Monday, January 06, 2014
Dear Friends and Family,
Can you believe it is 2014? I still haven’t gotten used to 2013 and it is GONE! Each year I am more and more convinced that at some point, some new genius will discover a new principle of physics that PROVES that time changes and speeds up; thus, whatever is the “norm” when we are younger, gains in momentum through the years.
Once again, it has been too long since I wrote an update and things have changed a bit. I think I felt like things were in flux and kept waiting for a resolution. Although one still has not arrived I should still keep all of you who are so faithfully praying for us, better informed.
The last blog update I did was in late Sept. At that time, Dan had 7 tumors in his brain treated with the stereotactic radiation. We are very grateful for this procedure but somewhat concerned at the number of new tumors so rapidly popping up.
Because of the increase in number and quickness, the oncology-radiologist had us return in 2 months. It is imperative to catch these tumors early, when they are tiny, so that this treatment can be effective with minimal collateral damage.
We returned to NY for 3 more weeks of glorious fall. The weather cooperated and we very much enjoyed the extra time there. I honestly cannot remember if our last kayak trip happened right before we made this quick trip home or right afterward. But we had a great time enjoying the fellowship and the outdoors. A big plus was having a huge, delicious breakfast at The Hedges on Blue Mt. Lake. They let us put in from the lodge and we paddled down the lake to Eagle Lake and then just barely into Utowana Lake, far enough to see several sea planes take off and land. They were giving folks from a conference center scenic rides around the Adirondacks.
The ABC Ladies (and friends) ready for our Blue Mt. Lake Kayak Trip
(that's my awesome kayak in the background :-) )
The Men needed to be represented too!
This was taken from the porch of the main lodge at The Hedges. They were kind enough to let us put in from their front beach.
That's me on the right, getting ready to paddle from Blue Mt. Lake into Eagle Lake, I think. It was such a gorgeous day!
As we came into Utowana Lake from Eagle Lake, we came upon several sea planes taking customers for scenic rides.
We sat and watched them take off and land for a little while before returning to The Hedges and then back to Speculator.
A little taste of the color we were treated to on our trip.
After our kayak trip, a few of us had a bonfire on the lakeshore of one of our friend’s camp. What a great day!
But it seems all good things have to come to an end and eventually we had to pack up and leave our little piece of “Paradise”. It is always so sad to leave, even though we have a great home to come back to and good friends here. We are so fortunate!!
After being home for 3 weeks, we had unpacked, only to repack for a trip to Florida to visit my mom. She is too far away and we don’t get down there often enough! We had a really good visit and tried to make the most of our short time there. We got to visit friends on the way there and on the way home so that made the long trip more palatable.
My mom's good friend, Ruth, with Dan in the John Knox Village Dining Room.
Mom and me on the other side of the table.
Out to Wendy's for chile and a "Frostie" for a light supper. Both of these ladies are 94. I think they are amazing!
Once home, it was back to reality and time for more tests and as it turns out, more radiation. When Dan’s first MRI was done, they saw 2 tumors for sure and possibly a third. We were encouraged b/c we had been hoping that eventually the Avastin would curtail the growth of tumors in his brain. While it is unusual for chemo to have that effect, Avastin had seemed to prevent it when he was on it two years earlier, so we were hoping it would again. When they compared it to the HD MRI, however, it was not 3 but 8 tumors that had to be dealt with. Needless to say, we were disappointed. The radiation was scheduled for the following week.
The day before his appointment, we got a call telling us that we would need to reschedule because the giant machine that is the source of treatment was “down”. Always before, Dan could have all of the tumors dealt with in one day, but now, b/c of the number of them and b/c there would be such a big backlog of patients to be treated, they would have to break it up into two days.
The first 4 tumors were treated on the following Tuesday and the second appointment was scheduled for early Friday morning. On that day, a large winter storm was predicted. We were very concerned his treatment would be delayed yet again. We called the office and asked how we would know if we should come or not. They assured us that if the county did not close the roads to traffic, THEY would be there, but we were to use our own judgment regarding our safety and to just let them know. That relieved my anxiety somewhat…..but we both still wanted it all finished.
Thankfully, the storm was just beginning when we took off and we were able to get him in and out fast enough to get home before the roads got really bad.
I know this doesn't look like much to you Adirondackers out there, but for SW Ohio, this is a lot of snow!
Most folks here don't have a clue how to drive in snow and ice and while the D.O.T. has equipment, they don't have the same volume of equipment so clearing doesn't happen as fast or regularly, making for dicier driving.
His next MRI is scheduled for February 4th. Please pray that the explosion of brain tumors will recede.
Meanwhile, we were blessed with wonderful holiday celebrations of Thanksgiving and Christmas with family and friends. Our Thanksgiving included our family and our daughter-in-law’s parents. We had a lovely, relaxed day together with lots of great food. The grandkids are getting older and while I hate to see them growing up so fast, it does make dinner time more enjoyable :-)
The table is ready to set......
Although my granddaughters were unable to help me prepare the food this year, the cranberries still got cooked. It just wasn't quite as much fun.
Christmas prep was greatly condensed by the late Thanksgiving and then additionally by my becoming ill for 4 days right after Thanksgiving with the worst stomach flu I have had in a very long while. Thankfully, Dan only got a slight tinge of it! It seems like we barely got the house dressed up for Christmas and it was OVER!
On the Sunday before Christmas, as we were getting ready for church, I happened to notice something on Dan’s back…..and went to look closer. It was a fairly large tumor on the right side of his back about half way up. I was shocked…..well, we were both surprised. I wanted him to call the oncologist right away but he did not want to, insisting that we wait until after Christmas. I did not necessarily “agree” but understood. He already had his regular two week appointment with his oncologist set up and decided that was soon enough.
For us, Christmas included our church’s Christmas Cantata, visits from South Carolina friends, Dan’s extended family’s Christmas Gathering the Saturday before Christmas, our Bible Study’s Christmas Party at our home, the Christmas Eve Candlelight Service at our church, caroling at our son’s house with my brother, sister-in-law (who drove all the way from Iowa!) and some friends from church, the whole family at our home for Christmas Dinner and presents, and another visit from NY friends. Below are some photos from our Christmas Celebrations:
This group of cousins is now officially the most "senior" generation of the Rehme Clan. We gathered in Indianapolis (at Chris and Brenda's home) the Saturday before Christmas.
and Morgan all working hard at decorating Mimi's sugar cookies. They hung in there and finished all of them for our traditional "punch and cookies" after opening presents on Christmas Day.
Jim, Alyca and Dan sitting down to Christmas Eve Brunch of apples, bacon, raisin bran muffins and cheese soufflé'.
Alyca insisted on taking a photo of the two of us in front of the tree. I had not quite finished dinner prep, thus the apron. The kids were MORE than ready for dinner b/c they knew presents were right after the meal :-)
One of our traditions is to have a gingerbread house. It sits proudly on our hunt board from Thanksgiving until Christmas.
As soon as all of the "official" festivities are over, the gingerbread house is fair game. The kids are ready to dig in and yes, they really do eat some of it......just not much. It is pretty stale by this time :-)
(Notice the BIG KID in the back)
On the morning of New Year’s Eve, we headed to the oncologist’s office. I have to admit that I was pretty concerned. I was worried that the tumor would be an indication that the Avastin was not effective enough and they would stop that treatment. I thought we had already tried all of the other known kidney cancer treatments. Well, I was right…….and I was wrong.
Dr. Crane was very surprised to see the tumor. He always listens to Dan’s lungs and this tumor was right were he would be placing the stethoscope so it seemed it had popped up rather quickly. As I imagined, he did take Dan off the Avastin, but said there were several other things we could try. So Dan is now on a drug called “Votrient” (brand name) or pazopanib (generic). It is an oral drug, which is great….doesn’t require an IV stick every two weeks….but our experience with oral chemo has not been good so that makes it harder to be hopeful.
Dan is still struggling with excessive back pain, trying to moderate it with powerful meds that he resists taking; and trying to figure out the source of stomach or esophagus pain. Currently he is on 3 meds to help that with little results. If this last med doesn’t help, he will soon be having a scope to SEE what is going on there.
There is little to report on my medical issues. The one extensive and expensive diagnostic tool the cardiologist wanted to use was rejected by my insurance company and I’m not sure what the next step is. I meet with him again on Jan. 7th. I have done very little in strenuous physical activity since that episode last April but was told I could begin exercising again, very slowly at first.
Because of Dan’s back issues, we cancelled our ski trip out west and I am a bit embarrassed to say that skiing was pretty much my motivation to seriously exercise….so I have pretty much been a couch potato. But now I’m FEELING that and am purposing to do better. I promise to report on that in my next update so you all can hold me “accountable” :-)
With each setback we are tempted to be discouraged, but God is not only faithful, He is faithful to remind us of His faithfulness! We remember the grim prognosis given to us 5 1/2 years ago of 3 to 6 months life expectancy and marvel at His mercy and power. Each one of us is totally in His hands, and NOT relying on our own wisdom or skill or the effectiveness of doctors or chemo. If we are discouraged, it should be in our slowness of truly LEARNING this truth rather than in medical setbacks!
When I was catching up with friends via Facebook today, I saw a post from a former pastor’s wife that talked about goals for 2014. I know she won’t mind if I co-opt her goals and make them mine as well. This is what she posted:
(taken from Colossians 3:1-17) My prayer for 2014 is that I will truly fix my mind on things above- and with His help, put off all the old sinful habits that creep into my life and bring dishonor to God. Then I want to put on that whole list of wonderful God-honoring traits- letting His peace rule in my heart, being thankful, letting God's Word fill my mind and heart- living in such a way that brings Him glory. God help me keep this resolution!
So…that was the rest of 2013 and the opening of 2014 for the McCabes. I am very grateful for the beginning of a new year, for God’s sustaining hand on Dan and me and for wonderful, faithful, PRAYING friends like you! Love, Jodee (and Dan)
Wednesday, September 18, 2013
Hi...just got back from Maine where we watched our daughter (she is 34) do an Olympic distance Triathlon (The Lobsterman). It was her first of that distance so she didn't have a set time she was gunning for....she was just hoping to finish strong. She did that even though she was dreading getting in that 61 degree ocean water. Normally the swim is her strongest component, but the cold water did a number on her. She actually looked a lot better after the biking and the run!
We got to visit with Dan's sister, Jane, while we were there. She lives in nearby Kennebunk, ME. We don't get there often to see her but it is a beautiful part of the U.S. And we got to participate in the Lobster Roast after the race (for a not-too-small fee).
Below are some photos of our trip.
This is a shot of the lighthouse at Portland Point. How fitting that it was a foggy day. We heard the fog horns sounding continuously throughout the morning.
See the gentleman painting? Even in the rain/fog, he is capturing the beauty of the lighthouse on the point, just as I tried to do with photography.
Meg has on a partial wet suit, but that water still felt REALLY cold! She is trying to keep up her motivation to DO this!
There she goes! She takes off in a "wave" of folks grouped by age...some young women and older men. All we did was look for swimmers in purple caps.
I have several more photos I had wanted to add but Sparkpeople's website is NOT cooperating! I have gone through a lot to just get these on here and now the site is not working at all! Please come back later....hopefully, I"ll be able to finish it soon.
Wednesday, June 12, 2013
(This was posted to our family blog on June 7 and copied to this blog on June 12)
Dear Friends and Family,
As you know, the last high definition MRI and CT scans showed that Dan had 10 new tumors in his brain. The oncology radiologist set up three appointments for stereotactic radiographic surgery (or "zapping the tumors" in lay terminology) so that they could radiate all 10 without exhausting Dan or causing too much pain for his back. The procedure requires total stillness and that his head be encased in a form-fitted plastic mask and literally bolted to the table. With his back issues, they were not sure how long he could tolerate being immobilized.
This past Tuesday, they did the first procedure and he did so well, they were able to do 5 of the 10 with only a little break in the middle to remove the tight mask from his face and let him move a little bit. That appointment took 2 hours. Dan was encouraged and felt he could do that again today.
This afternoon, he had the second appointment and they were able to complete the treatments to all of the other 5 tumors. It seemed to be important to Dan to get it done in two sessions. I told him if it were me, they'd only need one, b/c with my claustrophobia issues, they would have to put me to sleep, period! I don't know how he does this while being conscious, but I suspect your prayers are playing into it quite a bit. We praise God for helping Dan to get through this in only 2 sessions! And I'm grateful for a friend who kept me company while I waited during both of those sessions! Thanks, Jennifer!
Please keep praying for us. We have a meeting with the primary oncologist early Tues. morning to decide what comes next in terms of chemo treatments. We are both thinking Avastin but are not sure of the other choices just yet, or even if there are any other choices.
We are still moving ahead with our "normal" plans for summer, holding them loosely, but remaining hopeful that we will still be able to spend much of the summer in upstate NY.
Thank you for praying for us…we FEEL it….and we are grateful!! Jo and Dan
Wednesday, June 05, 2013
Written June 1, 2013
Dear Friends and Family,
Tues. I was driving home from Florida…coming home from a trip visiting my sister and brother-in-law in GA, then stopping by in Haines City to watch Meg swim the open water leg of an IronMan Relay, and then on to spend a week with my mom in Pompano Beach when Dan called from the oncology radiologist's office. Dan had stayed behind in order to have his brain MRI that is needed every 3 months. When the doctor stepped out for a moment to take another look at some earlier scans, Dan called to let me know that this MRI had found 6 new tumors in his brain. We had arranged for him to call me from the doctor's office to let me know what was going on so that if I had questions I could tell him and he could ask the doctor.
I have to admit that I was taken aback some by this. I had expected them to find more tumors. The oral meds just did not seem to be able to suppress the cancer in the brain. But he has never had that many at one time before. He explained that they would be treating them just as before, with the stereotactic radiographic surgery, but that they would most likely need to do it 2 sessions b/c it would be difficult for Dan to be totally immobile long enough for them to treat all 6. They would get started right away by sending him right then for a high definition CT scan, which they then merge with the MRI to create a holographic image of his brain which they use to plot out the exact paths for the radiation.
It was going to take awhile to process that information. Dan was at home thinking about it and I was in the car, so I had lots of time to roll it around in my mind. Both of us were wondering if we should be pressing for him to go back on Avastin, the chemo that he was on for 2 years that seemed to suppress the disease completely. The only reason he had to stop taking it was b/c it was adversely affecting his one kidney. But it took 2 years to build up that toxicity and he has been off of it now for 2 years.
I was feeling a bit unsettled and decided to just keep driving until I got home that night. It isn't unusual for us to stop overnight on our way home from Mom's. It is an 1,100 mile drive. But sitting in a motel room just wasn't appealing to me at that point and I was holding up pretty well, so I just kept driving. With the longer days, I didn't even have to deal with much darkness. I arrived safely at about 10:15 p.m.
Yesterday Dan got to attend the Memorial Golf Tournament in Columbus with Megan. Her marketing company does their web site so she was able to get tickets and a parking pass. Plus one of her friends has relatives with a home on the course where they could rest and get some relief from sun or rain. He told me that his radiology oncologist's office might be calling with the schedule for the treatment for his brain tumors and left me with his schedule so I could straighten out any conflicts.
When the gal called with the schedule, she said they were scheduling THREE treatments b/c there were 10 "iso centers". She really did not know the significance of that, but I was afraid I did. I asked her if that meant that there were now 10 tumors and she could not tell me. I suspect she realized that she had given me information that I had not had and should not have heard from her. She told me that she would leave a message for the doctor to call me to answer my questions.
Awhile later, Dr. Brenneman called and yes, after the high definition CT scan and merging it with the MRI, they found 4 more tiny tumors that need to be treated. He apologized for our finding out from the scheduling person. So our 6 tumor "event" has now become a 10 tumor event.
Dan seemed to take it in stride but I have to confess it shook me up a bit. Both of us would love to find a way to stop this disease…all the while reminding ourselves that GOD KNOWS and He is still in control of ALL that touches our lives. It is one thing to know this but sometimes my emotions lag a bit behind my brain.
The 3 treatments are scheduled for June 4th, June 7th and June 11th. In the midst of that, I'll be returning to the cardiologist for an echo cardiogram and a follow-up appointment.
Then last evening, after Dan returned from his golf outing, he showed me that he has hives all over. We are thinking it is most likely a reaction to his chemo. He has a call in to the doctor this morning to find out what needs to happen about that.
So….you know what comes next….we need more prayer. I feel stupid saying it, it is so obvious and yet I feel guilty for asking. You all have been so generous and faithful with praying for us day in and day out for over 5 years!! We know you each have health issues and hard things that touch the lives of your families, too. But when the LORD brings us to mind, please pray for wisdom for our doctors and for HIS grace to fill us with faith and trust in His plan for us.
Thank you so much for sharing this "adventure" with us! Jo and Dan
Saturday, July 28, 2012
Dear SPARK FRIENDS:
I have been very lax in keeping this blog up to date. Below are the links to take you to the main blog site where I keep folks updated about my husband's cancer journey (mine, too!).
The May update can be found at: mccabe-web.blogspot.com/2012_05_01_a
The June update can be found at: mccabe-web.blogspot.com/2012/06/dear
Please forgive me for not getting them loaded here. IT is very time intensive to format it for the blog and then have to re-do everything for here. And since I'm not really a computer guru....I"m pretty fried by the time I'm done with the first blog. I'll try to do better. Thanks for caring and for following our story. I hope it will be an encouragement to others who have little hope from what "science" knows, but can always have hope...if not for this life, then then next, from WHO GOD IS and what HE has already done for us!!
Since then, we have continued to have a wonderful summer here in upstate NY and received family and friends to share out little paradise. Below are a couple of photos:
This is our daughter, coming out of the water at the Piseco Lake Triathlon. She is the third woman out of the water but one of those ahead of her was only doing the swim leg of a relay so she was 2nd of those who were doing the whole triathlon. She still needs to work on her biking in order to be really competitive but she enjoyed the challenge and it was a beautiful day for it. It was the first one I have been able to watch.
This photo was taken before our daughter, Meg, and I did our traditional ride around Lake Pleasant. From here, it is about an 19 mile ride with some challenging hills. I was a little disappointed b/c I had to stop about 3 times to catch my breath on those hills. I think it was mostly b/c I wasn't shifting my gears correctly and that made climbing the hills much more difficult. sigh. I need to find someone who can help me learn this skill faster than I seem to be learning it on my own. Jo
Get An Email Alert Each Time SKIDEE Posts