Original post 1/8/09
I am constantly reminded that God is in control of this journey. His hand is so evident as I review the events & experiences I’ve been through so far. I can’t help but trust Him to continue to see me through every day. How I praise God for the grace (unmerited favor) He has extended to me!!! I thank Him every day, several times a day. It is my prayer that I will be able to demonstrate my thankfulness through the way I live & serve others.
Since June, I have sent email updates to my blog group email list each time I received tumor marker results. If you are among this group, you know these are very brief updates. This blog will bring you up to date, as of January 2009.
August 6th, I reported my tumor marker dropped to 78.5. This is a decline of 19.3 since June 24.
August 13th, we met with Dr. Patel. I had been noticing that I was unusually tired, which is explained by the fact that my blood pressure is low (90/60). I also was struggling with pain in my chest from a cracked or fractured rib. Dr. Patel said he needs to know this & make note of it in my chart, since it may show up as an area of activity on a future PET scan. We discussed the tumor marker, which he said may level out for 1 year to 14 months. If it begins to go back up, it means my body has become resistant to the medication I am using, & we need to change my medication. Currently, there are 3 or 4 medications available. Dr. Patel said that by the time I go through all of them there may be another available so that we can delay the need for chemotherapy for a very long time. I am hoping to get more than the average amount of time out of the medications, because of my diet, exercise, & supplements, so that the time is span is even longer. This will also mean that, by God’s grace, my body will have to respond positively to each of the other medications as well.
Because I was so impressed with the 500–point drop in my tumor marker in just 6 months, I thought Dr. Patel would be very impressed. I asked about his impression of how far it had dropped, in such a short period of time. He said the drop in tumor marker is, “exactly what he expected;” he’s telling me it’s just average. I’m deflated & confused. How can this be? I couldn’t think fast enough to come back with good questions, to clarify his statements. (Later I thought of good questions. This is one of them: If Sally ABC & Suzy XYZ came in to his office at the same time I did, with the same type & stage of cancer, with a tumor marker of 580, & chose the same treatment, are you saying you would expect all 3 of us to have identical results?)
I ask if there was a possibility the cancer would go into remission. Dr. Patel said, “We do not use the word remission with this type of stage IV cancer.” Case closed. Again, I could not think fast enough to come up with a good follow-up question. Oh, the frustrations of an upper brain stem injury.
September 3rd I had an appointment with Dr. Powers. I told him about the 500–point drop, in 6 months, in the tumor marker. He said this is not normal; it is faster than normal. He said he’s seen that kind of response occasionally, but very rarely. During the appointment he looked up the response rate to the drug I take, Femara, on his computer. He found that it is about 27%, which means I had only about a 1 in 4 chance of a positive response to it. He was astounded by this & actually surprised Dr. Patel chose it. I reminded him that God knew my body would respond positively. I knew God answered our prayers to give Dr. Patel wisdom in choosing the right treatment for me, as I relate in chapter 11.
We went to Disney World September 13th, with our son, daughter-in-law, grandson, Parker, & our daughter-in-law’s parents. We had a wonderful time!!! I weighed 125 when we left; I ate big meals all week. I carried snacks & bottled water with me every day, but I still lost 5 pounds that week. Ed could not believe it. I told him that he saw me eat – 3 meals a day. My legs cannot take walking for long periods of time, on concrete or macadam; so, I rode in a wheelchair most of the day in the theme parks. I did not walk off the 5 pounds. The only reason for the loss I could come up with was the fact that I was not eating after our evening meal while we were away. When we are at home I make a 22 oz. smoothie 3 or 4 nights a week. Evidently, it makes a difference. We seldom had trouble finding foods I could eat. (I feel bad when I am inconveniencing others by looking for a restaurant with a menu that provides me with choices. It makes the process longer, as we pass up several places that would suit everyone else.)
Since I have lost 47 pounds, I have a few family members & friends who worry about my weight loss. However, people who have not seen me for a year or for several months always comment that I look “really good.” Some add that “even the color of your complexion is really good.” Sometimes they are referring to the fact that I look much better than they expect, because they think I have undergone traditional cancer treatment – surgery, chemotherapy & radiation. These same individuals rarely comment on or ask about my weight loss. I’ve had a few people, at times, hint at the fact that they assume I’ve been very sick from my treatment. I suppose they naturally assume that is the reason for my weight loss. If time &/or the situation allows, I explain that I have not been sick, with the kind of treatment I am using.
I’ve done enough research to know that my weight is still within a reasonable range at 120, for my height. It’s important to eat enough to stay healthy, but I cannot be obsessed over with every pound. At this point, I get on the scale once or twice a week to check my weight. If I’ve lost a pound or 2, I need to increase my food intake & make smoothies a few nights in a row. When I mention to strangers that I have cancer they are shocked. They all agree that I look too healthy to have stage IV cancer. How long was it in this stage before I was diagnosed?
Many types of cancer present no symptoms until it is too late to conquer it. Breast cancer generally does present symptoms. I had yearly mammograms, as I promised my mother I would, but I was told that my cancer has been present for 8–10 years. I thank God for the sore shoulder that I did not ignore the 2nd time it occurred & that my doctor investigated thoroughly. (See chapters 2, 3 & 4)
September 24, 2008, my tumor marker dropped to 70.7; I was disappointed that the drop was not greater, but I finally realized that it is a 10% drop. Now that the number is smaller I need to expect smaller decreases.
A week before my appointment with Dr. Patel my weight is still 120. I tried to eat as much as possible to gain a pound or two. I was making some headway. I made it to about 122. November 3rd my appointment was not until 3:00. I dressed in heavy clothing; put my cell phone, a double set of keys & zip lock bag of coins in my pockets; ate breakfast & lunch, drank 3 bottles of water & a bottle of Fuze before the appointment to try to increase my weight above 125. I stepped on the scale, with my purse in my hand, & weighed in at 127. I had blood drawn for the tumor marker, but the results would not be available for 2–3 days.
We met with Sara, the physician’s assistant. We really like Sara; however, I went in expecting to see Dr. Patel. I was not prepared with a list of written questions; I was trying to remember my memorized script off the top of my head. I was thrown off course by not seeing Dr. Patel, which made it hard for me to get my thoughts in order, to express myself well. I couldn’t get clear answers to my confusing questions & random talking; tried to explain how I felt when I was told my results were average, at the previous appointment. I just couldn’t make myself clear; my brain injury was really evident. Sara noticed it. I know she was beginning to think it was a possible symptom of the cancer spreading to my brain, based on the questions she was asking. Ed & I explained the effects of the brain injury to her. When we started to talk about the brain injury she remembered our mentioning it the first time we met with her, but she said she had not noticed any symptoms in other appointments.
Sara did take a couple of my questions to Dr. Patel & come back to me with responses that did not satisfy me. In the end, Ed thought I probably put Dr. Patel on the defensive, which is not what I want. I need him to be in my corner pulling for me. I want my questions answered to my satisfaction, & I want him to understand how his responses and remarks make me feel. It’s a two-way street. We have to respect each other. I respect his knowledge & trust his judgment, but I pray for God to give him wisdom as he makes decisions regarding my treatment.
We called the office a couple days later & learned that the tumor marker had dropped again, this time to 52.3. Praise God!!! Only 12 more points & it will be in the normal range! That’s my prayer for the next blood test, which is right before Christmas – that it will be in the normal range, between 38 & 40. If anyone asked, this is what I really wanted for Christmas. December 22, I had the blood drawn. I called on the 24th, to see if the results were available; they weren’t. I called again on the 26th. I was told that the tumor marker is 39.6; it didn’t register while I was on the phone that this is in the normal range. After I hung up the phone my mind consciously thought through the numbers – 38–40 is the normal range. WOW! I MADE IT!!!! That’s exactly what I prayed for. PRAISE GOD! I could not hold back the tears. Dr. Patel has been telling me for several months that the numbers mean that the cancer is stable, but THIS number convinced me the cancer IS stable! PRAISE GOD!!! (1/6/09)
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