Thursday, August 10, 2006

And so now what?

Before I even start, I want to say thank you. For the love, the prayers, the thoughts and the cards and e-mails. For cheering me up and supporting me, whether locally or from across the country. I truly feel loved. And that is so important.

You might think my title would be more celebratory, as I have completed my full six rounds (sessions?) of chemotherapy as of this week. But to catch you up, I have to go backwards a few weeks.

As many of you know, Jamie has been invaluable in helping me get through the treatments by taking Sofie the week of the treatment so I could rest unencumbered by our child’s high energy needs! We visit during this time, but it means I can focus on sleeping and healing and not so much on bath time, packing lunches, etc.

But new developments here that have changed things around for us. About two weeks ago, Jamie went into the hospital and had surgery to remove her uterus. Amazingly, they found cancer. She is not yet 41. This has really shaken all of us up, she has a lot of healing to do from the surgery itself. Since her condo has three levels of stairs, she came from the hospital to my house for a week to recuperate. A bit bumpy at first, as we all adjusted. But I moved down to the guest room and was quite comfy. Jamie stayed in the first floor bedroom so there would be no stairs to navigate at all for at least a week.

They sent her home and a week later, took out the staples in her belly. Leaving an open wound! I did a bit of wound care, which was a bit overwhelming the first time, but now she is home and managing it as she heals.

She has not yet heard from the doctors what the exact treatment plan will be, but it is probably going to be radiation. They did not think (early in this process) that it would be chemo. I have no idea how vigorous radiation will be, but I know that it will also be tiring. But she gets to keep her hair and eyebrows with that type of treatment.

So, there we have the situation that comes on the heels of what should be a time of joy, the end of my treatment. Five months almost to the day that I found out I had cancer, I completed the last chemo treatment on Tuesday this week.

On day and night before I had my last chemo treatment, I was focused! Several nights before, I ended each evening by visualizing a lot of white light and healing energy. And watching a Netflix episode of Weeds, to get me ready for Season Two.

Tracey gave me one of her magical healing massages before she left on a short vacation. On Monday afternoon, I had an acupuncture treatment to work on controlling the post treatment nausea and the joint and bone aches I have been experiencing. The acupuncture has been pretty amazing at the nausea and pain control, it doesn’t make it completely disappear, but it is a lot better.

About 6 PM, Sofie and I went to the airport to pick up Carrie Helser who was arriving from San Francisco to help me out in this last treatment. The fatigue, as you might imagine, has been getting more pronounced. I barely make it past Sofie’s going to sleep at night. And I yawn, a lot.

I remember once, someone in a TV program saying their “get up and go had got up and went”. So it is for me.

So Tuesday we took Sofie to YMCA camp (she has finished her three weeks at Camp Riverlea, more of a nature camp, where she had a blast). Then headed out to Duke at 11 AM. Later than usual appointments, as the day had been switched to Tuesday so I had the energy over the past weekend for Sofie’s sixth birthday party. Whoa, when you get to Duke after 9 you can see how the schedule has gotten out of control. Overall, I was about two hours behind all day. But otherwise, once the appointment in the treatment unit started, I was fine. Chris, my lovely nurse, was wonderful. Nothing like the last visit which had been such a disaster! She was in a celebratory mood with me, for the final treatment.

Carrie and I had stopped at Whole Foods prior to getting to Duke, so we had a small cooler of wonderful gourmet treats for lunch, including sushi. Beats the heck out of hospital food. We played one game of Scrabble, I was pretty groggy and Carrie won that game! But we both had pretty crappy letters throughout.

It was over without fanfare at 6 PM. I wonder what I had expected to feel? Relief? Joy? Mostly I was just, well, tired. Picked up Sofie from Jamie’s house (our friend Delma just happened to stop by Jamie's and was able to drive and get her that afternoon). And then just moved slowly until bedtime.

I do feel a great sense of relief that the treatments are over. I don’t really have a clear idea of what happens next, the docs are not that forthcoming with the plans, unless you ask them directly. I had not seen my regular doctor anyway, so I did not ask much. I will continue to have blood work for a while, while they watch my levels go up to normal, hopefully soon. I have one more dose of Procrit to take to boost my red blood cells, then they will be on their own.

I will begin to feel better and more normal within two months, they tell me. I hope so. I almost have forgotten what it feels like to bounce out of bed in the morning and go the whole day and not feel like I want to collapse by dinnertime. I kind of missed this summer, but it was a hot one (still is) and for now, I am content to be mellow.

Sofie starts first grade in a few weeks, and we (and I do mean we) will have lots to do to keep up with that. She has been very resistant to writing or even doing her reading this summer, another reason I think year round school is truly a better option when available. But hopefully it will come back to her when she is in school. First grade means real homework, about 15 minutes or so a night. Getting that in with the playtime, bedtime routines and all that, will be a challenge, but we will get used to it.

My work has been very accommodating, but I am sure they are ready for me to get back to my full self, to try to follow through on things that have been “on hold” for lack of a better word. Fortunately, libraries don’t move at a rapid pace overall, but I do have things I need to get back to. This is the most challenging job in development I think I have ever had. The donors are just not there. So I will have to be even more creative as I move forward. It is even harder than in the earlier days of HIV when people were afraid or cautious of giving to HIV issues, because of the stigma.

Before I close this more or less somber piece, I have to share some fun stuff from Sofie’s birthday event. It was at a place called Pump It Up last Saturday. This place has a room filled with those inflatable bouncy things kids love. There were 17 or 18 kids there, plus the assorted parents. Sofie was thrilled that so many of her friends came. She was very excited to see Corey, evidently he is the “the boyfriend” she mentioned months back. But she (Sofie) has some competition for that little heartbreaker of a six year old boy. He sauntered (yes, sauntered!) into the party and said “Hey Sofie”. Another little girl, Sarah seems to also have a major thing for him. She got his attention and they played air hockey together. Sofie did not seem to notice, so perhaps she is over him! He is really cute, however, and seems to know his power over the six year old girl set.

Sofie loved her party and insisted I go down the big slide with her at least once. Once was about all I could manage, the one slide made me feel like I had been on the open seas for about two days, my equilibrium was not so good. She must have gone down that slide 50 times. At least.

Sofie also had directed her desires about her cake: Chocolate inside (cake and filling) and white icing with snakes on it. Costco does not quite do the snake motif (although with the Snakes on A Plane film, perhaps they should reconsider). Anyway, I applied the snakes for extra dazzle and Sofie was delighted. The kids ran themselves ragged for about an hour and 45 minutes, then we went into the party room to infuse them with more sugar (cake, juice bags and goody bags with candy and toys). Sofie sat on a big throne to open her gifts. The list I sent out with her invites worked! Not a Barbie in the batch. Lots of great art stuff, some toys, games and books and overall, she liked everything.

Finally, in that way life is so ironic, I have heard this week from three college friends. All of them have grown children either in or done with college. College! I on the other hand, spent a half hour on the internet this AM, trying to track down some sort of specialized composition book for first graders. Finally located it, (not in any of the stores I have been to) and ordered them online. Ridiculous. But they were on the list.

And so, now what? I am not quite sure, but you can bet I will keep on. And keep writing.

I am going to stop now, but also want to again say thank you from the bottom of my heart, to all my friends and family who have sent their love, best wishes and prayers during this time. Keep sending them, and if you could, send a little Jamie’s way as well.

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