First things first: if you read what makes this community great you saw the beautiful work of fineena, of which the scarf Leaves on the Current is wearing in the above photo is an example. fineena was kind enough to send it along as a gift and it is something that delights my beloved!
It was 9 weeks ago that our lives changed.
It has been my practice to offer an update at least weekly.
We are continuing to learn how to live with the cancer. It does not define our lives, but naturally it has a huge impact on how we live and what we do.
We know that the chemo is working, and that her oncologist is quite pleased with the results. As a result we are going to try to get in to see the neurosurgeon to see whether perhaps Gregor (her back brace) is no longer necessary at all time, and also to see about the possibility of moving up reconstructive work. That's the good news. Unfortunately the next available appointment is towards the end of May, so unless we move up from the waiting list for cancellations, Gregor will continue to be a major part of our lives.
We began the third week of chemo, and by now we have a pretty good sense of how things will go. Leaves gets chemo shots on Tuesdays and Fridays, and takes a pill for fourteen straight days. On Tues-Wed-Fri-Sat she takes 20 milligrams of her steroid. That inevitably means that for her evening blood tests on the second day she inevitably has a fairly high level of blood glucose. We know it will happen and that she will need more insulin, just as we know that at the end of the two-week cycle of receiving chemo and for a day or two afterward she will feel really wiped out.
We had hoped that by now she could be working pretty close to full time. Not quite yet, although 7 and 8 hour days, which would be a full day for a "normal" person, are now quite common. It is just that she is used to working four ten-hour days. This week she went in for a while on Friday, normally her off day, to catch up with the backlogged work.
I have now started to seriously explore employment opportunities, either part-time or full-time. I have applied for teaching jobs in the Fall, by when we hope Leaves will be pretty independent. I am also exploring non-teaching opportunities, because I am not so sure that there are that many places that want what will be a 67 year old teacher, even though I am far from burned out. It would be easier to get a teaching job were I still in the classroom, but I do not in the least regret having stepped aside to care for my wife, and to learn a great deal about myself.
We are feeling far more comfortable about her being alone for longer period. This week I had to travel to Richmond where I was at one of the two head tables with Jim Lehrer and his wife Kate (next to whom I was seated) at a fundraiser for the Sorensen Institute of Political Leadership, where I did my political leaders program in 2008. It was the result of being among the few former Marines who have gone through Sorensen, although I was one of three in my cohort. It was a wonderful evening. I was away for about ten hours, with no real problems for my wife.
When I am going to be away for several days, as I will for a forthcoming college reunion at the end of May and for my 50th high school reunion in late June, either one of her sisters will stay with her, or we will arrange for a friend to spend enough time to ensure she is not at risk. We are grateful for all those who have volunteered to help.
As I write this, I sit on a sofa surrounded by folders and documents as I am finally getting to our taxes. Between this and the record keeping and bill paying for the cancer I at times feel almost overwhelmed by documents. It could be very frightening to be where we are without insurance, for which we are grateful. I have had a recent problem with my wrist, which does have arthritis but that was not causing the problem. I have seen my own nurse practitioner, a hand specialist at an orthopedics practice, had a batch of xrays, and am on anti-inflammatory medicine for 60 days, for a total out of pocket cost of two $30 co-pays. I think back to those I would see at the free medical and dental clinics in Southwest Virginia where I volunteer and I know it is not enough to be grateful, we must find a way to pay it forward. The volunteering is part of that. So is using whatever persuasive skills we have to continue to advocate for better policies for all in this country.
I am also being warmed by the oldest and largest (17 pounds, down from 19), of our four remaining rescued cats. As they age there are issues, but we are so grateful for their love we would never complain, nor would we ever begrudge them whatever would make them happy, because of the joy they continue to bring into our lives. That one or two may occasionally not confine their activities to the cat pan? It is a small price to pay for the joy they bring us.
With the exception of the trip to Richmond, I have now gone two weeks with no meat, beer or ice cream. Leaves says I don't have to do that for her. And yet - I really need to do it for my health, and I need to be healthy to be available for her. It is saving some money as well.
This past week I could not do all the activities I would have liked. Before my wife got ill we would often spend several evenings a week apart. I don't feel comfortable doing that now. Nor do I want to be away for more than a few hours when she is at home either on her telecommuting day or on a non work day. Even when we are in different rooms, we can immediately respond to one another, being present without imposing.
And should she have an odd food request, because at that moment it appeals to her? Well, it is such a joy to run out, say to Duncan Donuts for a raspberry coffee and a tasty muffin, and to see how delighted it makes her. Or if she asks me to make a sandwich of whole wheat bread, her Smart Balance spread, fresh tomato and cheddar cheese, I will also add some sea salt and freshly ground pepper and be happy that she has the appetite for that.
We ARE lucky.
We have been given an opportunity go grow in love.
We are still impatient, at times irritable.
We are still very much human.
It may seem surprising after almost 40 years together, but we have learned a great deal about each other in the past 9 weeks.
We have each also learned a great deal about ourselves.
Friends and family tell us that they appreciate our keeping them informed, especially as we are not as much out and about as usual. This morning neither of us got to a religious service. She needed to sleep and I was not going to wake her up, put Gregor on her and have her try to go back to sleep with that encumbrance, so I stayed home as well.
Cancer is not a death sentence. Our support groups include people who are living with cancers far more serious than ours. That helps us keep things somewhat in context.
Life goes on.
We will have ups and downs.
So far things have gone about as well as we could have hoped.
We know that may not always be the case.
We think we are now better prepared for whatever down periods may occur.
We remain grateful for all the love and support.
For me, I think I am finally learning to let go and accept help. That's hard.
I wonder about the future, as does Leaves. We do not know what may come next. We ponder, but we do not worry.
we have each other and the cats.
We have been surrounded by love and caring from so many direction.
We know how lucky we are.
We thank you all.