I needed today. For so many reasons.
Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.
We all slept. Late. All three of us. I mean 10:00. A good sign that we – all three- are shot.
I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk. And she was sensitive to the touch, so it was even hard to rub her. But everything is a little better at 10 AM.
And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills. I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.
And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.
Because we got home, and then Felix made lunch. I stayed home with Meghan and her “better but not gone” stomach pain.
After that he took the working car to get the wood for the deck railing that has completely rotted out.
No one can really explain that – but we are kind of used to it.
The deck – pressure treated wood – was put together between 2000 and 2004. By all accounts it is falling apart. And its not from faulty construction. The base is solid. The center is stable. But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting. Maybe it’s too much sun. Maybe it’s a stain product we used early in its life. It really doesn’t matter. It’s done and has to go on the budget list for a full replacement in the near future. But for now we patch.
The bay window wins. Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely. The entire window – hole in the house and all – needs to be replaced.
So while Felix was getting the wood, he priced the window Tonight we have to do some comparison work. Then the order has to go in.
But this afternoon I sat still. For a few hours. And I really, really, really liked it.
It’s easy to feel guilty. That there are things that need doing. There are people who could use our help. And there are people who need to be visited. And there are phone calls that need to be made. But, last week my Mom told me if I didn’t take some time for myself I might lose my mind. She’s right. Although I could say the same to her, and most people I know. It’s hard for any of us to just stop and sit still.
I haven’t written since Monday. The arrogance I encountered that day kept me stewing for most of the week. And… I don’t think I’m over it yet. But I wanted to pull my thoughts together and go at it with a clear head. But if I keep waiting for a clear head I may have to stop writing forever. Because the pain my child endures – regularly- is horrendous and worsening.
If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared. The good, the bad, and the arrogant.
A friend who endures more than her share of struggles with her children placed this on my wall this week. I can’t tell you how many times I laughed out loud.
Tuesday I called the surgeon’s office after school to inquire about the sonogram. He spoke to me – to tell me that there is absolutely nothing wrong with her neck.
Insert sigh of relief here, right?
So I said thank you, and requested a copy of the report. It was to be emailed to me within 10 minutes.
And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report. You see, the local sonogram bothered the surgeon. So when we went to have it done I watched the screen like the hawk I am. I watched every measurement, every angle for 30 minutes. I SAW the exact dimensions from the local sonogram recorded. And yet the report was the most incomplete one I have ever seen. It simply said “normal” several times. It was contained on one sheet of paper, unlike the three I had become used to.
I wanted to be relieved so badly. I wanted to take a breath and say “whew!”
But I feel the lump in her neck. And she feels it.
What I needed was a doctor to say, “It’s there and it’s fine.” THAT would have been OK. THAT would have settled me down. But, to say it’s NOT there…. THAT leaves me with a whole other set of unsettled nerves.
And then the phone rang. Again. And it was the surgeon’s office. His secretary told me we needed to go back for a follow up. I was stunned. And perplexed.
Why a follow up? He just told me everything was fine!
The doctor just wants to see her one more time before the summer.
This from the same surgeon who three visits ago NEVER wanted to see us again.
So I set the appointment for June 16th. And I wondered really what I am supposed to think.
So I got the number for medical records and I got a CD of that exam placed on CD.
I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.
And this isn’t even the pressing problem right now. Or at least we don’t think so.
The next set of thyroid labs are going to be next week. We need to see if this new dose is making ANY difference in her thyroid hormone. If it is, well great. And if it isn’t… someone needs to start figuring out what’s going on.
There is pain. All the time. Terrible pain. Worse when she wakes up. And, when she tries to walk, up the stairs. Or down. Or if she tries to lift something. Or bend to pet the dogs. Or run. She made it through 18 minutes of swim practice on Weds. Then I had to help her get dressed.
The pain varies in intensity. But it doesn’t leave. And she is frustrated. And frightened.
Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever. I can handle this pain a bit longer, but you NEED to help me. I CAN NOT do this forever.”
I get it Meg. I get it. I don’t really get your pain. But I get the urgency. I am all over it. Trust me.
But that kind of pressure will wipe you out.
The GI on Weds. was happy with her progress. The pathology showed cellular changes all through the GI tract. She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it. She gave us the “reflux” diet. She reviewed medication and supplements. She made sure I have an ENT appointment – for June 3rd. She things the upper esophageal damage is caused by a chronic post nasal drip. And maybe “fingers crossed,” that will be the throat clearing too. Because if not there is another diet – with more restrictions on the horizon. But we can’t race. We will see her in the beginning of July. We are clear on the directions. Especially the one that said, “no pain medicine by mouth.” The damage done by 4 years of NSAIDs will take months to reverse. If we are lucky. Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.
That doesn’t leave a whole lot of options.
So from 200mg a day of a strong NSAID to nothing…
I ordered some herbs. Some that have anti inflammatory properties. I have read and researched them and have sold them to her as the best thing since Celebrex. They will be here tomorrow. Let’s all pray I am right.
Some people think she exaggerates, because there are glimmers of smiles. There are times when she laughs. There are people who want her to feel better just because time has passed. Trust me no one wants this more than her parents.
I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all. We are isolated. Family and friends alike are often unaware of what to say, or do. We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear. We are lucky, fortunate, blessed, to have each other. We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.
I needed today. I did random things like taking the 5 gigs of pictures and video off the iPhone. I uploaded them to shutterfly. I combined them with the family photos and I placed the first print order since August of 2012. We are up to August of 2013 now. You see I used to be all over this kind of thing. But life… it gets in the way.
And the nicest part about today was looking at the memories. The smiles. The happy times in those photos. You see today I needed to be reminded…
And that is what today was about.
Because next week there is Field Day, with prayers that there can be mobility by then. And next week there is blood work. And next week there is swim practice, and so many things that we want to go very, very well.
Today, I needed today.
4 thoughts on ““Dear whatever doesn’t kill me, I’m strong enough now. Thanks.””
My daughter was dxd with CS last year after her 2nd surgery. (First was unexplained tumors in Thyroid causing unexplained growth to the point of feeling and seeing the huge growth necessitating its complete removal. This after many different Drs and appointments and evaluations and biopsies and speculations. We do have a lot in common. But for both of us, we have some differences which may be blessings to one or the other. My daughter has at least (4) yes 4 other diagnosed disesases.
sorry inadvertently pre maturly forwarded incomplete….
The last surgery was last year(On my Birthday) the removal of tumors from both breasts and at the same time “inconclusive” lesions on her tonsils and adnoids led to the removal as well. The complicated “other” medical issues for my daughter are 1) type 1 Diabetes..(here in itself a story of complications prior to diagnosos) 2) Rare blood/bleeding disorder Factor IV clotting factor disorder; 3) Dysautonomia…oh and not to leave out Asthma…anyway if your keeping up…yes after the breast tumors were removed (Non cancerous as was her Thyroid)…and the tonsils and adnoids..we were sent to see a geneticist at U Penn and after extensive blood work etc. were given the positive diagnosis of CS, or PTSEN /PTEN Gene mutation
we are currently awaiting an appointment with the Cleveland Clinic supposedly specialized studies/treatments.
You certainly have had a road! Keep us posted on your journey to Cleveland. All the best.