Wednesday, December 17, 2008

Chemo #4

Today was a bit of a roller coaster...

I went to get my blood work around 10am this morning ... not bad, only a few people in front of me. After that I went to talk to a social worker (Joanne - who may actually be reading this). This is a difficult thing to summarize without writing a I'll do a really short version. Essentially, there are 3 things to work on...anxiety, sleep and guilt - all of which go together when you think about it. She gave me a few options which I will think about, many of which are provided by hospice, these included:

  • speaking with her on a continuous basis - I really like this idea.

  • a lifestyle changes class starting January that runs for 4 Wednesdays for 4 weeks - this is a class about transitioning from a person to a patient. Frankly - this scares me. Based on what Joanne said, she and another social worker act as facilitators to what becomes a patient driven discussion. What I am afraid of is hearing a bunch of people talk about how bad their situation is...i know that I have a good prognosis and I don't think I want to hear how bad other peoples are. Ug. However, maybe this is some reality I need to be exposed to. Surely they created this class for a reason (to fill a need???). What might be good about this is to hear other people having similar problems / concerns. Ack - I don't know.
  • Yoga - maybe.
  • Radiant touch - Apparently this is like reiki. She offered to come do this during my chemo - but I said no. I don't like being touched or massages so doing that does not appeal to me.

  • I also got a schedule of all the other things going on with hospice that I have yet to look at...

So I have some decision to make...If you have experience with any of this...let me know.

Diletta and I then met with Dr. Hamm, my Oncologist. She is pretty cool - a great doctor that really takes the time. I am lucky to have her. Anyways, we asked all the questions I wrote about yesterday and got the following info (btw - it's late and I have chemo this will be brief - maybe...):

  • cure vs remission vs Overall survival vs etc...what's the deal? This is not straight forward. Basically I have a 60-80% chance of being in remission at the 5 year point. There is not scientific consensus as to whether or not getting to the 5 year point means cure. Some believe it does and others do not. Dr. Hamm noted that this is a very difficult cancer because it is so rare, which leads to very little research. If it does relapse, it will likely come back as the same cancer. She believes that I am likely in remission right now (it is not growing any more) and is confident that my CT scan in January will be all clear.

  • One of the problems with follicular, is that it is a mix of large and small cells. The large cells are fast growing/replicating and will react well (die) with the chemo. However, they don't know if the small cells are cancerous and if they are, they are likely a lower grade and slow growing. This means that the chemo may not work on them because it can take much longer for them to grow/reproduce. So, if it does come back, it can be in 5 or 20 years as a low grade cancer.

  • Clear as mud.

  • Regarding the types of testing that can be done post treatment II listed them before) some of them were already done and some might get done post treatment...we'll wait and see.

  • Blood Counts - all good. My counts are high enough for chemo Thursday, and are higher than in the past. This is great. Also, regarding my Red Blood Cells other ones that I don't remember, I am good to exercise and be active. This is great and I went to hockey it wiped me out. soooo slow.

  • Side effects - I still have tingling finger Dr. Hamm said that we would reduce the Vincristine to 1mg from 2mg. This is part of the CHOP-R and she said that of all the drugs the vincristine is the least effect so she has not problem reducing it.

  • We asked about all of the anxiety I have been having and if an anti-anxiety drug would be good for me - namely, the Ativan. She basically said NO. She is hesitant to give such an addictive drug to a young person. She doesn't want to create an addict. I am very much ok with this - I think I can find other ways to reduce my anxiety. Exercise will be one for sure!!

I am sure that I am missing some details, but time to hit the sack and get ready for chemo.

As for the shirts...they won't be ready until Monday - too bad because I really wanted people to have them for Thursday. Oh well, there are 4 more chemo sessions.

Pictures are always great!

Born a Leaf fan - she doesn't have a choice (yet).

...and the best for last!

1 comment:

KJR said...

Jeff, I am glad you had a good meeting with Hammy.

Personally I do not like the sounds of that course about going from person to patient. Abviously I do not know anything about it, so maybe I am speaking out of turn. I remember when I was thinking of joining the survivor thrivers boat racing group (hopefully you know what I mean, breast cancer survivors that row). anyway, a another survivor told me that she does not join this group because they are "living with cancer" and she choses to live without it!!!!

I understand that you would like to talk to people who are dealing with chemo etc now too and they could be a help to you. This would be good, I am sure. But transforming to be a "patient" is like giving in!

Surround yourself with healthy, upbeat, positive people with the right attitude!

Maybe there are other options like meditation. I think this would help with anxiety too. Meditation is good for the soul, no matter what you are faced with.

As far as cure vs survival vs 5 years vs 20 year, there are no guarantees in life for anything. Cancer or no cancer.

Continue to kick the ass out of cancer!!!!!!

You will be endure!

Love Kym