Dear Friends and Family,
It has been a long time since we've provided an update on our situation. Mostly that has been because I've been in the hospital for most of the last three weeks.
As I mentioned in a previous update, we had reached "best response" with the current chemo we had been using. The protocol is to treat two more times past this best response period, so my final chemo of this type was administered on July 28 – 30. We're not sure why, but this particular round really hit me hard and when I went in for a follow up visit on August 5, I had to lay on the exam table because I was too tired to sit up in a chair. We had also had a CT scan on August 4 to determine if the cancer was growing or staying relatively neutral in size. Unfortunately, it showed that the cancer was slightly more prevalent in the liver, although it didn't appear that the liver itself was any bigger. However, external exams by a couple of different doctors, plus my own opinion, didn't agree. It appeared to us that it was definitely getting bigger.
Anyway, once my blood counts came back while I was waiting to see the doctor on my August 5 appointment, it showed that I was severely anemic and needed a blood transfusion. By that time in the afternoon, the only way I could get an immediate transfusion was to be admitted to the hospital, so that is what they did. In the hospital, however, they began to discover a number of interesting things, primarily that my electrolytes – the chemicals that balance out the way your nerves work – were extremely low. The two they were most concerned about were potassium and magnesium. Imbalances in either off these electrolytes can be very serious and can also cause dizziness, disorientation, and a number of other side effects. My magnesium levels, for instance, were so low that I was in the range where they worry about major seizures occurring. So I spent a couple of days more in the hospital while they boosted my electrolyte balances and we discussed what to do about treating the cancer from this point on.
Wanting to be aggressive and give myself the best chance of beating this disease, I was interested in moving to the next agent, and Crystal agreed. Our physician concurred and suggested we give ourselves the best chance by moving to the next agent as soon as possible, so early Thursday morning they started the next agent. Since I was in the hospital they saw no reason not to start it around 1 am in the morning. By Friday, with my electrolytes back in balance and with the extra blood I felt positively energetic so they discharged me from the hospital with a number of supplements to keep my electrolytes up and we went home.
Friday and Saturday we had a number of family members visit and we watched the opening ceremonies of the Olympics as well as the first few events on Saturday. Already, though, I was exhibiting some strange behavior. First, I developed a fixation with the 7th Harry Potter book and became convinced that I had to read it immediately. Even though I had difficulty because of more dizziness and an inability to focus on the page, I skimmed over every single page (starting about 290 where I had gotten to previously) by the next morning. I'm not sure that what I did qualified as actually reading the book, but it satisfied my obsession. All day Saturday, however, I spent sitting in various locations throughout the house with a relatively vacant expression on my face, and when anyone asked me a question I simply couldn't answer – I couldn't come up with words that made any sense to me or to them. Needless to say, this was very frustrating to Crystal and everyone else who was trying to help me recover from the hospital and expected me to be coherent. The worst was Saturday night when I could not go to sleep because I was certain that there was no way Crystal could finish her lesson for church the next day (she teaches the 8 year olds), if she didn't print off the lesson immediately. I lay in bed for about two hours before I got up to print off the lesson for her and discovered that I couldn't – I couldn't even think clearly enough to remember how to get to the church's website. At that point I began to panic completely, woke Crystal up, explained my concerns about her lesson, and asked her to please come take care of it so that I could rest. To her credit she realized that I wasn't being rational and simply got up, printed it off, and reassured me that everything was well in hand.
This kind of fixation and panic over something relatively minor should have been a major clue that something was really wrong, but of course, I wasn't thinking clearly, so that didn't occur to me. A few hours later, however, Crystal reached over to see how I was doing and discovered that I had developed a fever (depending on which thermometer we used, it was either 102.7 or 104). Either way, it was serious. Crystal called the after hours hot line for the cancer office and was told to bring me to the ER. My brother, who is an internal medicine doctor and had been visiting, agreed with that course of action so the two of them loaded me up in the car and took me back to the hospital. This was Sunday, August 10.
Once there we found out that my white blood cell count had dwindled to practically zero, so I literally had no immune system at all. The fever was what is called a neutropenic fever and is caused by the fact that I was completely unprotected against any infection. In fact, either before or after I arrived at the hospital I picked up a staph infection in my blood and I've been on antibiotics for the last two weeks to get rid of it. Luckily, it wasn't one of the serious strains of staph, but it was still a somewhat dangerous version.
In addition to my immune system being compromised, they found that my electrolyte imbalances were completely out of whack again, and that I was even more anemic than before. Apparently, the mixture of the two chemo agents so close together was simply more than my body could handle, even though the agents don't normally interact and compound each other's negative effects, they did in my case and threw my entire system out of line. At many points during the first few days I was in bad enough shape that I could easily have died from one of the many complications.
By the time I was doing well enough to leave the hospital on Wednesday, August 20, we had a difficult choice to make. Should we continue with the new chemo, which only gave us a 20% chance of the cancer even responding to the chemo, or should we accept that this cancer is incurable (it has a 97% mortality rate in the first year after diagnosis, and that assumes you are being treated) and stay away from the chemo – which should also help me stay away from the hospital? As you can imagine, it was a very difficult choice to make. Either way, they weren't going to let me try the new chemo for at least another couple of weeks simply because they needed to make sure that I had recovered enough to handle the effects of another dose.
Given the odds that the new chemo would work (not very good), and my desire to have a better quality of life and be able to interact with my family – especially the children – without the problems of having side effects such as being incoherent and disoriented by the chemo, we decided to go off treatment and transition to hospice care at home. Plus, I don't want my electrolyte balance out of whack any more – it is rather disconcerting to not be able to think clearly or express yourself. Plus, I would really like to stay out of the hospital if at all possible.
I don't know how much time that leaves me (most doctors give me 2 months, give or take a few weeks). Some days I feel almost normal mentally, although physically I continue to be completely fatigued and unable to do many of the things you would consider normal. Other days, I don't feel so great in any way, although I haven't been delirious or incoherent like I was before going into the hospital this last time. I expect, however that I still have a few months, and I'm using them as best as I can to spend time with my family. Crystal is also encouraging me to write and/or dictate letters to each of the children for important events in their lives, and I've done some of that as well. I need to spend more time on that in particular since, with 6 kids, I need to make sure that they all get letters from me. I want to remain a part of their life even if I am going to die.
I want to thank all of you who have stuck with us through this trial. Until this happened I had no idea how many friends Crystal and I had made, and I love you all for your kindness, generosity and love. I'm not sure when this will come to its close for me, but that really isn't the most important thing. What is more important is that Crystal will be left to bear the burden of raising 6 children by herself. Luckily, she'll have the help of family and new friends we've made here in Utah, but that will in no way make up for me being gone. Please remember her and our children in your prayers. I love her so much, and the children too, that it is breaking my heart to know that I will have to leave them and that I can't do anything about it. My only consolation is knowing that the Lord will help take care of them, perhaps through your efforts or the efforts of others we haven't met yet. Either way, thank you all for all you have done, and again, please keep my wife and children in your thoughts and prayers.
With Love,
Matt Budge
