Saturday, May 10, 2008

Bad Day, Part One

Yesterday it all became real. I had been scheduled to meet with an oncologist, but that was canceled until after further testing. Instead, I met with another surgeon, Dr. Sinard, who would perform the reconstructive part of the surgery. (Before I get into that, I need to make one correction - I mentioned earlier that I would have a sentinel node dissection, but it would actually be regional and involve a few more nodes - still no major neck disfigurement.) Dr. Sinard wanted to see me to examine my forearm, from which he would take the tissue for transplant into my mouth. He would take a flap of skin from my forearm along with the radial artery (which helps the ulnar artery supply blood to the hand) and a couple of veins. The flap would become the new section of my tongue and the blood vessels would be connected to existing vessels in my neck for blood supply. Then, skin from my leg would be used to reconstruct the forearm.

All that sounds great, doesn't it? They can get all the cancer, and I can live! I should be excited, right? It's just that it's hard to be excited about living when I've never really thought this would kill me. The surgeons are so focused on preserving life that what must be suffered by the patient and the resulting quality of life is not really on their radar. The surgery would take 10-12 hours. I would be in the hospital for several days with a tracheostomy (air supply via tube inserted into the trachea via the neck), because breathing would be compromised for a few days by swelling. I would have a nasogastric feeding tube for a couple of weeks, because swallowing would be impaired and have to be relearned to some extent. Dr. Sinard says it would never feel the same, but I would adapt to the new sensation. Again, my speech and singing might be affected and might not - they just can't say for sure. Right now, it looks as if the tip of my tongue, which controls articulation, is not affected. However, if it does have cancer cells once in surgery, they would have to excise it as well. They estimate that I would be out of work for about a month. And, to top it all off, my tongue would be hairy (what?!), because it's a transplant from the forearm. Terrah said, "No problem, we'll just get that lasered at Elan." :) Laser or not, that's downright mangy.

So, you see, I was never really scared of dying from this, but tracheostomy, feeding tube, and hairy tongue - that's scary, because it's all imminent if I choose surgery. Death is just out there somewhere, but is doesn't cause much fear in the present. It's exactly the opposite for the surgeons. They see possible death and immediately think: Cut cancer out and save young man's life. That's their job. So, to them, feeding tubes aren't a big deal - they're just part of the process, and if you want to live, you just have to get over it. Don't get me wrong, they've been very compassionate, but I can just see the cogs of logic turning in their heads. Finally, if the dissected nodes are positive for cancer cells, I will have radiation, as well. If not, once the surgery is over and I have recovered, I can go on with my new life.

Chemotherapy and radiation without surgery are still an option. These surgeons do not recommend it, because there simply aren't enough people using it as first-line treatment (in cases like mine) to give me a good idea of my life expectancy. The absolute cure rate five years post surgery is about 65%. I do have an appointment at the University of Chicago where they are using chemo and RT as first-line. I'm not sure they would do it in my case, though. That appointment is on May 27th, so I'm not sure I want to wait that long. I am going to ask my surgeons to have a conversation with the physician there about my case and see if there is really a need to make that trip.

Next steps:
-Tumor board meets on Monday to review my CT and discuss my case. They will call me Monday afternoon with their final recommedation.
-I have an appointment on Monday with a radiation oncologist at 10am.
-I need to decide soon on a treatment plan. Vandy is willing to do either.

Things to pray for:
-I continue to have pain in my mouth, which makes it painful to talk and eat. It is unclear if the cancer is irritating nerves or there was nerve agitation in the previous surgery. It didn't hurt when I first got my news, because I was still on prednisone. My mouth used to hurt only when food contacted the lesion - now, it is more constant. It is unclear if this will resolve with surgery or continue. So, obviously, there is stress now talking all day at my job and eating, as well as contemplating whether this pain will persist post surgery (if I choose surgery) while there are many other discomorts.
-That God will guide my decision-making over the next few days and weeks.

Daniel prays a passionate prayer in chapter 9. My favorite part is in verse 18 when he says, "We do not make requests of you because we are righteous, but because of your great mercy."

Indeed, He is merciful. I have not forgotten that.

See Bad Day, Part Two - the story doesn't end here.

1 comment:

Anonymous said...

Hey Daniel,
I can almost hear you singing "Straight Tequila Night"
throughout Andy Holt right now!! I can relate to how you are feeling. In Nov. 2002 I found out I was pregnant with our precious Luke. My best friend Julie was also trying to become pregnant, but without success(she had no children). In Feb. 2003, with her pregnant best friend by her side, Julie went to the oncologist to find out that there was no way to save her reproductive organs-they were more worried about saving her life. Julie's family and I are all worried about her dying at the age of 27, she is devastated at the fact that she would never carry her own children.
The death factor, like you said, wasn't really what scared Julie-but not being a mother did. Fast forward
5 years and our precious 5 year old boys will be starting Kindergarden in August. Julie recooperated from radiation and a very difficult hysterectomy and adopted a beautiful baby boy from Russia who is only 9 days older than Luke. They are now best friends as well. Isn't God great? Again, we are continuously praying for you and we love you. I am keeping up with you daily with your blog.
love ya,