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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15 thoughts on “This Has Been A Rough Part Of The Journey

  1. Alene Lipshaw says:

    Marilyn, it was great seeing you this week and as I told a friend of mine, you are amazing. I am so sorry you have to go through all this. I am thinking about you constantly and you’re right, your outside doesn’t match your inside. I wish I was around to be there for you. I do miss you guys and I hope you’ll be able to come visit us soon.
    Alene

  2. Marilyn, you are a fighter! It is so unfair that you have to battle this, because as you said “you did everything right, exercised, ate well and kept stress low.” When I read this I thought of 1 of my new facebook dog friends I started following. He also battled cancer and his pawparents would play Rachel Platten’s Fight Song for him when they felt sad. I love this song! His page is Frosty Strong and there is a link to his Fight Song on his page. HUGS to you

  3. Becky says:

    Your feelings are completely normal given your circumstances. I’ve seen you fight, Marilyn, and your strength & spirit are such an inspiration! You are constantly in my thoughts and prayers. FIGHT ON!

  4. Maud Gosse says:

    Marilyn no doubt it’s been a rough patch…wish it could be better. You are so lucky to be surrounded by loving family and friends. You’re a fighter and we are fighting on. I’m amazed how you can even write the post when you are feeling so yucky. We are warriors and we must soldier on. Sending you lots of love and positive energy. Peace and hope❤️❤️❤️Onward and upward xxxoo

  5. I am about 90% where I was except for pregnancy belly so I am getting there. Determined to stay strong and to visualize myself healthy and cancer free. Love you by my side. Hope you have good support too. ❤️❤️❤️

    • Maud Gosse says:

      That’s fantastic Marilyn! I’m rooting for you every day and all the way. Your fighting spirit and determination will get you through. I love you by my side also…you are my inspiration. Yes I have wonderful, supportive family and friends❤️❤️❤️Sending much love and positive energy…until your next post peace and hope! Keep fighting! Onward and upward

  6. Michelle says:

    Thank you, Marilyn, for continuing to update us all with your posts. You are inspiring, to say the least about the most! I am grateful to your doctors and nurses who continue to help you vigorously fight this damn cancer.

  7. Maud Gosse says:

    Just checking in…you have been on my mind all day…sending healing, positive thoughts, peace and hope! Onward & upward ❤️❤️❤️xxxooo

    • Maud Gosse says:

      Marilyn happy to hear you are doing fine. Killing cancer cells right along with you. Peace and hope! Onward & upward! ❤️❤️❤️xxxooo

  8. My Dearest Sister– You have always been the strongest one in the Family and always taught me to go on and take it a day at a time easier said then done! Our late parents and all of us are so proud of everything you did in your life and I know in my heart how much this sometimes broken World still needs you ! Please stay strong and keep moving forward believe me sometimes with my Bi -Polar I feel like dumping my medications down the toilet and giving up but because of you I don’t ! I’m blessed to have you as my sister only wished I lived closer so I could be there for you! All my Friends know about your situation and are praying for you !

    God loves you and so do all of us for me and your Family and all your friends lets do it so you can help others no matter what there battles are you are a inspiration ! My Dear sister is so good she never even told out Late Mother since she worried more about Mom then he own self ! Love you , Phil

  9. Maud Gosse says:

    Hope you are having a good day Marilyn….you inspire me always…..peace, hope and love! Onward and upward! ❤️❤️❤️

    • Maud Gosse says:

      Hope the screening tests went well and good luck on Tuesday…..praying everything goes as it should…..I feel we are joined at the hip…I know it’s weird but I feel it just as if it’s so. You inspire me always. Praying everything works out …peace, hope and love….I am right by your side….onward and upward! ❤️❤️❤️xxxxooo

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