Thursday, February 10, 2011

Has the other shoe fallen?






(I am starting with the good news. If you can't wait, scroll down to the fourth to the last paragraph then come back to the top.)

Yesterday was warm and sunny all day, and we had a full day of chores and fun planned. In the morning, Mark went out grocery shopping and comic book shopping (every Wednesday), so he was gone nearly three hours. While he was gone, I did some treatment-related chores: filed papers in my notebook, looked up claim status from two different insurance companies, called St. Agnes one last time for an itemized bill. I also cleaned out my purse. OMG that was a big chore! I don't think I had done that for a year, and it was looking like a cross between a trash can and a file cabinet. I'm happy to report that it is squeaky clean now, but there is a big pile of papers on my dresser that I don't know what to do with. LOL

I also called my new cleaning lady, Carol. She is coming this afternoon, and I'm hoping to meet her. I don't know if I will or not because I'm also supposed to get that call from the cancer center about when to come in for the tattooing. I thought they would call yesterday, but they didn't. Carol is coming around 1 in the afternoon, so I still don't know if I'll be here or not. At least by talking to her on the phone, she knows where I left her check and where I'll be if I'm not here to meet her finally.

Once Mark got home and ate lunch, the fun started. Every Monday, Wednesday, and Friday are our weight-lifting days, so off we went to the Palms to do our exercise. Since I can't lift more than 10 pounds on my left side for the rest of my life, I have the four arm machines set at 10 pounds. I started off with two sets of 10 reps, but I was curious about the best way to increase that. Fortunately I have a certified Athletic Trainer in the family, Evey. She said it was better to increase to three sets of 10 first. Then when that started to seem easy, drop back to two sets but increase to 15 reps. Then go to three sets of that before dropping to two sets of 20. That will take me awhile, so I'm good for that. The cruise will interrupt that for three weeks, so I basically will start over when we get back.

Then we went to the pool. I thought that Wednesday would finally be my day to swim because the two week restriction from the port removal surgery was up, but NO! Now I'm restricted because of the temporary marks on my chest for the tattooing. DOH! I sat on a chaise lounge and snoozed while Mark did his 20 minute water aerobics routine.

Finally it was OFF to DISNEY!! We went to the Magic Kingdom for dinner and a show. I love that we can do that. We arrived about 6 p.m. while the day was still warm enough to be in short-sleeves, but we carried jackets for later when it was dark. The Snow White ride is going to close down to make way for a new attraction, so we headed to Fantasyland right away to ride it. In the summer the wait is always very long, but today it was just 5 minutes. We really enjoyed it, and I feel sad that they are doing away with one of the original rides. Then we walked to the Pooh ride. It used to be Mr. Toad's Wild Ride, and I was outraged when they shut that down to turn it into Pooh. Pooh is nice, but it's no Mr. Toad. The ride is still the same Pooh ride, but the waiting area through the line has been enhanced with fun things for kids to do to pass the time. We went through the line to see those new things and then ditched out through the Fast Pass entrance way. Dinner at Cosmic Ray's Starlight Cafe in Tomorrowland was our next stop. It is a counter-service food court with kosher meals available. Mark and I love the corned beef dinner, so that's what we ordered. We were shocked when we saw it had been changed to a pocket sandwich. It turned out to be a good change. The sandwich was excellent and the carrot/broccoli medley was steamed instead of swimming in a sweet glaze. There were fewer potato puffs, but they tasted better than I remembered. All in all, we thought it was an improvement. It was also so uncrowded that we did not need to lurk around waiting for someone to leave to snag a table. In fact, I waited with Mark until we got our food, which in the summer I would never do because I'd be lurking around trying to snag a table, and then we chose the front table so we could actually hear Sunny Eclipse as he performed for us!

After dinner it was time for the main event. Prior to "Wishes", the evening fireworks display over the castle, there is a 10 minute show called "The Magic, The Memories, and You." Over 500 pictures (of the thousands taken) of guests from that very day in the park are projected onto the castle. At least that's what the promos said. It was so much more than that. There was music, colorful displays, animation, and so much more I can barely describe it. You can hardly realize you are looking at the castle because it has been well-disguised by the lighting effects. Everyone really needs to go see it.

We did a little shopping on the way out, which I do NOT recommend. It's super crowded in the stores on Main Street on the way out because everyone waits to shop until the last minute. Sigh. We did it anyway. Mark was on a hunt to buy me a Valentine's Day gift, and since he was carrying a small bag, I think he was successful. I was sent to the Emporium to buy a Mickey head shaped ice cube tray. Our ice machine does not work, so we are tired of having no ice. Now we'll have Mickey ice cubes. I also found a box of Mickey-head shaped, chocolate covered Rice Krispie treats. I did not need that, but it found it's way into my hands anyway. There are only 4 in the box, so I ate one while I was waiting for Mark to finish his shopping. I put the other three in the pantry for a much later date. We got home shortly after 10 p.m., very tired but very happy.

Well, here's the other shoe dropping, maybe. I got a call at 8:30 this morning from my new medical oncologist. I was excited when the phone rang because I was expecting the radiation department to call with that tattooing appointment. Still waiting. Instead, it was Dr. Vijay's office asking me to make an appointment to come in and discuss my PET scan results from Monday. I was surprised about two things. First, I didn't think those results were even going to be back until next week, so I expected to hear about them after the cruise. Second, if there is nothing bad in them, why couldn't they wait until after the cruise or just tell me all was well on the phone. I asked for an appointment the week of March 7 when we are back, but she said, NO, I needed to come in tomorrow. Sigh. So I'm going up there at 11:30 a.m. tomorrow for an appointment to go over those results. Is this a bad thing? Am I feeling depressed and upset for no reason? Is it just standard procedure to bring you in immediately to tell you there is nothing in the scan? Is this place money-grubby and just wants money from CIGNA for another office visit? Hm...that could have happened in March in my book. I don't like this, and neither does Mark. Now I'm sitting on pins and needles waiting for tomorrow morning.

In Baltimore, PET scans were never in the picture, never mentioned as an option. My oncologist said there was no way to tell if the chemo worked. I believed her. She said one-third of the women got chemo when they didn't need it; one third got chemo, needed it, and were cured; one third got chemo, needed it, but didn't get cured. She said there was no way to tell which woman was in which third until many years went by. Now I have had a PET scan, and I've been told that it will show if the chemo worked or didn't. Who should I believe? This could be a good thing if there is something else there that needs to be addressed. Isn't that better than waiting for years to go by when some new cancer or a recurrence has grown so large that it causes symptoms? So tomorrow I will find out, and of course, I will share that information with all of my loyal readers. Please continue to keep me in your prayers.

Well, I took so long writing this blog and uploading all of the Disney photos, that I have now set that appointment at the radiation office. I'm going in tomorrow at 9:15. It's more than just tattooing apparently; it's the simulation. I thought that was what I had on Tuesday, but he said no. The radiation "plan" could not be made until they read the results of my CT scan and ultrasound from Tuesday. Now they have done that, so I'll have a simulation session and tattooing on Friday in the morning for about a 45 to 60 minute session. Then I'll see Dr. Vijay at 11:30 to learn what showed up in the Bone Density scan and the PET scan. I'll wait until I get home from all of that tomorrow before writing another blog, so be patient.

Meanwhile this afternoon, we have decided to take ourselves up to the Solivita pizza parlor, the Upper Crust, for lunch. Today they have tomato basil soup in a bread bowl and salad bar for their lunch special between 11 and 2. I'll probably not meet Carol today because of this, but I don't care. We are also going to walk the inside track for some exercise and to to the Lifestyles office to turn in our checks to join the Travel Club and make our donation to join the Walk for the Cure in March for Breast Cancer. It's a two mile walk and we get T-shirts! I'm planning to work up to that two mile walk on the cruise, but we'll start today in the indoor track. I had said I would do a public walk for breast cancer eventually, so this seems like a good goal. The walk is on March 18 in the early morning. Tonight is free wine dinner at the Lakeside restaurant and the free movie in the ballroom. Tonight our movie is "The Other Guys." We will also be buying tickets for the Solivita Theater group's spring performance on Sunday, March 6. This place has so many activities going on that it would be impossible to do them all! That's why we love it here.

4 comments:

  1. Becky,
    You are in my prayers about the PET scan. They might have found something, but of course I am praying that they did not. My best advice is to do some fun things today with your husband like you have planned. The simulation will be long tomorrow. I don't like lying still for a long time and so the last time that I had a simulation for radiation in 2008 I took some Ativan. Of course like I said before I firmly believe that you are much tougher than I am in your tolerance to discomfort from reading the last several months what you have been going through.

    About the PET scan, my best advice in case they have found some metastasis is to remember that life goes on. You definitely have alot to live for and alot of living left to do. You will be scared if they have found metastasis, but if they have they probably have found it early. Of course I am praying that there is no metastasis for you. Write me back if you have any questions. You will be in my thoughts/prayers all day today. I am so sorry that you have this time of worry and wait to get through. I am just so glad that you have a wonderful husband to help support you.

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  2. Thanks, Rhonda. As always, you are the voice of reason. How did they find your mets? Was it on a scan or were you having symptoms? You are the strong one in my book!!

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  3. I have had 3 episodes of metastasis since my cancer diagnosis in 2003. The first one was in 2007. I started having vaginal bleeding after my menstrual periods had stopped in 2003 after chemo. The end result of that was early stage endometrial cancer from Tamoxifen that I took for BC. That was treated with a complete hysterectomy with no need for chemo or radiation.

    The second reoccurence was found in 2008. I had had a follow up abdominal CAT scan from my hysterectomy. It showed some lung abnormalities. I had been following up on the endometrial cancer with my primary care physician, but I took the results of that CAT scan to my medical oncologist at that time. He ordered a PET scan (my first one) to evaluate the changes in the lungs from the CAT scan. The PET scan showed no cancer in my lungs but some bone metastasis in my left illiac crest. I did not have symptoms with that bone metastasis. I had 10 treatments of radiation to that area of my hip. They told me that it was to control the pain and not to cure the bone mets. I didn't question them at the time why I should do it since I didn't have any pain. I just did it.

    I then had two more PET scans at 6 month intervals that showed that my bone mets was in remission with no further spread of the breast cancer.

    My last PET scan was in December 2009. I told my oncologist that I had then when I went to see him in January 2010 that I had been having rib pain. He said that he was not worried about it on the basis of the results of my PET scan of Dec 2009. The PET scan in Dec 2009 showed a pleural effusion too. I asked my oncologist if it could be cancer and he said that it was not enough fluid in the pleural effusion to test. I had been having a chronic cough at that time since Sept 2009 that my primary care dr had been giving me codeine to control after a couple rounds of antibiotics didn't take care of it. Things progressed with me on regular doses of Tylenol 3 until the 3rd week of January 2010 when I went to the ER one weekend for chest pain. I was also short of breath and continued with my chronic cough. The ER doctors did a chest CAT scan which showed lots of bone mets in my ribs and back. That next week I had a bone scan to confirm the bone mets and a thoracentesis to drain the lung fluid. 5 days after the thoracentesis I hadn't heard about the results from the pulmonologist who ordered it and so since I was employed at the hospital at that time I went there one night to look up the results of the thoracentesis. It showed cancer in the fluid and so the next day I called my oncologist. The nurse of the oncologist said "oh did they test the fluid from the thoracentesis for cancer"? I said yes and she had me come in and talk to the oncologist and we set up chemotherapy.

    A few other bad things happened with this oncologist and so about last May I changed to a different oncologist in Des Moines and have continued with my chemotherapy. I also haven't been back to that pulmonologist since the thoracentesis.

    I definitely feel that some things weren't handled for me as well as they could have been by my previous oncologist, but things are going so much better now and I feel that the current oncologist is paying attention to me and giving me appropriate care. Some of the reason that things weren't handled as well as they should have been is related to some big problems at the hospital where I used to work and where I took the cancer treatment.

    If the worst scenario happens and you do have some BC mets I feel like you have some very conscientious oncology doctors in Florida who will take very good care of you. I am still praying that you go tomorrow and find out that there is no BC mets. I am praying for you tonight.

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  4. I'm glad you shared your history with me. I find it fascinating. I will let you know tomorrow what I find out. Thanks so much for the prayers.

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