Friday, January 21, 2011

Hard day

Thursday was a very hard and busy day. I just wanted to crawl into a hole and veg out but you can't life still going and you still have to go and do just like if you didn't have cancer. It is like living straddled between two worlds. Dealing with cancer in between planning for my sons birthday who turned 9 yrs old that day. Inbetween teacher conference (emotional because they talk about the future--talking about the future always gets to me) and dr appts and horrible phone call I am supposed to go about and buy the cake and birthday gift and set up the bday dinner.

Don't know where to start but just what happened first.

Learned a friend with my same cancer had bad news. I can *feel* that so deeply. It saddens me so, it feels like it could be me and what she says are my same thoughts.
She is better than me and yet she gets this news!

The GI surgeon calls *me* personally himself. At first hearing his voice you feel flattered that an important dr calls you but of course mostly it is never good when that happens. He called to say don't come to my appt on Monday if I wasn't going to schedule surgery! He said it was a waste my time. I said I didn't think that it was a waste of my time but do understand from his prospective that it could be a waste of his time. I don't think I said that disrespectfully but an understanding of how frustrating it must be for him to deal with me asking questions and not going with the flow so easily. I mean I do understand on a less life and death scale of how it is frustrating when a mom is asking me questions and not following recommendations that you think could help them. I also told him it has helped me and does help me to talk and learn about things to help me be ok with this surgery. Doing this helps me emotionally (which is just as important as being medically ok with it) be ok with this horrible surgery and horrible decisions that I have to make, at least I tried and I feel like I am the most comfortable I can be with all of this and doing these things will help me emotionally *after* the surgery. Ugh!!!!!!

I was so glad my Jedi was there to hear this phone call because it was pretty unbelievable and very upsetting to me. I think the dr knew Jedi was listening since he said "I do know you will die without this surgery." He knows using die and death doesn't phase me but does Jedi. I had been looking forward to that dr appt on this coming Monday since I felt like it would help me make the big decisions: have surgery or not, if I have it, whether I have it in Iowa City or not. I was also to take my GREAT dr friend with me who has been an angel and real person to help me understand things and let me vent since she unfortunately understands all too well about cancer.
We also disagreed on when I would have surgery, if I decided to have it. He wants the first week in Feb and I want to wait till Feb 20. I want to see my son at his gymnastic meet. Cancer will not take that from me since it has had so much else and will continue to take so much even after surgery. (People seem to think after you have surgery and chemo/rad you are all better and done and back to normal---NOT!)

So that phone call was left with the dr saying go to the gyn dr appt on Monday and then ONLY if I want to schedule surgery come to his office to see him.

(Later I will do a hilarious post about how breastfeeding counselors should use the same communication skills as drs to help new moms!)

OK so now on to the good news. That is what it is. Good news I have responded so well to chemo and radiation from my blood and scan test results me chemo dr said.

My blood cancer marker continues to be normal and still dropping even when within normal range. It has been normal since round two of chemo way back in the summer.

"I see no evidence of abnormal tracer accumulation throughout the neck, chest, abdomen or pelvis to suggest metastatic disease or recurrent disease. No abnormal adenopathy visualized on CT portion. The liver demonstrates homogeneous distribution without focal abnormality. I do not see another focus of focal tracer accumulation along the colon either
No evidence of disease throughout this study, although the study can be somewhat limited as patient had inability to drink full amount of oral contrast. I still favor that this study is relatively benign. There is a very minimal tracer accumulation about the rectum with just above background with maximum SUV of 2.5 to 2.8 No foci of significant tracer accumulation to suggest definite disease."

It is good news, right!?! Yea! I responded so well to everything! Now let's go rip me apart. It is hard to do surgery with this news but then shouldn't I do *anything* at a *chance* to live. My head is spinning at all of this and my friends news of spots on her lungs after doing everything right.

Cancer has no rhyme or reason, it almost seems it doesn't matter what you do!

I know some may be thinking it is just surgery do it, my surgery is not just the regular common surgery for this cancer, places only do about 3-5 a YEAR, it is more extensive than that and much more of a risk and high complication rate and a huge life change at a "chance", a "only hope" and those are the words that the studies use! Since they know how radical the surgery is and the risks it carries but it is the only thing they can offer. If you are reading my blog and have cancer and want more info I would share privately with you the icky parts. I know I have tried to find someone to talk to who has had this surgery and it is difficult, have only found old posts so far. So if you had this surgery you know what I am talking about please post a comment if I could talk with you or comment if you want me to talk to you more about this if you are facing the same decision.

Since I just can't decide it is really getting to me now. I hope Monday (at least talking with one of the surgeons!) I have a better idea of what to do. It is like a roller coaster, one second, minute, hour, I will do the surgery the next I won't do the surgery.

It especially is hard when I see people with reoccurrence of cancer after doing everything the dr said and I just wonder if it even matters at all. It just feels like doing the surgery is not to really better my outcome but just to say I did something, it is just about doing something.


  1. This comment has been removed by a blog administrator.

  2. This comment has been removed by the author.