A state of “We Don’t Know”

It appears that the first part of 2020 is going to be a state of “We don’t know”, “we need to wait and see” statements from our medical professionals. Kind of feels a bit like throwing spaghetti at a wall to see what sticks mentality. I’m sure that’s not what is going on, but it certainly feels that way when you don’t have any good answers to questions about what is going on inside the brain.

Yep, the brain is a mystery.

Since New Years we have been trying to get back into a routine with the kids back at school and Dave slowly, so very slowing, improving. Some things have gotten a bit better, no new seizures, while some things have not, weakness in the right hip flexor impacting going up stairs. The hip flexor issues showed up after the run of chemotherapy, or at least that is what we recall. There was some weakness on that side when Dave was admitted to hospital, but it seemed to have gone away when he had come home.

The birthday week for us had both good and bad things.

Bad: it was FREAKING COLD. Good: all of our vehicles started with no issues the entire week.

Bad: Dave landed in the Emergency room on Jan 13 after throwing up his medication in the morning. He was supposed to have a physio therapy appointment that day, which now needs to be rescheduled. He was concerned about a couple of things which drove him to go to the hospital. The primary concern was not getting his meds and having another bad seizure (the last one really hurt and scared him). Good: no seizure, just backed up (constipated), fixed with a table spoon of MCT oil.

Bad: Because of the hospital visit we weren’t in a space to go out for my birthday dinner (Jan 14). Good: I finally got in for a massage, it was glorious.

Bad: Forgot an entire day of medication (Jan 15). Medications were remembered at 3am. I woke up to Dave crying that night, before we finally figured out what was going on, he said he felt that death was coming for him. Once we figured out that he hadn’t taken his medication that feeling subsided really quickly. Good: No seizure or any other negative consequences.

Bad: A bunch of cancellations for Dave’s 40th Birthday Celebration due to sicknesses, flat tires, and the BITTER COLD. Good: still had fun with family and got to know a couple of new friends a bit better. Oh and cleaned up the house a whole bunch so we don’t feel as bad having people over when we are still under construction.

During the taper we have been on the watch for some of the OCD and mania we saw with the first steroid go round. Some facets of this have manifested, but it has been manageable and the no sleeping part hasn’t come up, and I hope doesn’t. Dave realizes this time that he feels better with proper sleep and is doing what he can to ensure that he is getting quality rest. The hyper organizing has however come back and I now don’t know where anything lives in my house, and Dave has forgotten where he has put many of the items. We lost a potato peeler somewhere, and it was my good one.

The hyper organizing has however come back and I now don’t know where anything lives in my house, and Dave has forgotten where he has put many of the items. We lost a potato peeler somewhere, and it was my good one.

The first of the monitoring MRI’s was performed on Jan 14 and is part of a research study being conducted looking at how images are taken as the contrast moves through the tissue to see if that impacts how clear an image may be and if there is more or less ability for the doctors to determine if there is new tumor growth. This was intended to be our baseline MRI.

Jan 23 was our follow up with Medical Oncology to find out how the blood work looked as it related to medications, find out about the MRI and when the next run of Chemotherapy would be. It was also our opportunity to address the muscle weakness and a few other concerns that Dave had related to what was going on with him.

There were a couple of concerns that were raised at this appointment. First concern was from the nurse as she weighed Dave in, they do this each time so that they can adjust the medication based on weight, as he had lost about 10lbs since his last visit. Not surprising as he hadn’t been doing anything really active to maintain the muscle mass since the beginning of December. It’s amazing how quickly you can lose muscle when you aren’t doing anything to maintain it. The concern was only on the nurse however, as it wasn’t mentioned by the Doc at all, which doesn’t surprise me as really 10lbs in a month isn’t a huge loss and he was still maintaining his diet.

The second concern was in regards to the weakness of his right leg, specifically when climbing stairs. Apparently, the steroid can mess with how muscles move, but this is usually unilaterally across both the hips and shoulders. Dave’s issue is only with one hip and specifically with one motion more than others, and nothing with the shoulders. Conclusion, the December seizures might have done a bit of damage or caused more irritation to the area that controls the strength on the right side, and that the irritation hasn’t fully settled yet. This led to an increase of 2mg of the steroid instead of a continued taper to get off of it.

Want to watch a medical professional get really uncomfortable…tell them you are thinking of traveling out of the county and ask for their opinion on if that is safe. There was a noticeable relaxation when we indicated that our travel wasn’t until, potentially, May. Before she gives the go-ahead she wants to see the strength come back in Dave’s leg, which is completely understandable. She also wants to see more stability in the brain scan, again completely reasonable.

The results from the MRI were somewhat inconclusive due to the December seizures, the intense side affects from radiation and the high doses of the steroid Dave had been on. There was one spot that they will be watching, but no new growth within the original tumor site and the other nodule that was concerning appears to have stabilized. I always knew that I didn’t like living with unknowns, but this is our life currently so it’s something I will have to just find a way to get used to.

I always knew that I didn’t like living with unknowns, but this is our life currently so it’s something I will have to just find a way to get used to.

Anxiety all around has been a bit of an issue this week, but some of that is because Dax has a report card coming home next week and we haven’t seen the improvements with Dave as fast as we did after surgery. We continue to work through these things with the kids to ensure they are okay and are ready to engage professionals should we need to.

We also appreciate all of the support that we have received from family, friends, acquaintances, colleagues and our entire medical team. We have a wonderful network that has been so very supportive in all the ways we need them and it is truly awe inspiring. I don’t have the words to indicate how very grateful we are to everyone who has either helped through our gofundme or sent well wishes, healing prayers, healing intentions and healing energies to us, I truly don’t have the words, except Thank You all so very much.

Our next steps are another round of Chemotherapy starting Jan 24, which is a bit stronger than the last one, and starting some additional physiotherapy to see if that improves the leg issue. One step at a time, as slow as they may be.

OHH, he’s still hairy. Now playing around with different facial hair styles. I might have to share some pictures.