August 30: general stuff

Just before Labor Day weekend and while I don't have anything in particular scheduled it's great that the weather looks good for those of you who have outdoor activities planned. I'm now at the point that I feel good enough to start doing more, unfortunately that also seems to mean eating more! Running errands, although mostly staying around home. I still prefer to be at home where there is a couch immediately available. I'm really happy being a homebody. Just now starting to feel more social. Also feel like the fog has mostly lifted from the "pump head", which is the effect that you get from having your heart stopped and being on the bypass machine. While everyone says that I seem perfectly normal, I can tell that my mental processes are not up to snuff for more complex thinking and multi-tasking.

I continue to walk at least every other day and am almost double what I was doing. I decided to hold off on the swimming for a couple of reasons. First, I get so tired still when doing anything with my arms. If even washing my hair is tiring, then expecting more than one or two laps in a pool is probably not going to happen. And it seems like quite a production for that small amount of swimming. Second, and really good news, is that where the back muscles were cut open on the right around the shoulder blade from the thoracotomy seems to be closing up. This makes blowing my nose less painful. I assume that it is because I've been doing so little for seven weeks with my arms and torso. So I don't want to risk seperating it again by swimming too soon. So I'll go next week. Maybe!!

Hoping everyone has a happy and safe Labor Day. Thanks for checking in! Laurie

August 21: general update on me and others

Improvement continues on a slow, steady basis. Now at the point where I am feeling good enough to do more and start doing too much and then suddenly realize that I am exhausted. Also trying to increase my stamina by staying out of the house for longer. This only works when I can sit a lot, but this is how I integrated into "normal" life before. Planning on going to the YMCA nearby and checking out their facilities with the eye of using the swimming pool. This would allow getting my torso and arms exercise without too much stress on the chest incision site.

Just drove for only the third time--for an hour to my hairdressers. Some things are just worth the trip!

In follow-up regarding frequently referenced friends and family in these postings:

-Mom injured her arm when returning from Boston by deciding to take the moving sidewalk at the airport with a cane in one hand and a suitcase in the other. (This despite Beth, Brenda and myself insisting that she use a wheelchair, which worked well on the way to Boston.) She was already a little sore after having wrenched her hip stepping into the sump pump opening before coming up. Sigh. Well, she has a small rotator cuff tear and is doing PT, hopefully avoiding the painful and not very correcting surgery.

-Beth has happily returned to her many activities and charity work down in Virginia. Her next trip will be to Italy to see Susan in October. She and George usually stay for several weeks.

-Brenda just learned that a good friend of hers is in John Hoplins with a heart problem that required a pacemaker (no details) and pulmonary fibrosis. Please keep Natalie in any prayers that you may be sending out.

-Joanne's father just had major surgery today to remove the lower part of his esophagus due to cancer. Surgery went well with no evidence of cancer spread, and they were able to pull the stomach up enough to compensate for the amount of tissue removed. While he will have to have a PEG tube (tube directly in the stomach instead of swallowing) for 3-6 months he is very stable now. Please include him in your prayers as well.

Well, that's all for now. Thanks for checking! Laurie

August 13: How I'm handling things emotionally

Had a good weekend. Joanne decided that I needed some time away, so she took me to her house for the weekend. Amazing how tired I can get just hanging out.... Still need time to build up stamina. Good news is that I am now walking 1/2 mile on the treadmill. Gets me tired, so I will stay at this level for several days and try to increase the speed. And Brenda, who had been borrowing my car, brought it back tonight. So now I can run local errands. Very exciting.

Feeling somewhat philosphical tonight for some reason. So thought I would put down some random deep thoughts. Usually I save these meanderings for my personal diary, but as people keep asking how I deal with my situation, here it is.

-Sometimes your attitude is the only thing you have any control over. So you've just gotten a horrible diagnosis.... Can you do anything about it? Research it. Find out everything you can. Don't be a victim. It doesn't mean that you have to pull yourself together instantly, or even in days or weeks. But, sooner or later, it is in your best interest to accept that sometimes the only thing you have any control over is how you chose to handle your situation.

-Everything is relative. It's one of my recurring statements. If you don't have anything to measure the current situation against, then it can seem overwhelming. The worst thing for me came after the first surgery. The excitement of having my first BM (a VERY important event--really) was lessened by the realization that I couldn't wipe my own butt. Really. Had to call the nurse to do it. That became my benchmark for the feeling of total helplessness. Even when I am in pain, or coping with what I can no longer do, I always have the benchmark that at least I can wipe my own butt now.

-Your expectations change as your disease/condition worsens. Before both heart surgeries I was told that I was going to be "fixed", better than ever, better than I had been in years. Coping with the reality of this not happening has been one of the most difficult things about this whole illness. I know now that I will be restricted by having my chest cut open four times for the rest of my life. There will be things that I will never do again. My right arm and side will always be weaker because of the thoracotomy. That sucks. But I can take care of my basic daily needs.

-If there is always something that you have wanted to experience, do it now. In my 20s I dated a guy who went to Ireland with his family to see where his mom had been born. The tour group was mostly people in their 70s and 80s who had dreamed of this trip their entire lives. Half of them couldn't walk over the cobblestones or do any steps so they sat on the bus and stared longingly through the windows at the places they had wanted desperately to experience. This story made a huge impression on me. My childhood dream had always been to go to Egypt. As horrible as facing my mortality was, I got a sense of peace from having realized a life-long goal of standing in the King's Burial Chamber of the Great Pyramid.

-There is always someone worse off than you. Really. I joke that I consistently win the "My life is worse than yours" game, and most of the time I do. But I am very conscious of the fact that things could be much, much worse. I have a treatable disease. I have health insurance. I have access to the best surgeons in the world. I have wonderful friends and family. I have use of all my limbs.  My brain has bounced back incredibly well despite multiple insults.  I have a job with supportive bosses and co-workers. It could be way, way worse.

-Life isn't fair. Deal with it. Being sick sucks. Bad things happen to good people. You deserve some self-pity. You weren't expecting it, you couldn't prepare for it. Well, neither did our kids coming back from Iraq & Afganistan without their arms or legs or vision. And if you aren't pulled out by that realization, then take a look at the situation in Africa, such as Darfur. Self-pity is expected but don't let it take over your life.

OK, that's enough for one posting. Will someone PLEASE submit my story to Oprah?!?!?

Thanks for checking in on me, Laurie

August 9: FOUR WEEKS!!!

It's been four weeks today since the surgery--I can hardly believe it! Walked on the treadmill this morning, still the .30 miles in about 11 minutes. My friend Rose came over in the afternoon and we went out for lunch and then she took me to run errands, so I was too tired to walk again, but I had been out and about.

So, what's going on? I still feel better than after the other two heart surgeries, and see improvements weekly. It is good that I know people are reading this, because it assures that I will keep track of my progress, which is good for me as well. Occasionally I sneeze, and it is much less painful than before. Still having a fair amount of chest pain, and I have to be very careful about what I do. Unfortunately, doing anything with my arms still gives me pain. I really miss my motrin, tylenol just doesn't cut it. Getting and staying asleep is a little better than before, but still not great. But overall I see progress each week.

Tonight I went back and read all the posts and comments at the time of the surgery. I know that I have done that before, but each time seems like the first time I see them. It means so much to me to see all the people who were keeping up with things and leaving well wishes. I'm sorry there were a few gaps in between either Joanne or my postings. There is one from Joanne in the comments section of my last post the night before that didn't get in this section, so if you are curious you can go back and read it. But I just want you all to know how much all the comments mean to me. I feel very blessed that so many people care about me. Bidge/Willard has given me the best comment about that. He says that all the years I have been a paramedic and PA that I was depositing into the "karmic bank" and that the past few years I have had to make some withdrawals. I like that!

Anyway, blood work tomorrow to see if my INR is back down enough. Thanks, as always, for checking in on me. Laurie

August 7: one bump, holding steady

Tuesday night and there is NOTHING on TV!! Even History channel has nothing. I have decided to return to the classics for a while and have started Jane Austen's "Emma". I also need to start doing my scrapbooking in the family vacation book--I'm three years behind!

I've started walking on the treadmill. This makes my decision to enclose the porch during a financially uncertain timeframe more justified. I just can't breathe in the heat and humidity. But I can walk on the treadmill in front of a fan, further helped by my contractor putting up the ceiling fan this weekend. So, my major physical exertion is now walking for 10 mins at 1.6 mph, which equals about .30 of a mile. Pretty pathetic, huh?! I tried to walk 12 mins yesterday, but got dizzy and lightheaded. I want to start trying to do twice a day, but just the 10 minutes for now. Start slow.

My bloodwork was going well, but I must not have eaten as many salads last week. My blood is now very thin, so another reason to stay in and try not to hurt myself. Bleeding now would be very, very bad. (For the medical types: my INR is 7.0, I'm supposedto be about 3.0) So no coumadin for the next several nights, then labwork on Friday again. I'm hoping that my insurance company will see that I am difficult to control (anyone surprised?!) and give me one of the machines that you can test your own levels. It's like a glucometer for monitoring. In further good news, my hemoglobin is staying about 11 gms, so it looks like I don't have to have a hysterectomy now.

While I still have chest pain, it is definitely better than last week. Not as bad when sleeping, either. Now if I could just get to bed at a more reasonable hour!

Thanks for checking, Laurie

P.S. to Carol: I'm controlling myself so far!!

August 2: Three weeks out!

Well, I've been lying low for the past week. I wasn't happy with the amount of chest pain I'm still having. Being out of the house, even with someone else helping out, is still using my upper body a lot. As well as the weather being either brutally hot and/or humid. So, I decided to stay in and heal quietly. People are concerned that I will get bored, but trust me, when I don't feel great home is the best place to be. TV, books, computer, phone, food, kitties and an incredibly comfortable couch. How can I be bored?

To further occupy my time I have given in to an obsession with Tiffany stained glass panels. The best company that made them went out of business last year, so there aren't a lot around. I am now calling dozens of museums to see if they have any still in stock. Finding them in strange places: Dallas Museum of Art, Mark Twain Museum and Allentown Museum (who knew they had an art museum?!) It's amazing how much time it takes to find museums that have any Tiffany, then get the store number and someone who knows what's in stock. And often one call leads to information and numbers that need to be tracked down. Hours of easy fun!

My blood work came back surprisingly good. My INR (bleeding time) is now past theraputic, which is just a dose adjustment. My hemoglobin is also up, but that's really good with the bleeding time being up as well. Having another set of labs on Monday.

Well, the kitties are nagging for their night time snack, and I need to make my tea and get ready for bed. Thanks for checking, Laurie