I am so tired of fighting.
All the time.
My Grandfather told me many years ago that I was “difficult to work with.” He said it with love. I don’t remember the exact context. I do remember it was said with a smile.
And he was undoubtedly right about that, like so many other things.
I had a boss a few years back that told me, “If you continue to hold everyone to the same standards you hold yourself to, you will always be disappointed.” Strong words, but also not inaccurate.
I am a lot to take.
I am intense almost all the time. I have a mouth full of words that last long past the attention span of anyone I strike up a conversation with.
I am passionate about things I believe in.
I make lots and lots of mistakes. But, I truly do my best all the time.
So I just sometimes struggle to understand why it seems everything I touch or encounter is a battle.
I spend hours upon hours sorting through medical claims. I look up who paid what, and when. I call on bills that need to be refiled. I take names on post-it notes with dates and times, in case things don’t get rectified.
I file out of network claims, and then I watch them processed in error. I make three phone calls to try to sort out the change in policy, which was simply just a mistake no one will own. I take names again. I am told to wait 6 more weeks for hundreds of dollars owed to me to be reprocessed. It’s only a little about the money. It’s mostly about the notebook, and the folder with the copies of the claims, and the alarm in my phone to remind me when I need to follow up on the call again.
I send medication to the mail order pharmacy because we have no choice. And then I wait for them to screw it up. That sounds negative, but it’s simply accurate. They have an entire notebook in my world to help manage the 9 mail away prescriptions between us. There is a perpetual box on my ‘to do’ list which tells me to check on the progress of any refill.
I make appointments. The list has 20 specialists between us. They vary from twice a week to once a year. A psychologist once told me not to let the appointments interfere with “preferred activities.” So there is a matrix with the impossible task as the ultimate goal. Except none of the 20 doctors know about the other 19. Or the full time job. Or the high school honor student’s schedule. Or swim practice. Or theater. Or voice lessons. Nor do they care. And I get it. They can not hear everyone’s story. So when I call to try to carefully place that appointment in a very tiny window of time, they are always unhappy with me. They think I’m being unreasonable. And maybe I am. But, I can’t imagine why I wouldn’t TRY to get everything to keep her physically healthy and still let her be a teen.
I deal with unexpected schedule changes. Like when I carefully stack 2 appointments in one day, and then one has to move to right smack in the middle of a week long summer internship that was planned forever ago, because now instead of two doctors with Friday hours at the same facility, one has Monday and one has Friday. No overlap. So I erase, and juggle. Except I’m not great at juggling in a literal sense, so one got cancelled and hasn’t been rescheduled. Actually two… because summer can not be ALL about doctors. Nor can every day off. But, neither can every day at work or school…
“What do you mean you’re not going to reschedule today?”
So much of our condition relies on screening. Early detection is a blessing. It is the key. It is also tedious and time consuming. It is possible to be grateful and overwhelmed simultaneously.
So much of this is case management. And, when last I checked my master’s degree is in education, not medicine. But, with no one to coordinate care I have to guess a whole lot. I have to decide if 9 months will be ok instead of 6. I have to decide when to push the doctor for more lab tests when the fatigue won’t quit and the thyroid is ok but the spleen…eh, no one is quite sure about the spleen…
And there are doctor’s whose pride won’t let them return a call because I haven’t seen them recently enough.
There is the genetics appointment lingering again. Because maybe Cowden’s wasn’t the WHOLE answer…
And the “normal people stuff” like the seemingly never-ending root canals because my stress is played out in the jaw clenching that overtakes the episodes of sleep. That is on the occasions everything is calm enough for me to make it to my bed.
Or the foot injury. The “rare” lisfranc ligament partial tear. Close to 6 months later. Not a soul wants to hear me tell the story again. No one wants to believe that it still hurts badly enough that I haven’t take a real walk since last fall. I’m not lazy. I’m horrified by the state of my body in the absence of real physical activity. I am trying to be patient. My patience is running out alongside my sanity.
And the IEP. Oh, the Individualized Education Plan… and the meetings. Over and over and over again… Meghan is on the waiting list for a service dog. She has PTSD and generalized anxiety disorder. The dog is coming. The process is wearing me out.
I am a lot to take.
I am often “difficult to work with.”
I hold myself and others to a high standard.
I am intense most of the time.
I am tired.
I am so very tired of fighting all the time.
There is no choice though. No choice at all.
So, in the mean time I will be here. Strengthening my resolve. I may bend, but I will not break. I will continue to strive to show my girl that she can have a rare and currently incurable disease, while excelling at school, at sports, being active in the community, and being a generally decent human.
Last month we walked out of a screening appointment. It was not critical. It was an hour behind. We rescheduled. Also a valuable lesson.
I am tired of fighting, but I am far from done.
As my Grandfather said, I am “difficult to work with.”
When I have no more, I put my hands together and ask… and I am never disappointed.
Through God’s Grace alone we remain…
I’ll be the first to admit the ugly truth. It’s far from perfect. It’s not neat or clean. There is no bow. And yes, most of the time I do delete the awful ones. Those images and experiences are seared into my soul.
I prefer to go with the theory that the body forgets pain… At least your own. It’s how we survive. But, if you live watching a loved one in pain – you know the memory will not slip even a tiny bit. If you hold your child as they cry out in pure agony, or when they are weak from fever, you can remember where you were each time. If you watch your teen wince simply through a series of steps, or check to make sure they are breathing as they sleep the better part of two or three days at a clip – you don’t forget.
Recently, Meghan was in a production of “Beauty and the Beast Jr.” with the Staten Island Children’s Theater Association, Inc. She loves the experience of working with a theater group and has been with this one a few years now. It is such an enjoyable time in her life. She spends months of Saturdays with genuine quality people preparing for the show.
And during those same months she is thriving academically.
And training for swimming.
And making regular appointments, routine, follow-up, and therapy.
And contending with seasonal allergies that are nothing less than relentless.
And, she is, every single day a person living with Cowden’s Syndrome and the effects it has on her, both physically and emotionally.
The show was almost 2 weeks ago. It took me a little bit to get my thoughts together.
I think I have it now.
Living with chronic illness, chronic pain, chronic life altering physical ailments, is in some ways similar to putting on a production.
You set your sights on what you want to accomplish – large or small. In some cases it’s going to a party, and in other’s it’s going to the backyard. But, you plan for it. You practice it. You consider every detail. You may have to select the right costume and even stage it so you don’t sit or stand for too long. You know just what your body can do and there is a short window where you have to make it all work.
The rest of the time you are backstage.
You are in pin curls and shorts with a tank top.
You are rubbing your feet. You don’t have make-up. Backstage and rehearsals, these are what life is made of. But, we don’t take the camera out while we are there.
Everyone’s preparation is different. I can only write about ours and confidently say everyone has some level of preparation before the “show”. Some people make it onto the stage more often than others. Some people have fewer performances, but make them count as much as they can. Those people take nothing for granted because they have no idea when they will step out into the “stage” again.
That’s what social media looks like to me, anyway. Every picture is on the stage. Some have more than others. But, because of the world we live in it is easy to judge based on what we see without considering what we DON’T see.
The night of the show Meghan went to the diner with her friends. She got home close to midnight. It was Sunday, and a school night, and I had already decided she’d stay home the next day. It wasn’t a reward. It was a necessity. The amount of energy her body had expended could not be recovered quickly. She slept until 2pm the next day, and was asleep again by 9.
I sent her to school that Tuesday – ready to roll. She swam at 5am, did a full day of school, an hour of physical therapy and another 2.5 hours of swim practice.
Probably not the best plan.
The physical therapy is in place to try to strengthen her overall. Joint laxity, ligaments subluxing… all sorts of cracking, popping and shifting. The search for answers is on, but in the mean time we do PT…
By Wednesday she couldn’t move. She made it to school – barely.
Her IEP meeting was that afternoon, and we had lengthy conversations about all sorts of physical and emotional needs relating to school. We also spoke at length about the service dog we are in a holding pattern waiting for, and how he will fit in to the big picture. So many questions…
Thursday we got in the car to go to school. By 7:30 I had her back in her bed. She just could not. She slept until early afternoon Thursday, followed it with and early bedtime and slept again until early afternoon Friday. There was a little less sleep as the days went on but it was a slow process.
The show that was so incredibly worth it in every way – cost her a full week in recovery time. Her body hurt so deeply. This is not an out of shape child. This is a person living with a chronic pain and illness that is affecting her body in ways not even the doctors fully comprehend yet.
But I didn’t post pictures of her wincing in agony, or sleeping for days.
To the outside world she doesn’t look sick. She’s 5 foot 8, full of muscle and extremely well-rounded.
She works hard at it.
Some days are easier than others. But every day she works. She is fierce and relentless and she does not quit.
Next time you catch a photo of her smiling or singing in a pretty dress know that it took a lot of staging to pull that off, and there will likely be a lot of recovery on the back end.
But, she wouldn’t have it any other way. Not for a moment. She is my inspiration to remain…
As of today, my records show 78 appointments between the two of us since January 1st. That’s 148 days. More than one every other day.
78 scheduled appointments. Some appointments are close and some are far. Some are routine, some are emergent, some are therapy and some are follow up.
Every single one of them interrupts or controls a day, depending on its location and wait time.
So what do you do?
This is reality. This is chronic illness x2. This is what it is. These appointments are non-negotiable. They also can easily become all-consuming.
What do you do? How do you keep it in check? How do you keep it from swallowing you up? How do you keep it from winning?
I thought I knew. I though I had it all mapped out for a while. But, the oppressive weight of chronic illness can be crushing.
It happened slowly to me.
I was carrying a bucket. Every appointment was a drop. Every hour wasted in traffic was another. Every time I picked up the phone to fight a medical bill, every time I juggled a full time job, and the full-time extra curricular calendar of my teen, the bucket just got more and more full. Now, I carry the bucket. All the time. Everywhere I go.
And it’s full. Really full.
So I try not to spill.
But there isn’t much room for anything else at all.
I’ve said no to one too many events.
I have turned away from one too many dinners.
I have declined get-togethers because I just don’t feel like I can breathe.
I spend the whole day with this bucket. My mission is to keep it from spilling. It holds too many things too valuable to spill even a drop.
I say out loud that I am fitting chronic illness into our lives. But, many days I feel like I am fitting life into our chronic illness.
I am not complaining. There is so much I am grateful for, and so many things I would never ever change.
I am however simply trying to keep from drowning in my bucket.
Working on my balance…
I always heard about the body changing every seven years. I never gave it much thought.A quick Google search brings a couple of interesting articles.Every Seven Years…
This has been on my mind a lot the last few weeks. I’ve never been one to spend New Year’s Eve wishing a year away, or blaming one for my misfortunes. However I do have a rock solid memory for dates, and 2012 is a year I will never forget.
Digesting our PTEN diagnoses from the fall of 2011, 2012 began with thyroid biopsies for my girl. It was the year of risk assessment and triage for us. In February there were breast and neck MRIs for me and another in a long string of embolizations for an AVM in Meghan’s knee. In March came my prophylactic double mastectomy that showed DCIS on pathology. In May of that year came my hysterectomy, as well as breast and an external pelvic ultrasound to assess my then 8 year old. In June she had another thyroid sonogram as suspicion of her nodules increased. She also had an MRI to assess the progress the embolization made on her AVM. Insert recovery times, and “normal people stuff,” and that took us only to the end of third grade.
In the summer she had kidney and bladder ultrasounds, and an MRI of her pituitary gland. I added an abdominal MRI to baseline hamartomas that to this day have continued to slowly outsize my spleen itself. That MRI was repeated in November, and we ended the year with an uptick in concern about my girl’s thyroid.
Things have not really calmed down since then, and I have never counted surgeries and procedures from 2012 alongside any other year to see if it truly was our most medically active, because by all accounts the year you spend trying to process this diagnosis is the longest one ever.
Over time we have adapted to our lives, dancing in between appointments, carefully trying to schedule doctors and surgeries around life, and not the other way around.
Its a valiant effort. Sometimes I am successful at it, and sometimes it is an epic fail. Regardless there is no alternative but to keep pressing forward. Adapting and changing.
Sometimes the adaptations make us stronger. Other times they make us more efficient. I am not sure the impact of the adaptations on emotional health. I am focused on not letting this diagnosis take away my life. I am determined to live my life in spite of it. But, sometimes I do wonder. I keep in touch with virtually no one. Unable to make plans for the likelihood they will need to be cancelled or changed. A deep fear of not being able to hold down a non-medical conversation reverberates through my soul.
So as I was hopping around on the crutches this morning it occurred to me that it is now 2019. It is seven years since the epic 2012. This year is shaping up to be one for the record books.
It is hard to tease apart the Cowden’s from the “Normal People Stuff,” because at this moment life seems to be a bit of an all-consuming medical drama.
That confuses people who see me smiling through the day at work with a large boot attached to my left foot for well over 6 weeks. It makes people I run into at the mall think all must be well. I smile. Most of the time. Frowning gives you uglier wrinkles.
Today was to be the day the podiatrist freed me from the walking boot. Instead he told me to trade it for crutches in the house. The boot is starting to hurt my knees and my hip. My foot is simply not ready to be full weight bearing. The partial tear is not healed. In fact it seems no better, if not worse than when I fell at work on January 8th. The delay in diagnosis caused by a denied MRI likely made things worse.
I was given names for a second opinion, and cautiously handed a script for PT, which cautions the potential therapist to be “NOT TOO AGGRESSIVE” with my foot. The weather is getting warmer. My pleasure comes from new sneakers and long walks…
Simultaneously working the juggling act with a few other issues, I have seen just about a doctor a day for the last week.
Fortunately my daughter’s brain MRI for lesions being watched for the last year was gloriously “unremarkable” on Tuesday and I am grateful for the little things – because they are the GIANT things.
My ENT was perplexed, as most doctors are. The hearing test was normal. The fluid that I feel was not visible to him as it had been to the other doctor. He spent a good deal of time listening. He decided he would offer me a tube to drain the ear with an anticipated 5% success rate. (No thanks) and an MRI of my head which would show the ear. He said he was 99% sure the MRI would show nothing. Then he corrected himself to say he was 99% sure it would show nothing in the ear… but I should anticipate incidental findings that will likely need follow up. Whatever. Brain MRI with Cowden’s is not a bad idea anyway. MRI tomorrow.
My thyroid labs, after 3 weeks on the new medication regimen indicated the need for another change. I’ve been having heart palpitations, and the highest blood pressure reading of my life. I’m awaiting the arrival of the new dose, and setting up the next blood appointment, all while wondering if this is an exercise in futility as it looks like the rest of my thyroid will need to be removed in the not so distant future. My partial thyroidectomy was in 1993. Clearly the body keeps changing.
I had a routine bone density screen on Weds. I also went for my abdominal sonogram to monitor the spleen. It’s a 45 minute ultrasound that requires 4 hours of fasting, but checks the spleen hamartomas for growth, while evaluating the liver and kidneys. Except it was done in 6 minutes.
Apparently there is a drop down menu somewhere when you order an abdominal ultrasound. I think the first item is Aortic screen. The “Complete” that I needed was a few clicks down. I’ll need to reschedule. But, I am looking forward to hearing the random screen I didn’t need was “unremarkable.” Results pending…
I am a different person than I was 7 years ago. We all are I suppose. If you evaluate your life in 7 year increments, you will definitely note changes.
The question is, will you be happy with them?
I am stronger. I am more fit. I am more confident in my knowledge. I am less drawn into drama.
I am also less social. I am less knowledgeable about world news, and more knowledgeable about rare diseases. My attention span is shorter. I am easily distracted. My brain is always on. Sometimes I catch really important things. Other times I torment myself…
I am introspective and honest.
Happy is a relative term.
I’ve spent a lot of time watching Netflix. More than I ever have. I picked up Grey’s Anatomy and keep hearing Meredith quote her mother.
“… But the carousel never stops turning. You can’t get off.”
I will hold on tightly and remain
Two weeks of as much rest as I can possibly stand.
The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life. You ALSO have “normal people stuff.”
After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon. All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.
And then there was the new endocrinologist on March 12th. It was a backwards progression of sorts. A referral from the surgeon who has been following me since my PTEN diagnosis. I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998. He was bothered by my questions. I bounced in and out of a few. I found them mostly arrogant and out of touch. I held with one during my pregnancy in 2003, but ditched him soon after my C-section. I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.
At that point I was handed off to an endocrine surgeon. The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real. We agreed on annual follow-ups using the ultrasound in her office. All was smooth until February 26th, when she saw some calcifications on the ultrasound. She got spooked and wanted a “fresh pair of eyes.” She referred me to an endocrinologist in her hospital.
He sent me for a “proper” ultrasound before my appointment. He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam. He told me that there were some potentially concerning features, but nothing that appeared urgent. He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to. In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…
He told me the radiologist would read the ultrasound with more concern than he did. He was right. So there will be another ultrasound in August. We’ll talk about the status of that right thyroid lobe then. In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained. Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back. With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.
So back in circle to the “normal people stuff” intertwined in this balancing act. April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September. It doesn’t matter that it has headed into my mouth and is bothering my teeth. That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday. Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear. Pain management. Maybe it’s Cowden’s. Maybe it’s allergies. Maybe it’s simple. Maybe it isn’t.
And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson. It knocked me on the floor. I was so worried about the shoulder, and the breast implant that I ignored the foot. At least I tried to.
About 2 weeks after the fall I saw my primary and asked for help. She suggested an MRI. GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks. I was left with no choice but to continue a job that kept me more hours on my feet than off. By March 6th I couldn’t take the pain anymore and headed to a podiatrist. He evaluated the foot, ordered Xrays, and got them read within hours. By the next day he had the MRI approved and I went in for the exam. About 72 hours later I got a call asking me to come in to discuss the results.
That’s never an actual good sign.
So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them. And I was right.
MRI revealed a partial tear of the lisfranc ligament in the left foot. Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI. Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.
I got a soft cast, and a giant walking book. I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.
I have another appointment with the podiatrist tomorrow.
There is State testing at work this week. I’m always there for testing.
But right now I’m actually testing my inner strength. Resting my foot.
I’m preparing for my clearance to return to work. I’m preparing for my ENT appointment. I am preparing to get my ear fixed. I am preparing to get ready to lose the other half of my thryoid. I am preparing for another plastics consult…
And all the preparing in the world won’t matter. Because life will come in the order it wants. That is the lesson for Cowden’s Syndrome and real life…
The dog hair and I will be here until then….
And that might be an accurate description of my current assessment of living with Cowden’s Syndrome.
It’s so hard to put into words. Those who don’t understand are likely to think I’m insane.
When you know your mission, you carry it out. You are driven. Focused. There is something that needs to be accomplished, or an adversary beaten. You have a crystal clear goal.
As difficult as those moments have been, I am starting to find the ‘forever’ aspect of this syndrome to be overbearing at times.
Some days it seems no matter which hurdle we clear, something else is in the line of fire.
I waffle between doctors who are either not interested, or are so overworked that they lack the time, energy, or desire to research and think from the alternate view required for a 1 in 200,000 mutation on the PTEN (tumor suppressor) gene.
Research. Real research (yes, I am smart on the internet and know what to read and what to brush off,) is surfacing so often that it is hard for me to even keep up. I don’t expect my doctors to be on top of it.
I expect them to treat me as a partner in my own care.
They have gone to medical school. I have not. However I have more extensively studied Cowden’s Syndrome than they ever will. And I still have a great deal to learn.
Gone are the days when “doctor knows best,” and I should comply without question or explanation. This is my life. This is my daughter’s life. And wherever I can assist, I intend for those lives to be long and strong – physically, mentally and emotionally.
Tuesday the 26th was my “doctor day.” It became a necessity years ago that I take a personal day and “stack” my annual appointments. This makes the day out of work worth it. Some years things are smooth. Other years, well… not so much.
After a fall at work in January, where my 5 foot 7 frame ever so gracefully landed on my right shoulder and implant, I have been uncomfortable. The implant that was previously easy to ignore was prevalent in my thoughts all day. It is not ruptured, and I was able to get MRI confirmation of that. However it is just annoying. It sits slightly off place, a constant reminder to my brain and body that it is THERE. I am grateful it is not painful. I am not content to live with this situation indefinitely.
My discomfort, and the knowledgeable people I share some Facebook support groups with, let me down a path of research on silicone implants.
I learned a whole bunch of things. Most of those things are probably inconsequential in my life, but they made me angry. I had double mastectomy with immediate implants in 2012. In 2016 the implants needed to be replaced way ahead of schedule. (With a maximum of about 10 years on average). I had one breast surgeon and two plastic surgeons.
No one spoke to me about a condition called BIA-ALCL (breast implant associated anaplastic large cell lymphoma). The risk is minimal, but it exists. No one ever talked to me about it and allowed me to make an informed decision. We have a rare disorder that predisposes us to greater cancer risk. No one has thoroughly studied the occurrence of BIA-ALCL, and certainly no one has considered it in relation to PTEN Mutations. No one knows. But, I deserve the uncertainty discussed.
Further down the same page is the screening recommendation that women are screened via MRI for silent rupture 3 years after the first implants, and every 2 years following.
Not a word. Ever.
There are other pages. Solid articles. But if you read the above link you get the point.
So I saw my breast surgeon first. All was good on exam. That was a relief. I began a discussion about the above, and was really upset by her flippant response. I was told I was reading too much on the internet. I was told that there was no conversation about possibly removing my implants. Granted this is not something I was ready to do tomorrow, but it was something I wanted to learn about. I was told I would be subjecting myself to unnecessary surgery and she would counsel my plastic surgeon against even entertaining it.
I honestly felt like I had been hit.
I asked her what her thoughts were on BIA-ALCL related to Cowden’s Syndrome. She had no answer. I asked her how many PTEN patients she sees. 20? No 10? No 5? No, less than 5.
I asked about screening MRIs. I was told they were “unnecessary”. I referred her to the above link.
I could not believe that I sat in the middle of a major cancer center in New York City. I felt violated and angry.
Next came my oncologist.
She is a kind woman with very few answers or helpful tips on risk management. She pretty much looked up Cowden’s and checked that I have no breasts, no uterus, and half a thyroid, so I should be easy to manage. I asked her questions about bone density,and heart health, (30 years of thyroid replacement, 7 years into forced menopause) and she simply said, “I don’t know.” I asked about the lymphangiomas on my spleen that currently outsize the spleen itself. She started to talk to me about spleenic “cysts” but I drew her back to lymphangiomas and the vascular component that often affects PTEN Patients. I have not desire to lose my spleen, nor do I have a desire to harbor a potentially destructive organ. We settled on a bone density and an abdominal sonogram to measure the lymphangiomas. At least this makes sense to me.
Off to the otolaryngologist with a hopefully not PTEN problem. He did vocal cord surgery for me 2 years ago to remove some growths. This day the vocal cords were clear. The right ear however has been an issue since September. I spent a bit of time treating for migraine, and blaming the chlorinated pool spectator sections. I had 4 doctors prescribe antibiotics when they saw fluid in my ear, and another a short course of steroid. All cautioned me about hearing loss. I regained my sanity to some extent when a friend gave me Mucinex sinus max. Something about it helped the pressure. The doctor got a look in my ear and used his camera to show me the fluid inside the right ear that is not draining. He also looked deep in the ears and told me something was “off” with the ear canal. But that was as far as he would or could go. He gave me the name of a doctor to treat me. He also told me to get a hearing test, and to understand that they must find a cause prior to any treatment. April 18th was the first I could get. Mucinex for all till then.
The endocrine surgeon came into my world post diagnosis in early 2012. I believe her function was to evaluate regularly the remaining 1/2 thyroid, as thyroid is one of the greatest PTEN related cancer risks. My thyroid was partially removed in 1993 due to a diagnosis of “multi nodular goiter.” At the time, the prevailing wisdom was to leave one of the lobes intact and suppress it with high doses of synthroid, keeping the TSH (Thyroid Stimulating Hormone) low. For years I operated with a lower than normal TSH, but it worked for me and seemed to keep the remaining tissue quiet.
When I was diagnosed and my team changed, so did some of the management theories. This endocrine surgeon, who was only managing my medication as a courtesy, not as a regular practice, preferred a slightly higher TSH level. We jousted a few times about fatigue, and other side effects that come with adjustment. We had made peace on a split dose, until I had my levels measured in January and they were WAY to high for my physical comfort zone. After my initial glee that I was not totally losing my mind, and that I needed medication, I started to wonder why the level change. My weight was consistent…. my activity level consistent…
She did a routine sonogram of my neck in the office. For the first time in 7 years she paused. “There are small calcifications. They were not there before.”
I asked about a biopsy and she told me she would not even know what to biopsy. She’d be “guessing” as the thyroid bed is undefined. She said she wanted me to consult with a colleague who is an endocrinologist well versed in molecular genetics. She told me it was no rush. She was going to Email his staff, and I could reach out when I have a school break in April.
That was Tuesday afternoon.
Wednesday morning I received a call that it was suggested I book the first available appointment. I did so for March 12th.
I was told to obtain an ultrasound for basis at a local facility.
Thursday morning the phone rang again directing me to get the ultrasound at the hospital before I see the doctor.
Things seem to have moved from very casual, to lets not dawdle, quite quickly.
I’m not emotionally attached to too many non-essential organs anymore. I’m vested in getting anything out before it causes me trouble.
Life is a juggling act.
I have plans.
Doctors appointments get in the way.
I know people who use sick days to vacation. I use mine on the Gowanus Expressway.
I want to get it together, and see people. I want to have casual conversations and catch up on people’s lives.
I will. One day.
But for now the energy remains focused on a kind, lovely, compassionate teen, and keeping these two “Rare” ladies in their best health.
Oh, and that fall in January left me with a pain in my right foot that just won’t quit…
Tick tock… the waiting continues…
And we remain forever