Sunday, November 1, 2009

The Worse Than The Best of The Worst but Not The Worst of The Worst

So close to being caught up. I am up late writing this entry because I took the pain meds right before I tried to sleep. The response I am having....ahhh, a new one. I feel totally anxious. I have to look at my body to know that it is not shaking because inside I feel really shaky and panicky. Its better with the light on and doing something but whats this excitement all about. Maybe time for help from MariePatrice again...or maybe just the excitement of being a druggie.

Anyway, I had what I have been considering my last doctors appointment last Thursday. As I suspected the Octreatide scan turned up nothing, meaning that there are no somatostatin receptors on my tumors. I had a gut feeling there wouldn't be any and I feel a bit of regret for undergoing the test anyway. I think it was really important for my parents that I have the test so that their minds could be at rest that we tried everything to get a complete diagnosis. I know I shouldn't do things just for them but I feel okay about working as a team some to help keep them as on board with me as possible. I was interested to know if my gut feeling was accurate or not. Go go gadget gut.

The extended looks into the biopsies now suggest that the tumors are highly undifferentiated meaning that they are the least common of the least common of the least common kind of pancreatic cancer....still considered neuroendocrine just not one they have much experience with. She said she has seen 5 this year and that they are specifically a referral center for pancreatic cancer. So here is what she offered... traditional chemotherapy based on small cell lung cancer. My cancer is not small cell or lung. The best outcome would be that my cells would respond really well to it, the tumors would shrink, maybe my symptoms would diminish, and the cancer might stay away for a few months to maybe possibly 5-10 years but I would have the chemo side effects to deal with. The more likely scenario is that my cells might respond a little and then they would stop responding and regardless the cancer would come back in not too long or there would be no response.

Thankfully my family seems to be on board with me that none of these options warrant giving chemotherapy a try.

I asked the doctor again about the uterine mass and commented that the doctors keep brushing it off and asked her to hear me out on a theory... the theory is that if cancer can thrive in hormone imbalanced environments and I have something going on in my uterus and my hair and nails are acting like those of pregnant women could there be something to look more into. The doctor, nice as she is, practices in what seems to be a kryptonite box because nothing can break through to get her to think outside of it. Basically she said cancer can cause your hair to fall out even without chemotherapy... I explained that it was not only not falling out, it was really thick and bouncy and staying in my head..... she then explained that she wouldn't know what hormones to test for....

She did an exam on me and explained that the pain in the center by my sternum is probably liver that is enlarged....good to know, I think she is right. I had her feel the enlarged lymph node by my clavicle and if she though it had cancer in it. She said that she did think it probably had cancer in it as it is not unusual for pancreatic cancer to head towards the nodes in the chest. That was the whole exam.

I did not succeed in getting myself to give her a hug even though I think she could have used one and it was a goal of mine. I was in too much pain, not on the meds again at that point and was feeling so done with that model of care. I don't want to give the wrong impression... she is a super sweet doctor and later that night my mom had questions for her about some new meds and she called us from her home with a crying baby in the background and encouraged us to call more if we need to. She has been very attentive to the best of her ability and that is not something I have found every day in doctors (although throughout this cancer experience I have felt very lucky with the doctors I have had care from).

As soon as I walked out of the office I called Tom Tam the acupuncturist who invented Tong Ren or doll beating. They had an appointment for me and after a long wait for the pharmacy and then to get our car from the parking lot we we on our way, driving, driving, driving....driving some more.....ouch ouch ouch...

The appointment went like this. My mom helped me fill out some paper work. Tom stood there hyperactively shooting the shit with some people in the reception area. I am doubled over in pain, my parents are exhausted and recently found out that the prognosis went from years to maybe year, and everyone we come across seems happy and healthy and they are breathing life.

I go into the exam room (not much for ambiance) and Tom comes in and starts Chinese massage or tui na on my neck....I am pretty much groaning/screaming in pain...he is talking and making jokes the whole time. He asked if it was too much, I said as long as I can cry its okay and he and another woman who was in there but at the time I didn't know why encouraged crying...oh yeah let it out release it thats good....see now your thats how it went for a bit Tom talking, me moaning/crying/laughing nauseated and nearly out of my mind... Monica getting tissues or water as I request. Then Tom gives me a break and uses the hammer and feel better? see you don't even know you must feel better. you look better. You have pancrea cansa, no problem. We cure pancrea cansa all da time. Don let tha doctas scare you. Pancrea no big deal....Then back at my neck for a while. He finds, on his own, the swollen lymph node and goes to town on it which actually didn't hurt but felt deeply right.

Then on to the needles. I could just barely lay down on my front but said I could do it for a little while. He only had me take off my shirt, not even my shoes. For that matter he never felt my pulse or looked at my tongue. He checked that I could stay like that for a bit and then put the needles in. There was no gentle finding of the spots or tapping the needles in. It felt like he was playing darts with the needles wha-bam each one went in painlessly. Thankfully Melany had told me about different needling techniques. You feel betta? Okay sleep...and he left.... into the hall where he was talking and others were talking and music was playing... again, no ambiance...which really didn't matter because I could barely hold it together in that position. He check on me once but after that I really felt done and didn't know what to do to get attention so I waited it out.

When needle time was up Monica came in and removed the needles and helped me up and introduced herself. Hello, I am Moan-ee-ca (from argentina). I pretty much fell in love with her at that moment. Then she went to town with the tui na up and down my spine and neck and head. She also joked that it sounds like she is killing me and that she was going easy on me. Evey spot she touched was a spot that had been screaming for help for months now even longer than the diagnosis. Earlier this year I found that I started holding my pain in my mid back and shoulder blades (they say that is common with pancreatic cancer). Thankfully I went to a tui na session when I was in Arizona in August or I would have been kind of freaked out. It also felt deeply right. She had no idea that earlier that day I had received a more grim diagnosis of my condition. Out of the blue she said as she was working, Don't believe the doctors about this...which helped release even more emotion. I once again felt like I was in a place where people want me to live...not only that they want me to but that they have no question that I will.

Tom told me to go back on the pain medication and assured me he would help me get off of it again but for good. He assured me that this would work even if I took the pain meds. What a relief but still over an hour of car riding to get to the pain meds.... but if I took the Pain meds I would feel good enough to go to Northampton to hear Sharon (darnit, someone told me how to get the accent but I didn't file the message and cant find it right now) playing at her drumming concert and then try staying with her and Rachel for a few days. I left in more pain that I arrived but way way way more hope.

When we got home we decided that my dad would go to Northampton and if I felt up to it would my mom and I would follow later. So I slapped on a patch, took a pill, and got in my sacred bathtub for instantaneous relief. The idea of packing and gathering food and medication was pretty overwhelming to me even though all I would have to do is tell my mom what to do. As the medication kicked in it did not feel like the time I had used it before. I got unbelievably exhausted. I couldn't stay awake. I watched the time go by and the possibility of going west became one I had to let go of. So we planned to go the next day. It felt pretty big. This was the first thing that I really really had my heart set on doing that I really felt the effects of not being able to do. The sadness was big. I wanted to be able to celebrate my sister a little. Her accomplishments and two days later her birthday. It is hard for me to take and take and take because I get a lot of pleasure out of giving. It also represented the possibility of seeing how it was to be at my sisters house sometimes and even more than that a full break for my parents from the intensity that is me.

The next day I couldn't shake the fatigue again. Fighting it was feeling counterproductive so I finally declared that I still couldn't go. This was coming in conjunction with the first time that I thought my mom was going to loose it. She was worried because of this new seeming drug reaction but more because I really couldn't eat at all. She tried and tried. When a Jewish mom cant fall back on feeding her sick daughter for comfort all hope is lost....but seriously she hadn't had a chance to feel the new diagnosis, to tend to herself, to be, to get support or comfort from somewhere. Finally I asked that we just give in to the sleep and stop trying to get me to eat or move or get it to change..... and I slept, and slept..... I think it might have been the accumulation of not having slept a full sleep cycle for days, weeks maybe.... now that I was physically comfortable enough to sleep my body was not going to pass it up.....heres to listening to the body..sometimes its hard when my brain knows best!

By evening when my dad got home the medicine was kicking in in the good way that helps me have conversations and giggle a little. This certainly helped my mom buy some time before she looses it. Hopefully we will find some more space for her this week.

As it turns out Rachel might have the flu so it is probably really great that I didn't go to their place and life once again shows me that things turn out, usually in some positive way.


  1. Hi Tamar,

    I am so sad that you are in so much pain and it is awful to hear the prognosis has changed...I am so glad you are done with doctors and tests. Though tong ren sounds like a real trip! I miss you and love you.


  2. hey tamar, thanks for taking the time to write about some of your days.
    I love that type of sleep that you experienced.
    I love that your new fox from Argentina advised you to not believe the doctors "on this one".

    I can only imagine what your parents are feeling and going through, this must be one of the biggest life challenges for them as well.

    take care - kvn