Since last Monday, so now already one week, I am back home. On Thursday I was at the oncologist in Winterthur. I’m doing well, the blood values are even better – and yet we are also weighed down, because the therapy is not yet over …
Dear family and friends,
I was actually discharged on Monday, December 13, 2021; so I’ve been home for 1 week already, and I’m doing fine! Only the appetite is still a bit strange, and of course I notice that the physical strength must still increase. Thanks to the good blood values, the water in the body that had accumulated in the hospital (several kilos) has also been reduced within this week. This is really good news and reasons to be very grateful.
Now we are looking forward to time together with our children during the coming holidays; of course, I still have to be careful not to catch an infection during these first weeks. I also won’t be going to church or visiting elsewhere until the end of the year. My oncologist warned us on Thursday that I would be one of the “high-high-risk” people as far as infections go.
I came through this very challenging therapy for the body well, where for the second time my bone marrow and thus blood formation was completely destroyed by the high-dose chemo. My own stem cells, which I received two days after the chemo, already showed an effect on the 9th day afterwards, and in the meantime the blood values are for the most part back in the normal range. This was the result of the examination in Winterthur on Thursday. This is really a reason for great joy.
But what still weighs on us is what is in the headline: “After the therapy is before the therapy …”. The oncologist opened up to us that there will initially be a consolidation phase starting in January 2022, which will be similar to the first phase in cycles. However, the two planned cycles last four weeks; in the first two weeks of the cycle, I have to go to the clinic twice a week for infusion and injection, plus take cortisone tablets at home. Weeks 3 and 4 will be a break. So that will be in January and February.
Starting in March, the so-called maintenance therapy will follow for 2 years, during which I will have to travel to Winterthur every 14 days to get an injection; this is the same cancer drug that I already received in the first phase.
In parallel, a vaccination program staggered over 2 years for basic immunization against all childhood diseases and with other usual vaccinations will begin in spring 2022. In addition, over this time, a bone-building program with regular medication to strengthen the areas damaged by the myeloma and prevent new damage.
The oncologist had spoken of this phase of maintenance therapy in general terms early on, but it wasn’t until last Thursday that we realized the implications in detail. It is not over yet! The last few days it has been weighing us down a lot. Will hospital appointments thus continue to dominate our calendar and limit our freedom of movement? How will we still manage to live with the disease rather than for it? How strong will the side effects of this drug be in the long run, which I had already experienced in the first phase, albeit in a mild form? Should we do this therapy at all? Is prolonging life at any cost important to us? Can’t we take our chances and wait until the (incurable, or only curable by God’s intervention) disease breaks out again? These numerous questions occupy us and stir us up inside. At the same time, we are currently experiencing severe courses of illness in our family and friends, where we are also suffering.
Yesterday evening I had a longer phone call with a friend who has the same disease and has been on this maintenance therapy for a year; after the 14-day injection he always feels totally weak for 1 to 2 days, and the subcutaneous injection causes burning and severe itching.
After that, I suddenly realized: “Now, thanks to God’s grace, you got through the second high-dose chemo so well, and even so far the therapies have gone with moderate side effects; don’t you want to trust that you’ll get through the maintenance therapy just fine – you don’t have to have the same side effects as your friend?” Since then, I have become calmer inside, and we have decided to approach the therapy with gratitude and a positive attitude. We are encouraged by the verses from Psalm 112 that are above this blog post.
Thank you for all of you who have sent encouraging messages and prayed for us during this time; we appreciate you continuing to do so for us.
PS: There are medications – especially those in liquid form – that are increasingly difficult to take without nausea, especially if there is already some underlying nausea hidden by the chemo. These include bowel decontamination agents, which I dutifully took during my first high-dose chemo, even though the doctor told me (though not for several days) that they were optional. In fact, they made me quite nauseous a few times. That’s why I didn’t take them now the second time, because the very thought of them made me nauseous. This time, however, they were supposedly no longer optional, but “prescribed”; so I had to dispose of them another way. My sink’s spout was a bit clogged at first; but after a few days of “disposal,” the water drained better and faster. The nurse, to whom I confessed this on one of the last days, had to smile. However, I would strongly advise against imitation!