Tuesday, July 29, 2014

Hospital Release

After spending five difficult nights and days in the hospital, Robert was released Monday afternoon.  He finished the five days of IV chemo but still had 5 more chemo treatments by injection.  Before we left the hospital, his wonderful nurses gave me the opportunity to give Robert the Monday afternoon injection.  Needless to say, I was a nervous wreck but did a good job according to Robert:)  Today I have given the 5am and 5pm injections without hurting him.  Only two more tomorrow and all the chemo will be over for this trip. I have to flush his PICC lines before the night is over.  This nursing duty is totally out of my confidence levels.   Robert still has to go for lab work three days a week and meet with his doctor on August 8.  The chemos have really dropped his counts even lower so he is wearing a mask when we are out in public and we are both washing our hands all the time.  He is feeling somewhat better; has been able to eat some food and is walking around to get his strength back up.

After 8 days at the Rotary House hotel (owned by MD Anderson and connected to the hospital by a skywalk), we had to move to a different hotel as the Rotary House was booked.  It is a wonderful place to stay; I have learned to book as soon as you know you are coming back and book for an extra week just to be sure you will have a room.  It is a very popular place due to the convenience and everyone there has a family member/friend in the same situation you are so there is a lot of sharing of stories and helpful tips.   All of the hotels in the Medical Center district offer medical discounts and shuttle service to MD Anderson.

Thank you all for your continued prayers.  As I have said before, we have a long road ahead of us.  

Saturday, July 26, 2014

Update from Janine 7-26-2014

I haven't felt like writing or doing much of anything lately so Janine is updating here for a while:

Robert has been in hospital at MD Anderson since Wednesday afternoon.  He is now a participant in a clinical research study.  He is receiving two types of chemo; one by IV once a day for 5 days and another by injection twice a day for 7 days.  He is losing his appetite already, has experienced the nausea feeling, and generally does not feel good.  His blood counts continue to drop.  All of this is expected side effects of the treatments.  The first 24 hours in the hospital were pretty hectic and he didn’t get much sleep.  Friday was calmer and he slept on and off most of the day.  Saturday morning was a bit rough but he is feeling a tad bit better this afternoon. He  even felt like taking a shower!  I had to go to a training class on “Central Venous Catheter Dressing Change” this morning.  Each caregiver is required to go to the class twice and then demonstrate to the Infusion Therapy team that I can do the flush and dressing change.  This will be interesting!  Robert does have an infection in his big toe from an ingrown toenail that has been treated by the MD Anderson podiatrist.  It is looking a little better but with his low low white blood cell count, it is of concern.  We were told he would be in the hospital from 7-10 days then would be out-patient for another week.

On Tuesday, Robert, Sarah and I met with the Stem Cell Transplantation team.  We were all very impressed.  We are proceeding with the plan for Robert to have a bone marrow transplant once a suitable donor match has been found.  His siblings will be the first to be typed for a match; if neither of them are a match, the National Bone Marrow registry will be explored for a match.  

There will be a lot more bad days before there are good days.  MD Anderson Hospital is a wonderful place.  Everyone has been so nice.  Have a feeling we are going to get to know a lot of the folks really well.  

Monday, July 14, 2014

Review, Summary and New Chapter

Review and Summary:
About six months ago I was diagnosed with  myelodysplastic syndromes (MDS) which is a cancer of the blood. My three major blood cells: White, Red and Platelets are all low causing symptoms of extreme fatigue, susceptibility to infections and being prone to easy bruising and bleeding. I have been under the care of an oncologist who put me on a regiment of chemotherapy injections administered for 7 consecutive days, once a month for 4 months. Very little, if any improvement was found after these treatments.

New Chapter:
Last week we traveled to MD Anderson Cancer Center in Houston, TX (MDA) for further evaluation and testing. My initial tests there (blood and bone marrow and examinations) confirmed my MDS diagnosis and showed my conditions is still not good, even a bit worse than when I was first diagnosed six months ago. My new doctor also reaffirmed the initial treatment was a correct first step and recommended a new course of action in the upcoming weeks. This may involve a different chemotherapy regiment and possibly a stem cell (bone marrow) transplant in the not too distant future. I am also being evaluated for one of the MDA clinical trials which will begin next week.

While this all seems rather scary, we remain optimistic for a positive outcome and look forward to the "miracles" MDA with God's help or is that the other way around? Anyway, the next few weeks will be adventurous what with all the bigness at MDA Houston and their medical expertise. We begin with about 10 days of travel, hospitalization and rest & recovery. Keep us in your prayers as we embark on this step in our journey.

Tuesday, July 1, 2014

MD Anderson On the Horizon

After my June 23, 2014 appointment with Dr. Young we discussed the possibility of a referral to MD Anderson Cancer Center in Houston for an evaluation and second opinion from there MDS experts. She felt this was a good time for our going there since we had finished my last treatments over a month ago, things were not improving and my system was clear of the chemo treatments.  Apparently MDA likes to evaluate new patients after other treatments have finished. My first of two days of appointments begins on Tuesday, July 8th. If all goes well my last appointment will be on Wednesday after I have completed a variety of tests and lab work. Then I get to see my doctor for consultation, examination and evaluation on Wednesday afternoon.

We plan to travel to Houston on the Sunday before my appointments on Tuesday so we can get in a visit with Sarah, Ryan, Cason and Claire at their home. Since we will be driving long distances we will likely need to spend a few nights along the way going and coming.  We will also stay in a hotel for two nights near MDA on Monday and Tuesday. Long travel is not something I do well with these days so this is going to be an adventure.


As June 2014 draws to a close we transition to changes in my health care plan.  May 2014 concluded with the completion of my fourth and final round of chemo (Vidaza) injections. Once a week I had my usual blood test on Mondays. The results were not as good as we had expected, but at least my major counts had not gotten significantly worse.  For the most part things stayed about the same, with slight fluctuation from week to week. My physical strength and ability continued to be weak and mentally my attitude waned as I struggled with what the future held for us.

Faith is a funny thing when faced with uncertainly. If I were truly faithful my attitude would always be solid, positive and upbeat. I have to keep reminding myself that God is in control. He directs the work of the doctors, nurses, lab technicians and all others in our health care network. So when things don't seem to go as well as I had hoped it's easy to get discouraged.