Tuesday, July 15th, 2008
Terri's memorial service went well. It was very uplifting to me and my boys to see so many people there. I want to thank everyone who came and all of you who gave us flowers, cards, and monetary donations. It is just unbelievable how loving you all have been. Terri was such a giving person. She would be so moved by everyone's generosity. I just cannot thank you enough.
A special thanks goes out to all who helped make the service so special; Fr. Vogel, Stephanie, Traci, Meghan, Bob, Phil and Lynn, Jon and Shannon, Angie and Tane, Francyl, and the whole crew at St. Nicks.
I'm having a bit of a difficult time. It is hard for me knowing that I will not hear her voice, hug her, hold her hand, rub her cheek, sleep with her, watch her play with the boys, travel with her, share a romantic meal with her... for a long time. I just miss her so much.
Mike
Friday, July 4th, 2008
Terri died on July 4th at 3:08 AM in our living room. I will miss her forever.
Mike
Saturday, June 21st, 2008
This is from Mike - Terri is at home and comfortable. She has stopped all treatment and is currently under the care of Hospice with Dr. Senecal, as well. She is pain free. She is on oxygen 24 hours a day and her breathing is labored. She is weak and not moving around much. She has a difficult time with her thoughts. She has declined significantly since her June 7th entry. Still, she remains remarkable. My wife is just an incredible woman. I love her very much as I know all who visit her website do.
As I finish this up she lays peacefully on a bed in our living room resting after getting the most out of her day. She is so beautiful.
Thanks for all the help.
Saturday, June 7th, 2008
Dr. Martins called last night from the U of WA. He had talked to Dr. Senecal about the CT chest scan I got while at St. Joe's on Tuesday and as predicted, there is progression. Both doctors think it's time to stop treatment and request Hospice. I will meet with Dr. Martins on Monday to chat more about it all. One blip of good news is that the blood clot in my heart is no longer visible. Hospice will meet with us again tomorrow.
Wednesday, June 4th, 2008
On Monday, I went to get my treatment. Each time I go, I tell myself that I will do it only one more time. I'm not noticing any improvement and am unable to do much of anything. Before giving me the drug they took my stats and labs and results came back with low Potassium, racing heart, high blood pressure, high glucose, and high white blood cells (likely due to steroids). They gave me a 2 hour fluid drip before giving me the drug hoping that would help balance things out.
One piece of good news is that the blood clot in my heart appears to be gone.
Yesterday, I woke up but could barely lift my head up. Heart was racing and I felt horrible. We contacted Dr. Senecal and he told us to call 911 so off I went in the ambulance to spend the day in the hospital. Didn't even get to speed or use sirens but I guess that's a good sign. Hopefully I will be able to get some more info and once again try to determine whether to continue when I go into tomorrow for get another treatment.
I am noticing that the drug interferes with my ability to type and read so if it looks like my IQ has decreased that may be the case! Something isn't quite right.
Thursday, May 22nd
I decided to get treatment yesterday. Had I not, I would have been dropped from the trial. The protocol calls for two weeks on (treatment on Mon and Thurs) and then one week off. So I now get to wait until next Monday, June 2nd for my next treatment. This will give me over a week to maybe evaluate whether I think it is helping and to decide whether to continue. The side effects are worse than I was expecting. Extreme fatigue, achy bones and muscles, increased shortness of breath, no appetite.
Dr. Senecal visited on Wed evening to discuss things. He thought getting the treatment the next day was reasonable but also thinks that unless there are significant improvements from this drug, it is time for Hospice Care. There are really no other good options and I'm probably too ill too try any others anyway. Hospice will come out next Wednesday to discuss their services.
Monday, May 19th
Yesterday, I went for my 3rd infusion. I was not feeling well and my breathing and coughing had continued to worsen over the past week. After getting labs and meeting with the nurse practitioner I headed to the 5th floor for the infusion at 11:00. I sat on the bed and then told them I wasn't sure I wanted to get the drug. I don't think it is helping. Karen, the nurse, asked if I wanted to talk to Dr. Martins (my doc there and head of the trial). I said sure. She paged him but found out that he was at the U of W medical campus, about a 15 min drive from the SCCA in downtown Seattle where I was. He would be in a meeting until 1:00 but would then call me. I decided to take a nap but about 30 min later I was awakened by Dr. Martins himself! He must have left the meeting early to drive down to see me in person. He talked to me for about 45 min and then had to rush back for his appointments.
Because this drug is experimental, many of my questions could not be answered. He did tell me that it's looking as though the best case scenario with this drug is stability, not tumor shrinkage. I went over 3 years being stable so that can be fine if you're at a place where you don't mind being stable. However being stable where I'm at right now isn't appealing. I decided to not get treatment and think about whether to continue on the trial.
Tuesday, May 13th
Yesterday was a long and tiring day starting off at 7 AM with blood
draws. I think they took about 8 syringes of blood. One thing about
being on a trial is that the patients are very closely monitored. After
all nobody really knows what the drug might do. I then had an
appointment with Dr. Martins for a final checkup before getting the
drug.
From there I had to to to a "chemo lesson". I volunteered to teach it
but they insisted on taking me through the course as is required. At
about noon I headed to the 5th floor for the infusion. They gave me a
glucose monitor so that I can monitor my blood glucose daily as this
drug can cause elevated levels. The infusion was then started. Blood was
drawn and tested about every 45 minutes. At the end they wanted to
measure how much urine my kidneys produced which was no big deal. The
surprise came when it turned up to be bright purple! "Oh, we forgot to
tell you about that", the nurse said. Just another day in the life of a
guinea pig.
This morning I went back for more blood draws but am now home. I'm not
feeling very well, tired, headaches, and an overall rather yucky
feeling. Doesn't make me too excited about going back for infusion #2 on
Thursday. However, if we do get the anticipated 80 degree day, that
alone might make it easier to tolerate.
Wednesday, May 7th
A huge heartfelt thank you to all who attended the fundraiser for me
last night! What an incredible event it was. Over 250
people showed up to support me and my family. Your compassion and
generosity has deeply touched us and there are no words to convey our
appreciation. Thank you to my awesome cousin, Angie Cabe, for making it
happen and a special thank you to Dr. Senecal for surprising me by being
there and saying a few words.
On Monday at 7:00 AM I will start the trial drug IPI-504 at the Seattle
Cancer Care Alliance.
Wednesday, April 29th
I spent all day yesterday at the Seattle Cancer Care Alliance and the Univ. of WA Medical Center. (The Seattle Cancer Care Alliance, Fred Hutchinson Cancer Research, Harborview Medical Center, The University of Washington Medical Center, and Children's Hospital are all part of Univ. of WA Medicine).
In order to be accepted into the trial there I need to complete a series of scans, blood tests, heart tests and an eye exam. The trial also requires a tissue sample so that they can test to see if my cancer cells have a mutation of receptor cells called EGFR (epidermal growth factor receptor). Besides looking at the efficacy of this drug, this trial will look to see if patients with the EGFR mutation respond to the drug better than those without it. Since I responded to two different EGFR drugs in the past it is thought that I probably do have the mutation. I went on one of these drugs before the test was even available and since I responded there was really no need to get the test once it became available. Now patients are usually tested first to see if they are a good candidate for one of these targeted drugs (primarily Tarceva).
I found out today that they have enough tissue from my original biopsy of the shoulder in 11/2003 so I do not need another one. That was good news as I was not looking forward to them punching a hole between my ribs into the lung to gather the tissue, especially knowing there is a risk of a lung collapsing. I didn't get out of there until about 5:30 so it was a long and tiring day.
Today I went back for a brain MRI as they want to make sure that I have no active brain mets (cancer spread to brain). If so, I would not be eligible for the trial. They also want a baseline. For some reason, after my Gamma Knife Treatment, I get severe pressure in my head if I lie flat on my back for an period of time. A brain MRI takes about 30 minutes of holding still flat on my back inside the MRI tube. My last one was in March and I barely made it through. I knew today was going to be a challenge so I took two Hydrocodone and a Tylenol beforehand. Even with the heavy duty pain killers though I was only able to go about 10 minutes and then flunked out. The research nurse called Infinity, the drug company, to see what should be done. Surprisingly they agreed to waive the requirement. I will need to get one soon though as a follow up to the gamma knife so I'll need to figure out something, but at least I think the trial is a go.
I'm set to get my first infusion on May 12th. I will go to the SCCA twice a week for the infusion with one cycle being 2 weeks on and then one week off. If I respond, I will continue until failure or side effects are too bad.
After two weeks of refusing to go on steroids to possibly help my breathing, I gave in today and swallowed a yellow Prednisone tablet. I do not like them on a hill, I do not like them in a pill, I do not like them I do not, I do not like them in a shot, I do not like them with a Peep, I do not like them because I can't sleep! I guess you get to a point where breathing takes priority over sleep, but for me it took awhile to get there. Hopefully, I will see some improvement in my breathing.
Monday, April 21st (Edited April 25th)
I met with Dr. Martins, head of thoracic oncology at the U of WA. The
drug company agreed to let me have a 3 week washout period rather than 4
so I will start the drug in 3 weeks if I am still healthy enough to get
it.
This is a phase II trial (There are typically at least 3 phases before a
drug is approved). The small phase I enrolled 5 patients to
determine best dose and safety. This phase II has only enrolled about 10
patients nationwide so there is little to no data to look at. Even with
all that said, he thinks this is probably my best option.
The drug is referred to as IPI 504 (typical trial drug name) and is a
targeted agent, not a systemic chemo drug. For any of you who want the
scientific description, it is a novel small molecule inhibitor of heat
shock protein 90 (Hsp90), a recently identified target for cancer
treatment.
The treatment involves an infusion twice a week in Seattle and if I
respond would continue until failure or side effects are too extreme.
Sunday, April 20th
I saw Dr. Senecal on Thursday. He had not seen me for 3 weeks and it was
quite evident that my breathing was significantly worse. We decided to
stop the chemo, Gemzar.
I have been in the process of pursuing a trial at the University of
Washington however, it requires a 30 day washout period (no drugs). Dr.
Senecal does not think I can wait 30 days so we are hoping to get a
waiver and be able to start sooner. The U is waiting to hear back from
the drug company. I meet tomorrow with the lung cancer specialist at the
U of W and should know more then.
If I cannot get on the trial soon, I will likely go back on the chemo,
Taxol, to see if I can get a few more miles out of that. Other than
coughing and shortness of breath I have no other significant complaints.
