Dear Praying Friends and Family,
It's early morning on Feb. 25th...I'm sitting in Dan's room at (UC) West Chester Hospital keeping him company till he gets picked up by ambulance to be taken to The Barrett Center for radiation. The place he normally receives radiation is right across the parking lot but bc of Medicare regulations, with him being admitted to the hospital, he cannot receive radiation at a "satellite location" so they have to send him all the way downtown. Yeah.....another reason why we don't want government running our "health care"!!
Anyway....,the last couple of weeks have been pretty hard on Dan. He has had multiple issues overlapping with many drugs which all can have multiple side effects. The bottom line is that his nausea and weight loss were increasing while his eating/drinking and mobility were decreasing and the doc felt he needed to be in the hospital to try to "reset his system" and get the nausea under control and the pain meds working effectively.
Understandably, Dan is not particularly happy about being here, but Dr. Crane and I both agree that he needs to be. We are hoping things can be righted in 3 or 4 days but time will tell. Meanwhile Cocoa and I will hold down the fort at home.
My sister, Sue, and her husband, John, are stopping in later today on their way to Florida. John always gets us laughing and since "laughter is the best medicine", we anticipate his shortening Dan's stay here by a day or so......(no pressure, John).
Thank you for continuing to support us with prayer and encouragement as we go day by day on this journey. We are so grateful for each of you! Jodee (and Dan)
Saturday, February 8, 2014
(Written Friday, Feb. 7th)
Hi folks...... Just thought I'd update the last post...sort of a "post-postscript" of sorts. Today is Friday, Feb. 7th and this morning Dan had his fusion MRI on his brain and his chest CT scan. The MRI shows only a couple of new spots; one, though, is bigger than usual. Often, when they do the brain CT scan to create the hologram (which they use for plotting the radiation) they find more. We are hoping there will not be many more this time. So...PRAISES for there only being two visible at this point and PRAYERS, please, that they won't find many more.
The CT scan of his torso showed that the tumor we saw externally on his back right before Christmas is, as thought, part of the tumor on his R tenth rib. Unfortunately, that indicates disease progression (that was also presumed --thus the change in chemo that occurred right after Christmas) and there appears to be new cancer activity in his lower spine, thus his increased pain. Sigh.
Dr. Breneman (the oncology radiologist) called Dr. Crane (our oncologist) to confer and they may decide to radiate that 10th rib and possibly even the locations of disease on his spine to help with the pain. Right now I'm waiting at Dr. Breneman's office as they create a new mask of Dan's entire head. That is what they use to totally stabilize his head for the radiation. So...PRAISES that we could accomplish two tests, the Doctor's visit AND the mask creation all today. PRAYERS, please, that the two docs will figure out how to best alleviate Dan's back pain while not making chemo treatment less effective, and that the radiation of those brain spots would be able to happen quickly and that they would be effective.
I think I forgot to mention in my last update that we had just seen a back specialist for a second opinion about possible treatment for Dan's back pain. He said that there was so much going on in Dan's x-rays, that it was very difficult to tell where his pain was originating from.....the spine, or the affected rib. They talked about two different surgical procedures but said that at this point they could not promise positive results. Dr. Tobler was going to confer with a radiology-back specialist before making more of a solid recommendation. At that point, we were unaware of the disease progression in his spine found in the CT scan today. So this complicates things even more. So, PRAISES for such amazing diagnostic tools and educated, experienced physicians to interpret them for us. And PRAYERS please, for just the right interpretation of all the data that has been collected so that Dan will receive the most effective treatment and pain relief.
While none of this "news" is very surprising, I have to admit it is a bit disappointing. We were hoping that the change in chemo would cause a decrease in evidence of cancer rather than allowing for an increase. We offer PRAISES, though, that the new spots in the brain, although larger than before, are still small enough to be treated with the miraculous stereotactic radio graphic surgery they have been using.
I'm offering PRAISE that a friend from church was able to get into the conference last minute and so she will be accompanying me. We will be in different tracks located on opposite sides of Lafayette, but at least we will have someone to eat dinner with and decompress with...and believe me...you NEED to decompress after 8+ hours a day of learning!! Please PRAY for Meg, as she becomes chief cook, bottle washer and chauffeur for her dad this week while I'm in Indiana...and for safe travels for Colleen and me as we get to drive through more snow (yippee!!)
Thanks for slogging through all the medical jargon to keep track of us on our "journey". We need and really appreciate each of you and the support and encouragement you continue to give us and all of the many many prayers offered on our behalf!
Jodee (and Dan)
Jodee (and Dan)
Wednesday, February 5, 2014
Yesterday my sister Sharon, emailed us, telling us that she remembered that that was the day of Dan's MRI. Some people are so organized! I sat down and began to write an email to explain where we were and realized that it was time for an update…..so here it is:She is correct that Tues. was, in fact, the day Dan was SUPPOSED to have his MRI, along with a CT scan and then a Dr.'s appointment. BUT last Friday the oncology radiologist's office called to tell us that they decided he should have his MRI at another location, which, of course, meant rescheduling. His nurse offered to reschedule it plus the two other appointments we had already planned around that, for this Friday. I was grateful for that but a bit frustrated that the doctor did not call to tell us about and explain his decision. It is just one of the many frustrations one faces when things are pretty much out of your control .
It has been a hard week. After all of that shuffling around, but on the same day, the office of the doctor who was scheduled to consult about his stomach pain (that appointment was set for today), called to tell us that they had to cancel that appointment and the first new appt. would be a MONTH later! Dan really cannot wait another month to find out what is going on there. The oncologist's office said they would find another doctor. It took them all day to find someone else to do the endoscopy in a reasonable time frame. That is now set up to take place next Wednesday.
The results of that plan are muddied because Dan misread the instructions and was only taking half the marinol (sp?) he was supposed to, which, when you are taking a bazillion meds, is pretty easy to do. Anyway, he was unable to go to church for the second Sunday because of his back pain and general yuck so one of our Biblestudy friends who is a practicing nurse, stopped by after church to see him. She told him he needs to pursue better pain management because there are other combinations they can try till they find something that does a better job. (I have been telling him this but he is reluctant to use the strong pain meds, worrying about dependance developing). But after her pep talk, he let me call the doc to ask if he could take a bit more Percocet. The doc on call agreed but suggested we ask Dr. Crane for Oxycodone without the Tylenol so he could take more without overdosing on the Tylenol. We are emailing him about that today. Never a dull moment!Anyway........when we saw the oncologist last Tues. and discussed the difficulty Dan is having with his appetite, he prescribed marinol, a derivative of marijuana, to help with Dan's appetite and maybe even enhance the pain meds. He is losing weight rapidly again :-( and is down to 170. The doc also pulled back on his chemo to lessen the side effects but the plan is to gradually return him to the original dose as the side effects (hopefully) diminish.
We were scheduled to attend our annual Biblical Counseling Training Conference in Lafayette IN starting Sunday. That is a week long training that runs from 8:30 a.m. till about 5:30 every day and a couple extra sessions in the evenings. He realizes that he cannot go...there is no way he could sit in folding chairs for 8+ hours every day, but he still wants me to go. I told him I'm not comfortable leaving him, especially since he can’t drive. A couple in our Bible Study was willing to stay with him but he hates "imposing" on people. So I called Meg (we are supposed to impose on our kids, right?) to see if she could work remotely from here that week. She had an important meeting Monday morning that she needs to BE at, but will come down after that. Tom will be here Sunday evening and Ill have a friend on call for early Monday so if Dan needs to get anywhere, he will have a ride. (He is on too many strong meds to drive right now.) Thanks, Tom and Meg!
Now snow is predicted for Saturday/Sunday so I’m keeping a close eye on the forecast for Cincinnati all the way to Lafayette! One day at a time!
Meanwhile I'm going to physical therapy twice a week for my wretched feet which, as my podiatrist says, are "a hot mess"! And their being out of whack has created issues with my knees and sacrum...(or did he say it was the other way around?)....you remember the Sunday School song: .......the ankle bone's connected to the shin bone; the shin bone's connected to the thigh bone; the thigh bone's connected to the hip bone....oh hear the WORD of The LORD!, don't you? Either way, whether the problem started in my sacrum or my feet, I've got some things to straighten out...literally! The podiatrist has crafted orthotics for me which I will pick up on Thursday....yet another appointment! Ah yes! Mom wasn't kidding when she said "getting old is not for sissies”!!
This morning we awoke to about 4 inches of new snow topped with a layer of ice. (The grandkids were off school yet again! I'm thinking they might have to go a bit longer in June to make up for some of these snow/cold temp days off!) I wasn't sure I'd make it to my physical therapy session, but after digging out about a third of our driveway, my trusty Honda got me up the long lane to where the city plows had cleared. The roads were still a bit dicey but I got there and back OK. Today was my third physical therapy session. The therapist did some more sonic wave treatment and tried some electro-stimulation, but I was very sensitive to that so he said we needed to do more sonic stimulation first. I now have some exercises to do on my own (ugh) and will do my best to do my part.
What are these interesting objects? No, my new hobby is NOT paper mache sculpting....These lovelies are the plaster molds of my feet from which my orthotics will be made. I get them tomorrow. I’m SO hoping that they help and make walking more comfortable for me, even while the physical therapist is trying to correct my major issues.
Back to Dan….it is THIS Friday that he will have his high definition MRI (I think that is the reason they had to change the venue) , then a CT scan and then the appointment with his oncology-radiologist. I always get a bit anxious about this test (yes, I KNOW I shouldn’t but my body doesn’t always listen to my head!) knowing they are looking for brain metastases. If they find more, I believe they are planning on creating a new mask for his radiation treatments. The one he currently has is the original that has been used for 5 1/2 years! So it looks like we will be spending the day in West Chester.
While our highest desire is to embrace God’s plan for us, we don’t shy away from sharing our hopes/desires with our Heavenly Father. So I’m praying for renewed faith and trust in His plan, all the while hoping that that will include a tumor-free brain MRI this time around.
So that pretty much wraps up the latest medical news from Ashley Lane. Even when our schedules get turned upside down and sideways, God knows what's going on at each moment and He won't be confused ;-) although sometimes we are. Our good friends, Mary Jo and Dwaine know what I mean!! Sorry about missing lunch with you guys!
Again, and again, we thank you for your prayers and encouragement and willing help. We are so grateful for the loving support.
Love ya, Jodee (and Dan)