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!

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,

Friday, December 7, 2007

Many changes

Hello again! I am terribly sorry that it has been so long since my last post. I'm afraid that I don't have much of an excuse. I probably can't remember everything that's taken place since my last post, but I'll try to hit some of the high points for you.

The experimental drug therapy has been going quite well. I spent quite a bit of time at Karmanos in Detroit during the first 3-4 weeks that I started going there. I have to go back to the doctors there every now and then so they can check up on my bloodwork, etc. They sure don't miss a chance to draw blood! The doctors there are nice, but we miss the U of M system which seemed a little more patient friendly. But we've learned to bring reading material and expect to spend the whole morning there. We're quite happy to be there though - still really glad that I was able to get into a trial there.

The drug I've been taking is simply two pills that I take every evening. I must say that this is more that a little better than sitting in the old infusion chair for hours at a time. Overall the side effects haven't been too bad, although they can be unpredictably bad on occasion. For example, I started developing fairly intense abdominal pains after Thanksgiving. And no, I didn't eat THAT much turkey! These pains weren't getting better so we called the doctor and ended up having to go into Karmanos and have more bloodwork and some x-rays. We ended up scratching a planned trip back up to the U.P. because of the whole ordeal. They decided that it could be a combination of pill side effects and possible shrinkage of tumors in my abdomen that was causing the pain. On top of this, I threw out my back while bending over to pick up a Kleenex off of the floor (yes, a Kleenex). So I was in pretty rough shape for about a week and a half or so. But I'm feeling much better now, although my stomach is still a little off - most likely from the drugs.

It has seemed like the lump on my neck may be shrinking. The doctors were fairly convinced of this and a number of other people commented on it as well. It's hard for me to know whether it is or not. I get frustrated because I can't tell a difference on a day to day basis. And I suppose I get impatient as well - I just want the lump to be gone now- all the tumors for that matter. But some progress is better than none and the doctors do seem to think that something is going on in terms of shrinkage of the tumor(s). We'll find out more about this in a few weeks. I have a CT scan on Christmas Eve so that will show what's going on inside of me. We're sure hoping to hear some good news!

We finally made some major decisions in terms of where we're going to live. We have been living with Jess's parents for about the past four months (except for a few weeks in the U.P.). It has been great being close to our doctors and being with family, but we were really needing our own place, our belongings, and we needed to start a home together. We really haven't had our own place since we got married back in May. We were down here getting transfusions for a month. Then we went to Traverse City to work for the summer but that got cut short with my recurrence. Anyway, it was incredibly hard to make any sort of decision with all of the uncertainty surrounding my condition. We finally made a decision though.

We decided to move to Ohio near where my parents and sister and brother-in-law live. It will be much closer to my doctors (3 hrs vs. 10 hrs) so we can actually be at home most of the time. We have purchased a house in Mechanicsburg, Ohio, and will be able to move in in a week or so. We also put our house in Hancock up for sale and believe it or not have a signed purchase agreement already - pending appraisal and inspection. So we're hoping that will all go through. We didn't even know if we should try to sell it during the winter because of the slow housing market.

We're heading up to the U.P. tomorrow, will be packing up this week, and moving next weekend. Crazy stuff. It all seemed to happen quite quickly once we finally decided what we were going to do. It's hard for me to know how I really feel about all of this. It will be great to be close to my family and have our own place. It really will - I am looking forward to this immensely. On the other hand, this move is going to be hard on me. I love the U.P. and I think Michigan is a great place to be. I'm giving up on going back to work for a really cool organization with great coworkers - at least for the near future. I'm leaving MTU and I still haven't finished up my Ph.D. - I will though! I think maybe I just wish I could be doing this all on my own terms, not doing it because of the difficult situation I've somehow found myself in. I have to admit that it all makes me very sad. I know that this is what we had to do though. I'm just praying that everything will work out, Jess can find a job where we're moving, and that I can get better as we set up our new home together.

I guess that's all for now. I will try to update this much sooner this time! I know you have all been thinking and praying for me even though I haven't been keeping in touch. Thank you so much. I hope you all have a wonderful holiday season with family and friends!!!

Much love,

Tuesday, October 23, 2007

A new plan

Howdy all. Thanks for all the supportive comments on my last blog entry. I greatly appreciate them! Quite a bit has happened since my last entry. Mostly for the good I think! After hearing the disappointing news from my doctor at UofM, we had to wait for a few days to hear if they had found any trials that I could participate in. Jess and I headed down to Ohio to be with my parents and sister and brother-in-law. We had a nice time with them despite the circumstances.

On Friday I received a call from UofM saying they had talked with a doctor at the Karmanos Cancer Center in Detroit about getting me into a trial and that Karmanos should be calling me soon to set up an appointment. Karmanos called a couple of hours later and we were able to set up an appointment for the following Thursday (last week). We were really excited about this, yet still a bit apprehensive because we didn't have many details about the trial. One positive thing was that the Karmanos doctor had told my UofM doctor that this particular drug had great results in several melanoma patients they had treated.

We spend quite a bit of time at the Karmanos Center in Detroit last Thursday. We met with a doctor for quite awhile. They examined me. They took my blood. And I signed a bunch of paperwork. The doctor gave us more information on Phase I trials in general. They have about 50 of these trials going on at Karmanos. One of the main points of the trials is dose determination, also documenting side effects, and effects of food. Apparently most of these drugs are more targeted than the typical cancer treatment drugs. They are supposed to target specific tumor types and generally have less side effects than the broad spectrum chemotherapy used is most cancer treatments. Sounds good to me!

The doctor also went through some pros and cons of these Phase I trials. The pros definitely seemed to outweigh the cons (although this was a Phase I doctor speaking). In any case, these trials allow you to try the newest and most innovative drugs - drugs that probably will not be on the market for another 10 years. Also, they generally have fewer side effects. In terms of melanoma, the current standard of care does not provide a lot of success against the cancer - as I have found out.

So they had one spot left in a trial that they reserved for me as soon as they had talked to my UofM doctor. People with a variety of cancers have participated in this trial. It is a drug called pazopanib. It works by stopping the blood supply to tumors - by keeping blood vessels from forming around tumors (I think). Apparently they have had several melanoma patients in this study and all of them have shown "beautiful responses" to the drugs (doctor's words). So this is very hopeful. They of course cannot guarantee anything, but they really wanted me to be in the study because of the potential it has for me.

It usually takes several weeks to get through all of the paperwork for these studies, but they fast-tracked me and I started the study yesterday (Monday)! We were at Karmanos from 7:00 a.m. to 7:30 p.m. yesterday - a very long day. And I think I've had most of my blood taken out of my body the past few days for lab samples. :) But things are going well so far and it feels really great to be doing something rather than sitting around waiting. I will only receive one dose this week and another dose in two weeks. After that I will be given pills to take daily. I have to go into Karmanos a few times this week for blood draws. The schedule is really complicated - all part of the study I guess.

So that is where things stand at the moment. I've been doing pretty well physically. I've been running a fever occasionally - they tell me it is probably tumor fever. Also I've been having some pain in my jaw the last few days from the lump on my neck. That had happened once before and then went away. Hopefully it will go away again. Otherwise, we're just really excited to be participating in this study and hoping for the best as usual.

I guess my closing paragraph is probably getting repetitive, but thanks again for all of your thoughts and prayers. We need them and greatly appreciate them.

Be well,

Wednesday, October 10, 2007

Disappointing news

Hello there. Once again it's been awhile since I last posted here. Overall I've had a good few weeks since my last post. We were able to head up to the U.P. for almost a couple of weeks. My parents were able to come up for almost a week and help us do some home improvements. Dad especially helped by doing some drywalling for me. I had a room and stairway that I had torn down to the studs and insulated last winter. Then of course I found out about the cancer and have hardly been there since. So it was great to be able to get that nearly finished. We also had fun spending time with my folks and enjoying the fall weather.

We came back down south last Thursday on a lovely fall day. On Friday I had an appointment with the endocrinologist in the morning. She was pretty happy with my bloodwork and how I had been feeling so I was able to get off the rest of the medication I had been taking for my thyroid. Then I had an MRI of my brain and a set of CT scans on the rest of my body. These scans were to determine if the treatments I've been receiving are working or not. So we were both pretty stressed about this. It was hard waiting over the weekend until our appointment with the oncologist on Tuesday morning. Overall though we'd been feeling pretty positive about things and really hoping for some news of shrinking of the tumors.

Unfortunately, we didn't hear what we were hoping for on Tuesday morning. The MRI of my brain was fine so that was a positive thing. The CT scans showed that the tumors are not shrinking. The ones in my liver were still there and there were some new ones there as well. This means that the treatment hasn't been working so I won't be continuing with this chemotherapy. No doubt about it, this is a major blow. I had really been hopeful about this set of treatments and I've been feeling so good... it's just really disappointing.

The doctor told us that essentially I've now been through the standard treatments for metastatic melanoma. Clinical trials exist, but because I have a second malignancy (thyroid cancer), I am not eligible to participate in these. I guess it is against FDA rules or something. He proposed three options. There is a chance the the National Cancer Institute would take me into a trial they have going. He thinks there is a slim chance for this because of the thyroid cancer issue that I just mentioned. They are looking into this option for me. Another option is to find a Phase 1 trial - he also called it a first in human trial. These trials are for drugs that have shown promise in a laboratory setting. He said that these trials are to see what sort of side effects occur in humans as well as to study the efficacy of the drug in fighting the cancer. There are only five or six locations where these tests take place in the U.S. One of these is at the Karmanos Cancer Center in Detroit. They are also looking into this option for me. The other option is to do nothing. Not too thrilled about that option.

So this is all pretty sobering stuff. We wanted so badly to just go to the infusion center and continue the chemotherapy. We've been doing pretty well since we got the news yesterday. It's just made us very sad, but not necessarily more stressed out. At least we don't have to wait anymore to hear the news. We're not giving up hope at all. We're happy that my brain still looks good and that I'm feeling good. It would have been nice if the doctor could have just given us another course of treatment to try though. We'll probably be getting a call from the doctor tomorrow to let us know what they have found out about the National Cancer Institute and Karmanos. We're hoping I can get into some sort of program sometime soon.

So that's the story at the moment. Please continue to keep us in your thoughts and prayers. We'll need your support now and into the future. We're still hopeful and pray that you all can be as well. I know that I've got much more to do on this earth. I'm not close to giving up. Just a little bruised from the recent news, but I'll bounce back and we'll figure out the next steps!!

Take care all,

Thursday, September 20, 2007

So far so good

Hello again! Sorry it has been so long since my last post. But no news is good news at this point I guess. Things have been going fairly well since my last update. Jess and I were able to make it up to the U.P. for about a week which was really great. It had been a couple of months since we'd been to our house so it felt really good to get back and settle in for a few days. We did manage to take a day to drive up the Keweenaw - it was a gorgeous day, nice and cool. I had been sweltering in the humid 90's of southeast Michigan for too long. Of course I had a hyperactive thyroid and hot flashes during those 90's too, so that may be why it was so miserable.

The other great thing about our trip up there was that I actually was feeling pretty good. I hadn't felt well since the beginning of August since my interleukin-2 treatments. I had a good amount of energy back and just in general felt good. Part of it I'm sure was just being home again too. So anyway we had a successful trip up there and the weather was great - it was really what I needed to recuperate and build up some strength for the next set of treatments. I also continued to eat a lot of food and I'm happy to report that I've gained most of the weight back that I lost so quickly. Now I'll have to tone down the high calorie foods I've been enjoying constantly! :)

We had to get back down to Ann Arbor last Friday for another appointment with the endocrinologist. That went fairly well. She was happy with my progress and based on my bloodwork was able to take me off of one medication and is slowly taking me off of another. So it seems that a combination of the interferon and interleukin treatments really messed up my thyroid for a time but it probably will not be a chronic problem. However, I still do have thyroid cancer as well so my thyroid will be coming out at some point.

This Tuesday I had an appointment in Ann Arbor with the oncologist as well as some blood work before I started this next round of chemotherapy. They seemed to be happy with how I was looking and feeling and my bloodwork looked good. As a precautionary measure they took some extra labs called tissue typing. Depending on how my next set of CT scans and MRI look like, I may have to go to the National Cancer Center in Maryland (I think that's where it is). They are expecting and hoping that my scans will show shrinkage of the melanoma and we can continue with the chemo regimen that I am currently on. Apparently these tissue typing labs take a while to get results so they wanted to have them ready and on file just in case they need to send me anywhere for further evaluation. But in general I am feeling pretty positive about how things are going with all of this and am quite hopeful that the scans look good! These scans will be two weeks from Friday.

So after that appointment on Tuesday I had about a six hour infusion of the three drugs I receive on the first day. It went quite well. One of the drugs really burned my vein as it went in during the last set of treatments, but did not do so this time - that made me happy! I've been through two more days since them and amazingly only have one more day to go. I felt so much stronger going into this set of the treatments than the first set and so far I think that has really helped how I've felt. I'm starting to get more fatigued as the week progresses, but the difference between this time and last time is really phenomenonal. It may be more difficult over the weekend as I'll be on extra anti-nausea drugs, but I'm keeping my hopes up that it won't sap my energy quite as much as last time. I'm curious to see whether or not I lose my hair after this week. I lost quite a bit during the first round of treatments - I could tell especially when I washed my head - my hands would just be covered with hair when I was done. It's not really noticeable yet though. So we'll see how it goes after this week. Maybe a new look would do me good. :)

After Friday I have two whole weeks before my next doctor's appointment - provided I feel ok during that time of course. So I'm really excited about that. We'll be heading up to the U.P. again at some point after tomorrow depending on how I'm feeling. My parents will be coming up for a few days as well to help with projects around the house that I just haven't been able to do. That will be really nice.

So that is the story at the moment. My spirits are pretty high and I really feel like I've made great progress during the last few weeks. I can't express how much I continue to appreciate all of your prayers and support. Thank you! I'll try to update this again sooner rather than later! Enjoy the fall weather and I'll talk to you soon...

Wednesday, September 5, 2007

Fattening up

It's been quite a week since I last wrote anything here. I had four chemotherapy infusions last Tues-Friday. Three drugs on Tuesday and two drugs on the other days. The infusions themselves weren't that bad - the main thing is that they are quite time consuming, usually lasting at least 4 hours. I don't have a permanent line in me at the moment so I have to get a new IV put in each day. Fortunately, the nurses were all great and (for the most part) were able to get me hooked up on the first try. There is something about getting poked repeatedly that doesn't sit well!

The side effects weren't too bad from the chemo. There was a whole host of possibilities, but nausea was the main one. Fortunately, they seem to have that side effect pretty well figured out with medications. I was on a couple extra meds over the weekend because of the possibility of delayed nausea. These wiped me out for a few days. I'm sure the chemo added to it as well, but I just was extremely tired with no energy for about three days. I'm feeling more like myself today though so I'm quite happy about that.

While I was getting an infusion last week we had a chance to talk with a nutritionist. I had lost 20-25 pounds over the past month or so - she gave us a bunch of ideas to help me regain the weight. I had been eating fairly well, but hadn't realized that I really needed to start paying attention to calorie and protein intake to make sure I was getting everything my body needed. So we went out and bought a lot of whole milk dairy products, protein shakes, and other protein and calorie rich foods. I've been working hard at eating as much as possible. Fortunately, I've been able to maintain a fairly good appetite through the treatments. I think that I at least have stopped losing weight and hopefully have gained some back.

Tomorrow I have an appointment for some blood work and a check up to make sure I got through the first round of chemo well enough. After that we are hoping to head home to the U.P. for a week or so. Hopefully they won't need to schedule any more new appointments during that time. We haven't really been home in about 2 months or so with our work at Traverse City this summer and then all of the medical issues. It will be amazingly good for us to get back even if it's not for long.

It's a little overwhelming too though because we're not sure what all we should try to get done while were there. We both longing for a drive up the Keweenaw and of course a stop at the JamPot along the way. For those of you who don't know - the Keweenaw is the most beautiful peninsula on Lake Superior - and the jampot is a bakery run by monks who make otherwordly baked goods and jams. We can't wait!

Otherwise, we're keeping our spirits as high as we can and trying to keep taking a day or two at a time. Thanks so much for all of your thoughts and prayers!