Today is Thursday, Tumor Board day. From 9:00 am on, I was on edge waiting for my phone to ring. Would I qualify for the Z11 study? Would I have another surgery? Were they going to take out all of my lymph nodes? I had been waiting since last week for this day. I continued to work trying not to think about it. By 10 o'clock, still nothing. I had a meeting at 11. Sure enough, as soon as I started the meeting, there was a call. It was a Phoenix area code so it had to be the Cancer Center. I quickly excused myself to answer. Instead of Dr. Byrum's voice, it was a man who identified himself as being from the PET scan team. Just after my last post Monday night, scheduling had called me first thing Tuesday morning to change my tests from Monday to this Friday, tomorrow. Now they were calling to give me instructions for the morning.
I returned to my meeting. More waiting. By 12:30 I decided to text Melissa, Dr. Byrum's assistant. No reply. Finally, just as I was about it give up, the Blocked image appeared on my screen about 1:30. It was Dr. Byrum. She explained that the Tumor Board had reviewed my case. They agreed that IF I met the qualifications for the Z11 study, they would support me not having surgery. The problem was, they didn't know if I met the qualification yet. She explained that there were some additional tests on the tumor that were not back yet. While they knew the DCIS part of my breast cancer was estrogen positive, they didn't know if the invasive tumor was estrogen positive. The report for that should be in on Monday. If it is not estrogen positive, I may not qualify for the study and therefore, may have to have the surgery. They also need my HER2 to be positive, at least I think that is what she said. If I heard her correctly, that puts me in a bit of a catch-22. HER2 positive may mean no surgery, but it also is what will extend my treatments for an additional 6 months. As she was talking about my HER2 levels, she mentioned my score was a 2+. I knew it was a 2, unsure without further staining; what I didn't know is it was a 2+, closer to a 3 which is positive. I am guessing my HER2 will come back positive. She assured me we would know more on Monday and she would give me a call. More waiting.
So for now, today brought no answers and tomorrow brings only more tests. In the morning, we will head to Mesa. First we go to the hospital for the ecocardiogram. That will help set a starting point on the status of my heart prior to chemo. From there we will go to the Cancer Center for labs. After that, we will head to the second floor for the PET scan. In talking to the man from the PET scan team today, he told me nothing but water after midnight. I was also supposed to eat high protein, low sugar, low carbs today. I told him I sure wish he had called earlier since I brought sugar cookies and raspberry M&M's in for the team today. Before getting off of the phone, I asked him what a PET scan was--how did it work. He answered by asking if I had had a CAT scan. No. What about an MRI. No. He seemed a little loss with nothing to compare it to. Then he explained it step-by-step. When I first go in, I will get an IV. That surprised me. He said it was a sugary substance that they had mixed with radioactive material. Once I get the IV, I go to a relaxation room for about an hour. Then he paused, looked at my paperwork and corrected himself, "Oh wait. Yours will be about an hour and 20 minutes." I have no idea what makes mine longer than his first example but I didn't want to ask. After I take all of the fluid, I will lay flat on a table and move through a donut looking device. I have seen picture of those machines so that made sense. He explained the scan will take about 25 minutes. "Will my husband be able to come to the relaxation room with me?" His reply shocked me, "No. We want as few people as possible to be exposed to the radioactive material once we start putting it into you." For some reason, that just doesn't sound so reassuring. So tomorrow will be it--the beginning of my body being filled with materials that are harmful to the average human being. It's ironic since all of my life I've worked so hard not to put harmful substances into my body.
Last night in Wal-Mart I ran into Cindy who personally knew the struggle I am facing. She had breast cancer seven years ago and offered comforting support and advise. We must have talked for an hour standing in the aisle. I took in every piece of advise she offered. She said she tried to wear a wig, but it bothered her too much--same story as my friend Paula. She said she went bald within the first two weeks of starting her chemo. She wore lots of scarfs, and something I hadn't thought of, long dangly earrings--that's a great idea. As we stood there talking, I realized a couple of things. One, she was the first person I know who has had cancer that I have actually talked to face-to-face. That was good. Two, her hair was beautiful; mine will come back and it will be okay. Three, I have wondered if I my skin would be affected by all these poisons; was I going to look old and wrinkly afterwards? She looked wonderful--no wrinkles, good complexion; I was going to be okay. Four, I think my tumor is bigger than most and I think the chemo is longer than most. At this point, I have communicated with quite a few people who have had breast cancer. I haven't found anyone who has had the size of tumor I had. Her's was 1 cm. Mine was 4 cm. She also only had to do 6 weeks of chemo. That seems to be the average. Why am I going to have to do six months of it? Hmmmmm. Interesting. I wish I would have asked Dr. C to comment on the size / severity of my cancer. Is it a 2 out of 10, or a 6 out of 10? How does it compare to other women? I guess it doesn't matter, but you hear lots of people who have survived breast cancer, had mastectomies, chemo and never had another problem. Yet of those who have told me this, none have had 6 months of chemo. Why is mine gong to be so long? When I see Dr. C next Wednesday, that will be one of my questions, but for now, it appears the answers--all of the answers--will have to wait as this wait continues.
I returned to my meeting. More waiting. By 12:30 I decided to text Melissa, Dr. Byrum's assistant. No reply. Finally, just as I was about it give up, the Blocked image appeared on my screen about 1:30. It was Dr. Byrum. She explained that the Tumor Board had reviewed my case. They agreed that IF I met the qualifications for the Z11 study, they would support me not having surgery. The problem was, they didn't know if I met the qualification yet. She explained that there were some additional tests on the tumor that were not back yet. While they knew the DCIS part of my breast cancer was estrogen positive, they didn't know if the invasive tumor was estrogen positive. The report for that should be in on Monday. If it is not estrogen positive, I may not qualify for the study and therefore, may have to have the surgery. They also need my HER2 to be positive, at least I think that is what she said. If I heard her correctly, that puts me in a bit of a catch-22. HER2 positive may mean no surgery, but it also is what will extend my treatments for an additional 6 months. As she was talking about my HER2 levels, she mentioned my score was a 2+. I knew it was a 2, unsure without further staining; what I didn't know is it was a 2+, closer to a 3 which is positive. I am guessing my HER2 will come back positive. She assured me we would know more on Monday and she would give me a call. More waiting.
So for now, today brought no answers and tomorrow brings only more tests. In the morning, we will head to Mesa. First we go to the hospital for the ecocardiogram. That will help set a starting point on the status of my heart prior to chemo. From there we will go to the Cancer Center for labs. After that, we will head to the second floor for the PET scan. In talking to the man from the PET scan team today, he told me nothing but water after midnight. I was also supposed to eat high protein, low sugar, low carbs today. I told him I sure wish he had called earlier since I brought sugar cookies and raspberry M&M's in for the team today. Before getting off of the phone, I asked him what a PET scan was--how did it work. He answered by asking if I had had a CAT scan. No. What about an MRI. No. He seemed a little loss with nothing to compare it to. Then he explained it step-by-step. When I first go in, I will get an IV. That surprised me. He said it was a sugary substance that they had mixed with radioactive material. Once I get the IV, I go to a relaxation room for about an hour. Then he paused, looked at my paperwork and corrected himself, "Oh wait. Yours will be about an hour and 20 minutes." I have no idea what makes mine longer than his first example but I didn't want to ask. After I take all of the fluid, I will lay flat on a table and move through a donut looking device. I have seen picture of those machines so that made sense. He explained the scan will take about 25 minutes. "Will my husband be able to come to the relaxation room with me?" His reply shocked me, "No. We want as few people as possible to be exposed to the radioactive material once we start putting it into you." For some reason, that just doesn't sound so reassuring. So tomorrow will be it--the beginning of my body being filled with materials that are harmful to the average human being. It's ironic since all of my life I've worked so hard not to put harmful substances into my body.
Last night in Wal-Mart I ran into Cindy who personally knew the struggle I am facing. She had breast cancer seven years ago and offered comforting support and advise. We must have talked for an hour standing in the aisle. I took in every piece of advise she offered. She said she tried to wear a wig, but it bothered her too much--same story as my friend Paula. She said she went bald within the first two weeks of starting her chemo. She wore lots of scarfs, and something I hadn't thought of, long dangly earrings--that's a great idea. As we stood there talking, I realized a couple of things. One, she was the first person I know who has had cancer that I have actually talked to face-to-face. That was good. Two, her hair was beautiful; mine will come back and it will be okay. Three, I have wondered if I my skin would be affected by all these poisons; was I going to look old and wrinkly afterwards? She looked wonderful--no wrinkles, good complexion; I was going to be okay. Four, I think my tumor is bigger than most and I think the chemo is longer than most. At this point, I have communicated with quite a few people who have had breast cancer. I haven't found anyone who has had the size of tumor I had. Her's was 1 cm. Mine was 4 cm. She also only had to do 6 weeks of chemo. That seems to be the average. Why am I going to have to do six months of it? Hmmmmm. Interesting. I wish I would have asked Dr. C to comment on the size / severity of my cancer. Is it a 2 out of 10, or a 6 out of 10? How does it compare to other women? I guess it doesn't matter, but you hear lots of people who have survived breast cancer, had mastectomies, chemo and never had another problem. Yet of those who have told me this, none have had 6 months of chemo. Why is mine gong to be so long? When I see Dr. C next Wednesday, that will be one of my questions, but for now, it appears the answers--all of the answers--will have to wait as this wait continues.
Oh Susan, the waiting has got to be so difficult for you and your family. But, I have always said, patience is a virtue. Just remind yourself that the answers will come and the treatment will start soon. In the meantime, try as hard as you can to set the questions aside, enjoy yourself, your loved ones and Christmas. This time is probably what could be considered "the calm before the storm".. as hard as that might be to hear, embrace this time before your treatment starts.
ReplyDeleteSo the other day, after you posted about the wigs, I came up with the idea that I would go get all my hair cut off and donate to the foundation that makes Free wigs for cancer patients. and do this in honor of you and your battle with cancer. My hair is long enough now, and pretty healthy. I have had short hair cuts before and it always grows back! Plus, a new easy to take care of hair do would be refreshing!! So, I went to the website to read how to go about doing this. I meet all criteria.... except that my hair is dyed!!!!! No chemical processing allowed in it!!! I was so upset. LOL :-)
Anyway... everyone I personally know who went through cancer usually always wore cool scarves over their heads instead of a wig.. I never thought to ask why, just figured wigs were too expensive or something. I think you would look way COOL sporting a scarves on the head! :-)..
Susan, enjoy the weekend, take care and big (((((HUGS))))) to you!
Jenny
My heart is heavy and I hope the answers you need come soon. I can't imagine what you are experiencing. Continue the positive thinking and cry and be angry when you need to be. Hugs.
ReplyDeleteI have a question. How as the donut test on Friday? Did you do okay with it? I read about a month's blogs because I have to refamiliarize myself on how to find your blog.
ReplyDeleteYou can tell you are an English teacher. Every word and punctuation mark is perfect.
I sit here on Sunday morning with tears running down my face. I am so sad you are having to learn all of the medical terminology associated with cancer. I am more sad that you aren't reading it in a textbook rather than hearing and living it. Thank goodness for Greg, Preston, and Brooklyn and their support. But the most support will come from within and from your faith. Love you, Susan. Gayrene