Ohhh where do I begin? This is going to sound foolish, but I'm going to begin on the first day of December. If I had time, I'd update every week if necessary, but I don't have the time. I mean, if someone gave me the time, I'd use it!
So basically why no time? The time has gone mostly to my parents…taking my mom to doctor's appointments almost twice a week, going shopping for them once a week, doing cleaning around their house for about 4 hours 3 times a week, organizing their medicine, making what seems like endless calls about doctors, meds, tests, money, insurance, etc. And then of course me…migraines and just generally feeling ill. On my "days off," I don't really feel like I have days off because I spend them in pain, asleep in a dark room, not even getting to "enjoy" the day most of the time. Once in a while I'll feel okay, but I'm not the type of person who likes going out a lot, so when I spend the days running errands and such for my parents, on my days off I end up staying home on the computer or watching T.V. It's like, the day after I spend out doing things for my parents, the next day I am wiped out. Sometimes I feel somewhat ill, and sometimes I just don't feel like going out. And I get tired a lot. So I end up sleeping in and not getting done what should get done, and/or taking a nap as well. I've been sleeping WAY too much lately, and not eating enough. Okay, enough complaining, I just wanted to kind of give you an idea of what a typical week is like and why I am writing this know at almost 11pm (now it's almost midnight as I'm proofreading this) after a long, busy day…because I want to write it before 2008!!!
December started as a real shocker. As those of you have read know, my mom changed doctors. Her first appointment was December 4th. This doctor is awesome by the way. VERY thorough, and also very nice. The first appointment was 30 MINUTES LONG!!! Now you all know that's long for a doctor's appointment! The doctor was going over some past test results that she found in the computer, ones that her former doctor had ordered. She was just reading off the results, and she said, I see here that you have an abdominal aneurysm, some ovarian cysts, a hemangioma in your liver (which she said is a cluster of benign blood vessels in the liver), your cholesterol is high, your calcium is high. My mom and I sat there with our eyes open and our jaw dropped. So her former doctor had these tests ran I don't know how long ago and we are JUST NOW getting these results? All this time when we called or received calls asking about the results and were told they came back fine, THESE were really the results??? This was NUTS!!!
So over the next month, my mom has and had the following tests: Bone density (which revealed that she has osteoporosis, which we knew), blood tests which showed her calcium and cholesterol are high, back x-rays, which showed that she has 2 more broken bones in the middle of her vertebrae; so 5 in the lower, and 2 in the middle, Pelvic Ultrasound, which revealed that the cysts on her ovaries are benign. The next one she has coming up is an abdominal ultrasound next week and more blood tests. Next month she will have a mammogram and an MRI.
And then when you thought things were bad…I have talked before about her hyperparathyroidism (for info click here, here, and here). When she was in the hospital and nursing and rehabilitation center, she was on a med called Sensipar. This med basically kept her calcium low. Hyperparathyroidism makes the body secrete too much calcium into the bloodstream and causes all sorts of problems. The initial plan was to have part of the parathyroid removed. We were all so scared about this. When she got out of the nursing and rehab facility she was taken off Sensipar. We called her then-PCP and asked why, and he said it was better if she took it under the care of her endocrinologist. We called him, and he said if she went off of it, her calcium would go back up…he misunderstood my question…I was asking if she could STAY on it. His receptionist called back and said it was not covered by insurance and that's why she was taken off of it.
The next thing we did was see her ear, nose, and throat specialist. He told us again about the risks of surgery. And remember that in the x-ray he had run on my mom's parathyroid, it was not visible on the x-ray, so the surgeon would have to "look around" for it. He said the surgeon might not be able to find it, meaning there would be chance that he not could not remove it and the surgery would be unsuccessful, risks and complications or not. Anyway, the risks scared us so much that instead of trying to relay to you what he told us, I had to find a website that had the best description of the risks that matched his and post it here:
Most surgery nowadays is safe however any operation has general risks including reactions to the anesthetic, chest infections, blood clots, heart and circulation problems, and wound infection. In addition there are specific risks associated with parathyroid surgery as follows:
- Post-operative bleeding may cause swelling in the throat and difficulty breathing due to pressure on the windpipe. It is usually fixed by a further operation to remove the blood clot
- Injury to the laryngeal nerves may cause hoarseness of the voice. This is usually temporary, but may be permanent in up to 1 to 2% of cases. It may improve with speech therapy or further surgery to the vocal cords. If you are a singer or public speaker, any surgery to the thyroid may cause subtle long-term changes to your performing voice.
- Injury to the other parathyroid glands may cause the calcium level in the blood to drop. It is treated with calcium and vitamin D tablets and usually comes good in a few weeks.
- A keloid, or overgrowth of scar tissue, may form in any surgical scar. It will result in a tender, pink raised scar but may able to be treated with silicone gel tapes or steroid injections
- Even in the most expert hands, up to 5% of parathyroid tumors cannot be found at operation and the calcium will remain raised (persistent hyperparathyroidism). Sometimes after successful surgery, one of the other parathyroid glands may also then become overactive and cause the calcium to be raised again (recurrent hyperparathyroidism)
Oh that's not too scary at all, is it? So we talked to the ENT about Sensipar as well. He said that if my mom was a young patient, he'd recommend the surgery because otherwise, the patient would be taking the med the rest of his/her life. But for an older patient, maybe the med would be the way to go. As the endo told us, it is not covered by insurance, but if we wanted to pay out of pocket, we could pick that way. He recommended calling around different pharmacies to see what their rates were.
So that's what I did. Man this med is expensive. Ironically, the most inexpensive one cost the same as ONE day of having a caretaker come to help my mom. So we decided to take my mom down to THREE days and put her on the med. We thought it must be fate, even though I don't believe in that bullshit.
I called her endo back and let the receptionist know that we would like to start my mom on Sensipar. The receptionist called back and told us that the endo said it was not covered by insurance and not approved by the FDA for her condition. I told her that we arranged a way to pay for it. I asked her if he would still allow her to take it, even if it was not covered by the FDA. She said she'd call back. So, she called back and told me that the endo said the as discussed, his only recommendation was surgery. So what IS Sensipar covered for by the FDA? Patients who have cancer along with hyperparathyroidism, and patients who are on dialysis and have hyperparathyroidism. So yeah, we could wait until my mom's OTHER kidney fails, until she has to go on dialysis, and THEN she could be on Sensipar. How about we do that?
One of the hardest calls I had to make was to my mom, telling her that surgery was her only option. We were so hoping that she would just have to take this expensive pill once a day and could skip this surgery, because she's already not in the greatest health. And during that time, both the endo and the ENT (granted, the ENT doesn't know much about endocrinology meds) seemed to be telling us that we could choose between the surgery and the medication. I mean, from what I wrote, doesn't it sound like that? So what do we do? Do we let my mom get worse? Or does she have this surgery, with all of these risks, one involving dying, which of course is what comes with any surgery. This surgery, if successful, could prolong her life. NOT having the surgery could DEFINITELY shorten her life. DEFINITELY. Could having the surgery shorten her life anyway? Or only lengthen it by a year? Or make her quality of life worse? What do we do?
So this has been my holiday season. If you wanna go all the way back to the beginning of this blog, you'll see that my last year's holiday season was not much different. My mom was in pain and agony during the holidays, she didn't have a Christmas; it was the first one I didn't spend with her. In January she ended up in the hospital having a huge leg abscess drained as well as her gall bladder and one kidney removed. She weighed 97 pounds. All of this was also due to her parathyroid. We should have gotten that SOB taken out years ago. It was detected quite a while ago (maybe no more than 3 years ago?) and was kept "watch" on, and then…just other things got in the way, long story. But last Jan., they knew her calcium level was high and the parathyroid tumor was there and I don't understand why they didn't take it out while she was in the hospital for 2 months. Really, there's A LOT to this story and if you get REALLY bored, this ordeal that my mom went through is what started my blog.
It gets really hard taking care of my parents, especially my mom, (just because she requires more of me) day by day. And I admit I probably neglect my dad a lot. He honestly just gets on my last nerve. But I feel like…I still just feel like I don't take good enough care of her, like I'm selfish and I don't try hard enough or do enough. There are days when I don't want to go over there at all. Days when I don't want to get out of bed and go, when there is nothing physically wrong with me except that I'm tired, so I oversleep, and the later it gets, the later I have to stay. There are days when I battle with my fucking migraines…or even over a whole WEEK, when I feel so guilty. I feel like I should go anyway. They have a bed (my dad has his own room and then my mom sleeps in my old room and the master bedroom no longer has a bed so technically I'd have to lie on my mom's bed for a bit or on the couch) so I could take breaks, right? Migraines are just…I need to be alone when I have them.
Anyway so this is what we're facing now. I don't want to be all gloom and doom, because what good is crying and all of this going to do? Is it going to help us make a decision? Is it going to make my mom better? Is it going to make any of us FEEL better? No. Yeah I say that but you know I'm gonna do it anyway. It's so hard not to think about and move on. It's so hard not to dwell on it and get away from that "why me" syndrome. But really, WHY US? WHAT DID WE DO??? Since November 2005 it's been this, on and off, but mostly on, ya know?
I don't want to end this way. I will end with good news. My mom is doing well for the most part, but it seems as if her pain meds are not helping as much as they were. She is also having some strange symptoms that I think could be related to the hyperparathyroidism, and is something I am going to be researching. I do think she is heading toward surgery. As scared as I am and she is about it, we have to do what's best for her.
But on the bright side, she "graduated" from home physical therapy and is going to start outpatient therapy as soon as I can find one that is covered by her insurance. She is not functional enough for high-level therapy but the outpatient therapy has different levels so she will be in a lower level. Nevertheless, this means she is doing better in terms of getting around. I do worry that with her more persistent pain lately, it is harder for her to do her daily exercises and/or she is not doing them. I really feel like I should be more active in that with her. I said I was going to do that last time and I said that again this time and I should. She also "graduated" to a new kind of walker. It has 4 wheels instead of the typical 2 in the front and two posts on the back, and a seat if she needs to sit down and rest. She uses it when she goes out (which is not very often) because it takes up too much room in the house. I also worry that she pushes herself too hard sometimes.
So she is making some progress and I'm trying to think positively. Please everyone…err…umm…my two readers…send positive thoughts and I welcome any ideas. My mom is the best-hearted, sweetest, most wonderful person in the world, and anyone who had her for a mom would be so, SO lucky. How did I get so lucky? I will be forever grateful that she is my mom. For this I am going to be selfish and hang on to her as long as I can. She is MY MOMMY and I am going to KEEP HER!!!
No comments:
Post a Comment