Dear Family and Friends,
Last week was the beginning of the new strategy for attacking the metastatic tumors in Dan’s brain. Before, anytime he had radiation, the objective was to obliterate ALL tumors that were visible. Because there has been a large increase in the number of tumors, that objective has had to be modified. Instead of aiming for all of the tumors, the oncology radiologist and the neurosurgeon strategized on the 5 most urgent tumors; either b/c of size or location, to radiate. Late on Tues. afternoon they treated 2 of the 5 strategized tumors with stereotactic radiographic surgery. This is essentially the same technique that has been used in the past, but with a twist. Originally, they were going to treat 3 on Tues. and 2 on Friday, but because of certain regulations regarding the recalibration of the machine, they opted to do only two the first time. These two, however, took a fairly long time b/c they were irregular in shape, requiring more “beams” of radiation to be shot out in more angles…..from my limited understanding…almost like multiple tumors.
In addition to the procedure taking longer, Dan was the last patient that day and inevitably, that means a later-than-scheduled start. They were an hour and a half late beginning and the procedure took an hour and a half so it was a long time in the waiting room.
It is easy to let things like that upset us, but in all honesty, that particular office has been the MOST helpful, the kindest and the most responsive of any of the many, MANY doctors offices we have been associated with! That doesn’t mean the others were not those things....….mostly we have had very good experiences. This particular office just stands out. We notice and we are VERY grateful! I hope they realize how much of a difference kindness and understanding and a helpful attitude makes to people who do not feel well or who are scared or who are worried or who are just plain overwhelmed, makes!
Friday morning, they treated the remaining 3 of the 5 that they targeted for treatment.
We rarely notice any effect from these treatments but with the increasing number (59 so far by my calculations) the chances of not-too-pleasant side effects increases…..effects like memory loss, possible seizures and cognitive losses. The timing for those types of side effects to evidence themselves is most likely 4 to 6 weeks. Because of the increase of potential, they are starting Dan on a new drug in 2 weeks which has been known to greatly reduce and in some cases, reverse the adverse reactions to the treatments over a two to three month time. They combine this new drug with a high dose of Vit. E.
After the radiation was completed yesterday, we met with Dr. Warnick to ask some pertinent questions like: “Is it OK for us to travel to our upstate NY camp for several weeks?” “Is it safe for Dan to be driving?” “What are the next steps?”
Dr. Warnick saw no reason we could not go to NY. We already have the new drug that Dan needs to begin taking in two weeks. We just need to make sure we have a two month supply of the rest of his meds before we leave. The new insurance regulations make getting prescriptions filled out of town very difficult.
The driving issue was a bit of a downer. Because Dan already has areas of swelling from being treated in some areas of his brain multiple times, the doctor feels that driving poses a risk. It is impossible to predict the effects of the swelling plus there is potential for more swelling. He recommended that Dan not drive. In our car-based society, that is a hard pill to swallow. He has been very cooperative about not driving for periods when he has had to be on heavy doses of pain meds, but believing that that was temporary, it was easier to deal with. We are hoping that this is temporary as well, but he has less control or choice about this and at least for the time being, it is continuous. I KNOW how disappointed he is, but as usual, he accepted it with grace.
The next steps: Tues. Dan will have a CT scan and then on Thursday, he will see Dr. Crane. We are hoping to leave for NY soon. In 2 months it will be time for another MRI and a consult with Dr. Warnick (neurosurgeon) and Dr. Breneman (oncology radiologist) to evaluate if we can continue with this strategy. One small glimmer of hope is that the tumor that was protruding from his back (from the 10th right rib) has definitely gotten softer. We are hoping this is an indication that the chemo is beginning to get ahead of the systemic disease and perhaps limit the “seeding” of new brain tumors. That might allow time to catch up on treating all the tumors that are there at the moment. Only God knows….but He DOES know and is in control. We need to remind ourselves daily of that truth. Our circumstances here are NOT the big picture. They are only preparation for the “big picture”. Please pray for us to be wise enough to learn all that we are to be learning through this.
From the beginning of this journey we have determined to do our best to only allow cancer to be a “part” of our lives, rather than the focus of them. The last couple of months has been a bit more challenging in that respect but I think we can still say that we are accomplishing the goal. We have still been able to “baby sit” our grandchildren (sadly, there are NO babies in the group anymore!), we are still able to participate in family celebrations, in church life and in some special events.
Most recently, I was able to go on a weekend bike trip with a group of women from our community (mostly).We were fortunate with the weather both days. We traveled up to Cedarville, OH, near a junction of 3 long bike trails. I was in the most “casual group” of riders (translation: slow) so we rode for 32 miles on Saturday, including a short walk through Yellow Springs, a late lunch at Clifton Mills and then a short hike in the gorge.
I was so hungry, I started eating before I realized I should really take a photo of these giant pancakes!
Along with 2 eggs and bacon, it was quite a lunch!
Some cycling friends enjoying the day with me.
The old mill wheel turning in the water.
You can't really get the depth in this photo, but that water is a LONG way down! This is part of the Clifton Gorge.
On the hike in the gorge.
Gearing up to leave the Wittenberg Art Museum.
I needed to get home in time to go out to dinner with Dan and also with Tom’s family to celebrate Tom’s 40th (yes…that’s right…we have a child who is 40!) Birthday which was that day (April 27th) and Dan’s 66th Birthday which was the following day. It was a lovely time together with great food! Major “Mimi” fail was not getting photos of the event.
The very next weekend, I was able to go to Chicago to attend the Centennial Celebration for the nursing school I went to. My class had been planning a reunion for that weekend for over a year. We had the largest attendance as a class and we had great time reliving our younger days…..until we looked in a mirror! Bummer! It was great, though, to be together for a short time and to reconnect. Although our school has gone through a few changes over the years (we graduated 43 years ago!) it remains a solid program; one I’m proud to have a connection to.
Our graduation class composite. Those were the days.........can you pick me out?
Some of us 43 years later.
The student nurses' dorm entrance. Still looks just like it did when we were there!
Believe it or not...this is the CAKE for the 100th Anniversary Celebration! The steps is the replica of the dorm entrance! I missed seeing this in person b/c I had to leave early but a friend sent me this photo. Wish I had been there to actually TASTE it! I think it is an amazing likeness!
I got home in plenty of time to get changed and Dan and I were able to be with the family for the service and the celebration afterward.
Matthew's Special Day
In between special events, we have gotten to see our grandchildren a bit more than usual lately. I was enlisted to help Emma with a school project about Ohio’s state flag. She chose to make a cake like the flag so I helped her figure out how to decorate it and supervised the baking and decorating.
Those mixers can be tricky......
Adding the little details..........
I think she is happy with the finished product.
Another time we had all 3 here overnight. Because it was a school night there was homework to do:
Morgan and Matthew working on their homework on the deck. Emma had gotten her work done at school.
Morgan's art project she was working on. Mimi thinks its wonderful :-)
When homework is done and dinner is over, there might be time for a game of Uno or two with PopPop :-)
We are so very grateful that Dan has been feeling pretty well these last few weeks with the exception of his ongoing back pain. Some days it is not too bad and other days, it requires some rather stiff pain meds, but he is still able to participate in life…..things like watching Matthew play basketball or spending time with the grandkids. He recently got fitted for his back brace and is figuring out how to best use it.
(Later) It is now Tues. afternoon and Dan just had the new CT scans done of his chest and pelvic area. We will see Dr. Crane (the oncologist) on Thurs. afternoon to evaluate how the chemo has been doing.
We are unspeakably grateful to all of you for your faithful prayers and continuing encouragement! But mostly we are grateful to God for the great mercy and grace he continues to show us. Our prayer is that each of you experience and recognize that grace and mercy for yourselves.
Jodee and Dan