Cancer Treatment Started (Again) 10-26-08

Family & Friends:

Well, we’ve made it through another 10 days! Therapy is continuing, the wheelchair ramp is completed, and we now have a home aide three mornings a week. Lenore does both housework and also patient care. Susanne’s exhaustion is lessening.

Friend Nik Tressler stayed with Craig on the 18^th so Susanne had a respite day away at a friend’s home. Craig’s cousin Jim and his wife Sara visited on the 19^th and helped with many tasks around the home. It was great to see them.

We were glad to re-start the spiritual study circle (Reflections on the Life of the Spirit) on the evening of the 20^th that we suspended in July. Great to have everyone back together for a discussion about the journey of the soul.

We finally completed undoing our trusts and signing our wills on Friday...a major accomplishment.

On the 23^rd, Craig’s cancer/tumor treatment began with Avastin targeted at cutting off blood supply to the tumor. Together with the doctors, we dropped the Irinotechan drug, which has many side effects and little proven value. Avastin was administered by IV over a 90-minute period. Accutane will hopefully be approved by the drug company and insurance company to be added this coming week. Craig went through the treatment smoothly. The homecare nurse will visit weekly to monitor for side effects.

Unfortunately, Craig has had three minor seizures over this last week (spasms in the right arm), likely from the growth of the tumor. After the final two on the 23^rd, his medications were increased yet again. His right arm lost a bit of functionality from the seizures, and the medications have made him tired and weak. He’s bouncing back though, of course! Today we worked with friends Cindy and Everett Hall. Cindy made pouches on Craig’s wheelchair so he can carry a water bottle, telephone, and books. Everett helped Susanne with properly labeling our electrical circuit breaker box. They also stocked our freezer with homemade food. Yay!

One significant milestone in the last few days…Craig is back loading the dishwasher and doing the dishes. He figured out how to do it from the wheelchair!

Love,

Susanne & Craig

Home and Tumor 3rd Time Around - 10-16-08

Family and Friends: From Craig (via his secretary!): This has been a week of many adjustments—both a wonderful week and a challenging one. The first challenge was optimistically assuming that I could enter and leave the house walking, when what I needed was a wheelchair ramp. Fortunately, my brother-in-law Bob Tolles from Pennsylvania and a wonderful crew of local friends were able to construct a ramp on Sunday. The wheelchair itself brought on several challenges, such as negotiating around the house, how to get it into the car, Susanne’s strength in pushing it long distances through the hospital, etc. My first need to be out of the house was Monday for an MRI appointment, which we were able to make. Then on Wednesday, Susanne, my daughter Michelle, and I reviewed the MRI images and held a lengthy consultation with my oncologist and neurosurgeon. The scan clearly shows that there is significant tumor re-growth occurring. We had been preparing for this likely news over the last two months by compiling a list of treatment options to consider once my infection was gone. In the meeting, we narrowed the options down to five possibilities, and on Thursday chose two of them after prayer, consultation, and sleeping on it. I am comfortable with our choice of treatment, which is essentially a mix of three drugs (Avastin, Irinotechan, and Acutane) administered intravenously every two weeks. The first session will begin on October 23rd. The first two drugs are standard treatment for a recurrence and designed to cut off blood supply to the tumor. It is far less common to include Acutane, which sometimes trips the cancerous cells back into a healthy life cycle, but we were spirit-guided to include it, have requested it, and will now see what the doctors say about the safety and workability of the mix. (It is called Accutane and far more often used for acne, so we have been talking about my having a “pimple on the brain”!) In the meantime, our home is a non-stop therapy arena. Home health care includes regular sessions with a physical therapist, occupational therapist, and a nurse. The therapists continue to notice and report increasing strength and healing in the muscles that were not functioning after the last surgery in August. I'm able to walk around the main level of the house at times with my cane. When the therapists are not here, I'm working through a variety of exercises on my own. The blood clot situation seems to be stable with the twice-daily blood thinner shots, and my leg and foot are now rarely swollen. I’m struggling with how tired Susanne is getting while caring for me, and concerned about my mother, who just had a small stroke and is moving to assisted living soon, but overall, however, I’m just very glad to be back home! Craig The rest of the story… I’m glad to have Craig home…and I’m totally exhausted. Because of Craig’s instability with walking and transferring from the wheelchair to the bathroom and bedroom, as well as the continuing weakness in the right arm, I’m very involved in all aspects of his care. I will say, though, that I’m very grateful he has taught himself to do many tasks with his left arm/hand, so he feeds himself, brushes his own teeth, etc. I’m being physically challenged with needing far more upper body strength to handle Craig (210 lbs + heavy foot brace and shoes) and the wheelchair (about 70 lbs) than I have. So, lots of sore muscles and lots of gratitude when someone else pushes him and gets him in and out of the house. We are learning that it takes us far more time to do everything than it use to! And wondering how we will manage getting in and out once the snow comes…the rain this week was tough enough. Many of the things I spent a lot of time doing in the last year, like cooking, just aren’t happening much. There are too few minutes and too little energy to do it. I’m checking into hiring some help and hoping that family and friends will help as they can. Craig has fallen twice since being home, once with a car transfer and once from the bed where I had to have two firemen come get him up off the floor. Craig calls them “slips”, not falls...scary though and adrenaline rushes we didn’t need. With him on the blood thinner, injuries become more serious, so gratefully he was unhurt from these ones. We are in an interesting place of spending time hugely focused on physical things (and me on financial and legal things) and now trying to reconnect with the spiritual and figure out just what is important at this time in Craig’s journey. I have very mixed feelings about what this next round of treatment will bring, but I’m supporting Craig’s wish to still take action and doing my best to be of service to him as needed. Without treatment, Craig’s life would likely end within a short time as fast as the cancer is now growing and spreading. What is God’s will for us in all of this? So, it’s a time of reflection between exhausted moments and we’ll see what each day brings. Love, Susanne

Craig Finally Home! 10-7-08

Well, after 7.5 weeks in various hospitals, we finally got Craig home today!!! It wasn’t easy figuring out how to get him in the house, but neighbor Frank helped, and we did it. Craig’s very glad to be home!!

So, now let me update you on the last week... Craig is being treated for the blood clots with a twice-daily injection into the abdomen of a blood-thinning drug called Lovenox. Guess what? It's got to continue for the next month. When I expressed concern about being able to do it to Craig, he got the nurse to teach him how to do it. As far as I know, my job is going to be holding the fold of skin and closing my eyes and hoping his aim is good! Craig also had an ultrasound done of his right harm. There were two clots present, but they were surface ones and not serious. His infection appears to be totally gone, so we won't have to do IV's at home. (YAY!)

I've spent a lot of time over the last week attending physical and occupational therapy sessions, getting a better sense of Craig's abilities and limitations. We also got to test out what to do if Craig accidentally falls. After it took three of us helping with Craig participating too, we decided that he is never going to fall, and if he ever does, I'm to make him comfortable on the floor and call 911 to ask for professional assistance. All of my observations then helped me to recruit two friends, Rick and Robin, who worked with me on Sunday to both rearrange our home somewhat and also install safety equipment for Craig. Rick sat in Craig's wheelchair and practiced going all over the main level of the house so we knew what hazards to remove. We set up the guest room bed with a safety bar, removed doors, put a bench in the bathtub, chairs in the toilet room, etc. etc. Then I photographed all of it, and the occupational therapist has pronounced us okay for Craig to come home! Craig has been practicing going up stairs, so going up there to visit is likely, but he is safer "living" downstairs.

On Friday, Craig and I got approval on our ability to transfer him from a wheelchair to the car. On Saturday, we were allowed a brief leave of absence to go a few blocks away to the Natural History Museum for a special exhibit on race. We discovered his being in a wheelchair dropped our admission from $20 to $9 and our parking from $4 to $0! We enjoyed the exhibit, too, and had a good lunch in their restaurant.

On the downside, all this lifting of the wheelchair and pushing Craig around is wrecking some havoc on my body. Lots of painful spots, which also led me to a meltdown yesterday morning. If I cannot manage the chair, we are very housebound. Right now he can only walk a short distance with a brace on his foot and a cane. I've requested that the physical therapist that comes to the house to work with Craig also show me some techniques with handling the chair, and the insurance company has agreed. Frankly the other challenge for me is that for all these weeks, Craig's had a team of doctors, nurses, aids, therapists, etc. etc. looking after him and all his needs. It's confronting and overwhelming to know that the team is now becoming much smaller - me! With help, though, thankfully....

There will be a nurse, physical therapist, and occupational therapist all visiting us regularly over the coming weeks. We don't know their schedule yet. We also hope that people will come to visit us and also give me breaks. I won't know for awhile whether or when it's wise or safe for me to leave Craig alone.

So, we are on to the next stage. There is an MRI scheduled for next Monday, and we meet with the surgeon and oncologist later in the week for the results and to decide what is next for cancer treatment.

Loving greetings,

Susanne (and Craig!)

Craig sidelined with blood clots, 9-30-08

Yesterday morning Craig was given the green light to come home on Saturday. By noon an ultrasound indicated that he has 9 deep-vein bloot clots in his right leg, he was pulled out of therapy sessions for at least 24 hours, he was put on a blood thinner drug, and was told that leaving to come home is on hold. Deep vein clots are very serious, because any dislodging of them can result in movement into major organs such as the lungs.

If I start telling you how I feel, this will turn into a book! Thanks for your prayers.

Love,

Susanne