Writers note: This entry was written in two parts – about a week between them. So it has a major jump half way through.
So I am sure that you are all missing wife’s witty prose by now, as am I. This cold that she has had for over two weeks now just won't seem to go away. It is one of the drawbacks of cancer - suppressed immune system. Her mother has also been very sick this whole time. This has added a new challenge as Eileen was one of regular babysitters for Sadie, but also such a major emotional support for Elisa (well for anyone around her, including me).
So you are all stuck with me for a bit longer. As I think back over the couple of weeks I am not really even sure where to start. Time, when you have cancer seems very different. A week seems more like a month, a day - a week. Not in productivity however (we can't seem to get even the smallest things checked off our to do list), it's more in exhaustion. At the same time the days are slipping by quickly. To quote David Eggers "I am losing days like pens in a couch". Elisa and I were talking about this the other night. When we first got our diagnoses we both had this thought that there would be lots of long boring days of laying around (feeling like shit of course), surfing through bad television and reading books. Let me tell you that the cancer vacation package you see advertised on TV is a scam! We are having a hard time even making room for naps (our doctors are not terribly excited about this by the way).
So I guess let me start with some good news! Yes, that is right: GOOD NEWS! I have finished my first round of chemotherapy and had my MRI to check my progress..... My tumor has shrunk! Shrunk enough to make my oncologist smile!!! I even thought I might get to skip ahead in my treatment, as if I had aced an advanced placement test for a college credit. No dice. This does however mean that the tumor has been very responsive to the chemotherapy, and will most likely respond well to the next stage of treatment too. So now I have been approved to move onto radiation and chemo. I start Monday. I will have radiation five days a week for five and a half weeks and have a continual infusion of chemotherapy the whole time as well. I feel really good to have finished the first stage of the treatment. I feel like progress is being made. I have to admit here that I am a bit nervous about this next stage. Having the bottle of chemo attached to me for the two day infusion was not particularly fun so I can only imagine what it is going to be like having it hooked in for almost six weeks. Since the needle that infuses the chemo is only held in place by a bandage, it cannot get wet. This means no showers folks. They now sell these patches you can place over the port area to prevent water from reaching the dressing that might splash up on it, but you still are not allowed to have water directly hit the area even with the aqua guard. This is particularly annoying for me, as Elisa will attest too; I love to stand in the shower. It is one of the more relaxing times of the day for me. So it looks like weeks of sponge baths are ahead. Among the many lessons that I am taking away from having cancer: a new appreciation for indoor pluming.
Here is that major jump in time!
So cancer does not seem to give a fuck about your plans. The prior part of the post was written last weekend, and a lot has happened since that made finishing it impossible. So I am just going to make the transition without a CNN worthy segue.
On Monday morning I was in the shower, taking my last regular shower I was talking about earlier and Elisa was mediating in the bedroom. When I got out, I heard Elisa call out to me faintly. I could tell by her voice something was wrong. I ran to the bedroom to find her lying down, crying on the bed. There was blood on the pillow under her head. She was confused and wasn't able to tell me what was happening except that her tongue hurt and that she was nauseous. She opened her mouth for me and her tongue was incredibly swollen and bleeding from a couple of different spots. Then I noticed the large swollen red area on her head. I don't think that there have been many times in my life when I have been more scared or felt as helpless. She told me she didn't know how she got on the bed and that when she woke up she was very confused about why she felt bad and was trying to figure out if she was remembering correctly that she had cancer. I called her oncologist and got us ready to go to the hospital. Skipping over some details, two hours later she was admitted to the ER. Her mother was with us now and so we waited as they took blood and started to run tests. I had to leave shortly after they admitted her to go to get my first round of chemo and radiation. I was extremely frustrated and saddened that had to leave her side to go to my treatment. Stupid fucking tumor.
My plan was to come right back after my treatment was finished. Again, cancer does give a fuck about your plans. When they ran my blood work (they always do this before chemo) my white blood count was very low, almost to low to start, but they gave me my seven-day infusion bottle. However they told me that I could not risk going back to the hospital to see Elisa. My heart sank. I was not even going to be able to help comfort my wife. I didn't know I could feel even more helpless than I did when I found her that morning. This is where I would write a string of curses to express my frustration, but you get the idea. So I was left to go home and wait for news about her. Sadie was going to home from daycare soon. The news was scary. She had had a seizure. They wanted to run an MRI to see if there was spread of the cancer to the brain and if that is what had caused it. They were also going to admit her to the hospital overnight. Her father and mother were there with her, so I know she was in good hands as far a support. So now it was the waiting that was driving me crazy. Luckily it is impossible to be around Sadie and not feel joy, so my spirits were lifted when she came home. Our dear friend Tanya came over to stay the night and help out with Sadie. They would not get the results form the MRI until the next day. Elisa's tongue was too swollen to talk, so we texted each other our goodnights.
In the middle of the night Sadie came down with a fever, luckily not too high, but enough to make her miserable and so I brought her I to bed with me to sleep. She tossed all night. So there would be no daycare the next day. I had radiation again in the afternoon so cousin (and saint) Rachelle took the day of from work and watched Sadie. By late morning the MRI results came back clear! Huge sigh of relief! However during the night her white blood cell count dropped to a critical level. They moved her to a private room and all visitors had to wear gowns, gloves and face masks due to the risk of her catching anything from them. They gave her some meds to bring her levels back up but she would have to stay another night in the hospital.
Meanwhile the doctors told me I was still not allowed to go see her and that I should not be around Sadie either until she was better. Really?!!! WTF! Now I can't help either of my girls. I need a stronger word for “frustrated” here! So Sadie stayed with Rachelle and her grandmother that night.
Sadie slept well and had no more fever that night, she could come home the next night. Elisa's white blood count was back up and she would be home that night too. Big smile! (We are up to Wednesday night now). She would have to go in for her chemo the next day. Of course they would have to check all her levels to make sure she was in good enough shape to handle the drugs first. So Thursday when they tested her blood they found that her red blood cell count is critically low. They only gave her one of the two chemo drugs. They are going to have to give her a blood infusion on Friday to get her levels back up. Again, WTF! Also they have started her on anti seizure meds and is not allowed to drive or be alone in the house when she takes a bath for three months. So that is where we are now. I am on my way for my fifth round of radiation and to have my white blood count checked again and Elisa is sitting through a six-hour blood infusion. It has been a long week. Here's hoping next week is a little less interesting.