I drove myself to my annual female appointment today and with reasonable ease. Driving was just fine. Walking is slow, but that is my new normal. I also stopped by Walmart and Price Chopper on the way home.
All in all, I think a very accomplished day. I did much better than I even anticipated.
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I’ve been out of communication for a few days, as lightning hit my phone line. Anyway, had my first official Home Health Physical Therapist visit yesterday. Dennis gave me some good exercises and will be back Monday. He’s nice, but I don’t care for his style a lot. I feel bad because he was very very nice. I just don’t think I will need him around as long. I think these people sometimes ‘fish’ for customers, too. The girls seemed to think I wouldn’t need him around much either.
Once he finds out I’m driving myself to doctor appointments, it’ll disqualify me from Home Services anyway. I’ll have to be driving myself real soon, so it will sort itself out.
Today was a good day, yesterday was a bit of a punk day. I’m learning to keep hope. I could have got discouraged yesterday. Today once I got up I felt so much better Plus I have been doing the prescribed exercises and it’s helping. The more I gain strength the stronger I will feel in all ways. I know one has to make things happen; they just don’t happen. I can not lay around and expect to get stronger. Although my pets don’t allow me to lay around, I have to do the consistent exercising though.
Dennis said that one should be constantly moving/exercising 10-15 minutes of every waking hour. It could be some light leg movements while sitting and watching TV even. That is not a bad goal I do not think, the 10-15 minutes. From what strength I feel I’ve gained already, it is encouraging to think if I attempt that schedule as much as possible, how much stronger I will become.
This is a rambling entry, I know. Just trying to show that one must not give up. One must TRY. One must find hope in each little success and victory no matter how small they may seem. I’ve had just two days since I’ve been home that I was just a wee bit discouraged. I’ve had two days in which I felt a bit more than a wee bit encouraged!! I think it’s important to focus on the progress. And if I ask myself ‘am I better off than my first day home?’, it’s a definite ‘yes.’
My numbness is intense, I will say that. But I haven’t finished all my treatment yet. There may be different medicines that the neurologist can prescribe that will help with this discomfort. Plus, time will change things one way or the other. Actually, if nerves take so long to heal, who’s to say some of this may still be from my neck area and will improve? The body is a very complicated machine.
I have my annual female appointment tomorrow in which I’m going to attempt to go to by myself. It’s an easy drive and I will be curious how it goes. I feel up to it . And, if I don’t, I won’t go. Period.
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In response to the question regarding testing for Amyloidosis, I can only give my very uneducated and inexperienced response. Right off I would say that it is not a necessary routine test when one has Myeloma. What I have read of it, it can be a secondary complication of Myeloma. I don’t know how common it is.
Amyloidosis is an “umbrella term” that describes diseases caused by abnormal deposits in the body of the protein amyloid. I got that from googling Amyloidosis from something called “Better Health Channel” fact sheet.
I think I am being tested due to my current symptoms of numbness and loss of function. I do not have all of the symptoms as a person with Amyloidosis in that I don’t have swelling in my tongue or real dizziness when suddenly getting up and maybe a few other symptoms. I do have symptoms of muscular weakness, pins & needles and numbness in extremeties, etc.
Since the doctors are still trying to figure this out, it was just one more test to eliminate. As I’ve stated with me, I am being diagnosed by process of elimination of things. I have been told that my situation is complicated. I don’t doubt that.
So, unless one is having severe numbness, tingling, loss of mobility in extremeties, I’d say don’t worry about this test.
Of course, that is my humble opinion.
Oh ya, I was told it takes about 3-4 days to get the results. I had the test last Wednesday, so I’m thinking the results should be in any day. I imagine I’ll either hear from the doctor if it’s positive. My next appointment with Dr. D. (oncologist) is next Tuesday anyway.
Today is Day #4 since being home from the hospital. I must say I do feel some increased strength. I showered, in which I do every day, but it still is an accomplishment. What I did that surprised me really was empty the trash and put wild bird feed out. It surprised me that I not only attempted it, but I succeeded!
I also paid bills today. I need to get more milk and mail a bill. In the next few hours I will attempt this. I’m no weaker than I was, really, just before I went on that vacation. I should be able to do this. The store is within 4 miles, country roads. Piece of cake.
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I was in the hospital from 5/18/08 and discharged 5/30/08, Friday night. Though I had numerous tests, etc., my diagnosis is more of a diagnosis of eliminating things. I have a spot on my T8 where I had readiation therapy in 12/05 for a lesion (tumor). I had kyphoplasty on it 4/06. There does not appear to be any live myeloma going on; it appears to be dead spinal cord tissue, dead nerves. The area from my T2-T10 showed some difference since my last MRI, I think in the fall of 2007. They say this kind of damage can occur about 18-24 months after radiation. I must be in that small percent.
The MRI I had Thursday before leaving, did show a decrease in edema (swelling) in the area of my spinal cord. Unfortunately, it hasn’t given me any better sensation. This numbness is maddening. I can feel from my waist down, but my toes feel like they are alseep and touching each other. They hurt. I can stand the tingly feeling in my legs, but the numbness in my hips and private parts is also so very uncomfortable.
I’m back on steroids for a while, so I’ll be battling the weakness to leg muscle they bring. But still, being home now and having to do laundry, take care of the pets, etc., will have to help me maintain if not regain some strength. I’ve been laid up in the hospital for nearly 2 weeks and then the week before that on a trip where I couldn’t really do much. So I have to improve.
Tomorrow a Home Health Rehabilitation like person will come here to assess what I need as far as getting around. Deep down I know I’ll learn to adjust. I think I’ll even improve some. It will just take patience, trust, perseverence, hope, try, and time. I keep reminding myself there are those who have it worse I can at least move yet. I can feel, though it’s weird. I can. I can. It’s not the cancer, so far anyway. Is it sick to say that I have found myself a few times just wish it were the cancer and would take me? I think that for moments only. It’s just such a fight sometimes and there’s so much to it. So many people have to help me. It’s just complicated at times.
But it’s early. I’m not down, though it might sound it a bit. I’m just expressing honest thoughts that anyone in my place would think.
Yesterday was my first day home and I did lots of laundry and got my home back in order. Today I’m relaxing in bed.
I’m on watch & wait to make sure this numbness plateaus and doesn’t get any worse. The doctor said that may take several months to just watch. I did have that “fat pad” test Thursday checking for Amyloidosis. I doubt it’s that, but it’s just one more thing to eliminate.
That’s it for now.
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Filed under: Multiple Myeloma
It’s Memorial Day Monday, so things are low key around the hospital. I’ve had 3 separate visits from doctors this morning, but still no real answers. They are leaning toward it not being cancer (Myeloma) but rather dead nerves in my T8. This is probably delayed reaction from the radiation therapy on the tumor I had on my T8 in 12/05. Radiation was performed on my T7, T8, and T9, but the spot is only in my cord parallel to my T8.
The final say will most likely be the neurologist’s diagnosis. I will have another MRI in the next few days to see if there’s been any changes since the last MRI several days ago. Plus, I’m still having the “fat pad” test for Amyloidosis tomorrow, just to be thorough.
At first I was hoping this was the Myeloma, thinking it could be treated and I’d get my feeling back. But, maybe it’s just as well that it’s not cancer, but nerve damage. It could be worse I suppose. I can still see, talk, hear, and even walk though unsteady. Lots of things can still improve and I’m more functional than many people all.
I would advise others, and so myself, to focus on what I can do versus on what I can not do.
More news as it comes.
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Since I last wrote here, I went on a vacation to North Captiva Island, Florida, courtesy of Doris, sister. Her five grown children and their families also attended. Great memories and lots of love were experienced. I am happy for that.
However, I was very uncomfortable and the trip home on the plane was just horrid. I was gone from 5/10/08 to 5/17/08 (Saturday to Saturday). I returned home late Saturday but my Sunday, next day, Joy (sis next door) drove me to KU Hospital Emergency room and Adam (son living in town) met us there.
Due to numbness, Doctor admitted me and I’ve been here ever since. I’ve had several tests and while we’re getting closer as to why I’m numb from the waste down, in private parts and legs/toes, nothing is conclusive.
The thought is that the culprit is the spot in my spinal cord next to my T8 vertebrate. I had tumor (myeloma) there in 12/05. We got the records from the Hospital it took place and found the radiation was done on T7, T8, and T9….but the spot is only at the T8. Doctors feel my symptoms coincide with necrosis…nerve/tissue death. Radiation can do this, but it’s usually within 18 months. It’s been just over 2 years. Also, it’s only on one spot and not the whole area of radiation.
It could be the myeloma, a tumor. But perplexing is the fact my markers (m-spike) are low enough and seemingly in a reasonable, nonconcerning level right now.
I’ve had a LP (lumbar perforation) where fluid is removed from the spinal cord. It doesn’t really show anything. I’ve had a Myelogram, where fluid is put into the spinal cord. This was to check out neck area to ensure the neck operation did not do this or make it worse. Doctors do not think so. Today I had a PetScan but don’t know the results yet. This should be telling, as it should show hot/cold spots. If that T8 area spot is “hot” it would indicate activity..a tumor. If it is “cold” it would indicate “dead tissue.” The PetScan was from like T4-T11 if I recall. I don’t know how far T’s go, but it was lower than the 3 T’s that the radiation was performed on.
Dead tissue would be bad in that it means my numbness is here to stay. All they could do is perhaps give me more meds to cope with the discomfort.
A cancer tumor would be good in a way, because once its killed, then the numbness would most likely go away. Yesterday they started me on dexamethasone (steroid) through IV. Typically if it’s cancer it will relieve symtoms after a few treatment or possibly it could take 2-3 weeks. As of 24 hours, I haven’t felt any improvement. I’m praying, in a way, that this is cancer and that the steroids kill it…and that will be that…at least for a while.
I don’t like the idea of having to cowgirl up and cope with this numbness. Just my like. I will survive this cancer but be numb and crippled. I am kicking in my faith and a postive attitude, but still….who wants to have to try so hard to cope. Just as I start to feel sorry for myself and feel weak, I will see children with cancer and worse than me…coming out of the shoot fighting it. Or, I will see a person with someone so much worse than me. Then I get happy and content real fast…well…soon after anyway. Romans 8:28. John 9.
So far I have another LP to see any difference since starting on steroids. Also, will have a “fat pad” test for ‘amyloidosis.’ Doubt it’s that since I don’t have the swollen tongue, but Dr. D. is going to have it done “Inpatient” anyway just to cover all ends. As stated earlier, the PetScan results should be telling.
I’m in excelent hands. I’ve gone through 3 different IV’s, two if which took 3 sticks to get. I get blood drawn every morning at 6AM. One day I had additional viles in the middle of the day. I hate needles, but I’ve survived.
Kansas University Hospital (KU) is a “doctors teaching doctors” kind of hospital, so while you seem to repeat your story alot and sometimes go through repeated pokes and prods, you know you’re being thoroughly reviewed.
I will be here through the weekend for sure. I’m anticipating I’ll be going home mid-week next week. I don’t think they’ll discharge me until either they feel good with the diagnosis and treatment OR if I at least would start improving as far as that numbness. They feel that numbness is serious…and so do I.
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Doctor confirmed I’m healing fine. He’s still a bit perplexed by all my numbness. I am, too. I do believe there’s something pinching somewhere that is causing me all this pain and discomfort. It’s going to take time and patience to see how much of this will go away. Still, it’s difficult to sit back and wait, especially when this healing can takes months, possibly years. Nerves, I understand, take 30 days to heal 2 cm (that’s lesst than an inch).
I see both my primary physician and my oncologist next week. I need to practice describing my symptoms clearly and completely so that they can help me, or the very least know what kind of doctor to refer me to for diagnosis. I can not continue with this pain, weirdness, and most of all…the immobility creeping up on me. I can hardly walk. Something is going on and it’s wrong. But…….how long do I wait for healing from this neck operation before I pursue this other? I think I’ll let the doctor decide…but which doctor? Guess all I can do is play it by ear….as I talk to each of my doctors this week. The orthopedic doctor really wasn’t definite about what to do. He said there’s so many variables and that you really can’t know exactly what will heal. He was sure some of my numbness was from my neck and some was from peripheral neuropathy (from medicines). We just don’t know how much will heal or how long it will take.
I still just think something else is pinching, like in my hips somewhere, that is causing this. He didn’t think so, and he is the doctor. I don’t know how the body works, but I just know something is wrong. I think it’s something in my lower back/hips. I’ll have a better plan after next week.
I’m scheduled to go on vacation with my sister May 10-17. It’s tough trying to live life, make memories, and yet try to figure out this weird thing going on…..
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The surgery went great. My right leg is still numb, though at times feels less numb. My throat is a bit sore yet due to hwo they have to move things to work on the back of your neck. They plut about a 3 inch incision in the front of your neck and work on your neck that way. It’s really not too bad.
I was discharged the very nest day.
I have a follow-up appointment 4/24/08. I must wear the neck thing for 6 weeks.
I’ve had lots of support. All is well.
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I saw the orthopedic/neurological doctor yesterday regarding my neck. I’ve got some pretty severe damage between my C5 & C6 vertebrate in my neck. I need an operation in order to prevent further damage. There might be some improvement regarding my current symptoms of weakness, numbness, and pain, but it’s hard to tell until afterward. For sure, no further damage will occur.
There’s no visible or very little space in my spinal cord at that area (C5 C6). In the past few days I’ve been experiencing constant numbness in both legs, but more on my right. I want to get this over with soon for many reasons, but one being I want it behind me before I go on vacation. As fast as new symptoms are arising, I want to get this overwith before it progresses. I’m praying that I can reverse some of the symptoms I’m currently experiencing.
I see the dreaded Dr. D Tuesday and should have results from my blood work. I’ll bring a 24-hour urine in that day, so won’t know the results for it until later. I just pray my lab doesn’t show an increase in my M-spike. I’m wanting a break so that I can try some alternative treatments and positive thinking.
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In my previous entry I complained that the nurse never returned my call. I found out later that she’d written down the wrong phone number. So, she called me back all right, she just called the wrong number.
In the meantime, I had got very ill with that sinus infection and spent a full week in bed. I’m better now though still suffering some affects. Much better, though.
No doctor appointments until 4/3 & 4/8. This has been a wonderful break.
I’m keeping positive thoughts.
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