I had asked Walt to go with me to this meeting as my advocate because I knew it was going to be the most difficult one I would face. I knew I could use his calm presence and clear head. Once again the trip down had not one word in regards to what was about to take place until I had to tell him we were going to the Johnson Cancer Center by Mercy Hospital. I was pretty certain a good blood pressure reading was ahead for me. I am certainly grateful for his time, his offer of help, and especially for his laid back manner to keep my nerves from getting the best of me!
I had not received the paperwork in the mail so I was using my "teaching lack of time do it spur of the moment" skills to write fast and complete my assignment from the receptionist. Of course it wasn't one page but about six! I was still working on the big yellow one when the nurse called us to go in.
Weight? Getting better.
Height? No way have lost an inch since my doctors appointment two weeks ago...oh well.
Down the hallway to the room for blood pressure 127 over 83, good deal.
Temperature 97.1. Temperature's never been normal anyway any nore than I have!
Pull curtain, put on another attractive hospital gown for an brief exam.
My first meeting with Dr. B was stilted as he joined me on the other side of the curtain. I tried to keep things light and he was quite serious but trying also. He had me take deep breaths, checked my heart, looked at my surgery site, said things were looking good, asked me to get dressed and said he would be back to discuss my treatment options. After I did, I pulled open the curtain and sat down by my friend to wait for him.
Expecting a conversation about invasive ductal carcinoma, chemotherapy, herceptin and radiation I was not prepared for what occured. He started with a graph that my head couldn't wrap around because of my impatience to get to the heavy stuff. Then he said, "You have invasive lobular carcinoma with some lobular carcinoma in situ and I'd like to begin your Tamoxifen regimine as soon as we can."
WHAT??? Invasive LOBULAR carcinoma??? Lobular cacinoma IN SITU?? Tamoxifen for five years? I'm not supposed to do that I am HER2 positive and that is treated with chemo and herceptin! I have been reading about it for over a month so I would be knowledgeable and prepared to accept it all with a positive state of mind and discuss it intelligently. NOW I have a different diagnosis, a different therapy, a different everything?
I was SO CONFUSED I couldn't focus. He said my mass was 0.6 and too small for chemo and herceptin, that HER2 was of "minimal concern"...at that point I began to question, irratically I am sure. I was now trying to wrap my head around what he was trying to say while inside my head, I kept hearing "This is wrong. Why is he saying all this? This isn't me, it's not what I am supposed to have, and other random, confused, scared and upset thoughts. I couldn't find the calm or the words to share why I was feeling like I was and ask what I should have because I couldn't think clearly enough.
My tape had stopped working during the most important half of the conversation. I know at the end of our appointment I let him believe I was ok with Tamoxifen and we could take a look at it. I could even have a small regimine of chemo if I really felt strongly, just no herceptin. I recall telling him I might even call him with the ok tonight.
Walt had mentioned the possibility of congestive heart failure with Herceptin and that Dr. B said I'd be able to avoid that likelihood with this, especially because of my moms experience. Tamoxifen is great news and only a pill to take every day for five years. He was right of course, but I needed to think. Something just wasn't right, didn't feel right. I'd sort it all out later. We went out to the waiting room as I had to get my blood drawn.
In the meantime, the representative that helped coordinate my insurance needs with the center so that I wouldn't have to worry came over to invite us to join him. He started by apologizing that he could not contact my company because they were in Washington and it was not yet 8am there. He apologized more than once and I felt my nerves tighten. He mentioned the Tamoxifen, I said I hadn't decided yet, he said he couldn't do anything quite yet anyway because my company hadn't opened yet and things got worse for me at that point. I couldn't see the point in his conversation and was becoming impatient with the whole thing. I was struggling to calm myself. He suggested I talk with the social workers who would explain how they can be helpful to me getting more funding or whatever I needed since he didn't have much to tell me at this time. I just wanted to get the blood drawn and get out of there!
Walt thanked him and I said ok to having the two young ladies come in. They were very calming and it definitely had the right affect on me. They said they realized we were short of time and Walt reassured them we had time, it was fine. I agreed because I was FINALLY beginning to relax again. Their information was interesting and it was also reassuring to hear some of the ways they could be helpful with any financial needs I might have. When they finished their short presentation, I was finally off to get my blood drawn. I was glad when we could finally leave.
Out in the car I questioned my "extra pair of ears" to see if he heard what I heard and got some clarification on things I didn't hear due to my confusion. Walt reassured me that this was really good news, which is truly is!
Then WHY am I feeling like something isn't right here?
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