At the time this blog goes up we should be on the way to my husband’s neurosurgeon, an hour away. He will be removing the staples today from his brain biopsy.
Following this appointment he has an MRI tomorrow. And another appointment the following day for some more blood work. And he should also be starting his chemo pills and radiation treatments on Wednesday.
It has been an unbelievably horrible two and a half weeks for our family. We’re finally getting treatment started to hopefully prolong his life.
The glioblastoma multiform my husband has been diagnosed with has left us with very little hope in general, but he wants to at least try the treatments offered no matter how bad they are. I can’t say that I would do the same, but I’m here to support him in whatever way I can for his decisions.
Every doctor appointment we go to they give me more responsibilities and more to worry about, now and in the future.
We have a minimum of six appointments a week for the next seven weeks of treatment. There will certainly be others thrown in there too. The sheer amount of phone calls and paper work and scheduling is totally overwhelming for me. I feel like I’m hanging on by a thread some days.
I didn’t lose my husband when we were in the hospital and I’m so grateful for that, but I did lose a big part of him and of my life. Currently he can’t do anything. I can’t send the kid to him to change a diaper because he can’t lift over five pounds. I can’t have him take care of dinner like he always did. He can’t even take a shower on his own until the stitches are out. He can’t clean. He can’t drive. I can’t drive either because of my cataracts. To get to an appointment or leave the house at all we need at least one of our parents, sometimes two; one to stay with the baby and one to drive us to whichever doctor we need to see that day. My workload doubled and then some.
My husband is doing well, all things considered. He has his sad moments where it hits him that this might be the last birthday he gets to see for our daughter or when he thinks for too long about not getting to see her wedding or our grandchildren. But he still has some hope. Somehow.
My hope vanished on that third day in the hospital when they told me he had inoperable brain cancer and he would be dying soon. 18-24 months if we’re lucky and he has all the treatments they order for him.
Our four year old knows all of the words. Daddy has brain cancer. He has a tumor in his head. It makes him tired and dizzy. He has to go to a lot of doctors appointments and take lots of different medicines. We’re hoping he won’t have another seizure, but we can’t be sure. The only thing she hasn’t been told is that daddy will be dying soon. We talk about death. But never in relation to our circle of people we can’t imagine living without. We’ll tackle that bridge when we get closer.
For now we’re making the most of every minute we have. I’m cataloging as many memories as I possibly can. Pictures of them together every day. Videos of him reading to her or of them playing a game together. Family gratitude journals. Rings with his handwriting on them. Creative projects that we complete together. Books of love notes for each of us. I’m trying desperately to capture as much of him to keep with us as I can.
One step at a time is all we can do right now. Whether we have him for another week or another decade or longer I’m helping my little family make as many memories with him as I can.