Wednesday, Apr 9th
Judith has a meeting in London at the beginning of May. I'm planning to use her frequent flyer miles and tag along. After brief visits with friends near London, we will try out the Chunnel and go over to France to see a good friend there and then take leisurely tour of Normandie to see the apple blossoms and Judith's ancestral villages. At least that's the current plan. I have stayed pretty much the same for the past few weeks and if that holds up, I should be able to negotiate the trip.
Now we just have to fit the chemotherapy treatments, MRI scans, and doctor visits around the trip. This trip feels a little bit like a Farewell Tour, but some performers manage to keep "farewell tours" going for years and years, and maybe I can do the same.
Sunday, Apr 20th
One of our friends has a tradition of Easter afternoon pot-luck garden parties. We went again this year. The weather was beautiful and it was delightful to see many of our friends again.
Altho I think of myself as being fairly stable over the past two or three months, I believe I am somewhat worse - and much worse compared with last fall. Judith and I had a serious talk about my mental and physical changes this afternoon She thinks I am slower mentally, altho I normally do not notice this.I definitely notice the physical failings, however. Walking to Caffè Verona and back (about 2 miles) is my limit, I'm quite unsteady, and going up or down stairs without a railing is risky.
Nonetheless, we're still planning the trip to England and France. We're leaving a week from Tuesday on the 29th, and will be gone about 2 weeks. I'm trying to decide if I should request a wheel chair for the airports.
Happy Easter,
Don
Monday, Apr 28
Tomorrow Judith and I are flying out for a two-week trip to England and France (see Apr 9th). That means I won't be updating this page until after we return in mid-May. It also means that I feel good enough and stable enough to go on a long trip. (I had another MRI scan today and we will see what that says). I will have to make some accommodations on the trip, however, and I have ordered a wheelchair for the airports, for example.But I still hope we can have good visits with friends and have plenty of "couple" time too. Now, if the sun would just come out in Europe.
Friday, May 16th
Just a quick update, because it's been a while. I'll fill in more details later - maybe even some photos.
We're back after a great trip to London, Paris, and Normandie, France. The weather was often good, and I benefited from the slower pace and using wheelchairs in airports and museums. By the end of the trip, I was feeling as strong as when we started. That feeling was confirmed at a couple of doctor visits today, where the Apr 28 MRI scan was reviewed. Susan Chang's summary was "Stable or slightly better". Sounds positive to me, so I will continue on the current treatment of BCNU and Accutane, starting Monday.
Thursday, May 22nd
I'm doing relatively well. I had my 3rd BCNU treatment on Monday and started 3 weeks of daily Accutane on Wednesday. We will see if it is helping in about 6 weeks when I have another MRI scan. My energy and overall condition seem to be improving slightly.
Our house is a complete mess now, but in a good cause. You may remember that I was attempting to install a bamboo floor last fall. But it was dragging on for months, and I eventually gave up and finished off the first half of the job (closets and a hallway). A professional installer came in to do the den on Tuesday. The last two days, workers have been here to rip out the existing floor in the kitchen and put in a new vinyl floor. In the meantime, furniture, books, and pots and pans from the den and kitchen are stuffed throughout the rest of the house. We're hoping to paint the den this weekend. Wish us luck.
Tuesday, June 3rd
Our house is almost back together. We have a new bamboo floor in the den and a new vinyl floor in the kitchen. Over the past several days, Judith and I repainted the den (from white to a light, warm yellow-brown) and moved the furniture back in.. We just have to finish sorting thru the books and deciding which ones to keep. At times all this activity pushed my strength and energy to the limit, but it's great to have the house emerge from being "in construction". I think the den will be a great retreat.
My general condition fluctuates a bit day to day, but remains essentially stable. I should have a few photos from our European trip posted later this week.
Wednesday, June 4th
My strength and energy levels were a little down yesterday, but today I seem to be back to normal, and I've posted a few photos from our trip to England and France.
Sunday, June 15th
Well, it has been just a little over a year since my encounter with this brain tumor began. I was in the hospital at first for a biopsy and diagnosis, and then was in fairly good shape during the late summer and the fall. My condition took a serious decline around the end of the year, but I've been relatively stable since then. Opinions vary on whether I'm getting slightly better or slightly worse.
This past week, I've been energetic and worked on several outdoor projects. On the other hand I've lost my balance and fallen several times. On Saturday, Judith and I were walking home from Caffè Verona and the farmer's market. I crossed a street, paused on the opposite corner, and then fell over backwards. I got a good bump on my head and a couple of minor scrapes elsewhere. Luckily a wise man in an SUV stopped and warmly but firmly insisted that we accept his offer of a ride home.
So, it has been a momentous year, and the road goes on.
Tuesday, June 24th
I think I have discovered that my balancing ability can vary greatly within a few minutes. The other evening, I was cooking in the kitchen when I suddenly started to lurch wildly about. Luckily there are enough cabinets and surfaces around the kitchen that I was always able to catch my self and not fall. I sat down in the den and 15 minutes later, I was fine again, and remained fine for the rest of the day. A similar sudden loss of balance may be the cause of my fall while walking home on June 14th.What is puzzling is that my balance has been generally better lately, as I have noticed on a number of tasks such as putting on my pants, going up and down stairs, and working in the garden. It will be worrisome if my balance can suddenly go bad without warning.
I've had an unexplained lump on my forearm for two or three days. It wasn't going away, so Judith took me into the clinic this morning because we were concerned it might have been caused by a blood clot. By chance the urgent care doctor this morning was our neighbor. She diagnosed the problem as cellulitis, prescribed some antibiotic, and invited us over to her house for a chili tasting this evening.
With that happy ending, I'll say "Good night, all".
Monday, July 7th
There's good news and bad news these days. Let me start with the bad news.
My mother has been diagnosed with a serious case of B-cell lymphoma, a type of non-Hodgkins lymphoma. She had her first chemotherapy treatment today. My father has been failing mentally and physically for the last few years and she has been taking care of him, so now they will both need care. I'm thinking about if and when I (we) should go back home for a visit. My parents live in western New York state, so it would mean flying back for a week or two.
And my balance continues poor. I've had a few more falls, resulting in some bumps and scrapes but no serious injury so far. I will discuss increasing the steroid dose with my doctors if it seems these problems are caused by edema
The positive news is that, except for the balance problems, I'm generally feeling fine with good energy. I had my regular MRI brain scan last week. My oncologist's quick summary in a phone message was "things look a little better". I'll learn more when I talk to both oncologists within two weeks.