Tuesday, February 2, 2010

I wouldn't recommend chemo for you anyway

After much deliberating, crying, fear, anxiety, confusion, etc. I decided to get the CT scan done. It helps me to have a plan. After meeting with Quang and doing four days (two cookings) of the super potent smelling (ie. very stinky) tea I decided to hold of on the tea (with help rationalizing stopping from Eleanor) and get the scan. This way if things have changed either way I would have some idea of what was causing the change. The plan was that if the tumors are the same or smaller I would continue with what I am currently doing but if they were bigger I would turn to Quang. I knew I needed the reassurance of having a next step if I was going to be sure not to turn back to chemo which my body was saying NOOOOOO to even though the side effects did not see to be nearly as bad as I feared they would be or as they are for some people.

The night before the scan I started getting a cold. Although this brought up some feelings about being physically unwell from when I was a few months ago but was too depressed to really feel, I think it served me. I was mostly too preoccupied with feeling sick to pay much attention to the fear and anxiety that I was feeling about the scan. I went to the hospital with Nathan as support (dad to come later) feeling very inward, subdued, numb, and it turns out feverish. The scan was at 2 and I would see the doctor theoretically at 3 but realistically more like 4. For the scan they put in an IV line to put contrast into my veins. After having been a pincushion for the last 5 months it was the first time that it both hurt a fair amount and left bruising. It makes me feel grateful for all of the really skilled blood takers I have come across on this journey.

After the scan, I asked the technician to see the results. Although she cannot say anything about what she sees she was willing to give me a tour through the images of the inside of my body, telling me what was what in terms of organs, bones, etc. By this point I pretty much know what is what...I was looking for tumors.... which I saw. I could tell that things did not look significantly worse which eased my mind some. I could also tell that there were definitely still tumors. This narrowed the extent of my anxiety to somewhere between not the worst possible outcome and not the best possible outcome.

As expected it was nearly four until we saw the doctor (even so I still didn't finish the hat I was knitting and am so close to finishing). He came in and tried to make small talk. My dad impressively was able to shoot a little shit with him, asking him how his ski trip was..... When the doctor asked me how I was all I could respond was "that depends on what you have to tell me." With a big smile on his face he assured me that he likes what he sees. I tried then for a brief moment to shoot some shit with him, to no avail....show me the pictures.....

As he walked us through the comparison of the last scan and the new scan we could all see that each tumor or tumor cluster except maybe one was smaller or gone. Where there had been three for example there were now two and they were smaller than before. Where there had been one there was none. He showed us the pancreas and covered up the liver and said that if a radiologist saw what was on the screen they would call it normal. In order to cover his but he made sure we heard that he cant say that the cancer on the pancreas is gone because there could be microscopic cancer cells still present but I am pretty much dismissing this.

When I asked him what he would suggest at this point he said that even if I wanted chemo he would not recommend it. YIPPEE. He asked what the alternative stuff I had been doing is and I fumbled through an answer. I definitely need to get better at explaining the whole tong ren thing is. How do I explain to a doctor that I go to classes where we whack on dolls and where I am surrounded by people who believe that I am going to live and be healthy.

My blood carries positive messages. In most ways it is testing blissfully average. Although I value individuality, in this case I really like average. The tumor marker, chromogranin which seemed be telling important messages that the doctors couldn't understand and suggested ignoring, continues to speak its truth. The number went from over 500 to 15 to 12 and now to 3. You might have a 3 too and you probably don't have cancer. Three.... normal...... When it was 15 was when I was in the hospital, terribly constipated, taking lots of narcotics, and pretty much scaring everyone into thinking the end of my life was coming soon. Me and my family, especially my dad suspected that it might hold some positive information. Trouble was the number and my physical condition did not seem to line up. At that point I had started some tong ren, tuina, and acupuncture with tom tam. Was it already working? There is no way to ever know and so I hope that I stop thinking about it but what would have happened if I didn't get so scared that I accepted chemo. Would I be in the same place that I am in now? Would my story be more true to the story I always imagined would be mine if I ever got cancer (maybe this should be a lesson to anyone who imagines what they would do if they get cancer..... stop imagining things like this!!!). A story in which there was no doubt that pumping toxins into my body didn't help me heal because I didn't choose to pump toxins into my body. Pain and fear are strong forces. Ones in which I hope to learn to coexist more peacefully with.

When I asked the doctor when he would schedule another scan he said, knowing fully that I would not do what he suggested, he would recommend scanning in two months. I do not imagine that I will do this. The plan I think will be to do blood tests looking at chromogranin, veg-f and some other factors that were originally tested by the naturopath who I didn't stick with (all which came back normal in my blood tests now and were not normal before). I will trust that the color of my urine is worth noting as in the last month it has finally returned to normal. Mostly I will hopefully learn again that if I feel well I am well. This morning for the first time in 5 months, when I felt sensation in my stomach and liver area I smiled and knew there was nothing to worry about and that probably it was more tumors shrinking (I tried to convince myself of this before but I never really bought it).

As my life seems to be having potential for more longevity I wonder what all this is doing to my family. The last five months have been crazy.... CRAZY. Hopefully whatever they are learning on this crazy journey will ultimately help them be healthier and stronger and it will outweigh the stress and anxiety that has become a frequent visitor.

This cold seems to have served its purpose and seems to be agreeing to leave quickly. All of this tong ren and other things seems to be boosting me to a higher state of health than before I knew I had cancer.

The excitement and reality of this news is only just starting to sink in. I was so braced fo rthe potential of news that the tumors were bigger that I am not really sure what to do with getting what I wanted. Seems like I should be having a big outward show of excitement. I am excited but my outward show is mild, smiley, robust but pretty much subdued. It will take me a while to integrate this stage of the journey.

What is healing anyway?



    Hi Tamar! This is Sandra from the Haverhill Class. Love your blog- I ESPECIALLY LOVE THE GOOD NEWS!!! You are such an inspiration to me. Tong Ren Rules!!!!

  2. Tamar, this is incredible news! Wow!!!! Big yays and whoopin, or subdued "yeah that's cool"s. Can I say "cool"s or will the grammar police get me?

    Dog knows best,

  3. PS I noticed your lovely purple knitted hat today..is that the same hat you were referring to in your blog? I wanted to comment on it but I was so excited about your wonderful news that I forgot to. Great looking hat - it makes you look very stylish :-)


  4. Tamar! Yay! This is such wonderful, wonderful, wonderful news. I am so happy! I have been thinking about the scan a lot lately too and I can imagine that it must be very empowering to now feel like you don't have to freak out about little body changes (stomach sensations and the like)- and to feel like you have some control back. And it's awesome that the doctor agreed about chemotherapy.

    I can't wait to hear about your experiences with Quang and I hope the tea is not too stinky.

    Love, Michele

  5. tamar,

    i've been following your blog since apple sent me the link this fall, always wanting to comment but feeling too shy. your sharing of your journey with all of this is deeply moving to me...i am in herb school right now, studying plants and medicine and our bodies, and everything that you write about inspires me to want to learn more and more, and makes me have faith that there are so many different ways for us to heal ourselves and each other. thank you for sharing your experiences with all of us. i am so very happy to read this happy happy news!!! i will keep sending healing thoughts your way...


  6. SOOOO wonderful Tamar! My heart is filled with joy. Love you.