Sunday, July 27, 2008
Have a great week!
I will start out this crazy weekend with a narrative and then some pictures.
FRIDAY: Our trial-run home dialysis at the cottage. Are Nurse Dawn and Dr Song were here to observe and give us our FINAL EXAMINATION! (Sabine's BP was a little high!). All went well and we passed. Then a nap and off to set up our site at the Mt Horeb "Relay for Life." Sabine had her Dorothy costume and Charlotte's friends (the folks who painted at the cottage have also helped us out last month during the Wisconsin Heights Relay. This time they were Munchkins and the Scarecrow! Charlotte had her tin hat and axe as the Tinman. Thanks to Laurie, Pat, Maggie, Gail, and Pat #2!). We were also joined by Sue Wenger from St John's in Portage and Kim with her two boys, Jared and Jackson -- Charlotte's GREAT grandkids! They all were such a good help in setting up, taking down and helping entertain us.
I got talked into joining a special event to raise money around the track. Men were asked to dress up as women (drag?) and collect as much money as they could in an hour. Sabine was so nice, she lent me her Dorothy costume, red sequined shoes and wig. More about that later.
At 10 p.m. a special memorial fireworks display was set off and I have to say I have NEVER seen fireworks as many, varied and lengthy as these were. We were awestruck!
We got home and in bed just before midnight.
SATURDAY: We were up around 7 a.m. and attended the pancake breakfast back at the Relay site. A good breakfast. Then there was breaking down our "Wizard of Oz" campsite and loading it into the truck before the final awards ceremony.
While we had to split our money between two relays (raising over $3,000) we still ended up in the top twenty. Our movie theme campsite (and characters) won us second place overall among nearly 30 campsites. And when it came to the "Miss Relay" competition, I was squeezed out by two other "women of the night" but I was an acceptable third place.
Overall, the Mt Horeb "Relay for Life" raised over $100,000 to fight cancer!
SUNDAY: I was the supply priest at little St Andrew's in Monroe. Tired but present! Sabine got a pass.
See some of the pictures we took this weekend on Wild and Crazy Weekend II and III!
Thanks again for your support, love, and prayers.
Wednesday, July 23, 2008
Sabine has been on a 10-week "rest" since her last chemotherapy session. The break was to see how the cancer would react without the chemotherapy (Velcade and dexamethasone).
We got the lab report back last week (and I thought it looked pretty good!) but Dr Sheehan thought it looked even better.
He said, "As of now, we have got the cancer under control!"
He suggested we check back in another six weeks to see how the "numbers" look. And, as for now, there will not be another round of chemotherapy.
Praise God! and thank you all for your love and prayers!
Hope to see some of you at the Mt Horeb "Relay for Life" -- starting at 6 p.m. this coming Friday at Grundahl Park, just south of Highway ID.
This Friday is also the day we finish our home dialysis training and the staff at the dialysis center meets us at the cottage and we set up and do "home dialysis" that day. A busy week!
Tuesday, July 22, 2008
There were great bands -- an especially good Cajun group -- and plenty of food (and beer!). (Sabine can't drink so I had one for her).
One of the highlights of the day was a free one-hour train ride. (I wasn't able to upload the video -- but the picture below is the start of it. You can see mile number 162 where the cottage stands).
If you look at the picture below of the cottage (a picture we took from our train ride that day) you can see Charlotte's fine gardening work.
She has planted flowers all around the cottage and in the yard. Yes, it is a blessing to have a hard-working German gardener on staff.
It was just one of those wonderful summer days in Wisconsin and Sabine greatly enjoyed being at the festival, walking to the cottage for a nap, and then going back to the festival. We hope to be back next year for another great time.
Monday, July 21, 2008
Here we are in our last week at the University of Home Dialysis. (I think we may even graduate after a rocky first week!).
We have been preparing the cottage for our transition from clinic to home. We have two huge 7" deep drawers filled with supplies and we will have 40 boxes of 5 liter bags of dialysite delivered each month. (Dialysite is the solution that surrounds the artificial kidney/cartridge and cleanses the blood of toxins by an osmosis-like process).
I actually am getting excited about being the "Charge Nurse!" In the picture you can see the cycler (dialysis machine) behind me with the 4-5 liter bags of dialysite that are used each treatment session. In the picture, I am about to make the sterile blood connections to Sabine's tunnel catheter that will begin the dialysis process.
We will continue using the tunnel catheter near her neck until the fistula (or graft) is ready to use. This is a surgical technique and will need to heal before it is used.
This weekend between cottage preparations we were able to amble over to the Mazomanie "Gandy Dancer" festival which had a great selection of bluegrass and Cajun music. There also were free one-hour railroad car rides (I will enclose some of the pics we took of the cottage as we went by on the rails!
Wednesday is our meeting with Dr Sheehan and I anticipate some good news with regards to the treatment cycle. The weather has been great -- there really is absolutely no better weather in the world than summers in Wisconsin.
Friday, July 18, 2008
We came back from the Access Clinic at the UW Hospital this morning and met with the surgeon, Dr Yolanda Becker, who will do the access surgery (the date is August 5th). While Sabine's veins are a little narrow, she will do her best to get a fistula implanted. If that cannot be done then an artificial "graft" will be put into her arm.
I got the lab results from Sabine's recent blood tests and I think it is some good news (though Dr Sheehan will give us the expert report next Wednesday when we meet with him). But, my "arm-chair" medical opinion is that the results are good: her nasty lambda light chains, which were depressed to 100 during last chemo cycle 9 weeks ago, have only increased to 208 since we stopped the chemotherapy. I think this is good news seeing when we started chemotherapy her light chain level was at 10,800!
We are in the process of preparing the cottage for our dialysis site -- cleaner than the farm's wet basement and the cottage has a better electrical system and is closer to the EMS.
Another couple of steps forward. Pray the Dr Becker can find good veins for the fistula and that the myeloma stays repressed.
Love to all!
Wednesday, July 16, 2008
Yesterday we attended our monthly Myeloma Support Group meeting and Madison and heard a talk by a representative from the International Myeloma Foundation give a great report on new strategies and clinical trial results in the field. The IMF has a great website (www.myeloma.org) and support services for those newly diagnosed.
Sabine and I are seriously considering using the cottage as our personal dialysis center (it's cleaner than the farmhouse, good lighting, plumbing and electrical system, a dry basement and close to the EMS facility in Mazomanie).
Sabine's brother, Rainer, and his wife, Rennae, are visiting for a few days on their summer vacation and we are enjoying their company.
Okay, that's my mid-week report.
P.S. Remember: The Mount Horeb "Relay for Life" at the end of the month. The Dorothy and the Yellow Brick Road will be there to greet you!
Monday, July 14, 2008
Nevertheless, we are committed to keeping open minds and fully participating in the training. We will make a final decision when we finish the course. But let me just say that what we have here we are told is a trade-off for flexibility, a "cleaner" dialysis, and less chance of infection versus thrice-weekly clinic dialysis.
As the caregiver, I am now in a much more active (and critical) role. I joked that after training I should automatically receive a degree in nursing! And the staff congratulated us for going through the first week of training without crying (but it was close on Friday!).
Stay tuned for the latest in a series of not only encountering the health care system, but now being active practitioners!
Our love to all...
p.s. This Sunday Sabine and I attended the First Congregational Church in Madison. My friend, Pastor Jerry Hancock (former Wisconsin State Assistant Attorney General) invited me to be the guest preacher. He tells me that my sermon will be on their website at: http://www.firstcongmadison.org/srmarch.htm.
It was a fun Sunday as we ran into a lot of old friends including Sr Loretta Dornish who was my graduate advisor when I was at Edgewood College.
Tuesday, July 8, 2008
Aha! Many of you may be wondering what happened to Monday's weekly blog -- well, we are too busy! We went back to school (home dialysis training) on Monday after a busy (but lovely) Fourth of July weekend.
I can only image that the pre-flight check list for a 747 airliner is a little bit smaller than the check list for home dialysis! (somewhat kidding, but not entirely).
The book below is our home dialysis "bible" and has just about everything you wanted to know about dialysis, the machine, problem-solving, and emergency procedures.
We have a great nurse-trainer and every day this week and for the next three weeks we will be at "school" from 8:30 to about noontime. During our training time, Sabine is hooked up to the home unit and we receive training on the unit. It is rather complex, but it is something that I am excited about doing (Sabine is, too; but as she says, it's her body while for me it's some great new technology!).
Nevertheless, life has been good for us. On our woodland walk this morning I asked Sabine how happy she was on a scale of 1-10 (even considering the cancer) and she said that she was at an "8." I would say the same thing. While it may be difficult for some folks to imagine how two people with this deadly cancer can be so happy, the fact is that we are! Thanks be to God!
Stay tuned. I'll keep you up on the training and how we are doing. Blessings all around.