Yes, I'm Alive! But...
Life Shouldn't Be This Difficult!
I know it's been awhile since my last post. Things have just been too screwed up and I've been way too tired. I just sit down and I'm out like a light. Something I used to watch my grandfather do and wondered, "How does he do that?"
I am beginning to test the waters in the food department. It's not pleasant. Since my last operation the major pain has subsided. I still get these sharp shooting pains, but I'm no longer biting the tongue flap. Dr. Hanasano did a great job! I still think there is a bit too much skin left in there, but I have a noticeable difference in my chewing ability and even slightly better speech. The biggest obstacle is the difficulty with the movement of food using my tongue.
Flavor is diminished and the texture of food is different, perhaps because there is significantly less saliva to work with. I was told it could take up to a year before that returns, IF it returns. The salivary glands were compromised during surgery and radiation. To give you an idea...I had a craving for a cheese cracker. Well...just think about eating cheese flavored dirt. The taste wasn't bad, but the texture was less than desirable. It took over 15 minutes to finish just one. It was just too dry in my mouth and I was unable to move it around. Sadly I gave up and washed it out with water.
The other day I found a can of Chunky Honey Ham Soup. The flavor was good. The carrots and celery were soft, but the ham was the size of a bullion cube and extremely dry. The ham was the hardest part. I threw the ham chunks out. To be fair, I think if the ham was juicier I might have had greater success.
So much has happened since my last visit to MD Anderson. It seems everything around the house wants to break down. I think it's because I have neglected EVERYTHING in the last year and a half. After all, I've been slightly preoccupied with tongue cancer. I know that's not a very good excuse. I guess I'm just lazy! The world keeps on turning even when you don't!
In the last month I had to replace a car window motor, the car battery, the air conditioning in my car cut out, the bathroom sink began leaking in the cabinet below, the garbage disposal spits stuff back at me, the belt on my vacuum wore out and stopped picking things up (like I really care at this point) and then the pool pump went out! I'm so looking forward to next month!
Then to add even more stress to this wonderful month, my 79 year old mother fell and hurt herself badly. She fractured bones in her face, broke her nose, fractured her shoulder and broke her arm. She was alone in her home when Judy, the mail lady found her. She always hands mom the mail everyday and when mom didn't come to the door, Judy came in looking for mom. She found my mother passed out on the floor with her walker by her side and comforter in tow. She then called EMS. EMS is on speed dial to give you an idea of how often mom ends up in the hospital.
I was her caregiver until cancer consumed my life. Then I found I was unable to care for her. I tried to get her to go into an assisted living facility, but she wanted NOTHING to do with it and opted to live in her own home alone.
For those of you who don't know my mom, she has been in very bad health for more years than I can remember. She has fallen on numerous occasions, but has never hurt anything but her pride.
A few years ago she fell in my rear bathroom while changing her colostomy bag. She hit the floor and couldn't get up....Yes I know..."I've fallen and I can't get up!" FOR REAL. I could not hear her calling me, so she lay on the stone floor for over an hour before I found her. Do you think she was wearing the med-alert pendant I bought for her?? One guess...go ahead ...guess.
I was unable to pick her up by myself and she has no strength to help. That's because she won't do the exercises her physical therapist directed her to do. While my weak, lazy, forgetful mother lay on the cold, hard floor, next to the toilet, I called EMS to help get her up and check her over.
Since it wasn't an emergency, they quoted an hour wait. So, I made mom some lunch. That afternoon she dinned on a grilled cheese sandwich garnished with a dill pickle, sprawled out on her back at my world famous "Chez Toilot" complete with a bottomless bowl of water! We had a pretty good laugh over it and thankfully she wasn't even bruised.
I can count 5 times, that I can remember, when she has fallen and not hurt herself, all with her med-alert nowhere in site! But this month she made up for it. She was in ICU for 3 days, then moved to a hospital room, and now resides in a rehab center where she will probably stay for months.
She's is HEAVILY medicated by morphine. My mother has always been a pain med junkie, so I'm sure she's happy for now. She wants to go home after this, but I think it's time she come to her senses and opt for somewhere she can be taken good care of. Living alone at her age should not be an option with her health issues. Since my step dad died over six years ago she's been under my care, but I just can't do it anymore.
If I had brothers and sisters to help, it might be less stressful for me, but mom cut dad's supply off after I was born saying, "No More!" Even though dad wanted at least 3 children, the toy store was closed. I've told her, now she'll regret being so selfish with her toys!
As if this all that hasn't been enough, I'm receiving bills for my nutritional supplies. BIG ONES! I'm having enough trouble paying the bills I actually owe, but these bills should be covered by my insurance.
From what I understand, the supplier of my nutritional supplements is billing my insurance company for "in home surgery" which I am not covered for. Why do they even have such a category? When was the last time a doctor went to someones home to perform surgery... on a monthly basis?
After spending hours on the phone with both parties, I've been told I should only be billed for my co-pay and not to worry. With the way things are going I know this will carry on for months until I'm sent to collections for nonpayment of thousands of dollars I don't owe!
Having an illness shouldn't be this difficult! CORRECTION....LIFE shouldn't be this difficult!
Peace
B
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