Earlier this summer I joined a group of amazing women who believe strongly in staying active to fight cancer. The group is called Team Survivor Madison. Their motto is:
Together, women with cancer achieving the extraordinary
If you visit the web site make sure you take a look at the links to all the activities these women do, especially the Dragon Boat Races we participate in to see a bit about how they stay active. Most of the women run triathlons, ride bikes regularly and of course race dragon boats. This is what I find most intriguing. I started working with them early in the summer and actually raced with them in a festival in St. Charles Illinois. What fun! I will put a few pictures of the day up in the gallery for you to look at.
A boat builder recently built us our own Dragon Boat. Check out this video to see all about it http://www.madison.com/wsj/home/local/297362 It is a really neat boat and 20 women can carry it to the water and paddle away. Great fun!
TSM does one real fund raiser a year along with collecting donations and working with community organizations. The fund raiser is a bike ride call the Chocolate Chase. True to a race run by women, each stop along the race course offers Chocolate! There are also great prizes and lots of chocolate at the end of the race party. It has been pretty successful, but this year it will be even better. Anyone in Madison or the surrounding area that is interested in this race can find more information at http://www.teamsurvivormadison.com/events.html
the race is on August 30th.
This group of women gives me hope and support. We do not talk about cancer much, more about life and how to live it to the fullest. It is a wonderful place to be and I hope to make some real strong friendships with women who will help me to stay active and live life to the fullest. They do this by example and with continuous encouragement. If you are a cancer survivor, I encourage you to seek out a group like this in your area. It is a national organization and I know you will find participation in the group as rewarding as I have. - S&S
In July when Scott and I visited Oklahoma to see my parents, we ended up spending quite a bit of time visiting with my brother in the hospital. It seems he had been having bad back pain for sometime and finally ended up in the emergency room. He was admitted to the hospital and had surgery to remove tumors from his spine. Turns out, he has Multiple Myeloma which has been eating away at his bones for a while. It took the Doctors in Fort Smith quite a while to get him to a place where he could get the care he needed. It should have happened faster, but he is now in a good place. He is now in the University of Arkansas Medical Sciences (UAMS) Myeloma Institute which is looking to be a very good choice. It is about 2.5 hours from my parents home in Oklahoma.
Here is a bit from my mom on how things have gone and what is up with Andrew now.
On Wednesday, July 23 rd, Andrew checked in to University of Arkansas Medical Sciences (UAMS) Myeloma Institute for evaluation, diagnosis and treatment. He was referred to Dr. Bart Barlogi by his Dr. in Ft. Smith. Dr. Barlogi (Dr. B) is the guru for myeloma! We have heard only great things about him and Andrew is very glad to have him for his Dr.! Andrew went thru three days of testing. This included a full body PET scan, full body CT scan and a full body MRI, a bone marrow draw and more bone marrow for a Gene Array study, a thoracic MRI. At the time of check in he had a full blown case of shingles (related to chicken pox) which complicated everything because the risk of passing them on required that he be kept away from the general population so we were always isolated in “shingle Jail” as I like to call it. This tended to slow some of the scheduling down. They put him on an intravenous med called acyclavir every 8 hours for the shingles. To accommodate this medication and daily blood draws and all future meds they placed a CVL (Central Vein Line) into his right chest that has three ports for injections. They take blood draws daily through this line as well as use it for most anything they want inside him that is liquid.
Andrew had the weekend off and he and Andrew Keller spent the weekend in a hotel there. My parents were able to go home for the weekend and take care of some things including Andrew’s dogs. They were preparing for what was come next, but I do not think that anyone can actually prepare for things like this. On Monday, July 28th, they journeyed back to Little Rock to meet with Andrew’s Dr.
The results of the tests were in and Dr. Barlogi told us that there are 29 myeloma lesions throughout his body. They are located in both clavicles, several ribs, the right back of his skull, his sternum, his left femur and pelvic cap, along his spinal column, and on his liver. Dr. B told Andrew that this can be treated successfully. He is concerned because of the rapid advancement of the disease. He ordered a fine needle biopsy of both his bone and liver to be done in the next two days and planned to begin chemo immediately after they were completed (by Wed.) Tuesday morning while on the CT table for the bone biopsy the techs attempted to place a pillow under his chest and the femoral arm on his left leg was broken. This is not a preferred situation! He spent the remainder of Tuesday in the ER waiting for all the doctors (orthopedic, myeloma) to decide how to proceed. He was finally admitted to the hospital and ultimately put on the myeloma ward (his room number is 7E Room 769).
On Wednesday they began his chemo treatment. This involves giving him seven different chemo drugs for four days mostly by IV drip. After this they will check his bone marrow production and when it has basically bottomed out (in about 10-14 days) they will give him Human Growth Hormones to stimulated the bone marrow to produce new stem cells. When there is a sufficient quantity (after 2-5 days) they will “harvest” the stem cells by circulating his blood through a machine and then back into his body. These stem cells will be frozen and will be usable forever. At that time he will receive more chemo to remove any remaining cancer cells. How long this will take we do not know however Dr. B told us to plan on him being in Little Rock for 6 to 9 months. They will transplant his stem cells and wait to see the results.
For those of you who are of a technical bent the drug treatment plan is “off-protocol”. The easy list is VDT-PACE (high dose chem administered over 96 hours):
P(Cisplatin) ’sis-plat-in’
Adriamycin ‘uh-dree-uh-my-us-sin”
These are the drugs he will be receiving (he is finished now and still feeling OK as I talked to him last night. The chemo effects are starting to take hold though). At this time he is also still on the shingles treatment (three times a day by IV) and is receiving pain meds. It is amazing to see how much they can put into him through the three port CVL. On Wed night he was receiving five of the chemo drugs, his shingles med, pain med and saline. He gets the other two chemo meds by mouth along with some anti viral, anti fungal and an anti biotic.
About the broken femur: Dr. B was not willing to put off chemo while the orthopedic Dr.s repaired the broken bone. He feels the Myeloma is too aggressive to wait, so, they may do a rack and pinion repair sometime during the next little while. In the meantime he is uncomfortable and pretty much immobile. This presents a threat of bedsores and consequently a danger for infection as his resistance is lowered by the chemo.
They have rigged a trapeze above his bed so that they can turn him every few hours with less difficulty and pain, but the Dr.’s are still trying to decide how best to deal with all of these complications.
Obviously the original plan which was to do the treatment as an outpatient has gone by the wayside. We are not sure at what point he will be released from the hospital but my parents have found an apartment about 10 minutes from UAMS for him and Andrew Keller. Andrew Keller is his official caregiver and will be staying with him throughout the treatment period. My parents will be traveling back and forth to Okalahoma. They will be taking care of the grand kids (Andrew’s dogs) and trying to deal with his house and other issues as they arise. I am sure this will help Andrew with peace of mind even though he would really like to have to dogs with him. At this point that is probably not a good idea as so many of his bones are so fragile and he needs a clean safe environment for recovery. He will just have to “visit” them when he can.
One other stress factor for everyone is that Andrew does not have insurance. Having worked for himself or my Dad for the last few years, insurance was something that did not happen easily. He had also just moved to Oklahoma and purchased a house. He had things in order to start his new life in Oklahoma, but now those plans are going in a different direction. As of yesterday he had been listed as pending with Medicade or Medicare which will really help with the hospital and doctor bills. However, as you can imagine he can not work and Andrew Keller is going to be quite busy being a full time care giver for a while. So, they need to find an income source that will fit into the plan. Not an easy task. Even when he gets done with Cancer treatment and goes into remission he has a long haul with the bone issues that will plague him and he will probably never be able to go back into construction as a profession.Andrew is also applying for Social Security Disability which will help if he can get through all the red tape. This may take some time.
On a positive note, my parents have met several patients that are in active treatment and are in some stage of remission. They were all enthusiastic about Dr. B and their own condition. Which has offered some comfort and encouragement for everyone! But as my family goes through this new ordeal, please keep Andrew in your prayers and thoughts. My parents could also use a bit of support as well as Andrew Keller as they deal with the strain of loved ones with Cancer. It is often a hard road for the care givers and family as well.
I will try to keep some updates here on Andrew’s condition if you are interested in following what is happening. Overall, Dr. Barlogi says the Andrew is an extremely sick young man but they plan help him get well. S&S