital sooner than I think it would have happened without their help. The nurses and aides never stopped. Their care, their grace and their calm, brought a calm and peace to me. Their interest in my well-being was not forced. Not only did they provide nursing care, and bodily care, and even hugged me for emotional care, but they spent time just visiting with me. I asked about their lives. They asked about mine. They genuinely cared. I remember when I left Karmanos, the nurses who had cared for me, and not just the one on duty that day, came to my room to say goodbye, wish me the best, say they did not want to see me as a patient again, but that I should visit next time I was downtown. They meant it. At Beaumont, Jenni, who was my nurse for three of my last days there, cheered with me when the NG tube was pulled on Tuesday, when my diet quickly went from liquids to an unrestricted one, and she helped make sure that decisions were made Wednesday morning by the doctors so that I knew, early on, whether I could go home. Autumn and Michele were totally proactive with my doctors, calling them to suggest treatments, and to let them know what was going on with me. While you may read on Facebook or other social media tributes to the unsung nurses and aides ad be told to appreciate them, until you have experienced the care of a good nurse and aide, you do not fully take in how hard they work, how important is their job, and how much they can help direct the care of a patient. A proactive nurse can recognize when treatment should change, and calls the doctors to push for that. Nurses and aides are the lifeblood of care in the hospital. This is not to say that every nurse or aide I had were all as dedicated, but the majority were clearly dedicated to what they did and dedicated to their patients. This is not to downplay the importance of having good doctors, and doctors who communicate well with you. Nurses and aides, however, are the ones with day to day and 24 hour responsibility for their patients and who are observing you 24 hours a day.

I hope never to be in the position to suffer the bodily indignities I suffered this time around and I hope not to have to go back to the hospital, but I know there are no guarantees. If I end up in the hospital again, however, I know that no matter what, my spirit will not change no matter how dependent I physically become on care. I am me, whether I can stride into a room, do headstands in yoga, or have to nap constantly because of exhaustion. While I prefer the yoga, striding, healthy me, the weak, ill me does not change who I am as a person.

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The Second Time Is Not The Charm

I just returned home this week after nine days of hospitalization. This came on unexpectedly. I had my second course of the clinical trial chemo treatment on May 6. Everything seemed fine, and in fact, as before, it was easier than my first type of chemo in terms of side effects and nausea.  While I had more intermittent nausea the weekend following treatment, it was intermittent and not three days of continuous nausea.  The next week, which was the first of my two weeks off, I did yoga every day, went to work except when I had appointments, had energy, met friends for lunch, went out to dinner with my family and husband, and generally lived.  In fact, I was feeling so strong that for the first time in months I did not only the full primary series of my Ashtanga yoga practice but the intermediate series poses I had been given.  Sunday I ran around the whole day, with no indication that by that night I would be doubled over in pain on my way to the emergency room.  My cousin Mary asked me to come to Grosse Pointe, go with her and my aunt to church where she was having a mass said for my mom, and then go to brunch with them. Although I do not go to church and have not for years, and although my husband is Jewish, I thought it was a good thing to do, to honor both my mom and my aunt, who is my second mom. My aunt was thrilled I came.  Afterwards, we went to the church social hall where she introduced me to everyone, then to brunch at a cute restaurant Mary picked out.  I then met Alan in Birmingham where we walked the dogs in the glorious sunshine and went through the spring art fair.  Then, I returned home to pack for a business trip the next day to San Antonio.  The plan was to go to dinner that night with our son Alex, I would leave for the airport the next morning and return from San Antonio Tuesday.  That was not to be.  After packing, and about an hour before we were planning to leave for dinner, my stomach blew up to new heights, a sharp pain began in my right abdomen and then I started getting sick, with the pain increasing and increasing to the point that it reminded me of when I was in labor.  I e-mailed Dr. P, who told me to get to the emergency room.  It was so bad I could not make it downtown, and he told Alan to drive me to the closest hospital, which turned out to be the one whose pathologist had originally misdiagnosed my type of cancer, but the one where my internist is admitted.  The pain was so intense that I was panting and moaning in the car, and the minute they put me in a wheelchair I begged for pain medicine.  I am not one who takes such medicine lightly, and I have rarely filled prescriptions for pain meds in the past, but this time, I had to have it.  They injected me with dilaudid.  Within seconds I felt a flush and relief.  I was then admitted.  It was Sunday night about 5:45 p.m.   I stayed there until Wednesday morning of the following week, or nine days.

The first two days were a blur – a lot of time was spent trying to get records from Karmanos to Beaumont so that they could catch up to what had been going on in my body.  I had CT scans, x-rays, barium x-rays.  HIPPA interfered because although my latest scan from MD Anderson was at Karmanos, under HIPPA, Karmanos could not release it to another institution even with my permission because it was not done by Karmanos.  It took a couple of calls from Deb to MD Anderson to get it to put the scan into a dropbox for viewing by the Beaumont staff.  An NG tube was inserted through my nose, down my throat, into my stomach, to suction fluids from my stomach. That took two tries, and was a miserable experience.  I also, unfortunately, had the world’s worst roommate, who not only complained nonstop, was rude to all of the staff and made constant demands, but kept her TV blasting 24 hours a day .  She was so bad that at the end of the second day the nurses aide, who was so sweet, walked out of her curtained area, burst into tears and said to the two other aides in the room “I can’t take this any more.”  I burst into tears and said the same thing, and we hugged each other and cried.  I asked to move, and they said it would happen.  It did, within the hour.  The roommate, who unfortunately shared the same first name as my cousin Denise, was acting out and angry that her doctor was moving her from injected pain meds to oral pain meds to get her ready to go to rehab.  She did not want to leave, she wanted her injected pain meds, and she made sure everyone knew how unhappy she was about the decision.  She never stopped pushing her button, screaming for the nurse, complaining about the doctor, asking for her regular doctor, who was not her admitting doctor and did not have privileges at Beaumont, and she did not care who she disturbed.  It was awful and it was hampering my ability to get any rest.  I was exhausted.  They moved me on Tuesday night.  On Friday night I was moved again to a private room, which was the best.

By Friday, the surgeons and doctors had come to the conclusion that a mass in my left ovary had grown significantly and that it was essentially pushing against, and thus functionally blocking, my colon, causing a functional bowel obstruction.  Surgery to bypass the bowel and do a hysterectomy was scheduled, but for Tuesday, after the Memorial Day weekend.  However, Friday night I began losing blood and my blood count dropped by one-half, necessitating transfusions eventually of four units of blood.  I was told that they may have to do emergency surgery Friday Night but first had to get my blood counts up and do another scan.  That was the most critical night.  Despite my instructions to the nurse practitioner not to call Alan until we knew if emergency surgery was going to happen, he called Alan at 11:00 p.m. and told him he should come to the hospital and that my situation was grave. Alan was there until 3:00 a.m.  I am just grateful that the next day was a Saturday and he did not have to go to work.  After that critical night, things started to move in my system throughout the holiday weekend.  In fact, I am lucky I had the three days before surgery was scheduled to get more stable because surgery was cancelled Tuesday based on my status.  I felt horrible still, and my stomach not only continued and continues to look nine months pregnant but I also have swelling from my feet to my breastbone.  I told the doctors that for the first time in my life I had fat thighs (my legs and arms are very thin, normally). In fact my words were that I felt like Porky Pig.

Things moved quickly after that.  Tuesday morning, at the same time that the surgeons told me that surgery was cancelled, they also agreed to remove the NG tube.  That made me very happy.   Within hours I went from a liquid diet to an unrestricted diet and was sent home the next day when I tolerated eating food.  I was thrilled to be going home.  Sleeping was not happening, I was so uncomfortable with the stomach and swelling. I was sick of being in a hospital and just wanted to recuperate at home.

Coming home has not been easy.  Wednesday, I was so weak I could not even walk without assistance.  Thursday (yesterday) was a bit better.  Today is a bit better still.  I still look as if I am nine months pregnant, and my legs are still all swelled, although slightly down.  I have had visitors, but my sleep is very intermittent.  In fact, I dread the long nights.  At best I sleep a few hours, then am awake a few hours, then doze a few hours.  I cannot wait for the daylight.  I am also very emotional.  I can cry in a heartbeat and do every time I relate this story to a visitor.  I know this comes not only from the ordeal but from the vulnerability I feel and the lack of control.  I was feeling great.  I had no indication that I would be in a hospital, and suddenly out of the blue, it all went downhill. That is a frightening thing.  It brings it home to me once again just how little control I have over this f……g cancer.  I am back home and plan, by next week, to be doing yoga again.  I see Dr. P on Tuesday morning to discuss next steps.  I hope by then that instead of being nine months pregnant a couple of months have dropped off.

 

 

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So, How Are You Doing?….

Almost daily I receive inquiries from friends and family asking me how I am doing, but whenever I am going through and finish a chemo treatment, those inquiries increase considerably.  Those who know me and have read this blog know that chemo is something I often dread, and that it has made me pretty sick at times.  I am not alone in this.  Unfortunately, I have this experience in common with many people I know. Those of us who have gone, or are going, through chemo share the sentiment that chemo is hell. We also share the sentiment that we are doing it to help defeat the cancer; and thus, the hell is worth it if it works. From my personal experience, it is amazing to me the number of people I know who keep track of the weeks I will be having chemo.  Having learned that I am now on an every three week regimen, I receive messages the week chemo is scheduled that people are thinking of me, they hope the chemo is going okay and that I feel fine, and asking if I need anything or they can do anything for me.  My friend Kim also sends me adorable photos of her new puppy with her grown dog, which make me smile. While I certainly know my schedule and make plans based on whether the week is a chemo week or an off week, I am touched that so many people also keep track of the weeks I am scheduled to have chemo.  

I just finished the second course of the new chemo I am taking.  Based on those two courses of chemo, there appears to be a pattern to how it affects me.  The day of the chemo, which in this round is a Wednesday, every three weeks, I am given Benadryl by injection.  It knocks me out for the chemo.  Within about five to ten minutes of the injection I cannot keep my eyes open.  Not only did I sleep during chemo, I dozed in the car ride home and, after I arrived home and had lunch, I slept until mid afternoon.  That is a blessing, and an escape from the effects.  I never knew Benadryl was such a powerful drug.

On the day after the chemo, I felt fine and a bit wired up with energy. This is similar to my experience after the first round. I even met a friend for lunch that day. I should have guessed why I felt fine the day following chemo but it did not occur to me, so I asked the nurse why I felt so good. Her answer – I am pumped with steroids on Wednesday and am still feeling the effects of them the next day.  The steroids give me energy and mask the side effects.  Once she said it, it made sense to me.  I feel a bit wired up that day, which is something I have felt when put on steroids a couple of times in the past by my doctor.  I also feel a crash by the end of the day, with a slight headache and exhaustion setting in, along with some queasiness. 

Then, it was Friday. That was a rough day. This was true the first time I had this chemo as well. In the early morning I felt okay, not great, but okay.  By late morning full blown nausea started coming on and that continued all day.  By the time Alan came home from work last Friday, I was scrunched up in the corner of the couch in the library, looking and feeling miserable.  I had to force myself to have peanut butter on an English muffin for lunch.  I had to force myself to have scrambled eggs on a toasted muffin for dinner.  I could not wait to go to bed, go to sleep and escape the misery.  I had to remind myself it was one day feeling like that instead of three days of constant nausea. That is a great improvement over my last chemo. Plus, I was not getting the side effects from oxyplatinum, which was one of the drugs I was given in my first chemo. Those included a metallic taste in my mouth, a jaw that hurt every time I started to chew, extreme sensitivity to cold, leg cramps, loss of peripheral vision for a couple of days when I stood up, and other lovely effects. Those are absent. Sadly, I have a wedding I planned to attend the Friday after my next chemo. Although I am playing it by ear, if I feel the way I did the last two times on the Friday after chemo, I could not leave the house, let alone go to a wedding.

Saturday and Sunday I was exhausted and had break through moments of queasiness, but much of those days I was fine.  Saturday I was back at yoga at Karma Yoga and Sunday I was at Matthew’s at Ashtanga Michigan doing most of the practice. 

Now I have almost 2 1/2 weeks until my next chemo.  That is the best change from my last chemo, along with not having to be on the chemo pump for three days.  My next scan in two weeks will let me know if this chemo is working.  I certainly hope so. I like this protocol a lot more than the last one. As an added bonus, I have not lost the little hair that grew back during my chemo break earlier this year.

How am I doing is a question that goes beyond the physical. Physically, I woke up the Monday after chemo feeling as if I had turned the corner.  I was strong.  Yoga felt easy, and I know I could have done more.  I ran around all day without feeling tired.  Over the next two weeks off, I can look forward to feeling stronger each day. In fact, I went to yoga the last two days, have dinner plans and girls’ nights out the next two nights, have my son coming over Friday and then dinner with Alan and I and him, and have dinner plans on Saturday. I am ready physically for all of those plans. Emotionally, I am always up and down around chemo time.  In the back of my mind, I worry about the chemo and whether it is working. Lately, around the time I have chemo I seem to run into story after story about cancer that reminds me of the uphill battle I face.  The latest – on Sunday in the New York Times – was a story about mothers whose cancer had metastasized (which, of course, is true of me) and their daughters who shopped and tried on wedding dresses so that the mother could have the experience of seeing her daughter in a wedding dress.  In one case, the daughter was a 15 year old.  In most cases, the mothers had already died by the time the story was written.  The story brought me near to tears thinking of my family. This does not mean that I must see my daughter in a wedding dress to be fulfilled. Instead, I want to be at the weddings, if they have them, of Sara and Alex, I want to walk Sara down the aisle with her father if that is what she does, to be there when Sara and Alex buy their first houses, to be there when my grandchildren are born and to help my kids with that experience, and to be with Alan, growing old together. I want to celebrate birthdays, holidays, weddings and births and all that life has to offer with my family and friends for many years to come.

The New York Times story was not the story to read on Mother’s Day.  It certainly smacked me in the face, again, that so many people have had hopes and dreams to survive cancer but have not. What I felt after reading the story is akin to nostalgia for a past where I simply assumed that because I was healthy, strong, took care of myself, ate well, did yoga, and had a good family history, I would be around for a long time. I am strong. I am healthy, and I am not sick. Instead, I am battling rogue cells and I intend to win. As Sara wrote in the card she gave me that day “This past year has proven how tough and how loved you are.  I know there will be many more years to celebrate that!”  Exactly.

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Relief And Lightness

I just returned from a quick, and very positive, appointment with Dr. P’s office where I was given the news about the biopsies I had last week and the PET scan I had yesterday.  These tests were done to determine if I had more cancer, either metastacized in my uterus and ovaries from my gastric cancer spreading, or a separate primary site cancer. The answer was no. All the tests came out negative and the PET scan this year is overall better than the PET scan I had one year ago. When Lynette told me the news, the relief I felt was immediate, and I felt a weight lift from me. I told Lynette that I wanted to kiss her and that I wanted to cry from relief. Until I felt the release of tension, I did not realize just how much stress I was carrying around about this. While I knew I was stressed about it, I had decided I could not focus on it and just worry, because worry would not change the facts and would do me no good.  But I could not help but have this in the back of my mind.  I could also physically see the release of tension in Alan as well. He barely slept last night and told me he was very stressed as we drove to Karmanos. When I asked if it was work, he said no, it was me. When he heard the news, I saw him physically relax. He now is exhausted, probably because he slept little last night and not much since he first heard it was possible my cancer had spread or I had another primary cancer site.  Tonight I celebrate.  I just had wine with Deb and am going out to dinner with Jackie and Joel and Alan.

Yesterday was a rough day. I went in the morning for the PET scan and further blood tests, ordered by the gyn/oncologist I saw last week. I was not at Karmanos  for a check-up as part of the clinical trial or for my regular chemo, but specifically to address the concerns of the gyn/oncologist, Dr. S., with what she saw when she examined me last week. Being there for those tests made me face head-on again the possibilities that I could have another primary source of cancer or that my cancer had spread further.  After the tests, when I met Deb, Judy and Jackie for lunch, I was uncommonly quiet and just felt like being at home, hunkered down. Judy texted me afterwards asking me if I was okay because she noticed how quiet I had been at lunch.  You can probably guess from this blog that I am not an introvert, and that I tend to communicate (talk) a lot.  So when I am very quiet that usually means I am stressed or feeling bad. My response to Judy – I was quiet because the worry about the results of the tests had taken hold again. Luckily I had plans for a cooking demonstration and dinner with Joe last night, which took me out of the worry for a time and gave me a great meal. The worry hit full force again when I went to bed last night. I did not sleep well.  I was up in the middle of the night for at least an hour or more.  Alan woke up at the same time and said he did not sleep for hours, again because of worry about me. I went to yoga this morning and after yoga felt a bit better, but then was hit with the worry about the news again after I went to work. This morning when I was at work, I realized that everyone who had read my last posting was really worried. Numerous people at the office came up to me, saying they were praying for me, that whatever the news, they knew I would fight hard, and they would be by me. Judy said whatever the news, “we would fight this.” Jackie told me to call on her for anything I needed. Deb insisted on taking me to my appointment tomorrow. Now that I have this good news, I felt I had to write about it and let everyone who reads this blog know it.

I am still seeing the gyn/oncologist tomorrow because she may want to remove the polyps she saw in her examination. But the dark cloud hovering over me has lifted and I feel so much lighter. After my relief at the news, Alan reminded me that I still have serious gastric cancer to deal with.   Of course I know that, but this is a small victory and every victory is to be savored.   While some may not see this as a victory, perspective changes when you have cancer.  You are happy for positive news.  You deal with the fact that you have a serious cancer, but what you do not want is more surprises.  I remember when I was told I had a blood clot as a result of my port insertion and that the clot was near my heart.  My reaction was not what you would expect when told of a clot near the heart.  Instead, I simply asked what I needed to do to deal with it, but my focus was wholly on the fact I had stage IV stomach cancer and needed to get treatment going for that. The clot was an inconvenience, not the focus of my attention.  I want to continue to focus on defeating this cancer.  I plan to defeat it, but I did not want to be fighting on two fronts, instead of one. My fight is hard enough as it is.  With the news I received today, I keep thinking of the words of the song from the musical “Hair,” “let the sunshine in, the sun shine in……” That is how I feel right now.  Now lets hope this chemo works.  I LOVE having two weeks off chemo.

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