Well, while I’m still congested, I am feeling a lot better this morning. My cough, sneezing and runny nose have almost reached tolerable levels. And even better, Edie’s transplant doctor says she may be able to come home this weekend.
Of course, if I’m not totally recovered that isn’t going to happen, but things are looking up, and I’m optimistic there will be an eventual end to this entire ordeal, sooner than later.
It’s been 9 days since Edie had her transplant (12 days since she went to the hospital), and while Edie appears to be progressing well, I am only getting worse.
It seems it may not have been all the stress that has gotten to me, but the flu (or at least a very bad cold) instead.
While my sore throat is gone from Sunday, it has been replaced by head congestion, a runny nose that doesn’t seem to want to quit, sneezing, and a cough that is causing me to develop another sore throat.
So here it is, 4 days since I’ve been able to visit Edie, (or even get on my bike), and there doesn’t appear to be any relief in sight. I’ve even resorted to taking some over the counter medication (which is against my better judgment) to help alleviate some of the symptoms.
Unfortunately they’re not doing much good.
And to top it all off, the bluetooth mouse for my computer has stopped working for some reason, making navigating the internet very cumbersome, and it looks like the stock market is heading for some more heavy losses this morning.
My only hope is things can’t get much worse.
NOTE: At least I have been able to regain the use of my mouse, by restarting the computer, and going through the set up procedure again.
I think the stress of the last week has finally gotten to me. [At least I hope it's the stress, and not something more sinister.]
I felt lousy all day yesterday (never even got out of my pajamas), and don’t feel any better today. My throat is sore, I’m sneezing, my nose is runny, my spleen and liver feel larger than normal, and I’m just run down. Didn’t even go for a bike ride, or visit Edie yesterday, which is making me feel even worse.
She was a little bummed about that, but she did receive an email from her brother and sister-in-law (who she has never met) in Ohio yesterday, so I think that cheered her up some. We haven’t kept in touch with much of the family still living in Ohio, since we left in 1982, so it was good hearing from them, and learning how well all the family is doing.
It was also good to learn Edie’s brother Earl, a real plumber in Ohio (most of Edie’s family in Ohio were plumbers), is an Obama supporter, and is even helping on the campaign. I knew there was a reason I always liked that man!
Anywaze, Edie needs some clean clothes, a new pillow and some other stuff, so I will be making a trip to the City of Hope today, but I don’t plan on staying. With her counts as low as they are, I don’t think that would be a good idea. I’ll just drop them off in the lobby, and see her from afar.
It’s been a week now since Edie went into the hospital, and it sure isn’t getting any easier. And even worse, I’ve got at least two more weeks of the same to look forward to.
Having to go to work, grocery shopping, the laundry, making sure Sylvia eats, keeping up with my exercise routine, and visiting Edie in the hospital is starting to take its toll. I’ve never had to do so much for such a long time with no help, and I’m just not sure I’m up for this.
One thing for sure, I’ve certainly developed a new found appreciation for single parents (especially those with small children), and what they have to endure.
Fortunately Edie’s doing pretty good so far, and she is keenly aware of my limitations, so that removes some of the stress of the situation. It’s just not enough.
So if you’d like to help, and have some time, stop in and visit Edie. Despite the fact I had previously indicated visiting wasn’t a good idea, I think Edie would appreciate seeing some other familiar faces, and not have to listen to my whining all the time.
Last night as I was surfing the internet, I was startled when I heard Sylvia holler MOLLY.
Molly was my my mothers name, and she died some 10 years ago.
Sylvia then came running (ok, that is an exaggeration) into the office, and asked what was that bell? Did I hear a bell ringing?
Well there wasn’t any bell. Obviously, Sylvia had awoken from a dream, a nightmare, or whatever during one of the numerous naps she takes throughout the day. She soon realized there was nothing wrong, but I’m not so sure she knew she even hollered my mothers name, and I didn’t feel it necessary to ask.
Still it sent chills up my spine.
Oh, and BTW, in case you haven’t received an email from Edie, she is doing fine.
Edie received her stem cells around 11 AM today, with little, if any fanfare. She was somewhat drowsy afterward, but only because of the Benadryl they gave her to prevent any allergic reactions. It was also good that City of Hope offers room service to all their transplant patients, so it was easy getting lunch when she awoke.
It’s almost like being in a hotel. Emphasis on “almost”.
Well, here it is one day before “Day 0″ (the transplant), and the reality of all this is finally settling in. I know I’ve been preparing for this day for several months, but that doesn’t make it any easier.
I’m not sure how I’m going to deal with the next two weeks, making dinner for Sylvia and myself every night, the thought of not being able to share a good bottle of wine with Edie, and sleeping in that great big bed alone.
Oh well, at least the City of Hope makes it very comfortable for the transplant patients. The rooms are nice size and private, and even have a DSL connection for accessing the internet.
But no one will ever mistake this ordeal for a vacation, as evidenced by the numerous drugs and monitoring devices attached to Edie (not sure what the flashlight is for though), and the ordeal visitors have to go through.
Before entering the room, everyone (doctors, nursers, technicians, and the catering staff included) has to wash their hands, and put on latex gloves, and this very uncomfortable face mask. And so you don’t forget, there’s a sink, gloves and face masks at the entrance to each and every room.
I know there’s good reason for all the precautions, which should become more evident in the next couple of days, as the Melphalan does its dirty work, and after the transplant, but that doesn’t make it any easier to deal with.
So if you were planning on a visit, I would recommend against it. While I’m sure Edie would appreciate seeing everyone, she would probably feel worse knowing how uncomfortable you’d be.
Calling, emailing or instant messaging are much better options.
Hi, my name is Marc [that's my wife Edie beside me], and I have Mantle Cell Lymphoma, a typically aggressive form of lymphoma, except it so seems in my case.
I was diagnosed over 9 years ago, and have managed to survive since then without treatment, by following a few simple rules. Eat a [mostly] well balanced diet, exercise (cycling, at least up until recently), abstaining from taking supplements or any medications, drinking 5 to 6 cups of [Japanese] green tea a day, and most importantly [lots of good wine], flossing and brushing my teeth twice a day, everyday.
I started this blog mainly to chronicle my life, putting down in writing what goes through the mind of a cancer survivor (although I have been seen straying into unrelated areas on occasion), and along the way help educate others about lymphomas and other blood cancers, and filter out some of the hype and misinformation so often associated with the internet, which unfortunately there is plenty.
You can read a lot more about me by clicking here