A Day in the Treatment Room

Yesterday was my IVIg infusion which I get in the chemotherapy room at my oncologist’s office. I am almost always the first one there and the last one to leave as it takes seven to eight hours to drip the medication into me. The actual infusion is quite routine. I begin with two Tylenol tablets followed by a bag of liquid Benadryl. By the time that finishes I have quite a “buzz” going and I definitely could not get behind the wheel of a car and be safe. Of course, my wife and kids may argue that is not that far off from my normal state of driving lately. I don’t know what they are talking about. It is the other crazy drivers on the road…but that is a topic for another blog entry someday. The Benadryl also gives me some very annoying restless leg/restless foot syndrome for and hour or two.

After I get high, I then get a bag of my “friend” – NOT – the steroid Solumederol (methylprednisolone). This stuff causes my blood sugar to go very high, causes me to retain fluids, makes me VERY moody, and causes sleeplessness. In fact, I was still awake when Cheryl got up to go to work this morning. I then went in and laid down for a little while until I had to get Jimmy up for school and I have been up ever since.

After the steroid, I finally begin the IVIg infusions. Yesterday it was six bottles and that is what takes so long. They start it slowly to make sure I don’t have any reactions to it and then after an hour or so it gets bumped up to normal speed, but still slow. IVIg is a human blood product. Also called intravenous immunoglobulin, intravenous gamma globulin, it is treatment in which blood proteins or antibodies, taken from many donors, temporarily replaces the antibodies (immunoglobulins) that my own body has lost due to my disease. This keeps me from getting constant infections like I was getting last year before I started this therapy. Repeat infusions are required to maintain adequate levels. I am on a four to six week cycle and it depends on my monthly blood test results as to when I actually get it. I was scheduled for last week, but this time my levels held pretty well and I was able to delay it for one week. It is a very costly treatment because it can take up to 10,000 blood donors to make one treatment! For many people, the high cost of treatment is often prohibitive as not all insurance companies pay for this therapy. I have only seen the bill for the first time I got the treatment and that bill was over $17,000! That is $200,000 a year! And I will have to have this the rest of my life! I am so blessed that I only pay my co-pay. A young man in my church also needs IVIg but for a different disease problem and he has to pay $500 as his share for each treatment. There have been times in recent years when it has been in very short supply and nearly impossible to get. As the nurse said yesterday, if people ask what they can do to help, tell them to donate blood. I would encourage everyone who is able, to give the gift of life and donate blood on a regular basis.

The day goes by pretty quickly as I nap off and on due to the Benadryl, I eat my lunch that I prepared at home before I left, and if I am lucky, I have some wonderful conversations with some of the other folks who occupy the other chairs during the day. If not, it is a period of time I call “liquid meditation.” A term coined by some good folks over on the CLL Christian friend’s site.

This is the part of the day that is not routine – meeting the different people going through cancer treatment. Over the years I have been going there, first for eight months of chemotherapy and now a year of IVIg treatments, amazingly I very rarely see the same people. It is a fairly small room with six reclining chemotherapy chairs in the main part of the room (three on each side of the room) and two more over in a little alcove. Each chair has a pillow and blankets are available as most of us get cold with all the liquids pumped into our veins. There is a TV that is available in an upper cabinet on the opposite wall from the windows, but in all the times I have been there, it has only been on once. I guess not too many folks are interested in watching a soap opera when toxic chemicals are being pumped into their bodies and they are living in their own real-life soap opera.

Because I am there all day, I take the chair to the far side by the window so I am out of the way, but I can still talk to anyone so inclined. I have had some amazing conversations with folks. Some who are scared to death, some who are so very sick and many who have amazed me with their courage and sunny outlook on life. There have been a few sourpusses too, but I certainly can’t blame them under the circumstances. Last month there was a fellow across from me who read his Bible the whole time and I made several attempts to start a conversation to no avail. There have been some very tragic cases and folks I promised to pray for. Several months ago there was a lady with a cancer that had returned and she had three small children under eight years old. She was on a last ditch attempt at an experimental chemotherapy, but there really wasn’t much hope as it had spread throughout her body. She was only given a couple of months. It brought tears to my eyes and it still does. I still think of her quite often.

Yesterday, most folks who passed through were particularly non-talkative. The lady who came in right after me took the chair directly across from me and it was interesting to watch her set up her space. She has obviously been undergoing chemo for some time as she had lost most of her hair. She was wearing pink shoes (don’t know what you call them, but the rubber type with holes in them) and she had multiple pink ribbons attached, so I assume she has breast cancer. She draped the chair in a beautiful blanket that had angels embroidered all over it. Then on the two arm tables she stacked some books, a portable DVD player, some drinks, an iPod, and a few other things I couldn’t tell what they were. She took a very long time setting it all up and she kept her back to me the entire time. She then crawled into the chair, put on her headphones for the iPod and closed her eyes. Very clearly she was not interested in any conversation. In fact, she barely spoke to the nurses hooking her up to her meds, never made eye contact with me, and never touched any of the multitudes of things she brought with her, other than the iPod. I think she would have been interesting to talk to, but I certainly did not want to invade her space as she was sending very strong signals that she wanted to be left alone. I kept looking for an opening because I thought perhaps she was the person in the room that most needed some human interaction.

Two ladies started talking just before leaving. Both had cancers that had recurred and had now spread. Both seemed to have great attitudes. The one lady who was the most upbeat had cancer that had spread everywhere, from her colon to her skull. So why was she upbeat? A year and ten months ago she had been given one year to live. She said she knew she was going to make it at least to the two year point and her goal was to get to three. With her sunny attitude I think she will, too.

After my lunch, I read a little and then got very sleepy. All the chairs were full, but I couldn’t keep my eyes open and most others were sleeping too. When I awoke, the room was empty except for a lady who was in the chair next to me who wasn’t there when I fell asleep. She was getting ready to leave. She told me she enjoyed hearing me snore. I was quite embarrassed and apologized and told her it looked like I had chased everyone else away with my snoring. She said, “oh no, I enjoyed it. I haven’t had anyone snoring next to me for several years.” I knew there was a story there, but she was on the way out of the room and I was alone to finish up my treatment.

And so another day of treatment passed. So many folks, so many stories to tell. I just wish I could have heard them all.