Mathew is still recovering…overall quite well, so no worries there.
Unfortunately there is a tear in his bottom again and with his counts bottomed out it is a painful hell for him right now. Translation ~ it’s hell for everyone but mostly for Mathew. He is taking morphine again for a few days to minimize his discomfort. We tried everything else first because morphine causes as many side effects as it dulls the pain. The ever-popular problem is constipation which is never a good idea when one has an internal tear (fissure) to begin with! Evenings include an Ativan to help Mathew sleep and settle his anxiety about bathroom runs.
We avoided this problem last cycle and hope was high Mathew would sail right through recovery this last and final cycle. He was doing quite well since leaving the hospital until 2 days ago when the bottom trouble hit him again. He was screaming in pain this morning and that prompted us to finally resort to the morphine which finally gave him relief. He is dopey and sleepy, another side effect of morphine, but much more comfortable. We are keeping him on as low a dose as possible, 5 mg for the most part, with the intention of switching him to Tylenol when we can.
The G-tube hole finally closed over so Mathew started having baths again today. Just in time for those Epsom salt baths to help speed healing the tear. The g-tube site looks like another belly button located above and to the right of the real one! It is such a relief to know that there won’t be any infection to compound this final round of recovery.
Mathew received one bag of platelets today and two units of blood. Although his hemoglobin was at 84 the hospital decided to give him blood since his track record usually consists of blood as well as platelets. His platelet count was a measly 14 yesterday prompting the need for the transfusion. Hopefully that will conclude transfusions.
Aside from that the only other news is a certain hurricane making its way to our location. It is supposed to pass by in the wee hours of the morning and throughout tomorrow. This is a hit-and-miss operation; we’ve seen past storms that brought a wee bit of wind and that was about it while other storms that were supposed to pass by unnoticed packed a punch and flooded our area. So we prepared for no power and lots and lots of rain as expected and by this time tomorrow it will be done here. Anywhere from 70 mm to over 100mm of rain is expected so things are going to be soggy for a while. This afternoon was the first time in three days the fog lifted enough to see the blue sky and sun…a bit of a teaser for now!
It is hard to write on the blog right now because my mood waffles from happy to panic quite often. Mostly I believe that Mathew’s tests later this month will show no current activity of cancer…but then doubt creeps in and so does the panic. The last couple of tests were ambiguous and the nature of his cancer is so aggressive that all of his doctors are very cautious about upcoming test results. I want so much for this to be completely over and for the next phase of our life to begin…namely, to get back to “normal” or rather, our new normal. Now that Mathew was diagnosed and treated for cancer in his spine the worry will always be there any time he mentions a twinge of pain or something unusual. This no-man’s land of waiting to see if the treatment worked is stretching endlessly yet at the same time, I almost don’t want to know the test results in case they are too scary to deal with.
For the last year this family has moved in two separate but overlapping circles; that of the normal world and that of the cancer world. While existing in one it is easy to see the other as so far away as to be untouchable. When Mathew was doing chemo in the hospital the outside world was a distant memory and it seemed unfair that people were out there having normal lives and going about their day-to-day business. Then, once Mathew was at home and feeling better, it was easy to slip back into the normal world and get involved in work, groceries and other daily tasks that get shoved aside when treatment or illness strikes.
Right now however we are drifting between these worlds, not knowing which one is going to take precedence… the waiting game again. The scanxiety making us worry. Wondering if the results will be ambiguous enough that we will have to wait for further testing in another month or two. Meanwhile we watch our family and coworkers head into summer, enjoying outings and planning holidays, etc. We are not in a position to join in summer fun just yet and after that long, long winter it stinks. We are tired, nerves frayed and burned out.
As time goes on people forget what is going on over here in our home. It is the nature of the passage of time and it happens to everyone. The shock of Mathew’s diagnosis has worn off and treatment has been going on forever. Other news and events creep in and fill the time of those around us. It was expected and really, life does go on no matter what, doesn’t it? It goes on for us too but still in the little cancer bubble that keeps us secluded from “normal”. People forget that we are still living the nightmare and it isn’t something I like to bring up in everyday conversation.
For today though Mathew is more comfortable than the last couple of days and with all the supporting care drugs working to bring his autoimmune system back up to snuff and with his transfusions today, we just might be able to start enjoying the next month while we wait for all the tests and their results. Mathew is a very live-in-the-moment kind of fellow and it will be nice to get out and about without all that winter gear to drag around!
Happy 4th of July to our American neighbours in the south. And hey you can keep that hurricane you know? We don’t really want it!