Another Day, Another Doctor

So, off again on another adventure of health care and healing. On the advice of one of my old high school pals, I went to see her oncologist in Fairmont, WV. He's supposed to be a really great doc and he's saved her life on at least one occasion.




We didn't take the car with navigation (my car is in need of repair) so Pat and I had a few words over the sadly lacking Yahoo map he was using to find the place. It was way off. In the end, I guessed where the office was and luckily, that was a good guess. I was in a little bit of a snit since we ended up being 20 minutes late, and I slammed my car door a little too hard to emphasize that fact, but apologized to Pat as soon as we sat down and I started filling out forms. He knows I'm stressed, but I don't think he'll indulge me in many more little tantrums. He's patient, but he's stressed too, so his line in the sand is a little bit closer to him than it was before. I understand that and I'm sure I'll do better once I know my game plan once and for all.

There was a lady there obviously going through chemo whose husband was so obnoxious and unkind to her in his remarks, it made me thank the Lord all over again for letting Pat be mine. He's such a good support for me and even better this time around than he was when I was diagnosed with oral cancer in 2006.


I'm a quick form filler-outer and I had it all knocked out in record time and back to the nurse. Like most docs, they ask you to come early enough to fill out the forms with some time to spare, so, in the grand scheme of things, we weren't really late at all.  I was even more shamed to have been even a little bit ugly to my sweet husband.

As it turned out, the doctor's office was located in Fairmont General Hospital. It's an old hospital, badly in need of an update. Not a place I'd want to come for healing, you know? It left me feeling that it needed cleaned and I don't know about the rest of you, but I can't get comfortable in a room that needs cleaned. The doctor's office had one little bathroom and you had to cross the infusion room where patients were taking chemo just to get to it. Pat refused to disturb those folk getting infusion, but I couldn't wait. It definitely struck me upon exiting that if I were a patient, I would not like that layout. But the staff was friendly and helpful and I was seen quickly.


The doc was a nice guy, about 62, trained at MD Anderson. We discussed what had and had not been done in my case and I mentioned I had tried initially to get into MD Anderson. He told me that he could get me in there "tomorrow," if I wished to go there, but I explained that I was happy now with my decision of going to Duke in NC. 

The exam was a little weird. I wasn't asked to get into a robe. He just asked me to lean forward, he unhooked my bra and asked me to lift my top. The thing about exams of your personal bits is that they are less weird if it all feels clinical. This definitely wasn't. His nurse and my husband were in the room watching all this, so it felt even stranger. 

I was more than a little uncomfortable.

I felt like I was channeling some of my wild friends on Spring Break circa 1983 or starring in my own Girls Gone Wild video. Except I didn't want to be doing either of those things.

When Pat and I discussed it later, he said he thought that maybe the doc had to rush through my appointment since he had worked me in as a favor to my friend, thus foregoing the time it would have taken to get me into gown. Maybe. But it didn't feel like that. But, whatever. I'm open minded and I can adapt.  I figure I'm going to be flashing my pretty bits at an ever-increasing rate in the days ahead, so I might as well get over it. Maybe it will be harder when they are no longer pretty bits and maybe I should relish that I still have something to flash at anyone. So . . . yeah . . . that's probably true. I'll remember that next time.


After that strange exam, the doctor talked to me a bit about what might be in store for me. Because I've done a lot of research already at the great CURE magazine website, I knew there was also a lot he wasn't telling me or expecting me to know. I asked him to write down the protocol he would follow--realizing he didn't know yet my lymph node status--and he did. The only surprise was that it would use Taxol at 70 dose versus 80 dose. He said the side effects were much worse at the higher dose, but the benefits did not correspond. He said it worked as well at the 70 dose.

So, his schedule was adramyacin, four doses; Herceptin taken with my first dose of taxol, which would be given once a week for 12 weeks, and followed with a year of Herceptin.

After discussing family history of cancer, he urged me to have the test for the BRCA gene mutation. I thought that was a good idea and glad he suggested it.
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

He also urged me to have an MRI of my brain every six months since HER2 neu positive cancer can and does metastasize to the brain, as well as liver, lung, bone or ovary. In fact, this happened with the friend who referred me to this doctor. She had a slight headache, mentioned it to this doc, he insisted she have an MRI that very day and the report came back showing a pea-sized tumor in her brain. She had gamma knife surgery and she currently has no brain mets, so I know that getting ahead of a potential problem like this is optimum. So, I consented to have an MRI that very day at Ruby Memorial Hospital.


The last few minutes of my consult with the doc was a little rushed. I was trying to ask him if my previous oral cancer which was hpv negative, but positive for P16 mutation on immunostain upon DNA study, could be linked to this current cancer. He said he didn't know where I had my studies done, but that it wasn't possible in 2006 to know those things. 

Well, those who know me well know just how fast I whipped out that particular molecular study from my well-organized file folder of medical procedures and reports and handed it to the good doc. (FYI, my oral cancer DNA studies were done at Johns Hopkins University, not exactly at the end of the world; why wouldn't an oncologist know those tests were available years ago?) 

He didn't say anything, but said he'd copy the reports and then disappeared. I never saw him again. The nurse said I should come outside and wait until the MRI could be confirmed and in the meantime, they drew the blood for the BRCA test. Then we left.

Pat and I discussed the overall strangeness of the consult and agreed that this probably would not be the oncologist I would be using in the future.

The MRI was located in the Robert C. Byrd Health and Sciences building at Ruby Memorial Hospital, and just our luck, a water main had just broken and there was water flooding the MRI waiting and testing rooms. So they were delayed in taking me back. I remarked to my husband afterward that I don't know why, but the people who do the CAT scans and MRIs are always the most upbeat and cheerful of all the health care professionals you see during cancer treatment. These ladies were no exception. They were also grateful for my suggestion of how to keep the fan they were using to dry things from walking across the slick polished floor. It was simple, really, to put a small blanket under it. They told me they'd give me a discount for that little tip, but as it turned out, they just gave me a blanket, too.

I was sleepy when I got in the MRI for the brain scan, but who can sleep amidst all the clanging and banging? So, I just said my mantra the entire time, over and over: "I will be happy, healthy and strong." It's amazing how much better just saying those words can make me feel. Although today on Facebook, my long-distance friend David King, who shares my love of Scotties and gardens, suggested that I change my mantra to: "I am happy, healthy and strong." I liked his idea and immediately corrected the new verbiage on my bathroom mirror. I'm thinking of adding affirmations to all the mirrors in the house.

Pat and I stopped to have a bite of dinner before heading home. We got back about 9:30 last night. We had a beautiful, blazing red sunset toward the end of our journey and I enjoyed it so much, couldn't stop looking at it long enough to even nap. We hadn't thought we'd be gone as long as we were, and oh, boy, did we have some hungry canines waiting for us at the door. I prepared food for the dogs while Pat took them out in the yard and they all marveled at the big, bright full moon that illuminated everything so brilliantly. H. I., known to Pat as my "Stage 5 Klinger," wouldn't go outside unless I went with him, so I popped some food in the microwave and took a minute to step outside with the gang.


It's a tired cliché, but there are some things in nature that are just so beautiful they make you gasp. Our moon last night was one of those awe-inducers. I never get tired of things like beautiful sunsets and gorgeous moons. And yes, I do have faith I will see many more to come.

Thank you, God, for giving me loving friends, trained specialists, a sweet and caring husband and a family that supports me in loving ways. Thank you for the beautiful world that surrounds me. Its beauty gives me hope, knowing you at the core of it all and you're the same one who holds my hand as I marvel at it all.

 

I remember the morning this picture was taken . . . for some reason, I had on my Grandma Canterbury's nightgown.  I remember she always loaned it to me when I stayed with her and somehow I must have figured how to smuggle it home. It was very roomy, with a white background and some kind of a dark blue or black dot or print on it, and had three large gold buttons up the front. I loved it.

On this particular morning, I am remembering that my Mom woke me up because my brother had arrived home for a visit. He was either in training or had gone to Vietnam at this time. We were all so exited that he was coming home, and I think the general neighborhood was, too, but my Mom and Dad were visibly happy. I remember them singing around the house as they did their chores and making special trips to the store to buy special things they thought Wayne might like to eat. 

Then, he arrived! I remember especially how relieved and glad I was to see him and to know that he was safe. He was all smiles that morning, and I guess he was happy to see us, too. He brought Mom and Dad presents--I don't recall what those were--and he brought me a flashy "cutting star" sapphire cocktail ring. To this day, I don't know exactly what a cutting star sapphire is, but it sounds exotic, doesn't it? I sure thought so.

That gorgeous, heavy ring, with sapphires stacked up into a dome was not appropriate for a little girl to wear and was way too big for me then, but I loved it all the more because I considered it a grown-up girl's accessory.

I still have that ring and have found occasions to wear it from time to time. I smile when I think of the circumstances surrounding its gift to me. Not only was my brother safe and well, but he came with gifts to cheer us.

The fact that he was safe and well was no small thing to our family. He was the only son, oldest, my father's pride and joy. When I was six and seven, I'd listen to the evening news with my parents. Afterward, my Dad would mark the areas of fighting by placing pins on the map of Vietnam he'd put up on our dining room wall.  I would then go to bed and pray fervently for my brother. My prayers had an obsessive, desperate quality to them. Six and seven times in and out of bed, down on my knees, begging the Lord to keep my brother safe and in one piece.

Little did any of us know all that he would experience; three wars in total and some very dangerous places and situations. But we believed that God would keep him safe through all. He still keeps him safe in his job now as an air ambulance (helicopter) pilot, which is rated one of the most dangerous jobs of all. The Lord truly is our hope and our salvation, but our mother has worn out her knees as she assures herself daily of that fact.
 She loves her one and only son so very much.