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Friday, August 30, 2013

Time will Tell

Today, August 30, 2013 is the six year anniversary of my Parkinson's disease diagnosis. Many things have happened during that time; some good, some bad, and some I can't remember.

Time seems like it's flying by, and my concept of time has diminished. When my Doctors ask me questions like, "When did these symptom start?" or "How long ago was this test done?" I have no idea whether it was last month, or six months ago. I have to go home and look it up. I have a medical file on my PC, so the tests are easy to find. I have kept a daily journal, something I have done for years, so I can go back and see just when that particular symptom started. Without these, I'd be lost. 

It's not just medical things that I can't remember. I can't remember when I last saw friends or when I went to see a show and this concerns me. I'm sure my Parkinson's has progressed, even though my motor symptoms haven't; due to the Deep Brain Stimulation surgery I had done in October 2012. 

I have been through a lot this year; breast cancer surgery, three other surgeries, and way too much stress. Has this caused my "time" problems or is it something else?

I don't know, but maybe, come next August 30th, I won't remember any of 2013 and that might be a good thing. Time will tell...

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Sunday, August 25, 2013

DBS: Oops, We Have a Scalp Problem

My final visit with Dr. Norton, the neurosurgeon who did my DBS surgery in October of 2012, should have been in January of 2013, but life got in the way. My Wonderful Husband had some health issues and couldn't drive, then there was a freak blizzard in Tucson which required cancellation of an appointment and then I caught a bad cold and had to cancel another appointment. I finally got to see him in late March 2013. Dr. Norton checked my DBS settings, took a quick look at my incisions and declared me "done with him." He said I should have any follow up programming changes done with Stephanie or with Adam, the Medtronic representative when he comes to Yuma. I gave him a hug and we headed back home.

April of 2013 came and all hell broke loose. I had an abnormal mammogram, which required an ultrasound and then a biopsy. No big deal; this had happened before, so I wasn't concerned. I guess I should have been, because on April 15, 2013 I was told I had cancer in my right breast, and the tumor was just below the DBS generator in my chest. The surgeon I met with in Yuma had never seen a DBS generator before and that made me nervous, but surgery to remove the tumor was tentatively scheduled for May.

Then on April 20, 2013, I felt something "gooey" on my scalp, near the right cap from the DBS surgery. It wasn't blood, just oily. My Wonderful Husband looked and couldn't see anything, until he got out a magnifying glass. There was a very tiny, pin head size spot, where he thought he could see wire or a screw. Phone calls were made, photos taken and enlarged and then emailed to Tucson. 
The spot was really very small, this has been magnified.

Dr. Norton called me very early on Monday morning, April 22, 2013 and said we'd better come right over. So we packed some clothes and took off. He took a look at it and decided it was a wire showing, but that it hadn't come through the skin, yet. It needed to be fixed so surgery was scheduled the next day. 

While I was there, I told him about the cancer and my nervousness about the Yuma surgeon who'd never seen a DBS unit before. His answer, "I'll take care of it and get you the best breast surgeon in Tucson." Dr. Norton called me later in the day to say he'd made an appointment for me on Wednesday with a Dr. Roeder. 

Tuesday, April 23, 2013 I was back in the Operating Room with Dr. Norton. He re-shaved the right side, cut me open, re-arranged the wires and sutured me closed.

On Wednesday we met with the breast surgeon, scheduled the cancer surgery for May 7, 2013 and headed back home to Yuma.

We went back to Tucson on May 3, 2013 to have the scalp sutures removed. Since my cancer surgery was scheduled for a few days later, we just stayed in Tucson. On Monday morning, my Wonderful Husband looked at my scalp and there was a spot that didn't "look right," so back to Dr. Norton's I went.

My scalp had pulled apart between where two of the sutures had been, so I was scheduled to have it fixed, again, on May 9, 2013; two days after my cancer surgery.

Dr. Norton once again, re-shaved the right side, moved the wires some more, and put in even more sutures. This time, he let the sutures in longer and I went back on May 20, 2013 to have them removed. 

I also had a follow up with Dr. Roeder the same day, she said they'd gotten all the cancer, so I decided against any follow up treatment. The oncologists I saw were recommending radiation, but that would have required moving my DBS generator, but after all the scalp problems I had, I said NO.

All went well for about ten days, then my Wonderful Husband spotted some tiny whitish things sticking out of the incision on my scalp. More photos were taken, enlarged and emailed to Tucson. Dr. Norton decided to call in an expert, Dr. Ley, a plastic surgeon to fix my scalp this time.

The white things are Vycril sutures working their way out

On Friday, May 31, 2013 we went back to Tucson and stopped to see Dr. Norton and then went to see Dr. Ley. It seems the tiny white things sticking out of the incision were Vycril sutures, ones that are put under the skin and should have dissolved. Only in my case, they didn't. Instead, they tried to work their way out through the now closed incision.

Dr. Ley said he should be able to fix it and surgery was scheduled for the following Friday, June 7, 2013. Since he had never operated on a person with wires under their scalp, one of the Medtronic representatives, Adam, came to the hospital to show him where the wires were located. My surgery was done on Friday night. Dr. Ley did what he called z-plasty and used a different type of under-suture, just in case my body was rejecting the Vicryl sutures from before. So, once again the right side of my hair was shaved, a little bigger area than the previous times. This time it was much more painful, plus not only did he suture the incision closed, he also used a surgical glue called dermabond.

Z-plasty with sutures and dermabond glue on my head
It was close to 11 pm before I got out of the hospital, so we stayed in a hotel right next door and met Dr. Ley on Saturday morning at his office nearby. He gave me the all clear to head back to Yuma, told my Wonderful Husband what to look for and scheduled a follow up appointment for June 24, 2013.

Dr. Ley and YumaBev at his office Saturday morning

Everyday my Wonderful Husband would look at my incision and it all looked good. As my hair grew back, it lifted the glue off my scalp and itched like crazy, but I didn't touch it. Finally, June 24, 2013 came and we went back to Tucson. Dr. Ley very carefully cut away the glue and removed the sutures. It took more than an hour. After he was done, he said he thought it would be just fine, and it was! There was an occasional piece of blue suture that would pop up, but within a day, it would fall out on it's own. 

The reason this happened was no one's fault, I just didn't have any extra skin on my scalp. Dr. Norton has done well over 700 of these surgeries and I am the only patient he has had this problem with. However, he now uses a different method of opening and closing the scalp, just in case. There was NEVER any infection.

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Monday, August 12, 2013

The Good, the Bad, the Ugly and My Sequin Dress!

I never had any problems writing humor stories about my life with Parkinson's disease. I'm not sure why, but I think it's because I felt terrible prior to getting diagnosed and within a day or two of taking carbi/levodopa I felt a whole lot better, so sharing my happiness was easy.

Breast Cancer is different. I am having a hard time finding anything funny about it. Prior to my diagnosis, I felt fine. I didn't have any pain. Sure, I had the lump in my breast, but I assumed, like most of the Doctors who examined me, that it was scar tissue from a previous benign biopsy. It wasn't, of course, so like Paul Harvey would have said, "Here's the rest of the story."

May 7th, 2013 started way too early; we went to the hospital, where I got into the lovely surgical gown and way too big surgical socks. A nurse did the usual list of medications, allergies, weight, blood pressure, have you eaten, blah, blah, blah and then the fun began...

First, I went to radiology, where they injected radioactive stuff into my right breast. From there we went a few blocks away to another building where they put a locator wire and some blue dye in the same breast. A mammogram was done to make sure the wire was in the right spot and then it was back to the main hospital.

Next we were off to the obstetrics department where they normally deliver babies, I'm not quite sure why I went there instead of the main operating room, but I didn't ask. A nurse started an IV in my arm and within minutes, I complained that it felt strange, so she took it out. The anesthesiologist came in, said she'd do the IV in the surgery and off we rolled. 

The next thing I remember is waking up and feeling like I was in an oven. They had hot blankets piled on top of me, trying to stop what they thought was me shivering uncontrollably. I wasn't shivering at all. I was having internal tremors from being off my Parkinson's medicines and having my DBS unit turned off all day. They quickly removed the blankets, but I was over-heated and ended up getting sick to my stomach. Guess I have to add one more thing to my "hospital" list, or better yet, I think I'll just stay away from hospitals altogether. 

While I was still in recovery, I went to reach for something with my right hand and my arm wouldn't move at all. This was very bad. You should have seen the faces of the Doctors and Nurses, they went completely white. They didn't know what to do. The surgical staff couldn't get in touch with any of the local neurologists or neurosurgeons because they were all in Phoenix watching a new DBS procedure. I had them go get my cell phone from my Wonderful Husband and call Dr. Maria De Léon, a Movement Disorder Specialist who also has Parkinson's. Thankfully, I had her personal phone number and she told the Surgeon what had happened to my arm.  

Fortunately, the feeling slowly returned and now, three months later, my right hand and arm are back to pre-surgery normal. What caused this, who knows? But it's another reason for me to stay away from hospitals.

We left the hospital that evening and came home a few days later. The Doctor called on Friday and said something like, "The margins were clean and so were the lymph nodes, so we think we got it all." This was very good news. 

The ugly bruise on my arm from the "strange feeling" IV is still visible months later, but the blacks and blues from the breast surgery disappeared within a month. How strange is that? By the way, I was showing off my newest sequin gown at a party for the APDA in Arizona just 10 days after surgery!

Ugly bruise is still visible months later

YumaBev in her newest sequin gown.

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Friday, August 2, 2013

Saying Goodbye

My beloved Dr. Zonis is retiring and closing his practice. I am very happy for him and his beautiful wife Perla. They will have lots of free time; to travel and spend time with their family. He has been my "superhero" for almost six years and has been helping other patients for over 38 years, so he really deserves his retirement, but at the same time I am sad.

I will really miss both of them. He has been more than a Neurologist to me; I think of him more as a friend (even though I only saw him as a patient.) I gave him a big hug at my last appointment, as always, but I didn't know that might be the last time I would see him. And that makes me sad, too.

Bev and her beloved Dr Z

As a patient with Parkinson's disease, my choices for a new Neurologist aren't too difficult because there are Movement Disorder Specialists in Phoenix, Tucson or San Diego (3+ hour drive each way.) At least for now, I can drive to see one of them, however many others here in Yuma can't make that kind of a drive, so I have been calling other Doctors in Yuma (familiar with Parkinson's), trying to put together a list for those support group members.

I'm not sure how to say Goodbye to a couple like Dr Zonis, his wife Perla and his wonderful staff. I guess I really don't want to.

PS Dr. Zonis got bored being retired and re-opened his practice in January 2014.