Chemo

So, my husband has cancer. Not the good kind of cancer…the bad kind. The kind that is so rare, there are no studies, guidelines or expert consensus. The kind oncologists treat based on “intuition”. For an oncologist to use the word “intuition”? Not reassuring.

Last week, after my husband posted he didn’t need chemo for all the world to see, I got frustrated. I was frustrated with him for writing that blog. For leading all those that care out there in the universe to believe that everything was okay, he was cancer free and on the road to recovery. This was misleading. Jeremy is an optimist. I’m a realist.

My interpretation of the oncologist visit was different than his.  I heard the oncologist say he didn’t know what to do, he had to consult. His initial response was to not necessarily do chemo but that was based on a stage 2 colon cancer. Jeremy doesn’t have colon cancer. He has stage 2 adenocarcinoma of the appendix, colonic type. He was going to consult and get back to us by Friday. He did.

On Friday we got a phone call from his assistant saying he’d like to make an appointment with us. He had consulted and decided that Jeremy needed chemotherapy. No details. Nothing else. You can imagine what the weekend was like as we waited for the appointment today (Monday). Full of anxiety, sadness, grief, loss of control, the unknown, etc. It wasn’t a relaxing weekend.

I’ve been feeling really isolated the last week. Jeremy was home from the hospital, he posted he didn’t need chemo and it seemed like all the sudden everyone thought, “Oh, he’s cancer free, no need for chemo. Everything is okay now.” Well, on my end, everything was not okay. I suddenly had a husband and a 3 year old to take care of. The roles around the house that we normally divide were not divided. Jeremy has been recovering from 2 major surgeries within 10 days of each other. He’s not able to do anything other than walking from the couch to the bathroom and back. Suddenly I became a caregiver and a single parent with a husband who has cancer. EVERYTHING IS NOT OKAY. And please stop asking me how I’m doing unless you actually want to know how I’m doing and then I’ll tell you how I’m doing which is NOT OKAY!

Not only were we waiting the weekend to go to the oncologist appointment, but meanwhile, Jeremy’s 10 inch incision was starting to dehisce. For those non-medical people out there it means open. Not good. It began to open more and more each day, not only open, but ooze fluid, fluid that smelled and looked smelly. His incision is not healing well. So, instead of one doctor’s appointment today, we had two. Now I get to be a wound care nurse and pack my husband’s open wound with a wet dressing twice a day. Not my idea of fun. Or his.

Then came the oncologist visit. Jeremy needs chemotherapy. The oncologist consulted with the local tumor board, an oncologist at MD Andersen and another oncologist that I was able to find at UCSD who specializes in rare appendix cancers. They all said he needs chemo. The reasons: 1) he’s young, 2) the tumor was poorly differentiated and aggressive (bad), 3) there might be cancer cells that we can’t see, 4) we want him to live, we want him to live, we want him to live.

This is what it’s going to look like. He needs another surgery to place a port in his central vein (surgery #3). This is where the chemo will go. The treatment will last for 6 months. He is going to have a regimen that is used for colon cancer because that is the only reference point anyone has to go by. Not comforting. In fact, every time the oncologist referenced colon cancer in the visit, I wanted to scream, “HE DOESN’T HAVE COLON CANCER, HE HAS APPENDIX CANCER!!!!” Which I actually did several times. The oncologist is a sweet man and seems to get it. It’s so frustrating to have no data to work off of. He is using the only reference point he has, which is colon cancer.

Every 2 weeks he will go in to the office, the first day they will infuse the treatment through his port. He will be there for about 5 hours. He will come home with a pump attached to his port which will infuse the rest of the chemo treatment for the next 2 days, then he has to go back in and have the pump removed. This process will happen over and over again for 6 months. It will make him tired, probably nauseated and he might lose his hair. Not what we envisioned our next six months looking like.

The oncologist doesn’t want to start treatment until Jeremy is healed from his surgeries. I agree. It doesn’t make any sense to beat someone when they’re already down. We have a family vacation to Aruba planned at the end of July. Hopefully by then Jeremy’s incision will have healed. The oncologist believes in the power of positive thinking and rejuvenation, he wants us to go on our vacation and refuel.

So, chemotherapy will likely start the second week of August.

I’m blown away by Jeremy’s attitude. He is positive, hopeful and has accepted this with such grace. He is a better person than me by yards. I know his attitude will carry him through the hard time to come. I can’t say I’ve ever had more respect for another human being than I do for my husband right now. I love him more than I could ever say.

This is all so fresh and I am still absorbing and assimilating the last 3 weeks. I’ve been going through such extremes of emotions; from anger to frustration to sadness to guilt to anxiety to fear. It’s quite amazing how things change in an instant. We now are living in a life with cancer, but not for long…

Cancer sure does put things into perspective.