Mystery Illness Solved

Continued from my previous post…….

The pathologist said my tumor had the properties of Medullary Cancer and he would need to do a second biopsy to send off for confirmation and it would take a week or 10 days to get results.

We returned to Mexico and I waited and also researched. I found out that with a tumor the size of mine, over 4 centimeters, there was a 90% chance of metastasis and Medullary tends to go to the lungs and bones first. Now I was concerned.

After one week I called the pathologist’s office and was told they don’t give results over the phone or via email and to call the ordering physician, which was the ENT doctor. I called there and was told the doctor does not speak to patients on the phone. Wow! Even when he knows I am in Mexico and I have a serious cancer? I called pathology back and asked them to send the report to my family practice doctor. It was the same story with my family practitioner with a policy of not using email, no phone calls, but gatekeepers confirmed they had the report. You would think my health provider (now ex) would have the compassion to call me. My husband has a different doctor in the same clinic and they call him regularly with every test result. I called the ENT office repeatedly and finally was told I could set up a tele-health appointment with the doctor but he only schedules them on Saturdays. This was a Monday.

Most people don’t have anything nice to say about Facebook but I am ever so thankful that I had just joined them a few months before because a search led me to a very active Medullary group. Over and over, I read advice to new patients to go to an expert in Medullary cancer and there are only a handful in the US. Many patients didn’t have the surgery done correctly the first time and then the cancer spread and they had to have repeat surgeries. The University of Texas MD Anderson Cancer Center (MDA) was mentioned the most.

I called them and was connected to the Endocrinology Clinic. The same person that answered the phone took the information on where I had the biopsy and then set me up with a patient portal after confirming what insurance I had. Unbelievable. They hadn’t even seen me or confirmed the slides but accepted me as a patient.

In less than a week, MDA had the slides tested, confirmed Medullary Cancer and posted the pathologists’ report to my patient portal. No secrecy and paranoia with MDA! Then they scheduled me to have two days of tests with surgery on the third day for just two weeks later.

During those two weeks I read too much and was convinced cancer was wrapped around my trachea, esophagus, voice box, and whatever else is in that area because of all my voice and throat problems. Unfortunately, this IS a reality for many patients. I was certain it was the end for me and it’s very interesting what my thoughts were. The very first overwhelming worries were that I had so many partially used bottles of shampoo, conditioner, lotions and creams and what was Steve going to do with all my stuff. I combined bottles of shampoos, made myself use the emptiest ones first even if I didn’t like them, and I donated clothes to the non-profit ambulance company in town. Then I obsessed with how was Steve going to deal with the administrative side of living in Mexico. There is more involved than being in the US and it’s not easy.

We went to Houston in the RV (not recommended) and stayed in the RV park closest to the hospital (also not recommended). I took a taxi back and forth to the hospital and Steve couldn’t go with me because of Covid.

I had blood work, scans, and doctors appointments all day for two days. The schedule is grueling but there’s no time wasted going from appointment to appointment. My testing went until 9:30 pm the first day. When I met with the surgeons’s assistant at the end of the second day for the results, I was only half heartedly listening because of exhaustion and the assumption it would be all bad news. I can’t remember what she said, but I did a double take and asked her to repeat. She said the cancer was confined in my thyroid and it appeared there was no lymph node involvement. Double triple wow! You have no idea how relieved I felt to hear that.

Protocol for Medullary Thyroid Cancer is to remove both sides of the thyroid as well as lymph nodes. There is no deviation from that according to everything I read. However, 20% of patients who have the entire thyroid removed will have life long problems related to missing the hormones and no matter if the lab numbers are correct, will not feel right. Some have problems regulating calcium and must eat calcium pills all day long. So I was told, that given my age and that the cancer was contained, I could opt to only have half the thyroid out.

I also met with the surgeon, the endocrinologist and a resident and polled them for what they would do. The vote was 3-1 to only take half. The problem with that is they needed to know if I had the genetic version of Medullary which occurs in about 20-25% of patients. The genetic kind is more aggressive and the entire thyroid would have to come out. The surgeon was pretty sure mine was sporadic, but had to have an additional test to confirm it. It would take two weeks for results. Surgery was rescheduled for three weeks out and we returned to Mexico in the meantime.

The surgeon said I would probably be in the hospital three overnights, mostly due to drainage tubes. MDA owns a wonderful hotel connected to the hospital via a glass skybridge called The Rotary House. We made reservations for five nights.

MD Anderson view from Rotary House Hotel room

Everyone was wonderful pre and post surgery. As soon as I woke up, someone said they got it all! Two hours after surgery the surgeon visited me and said that I did so well I could leave immediately or stay a night. My choice. Of course, I opted to leave and within 30 minutes an aide wheeled me through the skybridge to Steve in the hotel. Someone I had gotten to know had surgery the day before by the same surgeon for the same cancer and was in the hospital 8 days. I was so lucky! My friends thought I did so well because of my clean living. Could be, but I do think meat and dairy is unhealthy for us.

I will be on a once a year schedule for followups at MDA if everything looks good when I return to Houston again next month. Then we finally will go Mazatlan again!

Mystery Illness for 43 Years

Our property covers four levels from the street to the lowest garden area. The main house where we live is mostly on one level. For four years, the climb for me ranged from moderately difficult to torture, with my having to stop and rest multiple times before making it to the top because of breathlessness.

My serious shortness of breath began about 1993 and at the time I thought it was because I had moved from Germany to a town in Colorado that was over 8,000 feet elevation. But even as far back as my late 20’s I couldn’t even begin to play tennis, racquetball, or take an aerobics class. I was 29 when an aerobics instructor would not let me continue until I saw a doctor because my heart rate went too high too quickly. I was confounded by seeing older and much heavier people ride a bike. And I weighed less than 100 pounds and was otherwise healthy. I met Steve in 1995 and he thought I was just out of shape. We went skiing on our second date and I had no problems going downhill. But no matter how often I rode my bike on flat ground, I could barely ride the inclined short block from my house up to the next street.

My shortness of breath grew worse and I began having sudden episodes while sitting or standing still. About 10 years ago Steve insisted on taking me to Urgent Care who referred me to a cardiologist that saw me the next day. Every test indicated I had a healthy heart. I had a stress test three years in a row but each time the nurse raised the incline, my blood pressure and pulse rate sky rocketed and I was gasping for air. The nurse would then stop the treadmill. I was officially given a poor prognosis but the cardiologist couldn’t give me a diagnosis and referred me to a lung doctor who also could find nothing wrong.

Over the years, I developed other symptoms and presumed that this is just how it is as I get older. I had no clue the symptoms were all related.

It all began one day 43 years ago when I thought I was coming down with a virus. It’s hard to explain but you all have experienced it at one time or another. Except the overwhelming lack of energy, fatigue, and overall crummy feeling lasted for months and then went away for a few months, only to return again and again until it was constant.

Chronic sinus problems that I called vapor lock woke me because I couldn’t breathe out of my right nostril. The top of my nightstand was stocked with Vicks, nose spray, inhalers, cough syrup and more.

It was 30+ years ago that random hot flashes came over me and I was still too young for menopause. In 2012 I began having drenching night sweats that came in spells with a pauses of several months between them until it was an almost nightly occurrence.

About 10 years ago, I had an episode that lasted about a month where any talking caused an irritation in my throat that made talking and breathing difficult. My mother was sure I had asthma and I went to the doctor. He couldn’t find anything wrong and prescribed tranquilizers. Why couldn’t he just say he didn’t know what was wrong? As time went on, this happened more often and I instinctively learned to modulate my voice lower and not talk too much and to definitely never laugh.

Around the same time, I would occasionally wake up at night with a cough where it felt like there was a dust or a hair deep down my throat. A few years later the hair feeling became more like a very tiny stiff fiber. I presumed it was because our dog Molly slept with me. I removed her from the room and washed all the bedding and cleaned the carpets. As time went on, the night coughing got more violent and truly frightening. I obtained an inhaler which put a stop to the cough episode immediately. That inhaler was never more than 2 feet from me.

About six years ago earaches began in my right ear. The aches ranged from a general ache to just below my ear to sharp pains inside my ear. This was daily. I told every doctor I saw about the earaches and even went to an ear nose throat specialist January 2020. Nothing.

Four years ago I had what I thought must be anxiety. I would get a sudden sinking feeling in my stomach. This went on for a year before I grabbed my oximeter that showed my heart rate was 47 and quickly climbing back to normal. I bought a smart watch to track my heart rate and discovered the sudden plunges were occurring several times a day.

There wasn’t a day that went by that I racked my brain trying to figure out what was wrong. I researched afflictions from granulomatous to sarcoidosis to leukemia. Other than the earaches, I quit telling any doctor anything about all of these problems. If you were a doctor and a patient rattled off all of these problems, what would you think? A classic hypochondriac for sure.

In the USA we must have a family doctor in order to get referred to a specialist should the need arise. I saw my family practice nurse each year but told her nothing because it was a waste of my good breath. Until October 2020 when, as a by-the-way, do you think this lump in my neck could have anything to do with the fact I always feel like I have a virus? Up until now, I had never mentioned the lump, which was visible from across the room. In past years, various doctors commented that I had a goiter or just said “you have a swollen neck on the right side”. I just thought it was a swollen gland. The nurse practitioner thought it was lymph drainage.

As it happened, I had a ear, nose, throat (ENT) specialist appointment the next day for the sinus blockage and the family nurse practitioner said to mention the lump to him. I did and he felt it. This was the FIRST time any doctor felt my neck and you remember I saw an ENT doctor earlier in the year for my earaches on the right side. She should have known better.

The new ENT doctor said I needed an ultrasound and possible biopsy. I wasn’t alarmed because I always aced every medical test given to me. He thought differently and gave me a spot ultrasound right then and repeated that I needed a biopsy. I told him it would have to wait a few months because we were returning to Mexico in two days. He got me in for a biopsy the very next day. The pathologist began by saying “if you are going to have cancer, thyroid cancer is the one to have”. Not. There are four different kinds of thyroid cancer and not all are the “ones to have”. Anyway, I still wasn’t concerned.

Long story short. I was diagnosed having rare Medullary Thyroid Cancer with less than 1,000 cases diagnosed a year in the US. My version of it was even rarer with about 5 cases per year. My right thyroid, the tumor and 12 lymph notes were removed and immediately every single one of the above symptoms disappeared.

….to be continued….

Down the stairs or up the stairs, it doesn’t matter anymore.