When you reach the end of your rope…

Published on June 3, 2018June 3, 2018 by beatingcowdens2 Comments

There is no other choice really. We must hang on. We must always hang on.

So often this is easier said than done.

Last weekend I stayed up all night Saturday digging out from under a pile of nonsense on my desk. It was regular stuff that I had let pile up. It was junk. And it was medical bills.

There were 7. Not explanations of benefits, but actual bills.

I am fortunate to be fully capable of paying my medical bills. The part that is so often a struggle is sorting out WHICH bills NEED to be paid. Between Meghan and I we are at at LEAST 2 appointments a week. And that is a really good week. Some are close, and some are far, but they are still blocks in our daily calendar.

I try to remain very organized about where we were on which day – but it is a formidable task that sometimes gets away from me. Both of our insurance companies have moved to electronic storage of claim status, which is really helpful. Except for my husband’s, my secondary, which won’t allow me access to my records, in some twisted HIPPA attempt to protect me.

But, I digress. It was about 5 AM on Sunday and I was tired but pleased. I had pared down the pile and was left staring at these bills. I sorted, cross referenced the bills to processed claims, and printed what was necessary. Only one of the 7 was for something I actually owed. The others were clipped with notes to assist me when I got around to teaching people how to do their job billing when there are two insurances. When I could combine the energy with time to spend on the phone, during business hours, while working a full-time job.

I was ready to leave for the grocery store by 6:30 AM. I am grateful for the stamina that allows me to pull that off every once in a while.

I got to thinking about it though, and its been on my mind all week.

We seem to have a good handle on #beatingcowdens. But, really the day-to-day living with it is not for the faint of heart. It is that day-to-day that is wearing on me.

We are, my daughter and I, the “healthiest looking sick people” you’d ever want to meet. I am grateful. I am lonely. I am tired.

One thing blurs into another. Someone asked me how I was spending my weekend, and I replied, “trying to return to zero.” I think she thought I was nuts. I have long passed hope of relaxation or socialization. The schedule is so insane that the weekends are for getting it all re-set.

It’s not all bad. Some of it is swim practice and theater- normal teenage runs. I don’t mind those.

And even though our physical therapist, and our chiropractor are lovely, I would prefer to meet them for a social call than so often at their offices. The orthopedist is a delight. So smart, and so personable. Yet- visits every three months I could do without.

Every step seems hard. I have the unshakable sense that not many people do their job with integrity or pride. There is so much energy getting through each day, that the residual battles over copays and forms can sometimes be too much.

It seems that any variation to the tightly planned schedule which balances practice and appointments (often layering many things into one day at precise intervals) sets off a chain reaction that is hard to recover from.

Which brings me to the problem of when things go off track completely.

The ‘Lymphangiomas’ on my spleen were first found in 2012 after my diagnosis. They were an incidental finding during the many screenings I underwent during that time frame. They were to be monitored via ultrasound.

They grew. A bunch. And they keep right on growing. Annual ultrasound monitors their measurements. Currently there are at least 4 of them and they are bigger than the spleen itself.

You may not remember, but in November I drove myself to the Emergency Room when I was concerned about this very same spleen. November Post- “You Might Have Cowden’s Syndrome if…”

It held on then, and I was released.

The most recent ultrasound was in April. One of those lymphangiomas grew a centimeter in 2 of three directions. That’s quite a bit of growth.

They are benign. They are vascular. They are growing. I am not. We are battling for space. I am stalling on the inevitable.

I know exactly where my spleen is. I can trace it at all times. It is not painful, but really annoying. I’m trying not to let it bother me. Its kind of like a friend who will soon be moving away, forever. I will miss it when its gone.

I’m used to surgeries that send me on my way in hours. This one seems a little more dicey.

The oncologist said, “It’s not cancer, so we’ll deal with it when you’re symptomatic…”

This week I met a new primary care doctor. She was fine. I’ll need her for pre operative clearance. Lesson learned during the February surgery debacle was to have a “primary” available. I have a great deal to teach her. Maybe she will want to learn. At least she will be able to complete necessary paperwork so someone can check their boxes.

Checkbox with green tick

She examined me, and then the area where my spleen is housed. She was confused as to why it is still in my body.

She had a suggestion for a doctor. I asked if she knew a surgeon. Her plan was to send me to a gastroenterologist to see who he thought I should go see.

Like I said, she’s got a lot to learn, and we don’t have time for unnecessary stops.

I found the surgeon I want to meet. I read all about 15 surgeons from 4 hospitals. I want to try him first.

I sent an email to my oncologist to see who she recommends. Not only was I not thrilled, I was more sure that I want to meet the one I picked out.

Last week the hospital that manages my care wanted me to see a genetic oncologist. I called for an appointment. They wanted my genetic testing. Then they told me I would see a counselor first. I explained there was no way I was spending time with someone who knew less about my disease than me so they could tell me about the effects of the diagnosis.

Nope. Double mastectomy. Hysterectomy. About ready to lose my spleen. Kid with 18 surgeries. I’ve got this. It’s relentless. I know. And I have no time to be told again.

So, the appointment I was requesting was with the “director” and there are “steps”.

Not to sound too arrogant, but I don’t need anyone I have to jump through hoops for.

I sent an appointment request on-line to the surgeon I want to meet. He deals with abdominal tumors all the time. Of course, not splenic lymphangiomas, being that this article says there are only 189 cases from 1939-2010! But, he spends his life operating in that area. He’ll be my guy.

From – http://www.archivesofpathology.org/doi/full/10.5858/arpa.2013-0656-RS?code=coap-site

And if he’s not – I’ll find another.

I’m not sure when, but I know in my heart it’s not if anymore. This has been the long goodbye for my spleen.

Now the plan is to get it all set up on my terms before it becomes a medical emergency.

Game on.

Tick tock.

I’ve got a really strong knot at the end of my rope. I’ll climb back up. Until then, I’ll just hang out right here…

#beatingcowdens

Future Doctor, Meghan

Published on August 20, 2013 by beatingcowdens9 Comments

If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body. She can troubleshoot what works for her. She can tell me what foods and medicines help her or hurt her. Every day she becomes more keenly in tune with herself. Its necessary. That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions. Those are the situations where doctors might miss something- even if they are trying. Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan. If you will listen. She will tell you. If you pay attention. You will understand.

If she hurts- the whole world might know. If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.

That’s it. Plain and simple.

So when she hurt her hand June 4th, I kept waiting for it to get better.

I played tough for a few days, but it still hurt.

Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.

Dr. Jill, our Physical Therapist kept saying, “I think it’s vascular.”

Meghan kept saying, “It pulses like my AVM.”

And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon. Each one finding a reason to dismiss her, and this pain that persisted.

Pain doesn’t persist. Not like this. Not with her.

And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated. You never know where those tumors may grow.

But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)

And, Meghan calmly told the vascular surgeon she thought it was an AVM. He said no.

As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.

You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.

“Look at this,” she said to me. “It has its own blood supply. That’s why it stops hurting when she puts pressure on that mass. She is cutting off the blood supply.”

Meghan would smile, knowing she was understood – at least by someone.

“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost mutter to herself.

And I knew if they were BOTH sure, then I was sure they were right.

I emailed her oncologist, and her genetecist. I sent them pictures. “Biopsy those,” I was told in no uncertain terms.

So Dr. Jill wrote a detailed professional letter to a local orthopedist. I am still not sure he understood all the words.

Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered. The MRI report was negative, his Xray was negative, and there was this bump below her middle finger. He sent us away – apologizing for not helping, but convinced there was no need for surgery.

That was the day Meghan coined the phrase “Donkey Butts!” And I couldn’t blame her.

I went right home from that visit and sent a desperate EMail to the oncologist again. This time I asked for a referral.

She is a woman of few words. Her reply was a link, and the words “Go here.”

So, I called and made an appointment. They took our out of network benefits. We got in the day before vacation.

He looked at Meghan. He talked to her. He sent her for more Xrays. They were negative. Then he looked at her hand again. He told her that he knows all about kids and how well they know their bodies. He told us he treats a few boys who grow bone instead of soft tissue tumors. He told her that the boys ALWAYS know where the problems are. She brightened.

Then he drew a very logical picture of the hand, and traced out the main ligament and tendon. He showed the connection from the soft tissue tumor to the painful wrist spot. He let her feel it, and he told her she made sense. She smiled a huge smile.

Finally a doctor who DIDN'T remind me of this one! — Finally a doctor who DIDN’T remind me of this one!

The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads. Clearly the tumor on her hand was causing trouble. Clearly it had to come out. Exactly what that would mean once he got in there would have to remain to be seen. Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.

Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand. Chronic pain is absolutely exhausting.

Today was the surgery.

We went to a LOVELY outpatient facility on 42nd Street. The place was clean, the reception was smooth and effortless.

The nurses were darling, every one of them.

The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.

The procedure lasted longer than I expected – almost an hour and a half.

I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”

A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!

So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,” and “THANK GOD FOR DR. JILL!”

I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done. I was also instantly tossed into a new level of worry. See, all along they have been insisting the AVM in the knee was an isolated incident. I shouldn’t worry about more cropping up. Well one just cropped up. Game changer.

I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it. Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM. The soft tissue tumor erupted some time later.

While the exact sequence of events doesn’t matter, a few things do.

Meghan and Dr. Jill are really intuitive.

AVMs can take place in multiple spots.

Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.

Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.

I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.

And, most importantly – NEVER DOUBT MEGHAN!