Sunday, February 10, 2008

Hanging in there

Hello all! I've got a lot of news, but not ton of energy so I'll try to share as much as possible here quickly!

Unfortunately, things have not been going as planned here during the last week especially. A couple of weeks ago we had my big day of testing at Karmanos to see if I could get into a new experimental trial. It was a really long day with many appointments and tests, but overall it went as good as could be expected. It really ended up tiring me out for the rest of the week however. I guess that all of the waiting, and needles, and stress of the hospital just ends up getting to me during a long day like that and it knocks be back for a little while.

We were able to go back to Ohio then for a week and enjoy some time at home although I was really struggling with fatigue and pain. We had a fun time getting ready for and watching the Super Bowl with my sis and bro-in-law though. A pretty exciting game! We're still getting settled in slowly there and just enjoying being in our house together.

We came back up to Michigan this past Monday because I was supposed to start my new treatment on Tuesday. However on Monday I noticed that my right leg was not responding properly. It was just kind of a slight floppy feeling in my leg that wasn't quite right. I mentioned it to the doctor on Tuesday and she was concerned about it. She thought it was probably due to the tumor near my spine that we had decided not to do radiation on earlier. Unfortunately this meant that they needed to do radiation on it now to try to shrink the tumor because it is difficult to regain leg function once it is lost. This was a big blow to us because it meant we couldn't start the new treatment. The same day they got me in for an MRI of my brain and most of my spine. It was about a two hour MRI in a tube. I was ready to get out of there by the time it was done!!!

There was a possibility that they would start the radiation on Tuesday already. The radiation oncologist received the MRI results very quickly and we found that there is a lesion on the top of my brain along with 4 very small spots, the tumor near my spine that we had known about, and another growth on some nerves near the base of my spine. I've been really worried all along about this getting to my brain - so this was obviously really hard to hear. They got me set up for some radiation for Wednesday to try to shrink the tumors. We went in and did that the next day and it seemed to go fine.

However, Thursday morning I woke up and my leg was much worse. I couldn't move my foot at all and my leg was very numb. I took a shower and got dizzy and had numbness going up my right side and into my arm as well as some blurred vision in my right eye. We called the doctor and she told us to come into the emergency room. So Jess's folks took me down to Karmanos and they eventually admitted me to the hospital where I stayed for Thursday and Friday night. I've continued on the radiation and they have me on some steroids to reduce swelling on my spine. Thankfully I was able to get out of the hospital on Saturday. My leg is somewhat better, but I am walking with a cane. I have a couple more radiation sessions on Monday and Tuesday and then after that I don't know what the next step is.

This progression of the disease just came on so quickly that we're still trying to wrap our heads around it. We'll be talking with the doctor tomorrow to find out what comes next. It sounds like I still may be able to get onto one part of the experimental treament I was going to be on because that particular drug is in more common use now. However I may have to go back to the University of Michigan to do that. Basically though we just don't know where things are going from here.

This week (and month) have really been incredibly hard for us but we keep bearing up under it thanks to tremendous support from friends and family and the grace of God. We're just continuing to refuse to give up hope no matter how bleak everything looks. One of these days we're bound to get some good news! We just ask for your continued thoughts and prayers as we continue through these uncertain and scary times. It is so great to have your support. I'll try to write again as soon as we have some more information about our next medical moves.

Take good care!
Much love!
Brian

Wednesday, January 16, 2008

Good and bad

Hello again! Happy New Year, I suppose, although it's a bit late. I've been putting off writing this for a week or two because of some bad news I have to share. However, good things have also taken place since I last wrote so I'll highlight those as well.

The short story is that the experimental drug I was on did not work. The CAT scan I had before Christmas showed that the cancer has continued to grow and spread. I read the radiologist's report and it is not very encouraging. There is a lot of cancer in a lot of places, including organs. So I have been taken off of this experimental drug since it was not working. Both of us, and the doctors, had been under the impression that it was working because the lump on my neck seemed to have shrunk considerably. The doctor said that this may have been a partial response to the drug, but we needed a full response.

We were/are devastated about this. To go from total hope in this drug to being taken off of this drug was such a shock to us. We've cried many tears about this, but are picking ourselves up once again. We just would love to get some sort of good news after one of these CAT scans. Sometimes I wonder how many times our hopes can be crushed before we can't get up again. But somehow we keep managing to get up.

I will be able to try another experimental drug. I have to wait 28 days from the time I took the last drug before I can begin taking another one so I won't start until the end of January. I'll have to pass some tests (bloodwork, EKG, pulmonary function) before they let me in the trial, but they didn't think I'd have a problem passing them. So my next scheduled appointment is on the 28th to do all of these tests, see the doctor, and get another CAT scan. It is kind of frustrating just sitting around waiting while I know the cancer is not waiting. But I am thankful that I'll be able to get into another trial.

This trial will be more complicated than the last with the possibility of more significant side effects. It will include a pill taken twice daily and an infusion given three times a month. During the study I will have to go to Karmanos weekly for checkups and infusions. It is great that we are only 3 hours away now instead of 10 because we will be able to still spend most of our time at our house together (Yes, we made it to Ohio! More on this later). It will be a lot of driving, but we'll be able to stay at Jess's parents each week when we go up, so it will be a blessing to be able to see them more often.

I have been dealing with a lot of pain since the first of the year. My back went out very badly on New Year's Eve. You know me - all that dancing at the clubs! :) Ok, maybe I was sitting on the floor playing a board game. I have been on Vicodin almost constantly since the 1st because of the pain. Yesterday was the first day I was able to go without it for most of the day so that was encouraging. It's been hard though to try to think positive when I've been feeling so terribly. It has mainly been my back, neck, and sides that are troubling me. It may be cancer related. There was a tumor near my spine that showed up in my CAT scan. They did an MRI on the area, but fortunately the tumor was not compressing on the spine. If it had been, they may have radiated the area to try to shrink the tumor which would have delayed the start of the new trial drugs. I've started another painkiller that I take all of the time so that may be helping me feel better too.

That is the story as far as the cancer goes. I'll try to post another blog as soon as I start the new treatment so you all can know how that is going. Otherwise, many good things have happened since I last posted, including our move to Ohio.

Jess and I went up to Hancock and had about a week to get the house packed up and ready to move. It went well, although we decided we have way too much stuff for our own good, even after getting rid of a lot of it! Jess's dad and uncle came up to help us pack the truck and two awesome friends of mine we able to help out as well. So we got the 24 foot rental truck packed to the brim - I think Jess's dad and uncle would have been good at Tetris - they packed that truck amazingly tight! The truck was a diesel, and it was bitter cold, which of course meant that it didn't start. After a few hours, a bunch of frustration, and a few awesome and friendly U.P. neighbors, we were able to get it started and made it to Munising for the night. The next day we made it down to Plymouth and the following day we finally made it to Mechanicsburg and got the truck unloaded. It was quite a process. One of the funny parts of the trip relates to my plants. I have a lot of plants and of course they couldn't stay in the vehicles overnight. So every night of the trip we had to haul these plants back and forth. We hauled them all into the hotel in Munising on luggage racks. I think the receptionist was excited enough to have our business that she didn't mind our unconventional use of her luggage racks.

So anyway, we are settling into our house in Mechanicsburg. It has been really nice to actually be living together with our belongings under one roof. It has also been great to be able to spend a lot of time with my parents and my sister and brother-in-law. Over the holidays we spent a lot of time with my other sister and her family, Jess's family, and extended family as well. I actually felt pretty good during the whole move and during the holidays. I just feel like that whole time was a tremendous gift. I wish my new year had started without pain and bad news, but I'm glad it waited until then!

Another great thing that has taken place is that our house in the U.P. is sold. I can hardly believe it. It is such a blessing and a relief to not have to worry about the house and about paying the bills through the winter. We are so thankful that it sold so quickly and easily. We definitely did not expect that to happen in the winter, in the U.P., during a housing slump. I really believe someone has been looking out for us.

I will share another very personal thing that has happened to me over the past year. I have returned to my childhood faith. I turned my back on God and religion for many years for many reasons. I would like to think that somehow I would have arrived back at this place without cancer. Perhaps the cancer just sped up the process. I still have many doubts, many problems with organized religion. But I believe in a loving God, a caring God, a God who I will never truly understand, but a God who can bring me peace and hope regardless of the darkness of my situation. My personality or outlook has always been rather pessimistic and cynical - although I think I hid this from most people. Somehow in this darkest time of my life, when I should probably be feeling the most pessimistic and cynical - somehow I have hope. Things look very bleak for me, but somehow I continue to have hope. I won't say that I don't break down and cry and mourn the situation - I do every day. But I believe that God has given me hope and I am so thankful for that. I hope I am not preaching. I just felt I needed to share this.

I suppose that is enough for now. Please continue to keep us in your thoughts and prayers. I pray that each of you could feel hope as well, for whatever situations you find yourselves in. Life is such a beautiful thing! Enjoy it! I am so thankful for all of you!!

Take care,
Brian