July 23: Deep thoughts on this vacation

It's been busy the last several weeks, always seems as though there is something to do when I get home from work. And now working almost four full days a week, which is tiring. So there has been much that I haven't thought deeply about, including my upcoming vacation.

The closer it gets, the more excited I've been. Yes, I'll be seeing family who I enjoy (for the most part!). Yes, the setting is gorgeous: on the lake where 'On Golden Pond' was filmed. Yes, it's a week off from work. The happiness, however, seemed somewhat out of proportion to the trip. This is a place I've been to off and on for at least four decades, chances are it will be similar to many other weeks spent with family there.

Suddenly there came the realization: this is the first vacation I've had in a full five years. And this oft-repeated trip will be the first one in my 'new' life.

There was Egypt in January, 2004 and the diagnosis in February. As bad as the mitral regurgitation was when discovered, it seemed to settle down and was only mild-moderate by June, I even had gone back to exercising. Late June at camp was the usual, although I sprained the left ankle going after one of the kid's tennis balls in the rocky woods surrounding the court. It was while using the crutches that I seemed to deteriorate again, and in August the MR was severe again, then progressed to the surgery in October. While I've gone to this camp two more times in the last few years, those visits were in 2006 & 2007. In 2006 my second surgery was already scheduled for early August, the soonest it could be done after Beth's commitments. So while on that 'vacation' there was already the specter of the next surgery hanging over me, with the threat of sudden death at any time because of the surgically induced abnormality. And in 2007 Beth and I left camp with George to take Susan's kids for their flight back to Italy, then Beth and I went to Boston for surgery number three, again clouding what would normally have been a happy time. Last year there weren't enough family members who could have made it to camp, so no one went and I never took any other time off between finances and not feeling well.

The last three times vacation with the family has preceded, at varying intervals, getting my chest cracked open, then my heart stopped and sliced open. In 2006 my attitude was colored by wondering if I was ever going to be back there again, if I would live through the surgery or be mobile enough to be at the camp again. And in 2007 it was even worse, with the even stronger possibility of dying or being disabled by a stroke. Packing and leaving my house that year I was struggling not to let others see me cry as I wondered if I was saying goodbye to my furry companions for the last time, wondering if things were in order enough to not be too confusing to those coping with things after my death. Even more frightening was the thought of being in a nursing home with advanced paralysis, knowing that my cats and possessions were being dispersed, that objects and pictures saved and treasured were being sorted and dispassionately thrown out or sold.

It is easy for others to dismiss these thoughts, to say 'Oh, don't think about that!' But the fact is that there was no way I couldn't think about them, because all of those horrible outcomes were distinct possibilities, not just morbid ramblings. These are the thoughts that are so terrifying, that eat at you, that keep you awake at night despite sleeping pills. These are not outcomes that I could put aside and try to meditate my way around. And while the logical reaction from others is to say 'Don't borrow trouble, don't get yourself so worked up over things that probably won't happen', it isn't that easy. Because these thoughts and worries aren't logical, aren't controllable by will. They are what torments you when you are critically ill because the potential is there, they might really happen--they aren't outside of realm of possibility. And knowing that is the worst of all, because they can't be easily dismissed.

The foot/ankle will inhibit my mobility, and the continuing chest pain/sternal separation will keep me from doing still more. I will never be able to do the activities that I did 7, 8 or 9 years ago, and that is the recognition of what the 'new' normal will be for the rest of my life. But I'm not going away with the shadow of death looming over me, coloring my emotions and interactions with family and others. This year will not be leading into another painful and scary heart surgery. My health and the possibility for catastrophe will always be more than my companions, because of my permanent heart disease and the blood thinners. But, comparatively speaking, this year will be the best vacation in recent memory.

It occurs to me that the ankle is an interesting bracket to the whole thing: the downward spiral involving my heart started after badly spraining the left ankle five years ago, and now as I move up out of the abyss the same ankle is again an issue (plus the broken foot, but stay with me!). But I want to think of this as the end of this horrid period of my life, the completion of a circle that will allow me to move to another, better phase of my life--although it will be much different than could have been imagined six or more years ago.

No one can imagine or plan for the life after a death defying critical illness. But this vacation is a major hurdle into something that is a normal thing to do, after so many things that have been so abnormal. From a person who has repeatedly said that 'Everything is Relative', it makes sense that I'm positively giddy.

Thanks for checking in, Laurie

July 12: Yikes, it's been that long?

The problem is that I compose things in my head, and then forget that I didn't actually type them on the blog. The book would be done now if I actually manged to get everything that went through my head down on paper/computer. I try to get to my personal diary and at least jot down major phrases and concepts, but even that doesn't work that often. Serious consideration must be placed into carrying a tape recorder with me at all times for the little pearls of wisdom, etc, that suddenly pop up.

Today is the 2 year anniversary of the third heart surgery. I announced it in Fellowship this morning with the opener of "This isn't necessarily a joy or concern, just a statement....", and that's how I feel about it. It just felt like it needed to be acknowledged as a major event in my life. Recuperation should have been further along, but the foot can be blamed for that in the last several months. Generally speaking there are positives and negatives, as with all things. Everyone keeps telling me how wonderful I look, and even I have to acknowledge that my facial color is better than I can remember it. One of the M.A.s who has worked with me for the seven years at the current job said the staff had actually talked about it one day recently and they all felt that I looked better than since they knew me. This, of course, is the recognition that I was unknowingly deteriorating around the time I started there in Sept 2002, but was putting my fatigue down to learning a new job and doing rounds in the hospitals.

From a purely medical standpoint, my recovery is incredible, beyond any one's expectations. From a personal standpoint it doesn't seem that way. I'm in pain almost constantly, although it's just a dull ache for the most part, worsening with activity or lifting. I'm exhausted working three and a half days a week, can barely function in off time, which is spent recuperating. When I get overly tired something really scary happens: I go back into the 'pump-head' syndrome, my thoughts are slowed and fuzzy, like having to function through a heavy fog. It really shouldn't be a surprise, because long term effects are not uncommon in people who have been on cardiac bypass, and I was on repeatedly and longer than most. (Not, however, beating what is normal in heart failure units, which Rose reminds me of!) The palpitations seem to be worsening, and I'm awaiting my most recent magnesium level taken Friday. So, when people tell me how terrific I look, I just smile and say 'thanks'.

Because of all this my next revelation won't come as much of a surprise. I weaned myself off the anti-depressants a few months ago, and was so thrilled to be doing well off of them because I just hate the idea of being dependent on them. That, by the way, is entirely a psychological matter because they are in no way habit forming or addictive in the sense that you usually think about drugs like pain killers or Valium-like substances. But after a couple months off them it was very apparent to me that I'd gone into a rather significant depression, becoming withdrawn and introverted. Becoming more hermit-like takes some work when you don't go out much anyway, but I even avoided talking on the phone or e-mailing, because it was just too much effort. This lead to a serious conversation with myself which replace the sessions in the past with the therapist who was treating me for PTSD in reaction to my medical issues, because insurance was covering less and less of the visits and it seemed as if they didn't make a difference anyway. So, I asked myself "If a patient came to you as the treating clinician with a story of the medical, psychological, financial and life-altering problems you've had in the past few years, would you expect them to need an anti-depressant?" And the answer, with no debate, was a resounding "Hell yes!" So, patient and clinician decided to re-start the pills. After several weeks, I'm happy to say that I feel much better.

In other news: Martha ran into a glitch a couple weeks ago that necessitated holding her chemo when her white count dropped, but this was after the excellent news that her tumor had shrunk substantially with the first six weeks of treatment. So, another round of the chemo for six weeks, and then a thoracotomy.

My foot is still an issue, coming up on five months. It now hurts when I wake up in the morning, so chances are there's arthritis in there now--no surprise. It swells within hours, but the pain and swelling are less than they were. Ortho doc says now to expect a full six months to recover. I'm now walking on it more, trying to strengthen the muscles and ligaments again, concentrating on a heel-toe walk as I have the tendency to walk too much on the outsides of my feet since the fractures in the sesamoid bones under the first toe joint many years ago, which occurred without trauma and ended up happening on both the right and left feet over a couple years.

Did I mention that the degenerative disc disease is significant enough that I've shrunk ? My adult life I've been 5'4 1/4", although it's been years since that was last checked, because who keeps checking their height when they've grown up? But at the gyn's office I asked specifically, since that was when the osteopenia was on the table. And I now measure at 5'3". Kind of scary at my age. Also explains why petite sizes started fitting better.

On the happy front, the almost-annual family vacation in New Hampshire is in just two weeks. Unfortunately there were too many people who couldn't make it last year, so it was cancelled, much to my dismay. Not sure if John, Martha, Lyle or Emma will make it up at all, but Susan and her kids will be coming from Italy, so I'm really looking forward to that, as well as seeing other family members. This is also pushing me to get caught up on the scrapbook I started several years ago, because there were four years to get in there: one earlier, 1998, and then 2006 & 2007 with 2005 lower priority since I didn't go and only have other's pics. The lovely thing about the scrapbooking is that it fulfills my creative side, which as been sorely ignored in the past several years. I have found it difficult to be creative when in pain.

So, that's all there is time for tonight. I'll try to post again before heading to NH. Thanks for checking in on me, Laurie

P.S. to Deneen: Thanks for the comments on the service. It is my hope that by baring my soul it will help others.