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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5 thoughts on “The Waiting Game

  1. daniella saltz says:

    Patient and patient are the same word — finally makes sense. It pains me to read what you are going through. I can’t even imagine (except through your words) the pain of actually going through it.

    Do I understand that you have been accepted into the trial? Or does that depend on the outcome of the biopsy?

    Sending positive brain waves to you with great frequency…….

    Love,

    *daniella*

  2. Therese says:

    So sorry to hear this next treatment will interfere with your plans to go to the Napa Valley. I know how you were looking forward to it.

    Keep on keeping on, Marilyn. I’m so happy to hear you feel stronger. Xoxo

  3. Maud Gosse says:

    Hoping and praying all will go smoothly without out too much difficulty. Peace,hope and love your fighting spirit will help you through. You are my inspiration and I’m right beside you. Onward and upward! ❤️❤️❤️xxxxx

  4. I’m Happy to see you were accepted into the new drug trial and with your amazing strength and spirit you will make it work and this will help others now and in the future! I’m sad that you can’t make it to Ed’s wedding since all of us where looking forward to see you and Alan and spending some Happy time with all of the Family but you really need to take care of you right now so we totally understand !

    Take care and May God heal you with the help of the new MEDS and all the wonderful Doctors and all of us praying for you ! Love Phil and Family

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