Wednesday, July 29, 2009

Time for an Update

Today I am in KC for Vitamin C and chemo. This morning, as I sit in the ‘lounge chair’ with my ‘good medicine’ dripping in, I am anxious about the ‘other medicine’ this afternoon. This will be my sixth doxil treatment.

We met with Dr. Chapman on Monday. My CA125 rose again from 110 to 134. This is a much smaller increase than the last time, but an increase nonetheless and this causes great anxiety for me. I also had a CTscan on Monday, July 20th that had mixed results. The scan showed my chest and abdomen are clear which is great because it shows the cancer has not metastasized but there is a small (2cm) spot in my pelvis. This could be new cancer growth, an inflamed lymph node or scar tissue from my surgeries. The plan is to continue with the doxil and monitor the spot in the pelvis. I will have a PT scan sometime in the next few weeks (I hope!), which should give us more information.

I have also been dealing with another fistula, this time involving my bladder. I am working now with the docs to schedule an outpatient procedure to have this repaired. It can’t happen soon enough for me!

Generally, I feel really good. I am in pretty good spirits and my physical strength and stamina get better every day. I was so busy yesterday – and it felt so good – that it reminded me of the ‘good old days’. Mornings are my best time. I wake up early with Rich and then get as much done as I can until my energy starts to dip.

The side effects of the chemo are getting a bit worse. Doxil likes warm and moist areas of the body in addition to causing problems with the hands and feet. I am having problems with my feet particularly when it is hot. I do feel like this mild summer has been a gift. If the weather was more normal this summer, I would likely be more miserable. Right now, when the temperature and humidity rises, I feel tingling and tightness in my legs and feet. The rash gets worse the hotter it is and I tend to have swelling in the lower legs and feet at the end of the day. The rash is not itchy, just persistent and takes days to resolve. I feel a little nauseous during the second week after chemo infusion. Not so bad, I guess. Things could always be worse.

We are having a good summer. We are renovating the bathroom on the main floor. This has been a good thing for me physically because I have use the basement bathroom and the stairs have helped me build up my muscles! This project should be done by the end of August and it will be exciting to have a new bathroom! I am not a good decorator but I know what I like. I like things to be simple and there is nothing simple about renovation.

M and C have had a busy summer. They are always off with friends and gone from the house. They went to the Adirondacks for a week in mid July and came home different people. They spent the week with a large group of cousins, swam, kayaked, hiked and generally relaxed, all without the parents. It was heavenly. Rich and I missed them terribly, but managed to survive!

I head to St. Louis for the weekend to spend some time with my family and see an old friend, someone who was very helpful to us in NY two years ago. Then we are off to the Twin Cities for a quick visit before school starts. For us, it is almost an end to the summer and I can’t believe it has gone so quickly. I can look back and see what incredible progress I have made in getting stronger since January. I still have a ways to go. I can’t wait to be cancer free, in remission and working on rebuilding my life. I want to get back to school and working again. I am a more patient person now than I was a year ago, but I still can’t wait for some ‘normalcy’ again.

My heartfelt thanks to everyone for the help we’ve received. We are so thankful for the good wishes, the help, the positive energy and the prayers. And as always we send ours to you.


Friday, July 3, 2009

Two Years

Tomorrow is the second anniversary of my diagnosis. Two Years!!! Sometimes I just cannot believe this is my life.

We had a pretty crazy June, but the weather has been very nice and I have been spending a lot of time sitting on the porch. I really like the porch. I have been working hard on trying to get the insurance company to support my Vitamin C therapy. Lots of paperwork, phone calls, negotiating, begging, crying - and the porch has become my office area. Depending on where I sit I can watch the neighborhood (true Alice Kravits style) or I can hide and avoid detection - just depends on my mood.

Two weeks ago I came down with another infection and after a visit with the doctor last Thursday to remove my stents, I have been feeling really, really good. The low grade infection that kept recurring was really dragging me down. And then this past Monday, I had a visit with the oncologist and then my fifth chemo treatment of doxil. My CA125 is up to 110, doubled since last month.

I hate the CA125. I hate the anticipation of the test, the anxiety, the fear, but it is the standard used by the oncologist to determine if there is possible cancer activity going on in my abdomen. BUT...the CA125 can also be influenced by irritation in the abdomen unrelated to the cancer, like infection. So, my hope is that the increased number is indicative of the urinary tract infection and not new cancer growth. It is either one or the other. So, in two weeks time, we will repeat the CA125 and then I will have a CTscan. The roller coaster is warming up and will be leaving the station soon.

So, the Fourth of July holiday is not a very exciting time for me. It certainly is a memorable time, but I think I will spend the day following my family's lead. The kids will surely want to set off something explosive and I know the dogs will be a little skittish and I feel a little Alice Kravits time coming on.....