Monday, November 17, 2014

I just want a break.

A break.

It’s the only thing I’d like. A span of 3 months where I didn't worry about cancer, doctor’s appointments, surgeries, medicine, therapies or anything else but my kids, my husband, my dog, my home and my family. You know, those normal things people worry about- I’d like to worry about that. Apparently it’s too much to ask for.

The last time I left you, I was starting physical therapy for my hip metastases and a compression fracture in my spine. Getting a second opinion for a double mastectomy would be on hold for a couple months. Well, it’s going to be a lot longer than that now . .

Our dog started not doing so well after one of her shots in September. We had her to the vet every other day for weeks trying to figure out what was plaguing her. She started itching, became lethargic, was losing hair; we just couldn't figure out what was causing it and nothing was helping. After about 3 weeks, she was diagnosed with an immune disease which was causing her to not be able to control skin mites (which every dog, animal and human have). Thus causing a severe skin infection. For a month straight she needed doses of Benadryl, Pepcid (because she wouldn't eat) her antibiotics, her medication to treat the mites, and a bath every other day. She has gotten skin scrapes every 6 weeks along with new doses of medication, which causes neurological side effects. She won’t be deemed “cured” until it has been one year since her last clear skin scrape. We were finally able to get her scheduled for a spay that we had to put on hold because of her infection. She has been doing better lately, but the added stress of a dog with special needs was a lot to handle. 

As if the cancer and the dog weren't enough to make me crazy, I was also trying to figure out why it seemed that Stephen wasn't making any improvements with his speech. I’m going to skip over exactly how this came to be and get to point. We took Stephen down to the hospital for an evaluation, where we found out that he had a submucous cleft palate. The boy has had numerous doctors, therapists and specialists in his mouth since he was born and it took this guy all of 2 minutes to diagnosis him. Of all the times I felt like a horrible mother for putting my health first and not his, for blaming myself for him not making improvements, feeling wretched about him getting kicked out of therapy for not improving- it was all answered in one day and I realized: it wasn’t anything I’ve done. I didn’t fail him. The specialist said no matter what we would have or wouldn’t have done, he would have never made any improvements. In fact, since this was caught so late, therapy has had the reverse effect on him, actually making his speech worse. Now the problem lies in that Stephen only knows the incorrect way to produce sounds because he has compensated for so long trying to make the right ones. I just cried. I was happy to know and devastated at the same time. He will have surgery in January, which is a simple surgery. It’s the recovery that will be tough. He will be in the hospital for a little bit and on a liquid only diet for 2-3 weeks. Then he will move to a puree diet for 2-3 weeks, all while he is in arm braces so that he does not stick anything in his mouth. If he is cleared at a 3 month post op checkup then he will have to go in to intensive speech therapy- where he will have to re-learn how to speak all over again. His recovery time will be around 6+ months. Given our family history, and Stephen’s extensive list of different diagnoses, it was suggested that he be tested for a genetic mutation called 22Q Syndrome.  The deletion or duplication of the 22Q chromosome could be the result of over 200 varying disorders. Some children may only have a few, and some kids many. Given Shannon’s history of the heart and diaphragm defect, Stephen will need an echo-cardiogram to check his heart. We will have some baseline labs drawn and then he will meet with a genetic team in January to discuss the syndrome and have a special panel drawn to check for chromosomal abnormalities. If this is what he does have, then it means a long road ahead of us. 



I have been so busy scheduling appointments for Stephen that I have been working on this blog post for over a month. I waited so long in fact, that it seemed that more things just piled on top. Steve had been having a lot pf pain in his knee for a while and I finally made him an appointment to go get checked out. Yeah- he has a fractured fibula and torn meniscus and ACL. He is in a brace and off work now for 7 weeks. He has surgery tomorrow.

Did I mention Molly has surgery Thursday? Oh and SJ's echo-cardiogram down at Children’s at the crack of dawn the same day. Aandddd I got a call from my Endroconologist that said I was in menopause. Dude, I’m 30. And menopause sucks. This all sucks.

Everybody says “You’ll be fine”, “This will pass”, and “You’re strong”. I know all those things. However, don’t you think it’s a bit much? I am losing my damned mind! Literally losing my mind- I lost my car keys a couple weeks ago and had a complete meltdown like a 2 year old's temper tantrum.


I just want a break. I’m not sure why this has been the icing on the cake for me thus far, but I have a lot of questions that I normally didn’t care to understand. I don’t understanding suffering or grief. I don’t understand why some go their whole lives with no tragedy and others, like myself, are modern day Jobs. I can handle one thing at a time but not twenty. I am finding myself slipping back in to a depression. There is so much going on. Too much. It’s hard to remember things. It’s hard to enjoy things. It’s hard to get motivated. It's just hard to live.


There’s oncologists in Hawaii, right? I want to take a break there.




9 comments:

  1. Have you read my latest blog "Where God Has Me?" I, too, am asking for the same things as I feel hard pressed on every side. And all of the "generic" responses to my struggles, well, I'm just not there yet. I understand and it DOES suck. I love you and pray for you every day! <3 xoxoxo

    ReplyDelete
    Replies
    1. I haven't but I am going to right now. Love you, girl.

      Delete
  2. Ahhhh Kate, I'm so sorry. It completely resonated with me when you mentioned how some people go their whole lives without tragedy, and others are bombarded with one thing after another. I'm sorry about everything going on with your family and with you. It's all complete shit! My hubby had a torn meniscus and loose bodies between his joint and required surgery the same day when I was having stereotactic radiosurgery. All I could think was out of 365days in a year everything has to happen at once!!! All I can say is I'm sorry for all this crap you don't deserve, but remember you have lots of supporters who have your back. Hugs:)

    ReplyDelete
  3. Hi Kate,
    You sure do deserve a break! I wish I had a magic wand. I wish I could do something to help. I wish I had some answers. I wish I had some words of wisdom to pass along. All I can do is say I'm sorry and tell you that I care. I'll keep you and your family in my thoughts. Hugs to you.

    ReplyDelete
  4. Yes, you soooo deserve a break, Kate. You have more on your plate than anyone should have to handle. I hope you get a chance to just stop worrying about everyone/thing else and get to focus on yourself, and relax a little bit. I'm sending love and strength your way. xo

    ReplyDelete
  5. Oy! When it rains it pours! *hugs* May the sunshine come out soon!

    ReplyDelete