Please Stand By

In the midst of an office move at work I am having some technical difficulties with the next post. Please stand by!

XXOO Make Everyday Count
Bonnie

BRAZIL OR BUST (A GUT THAT IS) OR MAYBE NOT

 

Alright, we are going to fast forward here a little bit. I told you I am finding it extremely hard to deal with present day's issues while I'm re-canting the past. When I start to feel I have a handle on things, all those emotions flood over me and it's like we are there again. The emotional roller coaster has to many loop de loops, so we're going to intermingle time. Again, for new readers, I have been sharing my daughter's cancer journey after it's accidental (or God Thing) discovery after a softball injury in March of 2015. 

When Cheyenne had her last doctor's visit, six months ago or so, everything looked pretty good. She did have one lymph node that was enlarged but Dr. Athanassaki (our near famous endocrinologist) said we were going to keep an eye on it. "It's most likely reactive to a cold or allergies," she had told us. "Let's keep an eye on it." 

Our follow up was December 12th 2016.  In that six month span, Chey had found a second node and the primary one had gotten bigger. 

I remember when she found it, "Mom!  There is another one swollen! She had practically screamed.  "What do you think it means?"

I shrugged as I felt it for myself and said, "Um, we just need to let Dr. A know at the appointment and go from there."

"Well, I haven't had any allergies or mouth ulcers, so that's not it. It kinda bothers me," she snipped back.

"I know sweetie, but there isn't anything we can do until we go," I responded.

I actually put a call into the office and asked our new nurse, Jennifer if we needed to go ahead and schedule anything. In the past, with Alli, she had always been so proactive, and due to our traveling five hours to the appointment she scheduled as much as possible in one trip. Jennifer told me there wasn't anything scheduled...

So as usual, the fellow came in the room first, accompanied by Jennifer. This visit we had a very sweet, shy first year who is going to be an endocrinologist. She's from Korea and very soft spoken.  Most of you know, we are pretty outgoing individuals. Chey will say it's all me and that I'm crazy, but we both give lots of hugs and are a bit out there. I guess I just want them all to know how much they mean to us and words just can't convey the feeling. 

Jennifer was giggling as she said, "I warned her it's hugs, hugs, hugs." We all laughed, and hugged.

The fellow asked Chey to go over her history and then examined her. After the exam, Chey was sitting on the table. She said, "Mom I showed her the wrong one, this is the one that's bigger," as she palpated the node.

I responded, "It's okay, just show Dr. A when she comes in."

It wasn't very long until Dr. A and the girls came back in and we both jumped up and gave her a big hug. I noticed immediately that she had lost some weight and it made me wonder if she was alright. She was her usual eyes twinkling, smiling, jovial self. I don't know if jovial really fits because she has a very slight frame (even more so today.) Maybe I should say lively, maybe that fits better. Anyway, after we gave our hugs, I sat back down and Chey went back to the exam table. Dr. A sat down on her stool and said to Cheyenne, "So, tell me about these nodes."

Chey explained, "It's the one that was there before, but now it's bigger. There is also another one here." She put her finger on her neck.

Dr. A donned her gloves and began to examine Cheyenne. She turned to the fellow, "Did you notice these here?" The fellow had not.  "Come here and feel these."

Cheyenne's eyes were big as saucers, Dr. A was feeling under her jaw and down low on her neck, and she sat straight up on that table. I probably did the same in my chair. Dr. A said that they could all be reactive for one reason or another, tooth problems or allergies, etc. We both told her that Chey had been pretty healthy, just fatigued.  She had also gained a little weight. Chey also showed them her tattoo (you will hear all about it later) which lightened the mood.

Dr. A spoke at last, as she propped herself up against the exam table, "We are doing a new ultrasound here. It is for mapping of the thyroid and the lymph nodes in the neck. I would like Cheyenne to have one. They are very specialized, so we only do them once a week on Thursday."

She went on to explain that Jennifer would get everything scheduled and we gave goodbye hugs all around. Something was wrong though, she just was not herself and seemed to nearly run from the room.

Jennifer stayed, pulled up a chair and scooted over close to us. She had her schedule book out on her lap and she said, "Well, like Dr. A said, they only do this ultrasound on Thursday. Can you stay and do it tomorrow?"

Chey and I both blurted out "No way." Cheyenne continued, "I have a final tomorrow at 8 am, I can't miss it."

I knew there was no way in hades she was going to miss that final, she's a bit obsessive over her grades. After all the hell we went through with her high school, she was not going to let ANYTHING affect her schoolwork. For those of you who are unaware, we had a grievance with the Dublin ISD beginning in Chey's sophomore year of high school. In January 2015, the Commissioner of Education's final ruling came down in our favor. He had ruled that the school board must have a hearing on the merits of our case (DISD had declined to do so previously, saying we had filed untimely.) As of today, that hearing has not occurred. You can google our case (Texas Commissioner of Education DOCKET NO. 046-R10-02-2014 and select link Child b/n/f Parent v. Dublin Indep. Sch. Dist) if you're interested.

So, Jennifer called to the scheduler and set an appointment for January 12th. We were supposed to hang loose afterwards in case we needed to do anything further. Then she said, "Well, I do have something to tell you."

I asked, "Is she sick?" Meaning Dr. A.

"No, that's not it at all. She wants me to tell you about some changes coming up." Chey and I both sat up straighter in our chairs, this did not sound good at all. "The endocrine department will no longer be overseeing the thyroid cancer patients. All new patients will be seen in the Oncology Department.

"I hate politics in medicine!" I said angrily. "Ya'll have done too good of a job and they want your numbers!"

The main reason we had come to TCH was because of the Endocrine Thyroid Tumor Program and their rating. As a nurse and mother, I had researched endlessly. Thyroid Cancer by all accounts, should and is managed by the Endocrinologists-NOT Oncologists. I was mad as hell.

Jennifer did not respond, instead Cheyenne said, "Why would you change something that isn't broken. Ya'll have done a great job and I don't want someone else taking care of me, I will stay with Dr. A."

Jennifer told us that they were unsure, at the moment, what was going to happen to established patients but we would know when they did. We were all upset! No wonder Dr. A was visibly not herself, what a blow. 

"Well, when does the Family Board meet again?" I asked. "I will certainly give them our opinion on this subject."

I was invited, along with two others, to be the first family members on this board this past Fall. We haven't met again, but I still plan on talking about this change. Chey and I both feel this is definitely not in the best interest of the patients and decided that we will go to another facility, for future care, before changing to oncology.

With tears in our eyes, we gathered our belongings and headed to the check out counter. We were both in shock.

Next time, On With the Gut Bust!

XXOO Make Everyday Count

Bonnie