In the spirit of one day at a time… today she feels well.
Today homework is already done.
Today her stress level is low.
Today she swims in the water like the fish she longs to be.
Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.
Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.
Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.
No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.
We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….
One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.
Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.
The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.
The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.
Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…
And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.
And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.
Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.
Today. Today my girl feels good.
Today I will do as I have been taught and let tomorrow worry about itself.
I am dating myself I am sure, but the year I was to sit for the Chemistry Regents Exam in NYC, someone swiped the answers. The morning of the test they were published in the NY Post. I remember sitting in my high school cafeteria waiting to take the exam, only to find out it had been cancelled. You know thinking back on that story, I guess I understand now why I have never won the lottery. That was probably one of the “luckiest” thing to happen in my life. I never did have to take that exam.
Except now, 25 years later, I sit poring over a piece of paper full of words I don’t understand. I am brought back to the periodic table, and left to wonder if maybe I should have paid a bit more attention in class.
I have actively picked apart each of these levels since being handed the report on Thursday. I have read the descriptions of where this toxicity could have originated from. I have made the few moves I could understand, and the old aluminum cookware hit the recycle bag, and the new stainless steel – to supplement the few pieces we did have – arrives this week. The old cookie sheets are gone. Parchment paper replaces aluminum foil for cooking. But what about the other ones? What about the ones I can’t understand? Or worse, what about the ones like “gadolinium” that I CAN understand, but I just can’t fix?????
This printout is old now. The new urine sample was picked up Friday morning, and hopefully someone in a lab somewhere is generating lower numbers and shorter bars. But, I won’t know that for a few weeks. So I am left alone with my worries, and my thoughts, and my sick kid.
I suspect if Meghan could tell the world how she feels, this might be the sentiment. She is constantly conflicted with feeling like crap, and being pushed to keep on. She not only plays in pain – she smiles and laughs through it. And no one who sees her outside of this house would typically have any idea of the agony she endures each day. She works hard to hide it all. She has told me, in her very own words, that “no one would like me if I told them how I really felt all the time.” I would like to tell her she’s wrong, but she’s not.
And she is the bravest kid I know.
The sore throat started Friday, hours after the chelation, and exactly the same as last time. On Friday she pushed herself through gym class because she just wanted to be “normal.” By Friday afternoon she was shot – too wiped out to swim. She could barely swallow. By Saturday morning her nuscles ached along with her throat. No swimming Saturday either.
We barely left the house all weekend, except for a quick strep test Sunday that was negative.
The friends she wanted to invite over – postponed.
This was no coincidence. This was twice in a row she was knocked on her *ss after chelation. This was her immune system saying,” WHAT THE HECK WAS THAT?” To the toxic storm unleashed by the chelating agents. We have kept her well hydrated in hopes much could be excreted… but we will have to wait and see.
Early to bed Friday, Saturday, Sunday, Monday, Tuesday, and again tonight.
SHE HATES going to bed early – but has gone willingly.
She went home from school early today. No fever, but a clammy sweat. She just needs rest, and water, and rest.
The headache is ruthless. Even as some of the cold like symptoms start to subside, the headache does not want to quit. A week now. It leaves such a pit in my stomach I don’t want her out of my sight. I hate headaches. I especially hate wondering if the renegade toxins likely causing them are doing any other damage.
The doctor who last month said there was no way her symptoms were connected to the chelation recanted through an email today. He is now keeping tabs, giving me tips to keep her comfortable, keeping my resolve strong that this is necessary, and working on downward adjusting her dose for next time. More trips, more treatments… hopefully less misery.
I just can’t shake the image of a snow globe, and as we try to get the metals out we stir it all up. Some escapes, but the rest causes misery as it finds hiding spots again.
An in between it all life presses on. Laundry gets done. Bills get paid. Lessons get planned. Cars get exchanged. Files are kept. Clothes for the growing girl, are ordered. Floors get vacuumed, and washed, and vacuumed again. Groceries are purchased. Lists are made, and lost and remade. Tabs are kept on family and friends, and their health, and their struggles.
These are the every day tasks that keep me sane. On autopilot.
Dinners are missed. Meetings go unattended, Places I want to go – but, I just can’t right now.
You see I am having a battle with the Periodic Table of Elements, and I need to study. I am the front line.
So, I take my IONIX, and my t+chai, and I am thankful for energy and stamina to endure.
Maybe missing that regents wasn’t so “lucky” after all. So as I study some these next few weeks – please know we haven’t forgotten you. Our prayer list is long. We don’t want you to leave us out, or not to call. Don’t feel badly about overburdening us. We NEED to be in your lives. We WANT to be in your lives.
We are in touch enough to know that “Everybody has SOMETHING!”
Sorry if I got you too excited with the title. It’s really nothing too thrilling. It’s just – there’s more. There is always more.
I held the phone all day in hopes I would get the promised call from the rheumatologist today. Really I should know better. At this point I just want to know if I can raise this child’s medication. But, we will add that to the list of conversations for tomorrow.
Tomorrow – happening in just a few minutes. My how time does fly. And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today. We actually had a case of the giggles.
It started when I called about the car. The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.
Today’s report was that they are “at a standstill.”
WHAT? A work stoppage on my 7 month old car?? REALLY?
But they have to wait for authorization before they can ORDER any more parts.
AND, they are waiting for a “Field Mechanic” to come take a look.
How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,
At least they are on the same page as I am now.
Meghan and I HATE the rental. It smells, It shakes. It’s dusty.
But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.
Funny what can make us laugh.
We know each other really well Meghan and I. We are very “in tune” so to speak. I guess it’s a product of being together so often in so many precarious situations.
So as we walked up to swim practice again tonight she complained of pain in her neck. That was weird.
I touched it – checking for lymph nodes. Nothing obvious.
She swam the first 50 yards and looked weak. The coach motioned for me to come to the deck.
She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.
Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.
I stepped back from that level of determination. The coach agreed to let her swim if I was close by and we both watched.
She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.
Only ten minutes left in practice anyway, reluctantly she agreed.
And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.
That was it. She was talking and then all of a sudden she was telling me she was swallowing nails. She was pale.
It happens that fast. This isn’t so much the Cowden’s but the weak immune system. The IgG subclass deficiencies, the missing mannose binding lectin. From winning her heat, to flat on her butt. That fast.
So we drove home and she showered. We talked about the pros and cons of urgi care at dinner. We had the conversation more for something to talk about. We all knew she had to go.
So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions. He dove right in for the strep test. He dug into her throat and patiently watched for that second line to appear. And finally – close to the 5 minute time frame, he walked over and said to me “here it is.” Faint as anything, but it was there.
“Smart Mom, by tomorrow she would have been a mess.”
I know. I know, It’s that fast and that hard. If I wait – it gets ugly.
That’s the scoop on Strep Throat – from a family that has seen a lot of it. We thought we were rid of it when the tonsils left.
We forgot that Cowden’s patients can regrow their tonsils. So the tonsil tags forming again in the back of her throat are little disease mongers.
The first dose of antibiotic went in around 10. The second one will be tomorrow morning.
Tomorrow she was supposed to be at Bible School. Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.
I hope its quick.
She has PT at 1, and the orthopedist at 2:30.
No rest for the weary. Have to check on that hand.
beatingcowdens 