Hard to believe another week has passed. My body and mind are crying out for some stress relief. I have not yet figured out what form it should come in. I guess if I knew that, I would be able to relax. Walking and hot baths seem to be the best way right now, and honestly there doesn’t really seem like much time for either of those anymore.
If I wasn’t a hypochondriac before all of this (and I probably was), I definitely am now. Possibly not in the true definition, because everything I need to see a doctor about is actually a real thing and not just imagined (and I think hypochondriacs just make up their symptoms), but I strongly suspect that most of my aches and pains are brought on by stress. I am starting to find myself at the doctor almost as much as Ben, and its troublesome. I’m afraid I may be locked up soon. While most of my issues are actually doctor worthy complaints, it is a fact that I can no longer even experience something as simple as a knee pain without going to a deep, dark place in my mind. What if….
This week brought about a trip to the kidney / bladder specialist. Not for Ben, not even for myself, but for Zak. Between my history and now Ben’s, our kids have to start being checked at age 19. Add a few more worries to my plate. Nothing like adding the worry of waiting for test results for your children in addition to waiting for results for your True Love and also for yourself.
I guess on the upside, the one good thing about Zak having this appointment with Dr. A (who has also been my bladder doc for about 15 years and was originally Ben’s kidney doc) is the fact that I was able to get in to see him too while I was there with Zak, without having to get a referral. Huge relief for me, because the last few weeks have been miserable for me and my bladder. Again … probably caused by stress, but a very real and extremely uncomfortable problem nonetheless. He gave me meds and they seem to have worked. Cross one worry off my list – now only about 3 or 4 waiting in the background.
Zak was pretty good natured about his appt with Dr. A. I guess that comes with the blissful invincibility of youth. I did chuckle when Dr. A asked me to leave the room for a minute because he wanted to examine Zak. I believe Zak’s exact question was “Huh?” And I responded “He needs to feel your junk.” To which Zak replied, “Well thats awkward.” Haha.
On the 22nd we finally got an appointment with the new oncologist (Dr. Y) who works outside of the BC Cancer Agency and is allowed to administer the Nivolumab to Ben. When his assistant called to book the appointment (after I hounded Dr K via email several times to let him know that we had not yet heard anything) I asked her “Will Dr Y start the Nivolumab at this appointment?” and she said “No.”
She said that Dr. Y needed to meet with Ben and talk to him first. Holy crap … I almost lost my mind. How much talking must we do? Ben is exhausted. We have talked our faces off for the last 7.5 months. We have discussed everything with Dr. K. Ben has been without any treatment at all for over six weeks. We have begged for and received the drug coverage. Give him the drug already!!!!! Nope.
We dutifully met with Dr. Y in Burnaby, and absolutely nothing new came out of the appointment except more wasted time, in my opinion. The good news is that he agreed to administer the Nivolumab. Actually, what he said was “I don’t disagree with Dr K’s opinion on starting Nivolumab.” Well yippity do dah day! Lets get on it then. Time, it is a tickin’.
When does Ben start, you ask? Who knows. Once Dr. Y agreed to administer the drug, he sent us to the hospital pharmacist to begin the process of ordering the drug. Thats right … it hadn’t been ordered yet. Even though we have coverage and he had all the emails confirming the coverage. I guess he didn’t want to have the drug pre-ordered until he knew he was going to actually agree to give it to Ben. I’m not sure what reason he imagined may have caused him to say ‘no’. But either way, it hadn’t been ordered and its not a drug that you can just pop out to the drug store and pick up. He figured about five days. FIVE DAYS. Really? Another FIVE days?? And that’s if all goes smoothly with the ordering of the drug and the direct billing etc. Even then they will have to find time to book the appointment to actually administer the drug to Ben. It is my plan to call Dr Y’s assistant tomorrow to check how they made out. I will get that drug if I have to drive back east myself to pick it up.
Our next stop was an early morning appointment to see Dr. H at the pain clinic in Vancouver. We had a long discussion about Ben having a procedure called a cordotomy.
“Cordotomy (or chordotomy) is a surgical procedure that disables selected pain-conducting tracts in the spinal cord, in order to achieve loss of pain and temperature perception. This procedure is commonly performed on patients experiencing severe pain due to cancer or other diseases.”
It has taken Ben quite awhile to wrap his head around this idea. It is a permanent procedure. There is no going back once that nerve is severed, and severing of the nerve means a permanent loss of any ability to feel temperature or pain. But the pain, for Ben, no longer serves a purpose. We already know that something is wrong, and we know what it is. He doesn’t need his body to constantly experience pain in order to alert him that something is wrong. I think he understands that now. I very much would like him to no longer be in pain, and I believe that constant pain prevents true healing. It scares him to think about not being able to feel temperature, and I totally understand that, but unfortunately there is no way around it. Dr. H assures us that a cordotomy does not affect sensation of the skin when it comes to feeling touch.
There is only one neurosurgeon in BC who performs cordotomies. He has a two year waitlist, but Dr H says that he pushes everything back for cancer patients. Lets hope so. We are now also waiting for that call. Apparently the neurosurgeon is a skier who likes to go away for Christmas, so it is Dr H’s hope that he will fit Ben in for the procedure before the holidays. Merry Christmas to us.
On Friday the Home Care nurse arrived at our house for a consultation with Ben. Poor Ben was so exhausted he kept falling asleep while she talked. You know Ben is really tired when the nurse is about 25 years old and super cute, and yet he still falls asleep! Lol.
I found the visit with the nurse difficult. When she asked how she could help, Ben asked her for a hospital bed to be installed in the house, and for a walker. Sigh. Thats a hard pill to swallow. Ben thinks that a walker will help him get outside to try to walk around the block, and of course exercise is so important and necessary. I do think it would be very helpful for Ben to be able to exercise even a little. As of today he has lost over 50 pounds since May, and sometimes he feels so weak that he cannot walk up the stairs. So he really needs to try to exercise and build up some muscle, and if that means using a walker for awhile then so be it. I LONG to be able to walk around the block with him. We used to go for long walks together, and I miss that very, very much.
We spent the majority of the weekend cleaning out our home office on the main floor so that the hospital bed can go in there. That way, if Ben is unable to make it upstairs he has a comfortable place to sleep.
Cleaning out the office was no small task. For those of you who know us well, you know that the state of the office has long been a bone of contention between us, because Ben is a HOARDER and a total slob. It is total chaos in there. (Sorry honey, but our readership deserves the truth. lol) We used to share the office, but I was run out because it gives me panic attacks just to set foot in there. I had to hang something over the glass door just so that I can’t see the mess. In fact, it was so disgusting in there, that when I cleaned everything off of the bookshelf so that I could pull the bookshelf out, I actually found crumpled up garbage on the top of the 7′ shelf. Which means that Ben actually had to crumple up the garbage, and instead of putting it into the garbage can right beside him, he had to have purposefully thrown it up on top of the shelf. Seriously? So that gives you some idea of what a big job this was. The room was like the aftermath of Hurricane Katrina.
Ben was stressed out at my attempts to clean up the office to make space (hoarders get stressed when someone tries to clean up) so I compromised by running out and buying a tall, narrow set of drawers so that his papers (aka: junk) can be shoved into the drawers and out of sight, and yet not thrown in the garbage. The problem is that the set of drawers I found comes in a box with a set of instructions to build them, and neither of us (for different reasons) were able to put it together.
It was Kirby to the rescue tonight. He even brought his own tools. He even read the instructions. And re-read them, and re-read them, and so on…. it took him about 45 minutes to understand Step 2, but who am I to judge? Haha. Just kidding Kirby – we are most grateful and appreciative.
We did manage a bit of fun this week. If you click on the pictures you can read the captions:
And if you recall, Ben was unable to make it to his Troop reunion in Ottawa on Friday night, so his troop mates came to him in the form of Face Time. It was extremely emotional for Ben, but so heart warming to see them pass around the phone and send love to Ben. 12-12-24!!
Hard to believe it has been almost a quarter century since these pics were taken! That is Ben in the front of the first picture, sitting on the ground with his troop mates holding him up. In the second picture he is in the very back – white shirt with a black hat in between the two in blue shirts.
Thats it for this week. Hopefully my next post will be about how Ben received the Nivolumab and felt the beneficial effects really quickly! In the meantime, I will leave you with this other little piece of normal life:
Look closely and you will see that both these beauties are now four-eyed geeks like their mother was for 20 years before laser eye surgery.