We have been working furiously on my cancer job since last Tuesday. I had sent emails to many of the doctors I had seen, many doctors who had looked at my tumors under the microscope, and talked to nurses as well. Since my tumor marker did not move last week, there was a feeling that the chemo was absorbed in the tissues instead of systemic causing my arm to look like a drug addict. The possibilities were endless, a vein leaked or my tumor marker won’t move. It was all very strange since I followed the data points up and down with each chemo. Regardless, the plan was to continue. I did talk to one doctor who was thrilled to call me “unique” after she had analyzed 100s of more tumors from other woman, I am still at the top of the charts. Oh, yes to be so popular! She asked if she “could have another piece of me.” I had to tell her there wasn’t any piece, but I would keep her in mind for the next time. She made some recommendations for 2 other chemo drugs to add to mine. I did put my cancer job aside to attend Alex’s field trip to the Griffith Observatory. As a friend and fellow cancer buddy said to me,”the Only thing we can control is to do the things that make US happy and the thing that makes us happiest is being with our son and seeing life through their eyes.” I had the best day! Even with a little rain on my beautiful wig, I was willing to ignore the strict strange behavior of the Griffith Observatory staff!
Unfortunately, Thursday did not go as planned. I was armed with special treats that were as cute as cute could be. I thought with my new pre-medication, things would have been better. My blood was on the border which meant that I could continue my chemo.Somehow, I had a drop in my blood pressure and had full attention of many nurses including my nurse/doctor husband who commented that I did not look good. With my infusion finishing, I had to get real air. The smells, the crowds, the place was not doing me any good. The pasty faces, the clothes hanging on withered bodies, the moans, the groans, were all too much. I went to the other office to wait for my doctor. With a plea for ice water, I went to the back room as the smells were too much. After waiting an hour, we decided to go to the other office to stalk my doctor since I lost track of time. Everyone insisted that I should lie down, so I did. He mentioned taking my tumor cells again for another try to see if they test positive for another gene. Eventually, one is bound to be positive. I signed a bunch of papers and he discussed the addition of the other drugs which (of course) have horrible side effects. I decided that we would wait to see if I needed them. I talked about changing my routine to the pill form of my chemo. He agreed to think outside the box, but wanted to get multiple opinions for dosage since I always have to push the envelope. This is all for my quality of life. If I can gain a few extra days, be home, not be in pain driving 5 hours plus, not see the audience at the closet, I am convinced this will be better for me. We left to attempt to get something to eat which was a bad idea as the closest place was the hospital lunch cafe. We timed it perfectly with all interns, nurses, fellows, residents eating at the same time. I sat down as I was still dizzy and feeling horrible. Of course, a nurse decided to whack me in the head so hard that my wig came off a bit. I was in shock and so was the cardiac resident sitting in front of me. He told her to apologize. I told her it would be nice (in my not so nice voice). She told me, “geez, what is wrong with you.” I told her what was wrong-that I just finished my chemo and she knocked my wig off a bit. She told me, “sorry”, but did not mean it. I told her she should watch her giant purse as she could hit someone else. She responded, “it wasn’t my purse, it was my elbow.” I proceeded to cry in front of this cardiac resident who told me that I shouldn’t waste the tears. I was more concerned that this nurse was actually going to treat patients. He told me to let it go and so, I did (until now!) . I had to go see the orthopedic doctor for my neck after this delightful lunch. He is a wonderful and funny doctor who informed me that unfortunately, this neck issue will take up to 6-10 weeks and I cannot rush this process. Luckily, we left UCLA and I passed out Thursday, Friday, and Saturday. I could not stay awake and felt it was better to sleep it off. I did get an email with my tumor marker and great news that it went down 20 points! Of course, I calculated this all out and this means that if the pattern continues, I should be done in June as promised.
Today, I did exit my house for Laguna Beach and the tide was super low, so we walked the beach. We ate at Sapphire for lunch which was packed and I ate every bite. It was a great day!
I know the next couple of days are going to be hectic since I have to get everything organized for the taking of the “pill”. This will require weekly visits to Hoag to check my blood if all goes as planned. Of course, based on my numbers for blood counts, I may need a shot or two. All I know is it will be worth all the planning and change to be at my house. (even if I am in bed) Alex jumped up and down and did his best dance in agreement for me to not drive to Los Angeles every week. Seeing his smiling face and his dance moves, how could I not try this chemo pill routine!