23 posts tagged “myeloma”
Mental and Physical Therapy
There are things happening in my life this week that have been quite the work out for my heart and soul. All I can say is 'ouch', and please wake me up when December ends. Say a pray or think a good thought. My son and I need them to get my family out of the mess I got us into through some ineffective decision making.
All I can say is thank goodness for my friends. They are truly a miracle on any day of the year. They make me laugh and realize I can do this. Or if I can't do myself then I don't have to do it alone.
Every Christmas someone, or something that has happened that I term 'the holiday miracle'. It can be as simple as a friend calling me to tell me that their car started on a really cold day, to a friend giving me the perfect pair of earrings, to someone just smiling and being kind to me, it's always something unexpected and it's always something that I remember. This year I have to think it was the miracle of love of my friends that got me through my rough times with the surgeries and hospitalizations. When I was lonely or scared there were so many people and so many things that helped me through. I am so grateful for that. So thanks to everyone...including Eddie, Ruth, Tegan, Lisa, Bonnie, Dan, Janet G, Bob and Edith, Janet S., Joyce and Suzanne, Russ and Charlene, JV and Linn, Catherine, Jeff and Kim, Bryan and Shelly, The Hammers, my sister , my brother and my bro in law. Even all my devoted Facebook correspondents who tried to keep entertained with funny things. All of these people really helped me in many ways to survive this thing. It makes me feel like I am letting them down because I am sort of wussing out during my physical therapy.
I started physical therapy without my big white candy coated shell. The physical therapy can be fun but right now it's painful. There are so many muscles and nerves that have to be worked on so I can learn how to do things by having very flexible leg muscles because my back isn't going to curve or flex. I wish the neuro doc had started my physical therapy earlier because I will still have at least six weeks left when I start school.
I like that physical therapy makes me walk for at least 30
minutes and then I do stretches and strength training for my hip. The left hip
is still swollen and will remain that way for awhile longer. This injury has
left me with some odd fat distribution. I have these weird pads of fat on my
back and then I have swelling on my left hip.
My favorite jeans are tight around my left hip and they look weird and pulled. I need to keep working on my weight by exercising within limits and having someone spot check my nutrition.
I think if I kept a food diary and had to be accountable I would stop doing things like ate six peppermint pattie mini mints, ate 8 oz of peppermint ice cream with chocolate sauce, had two beers, giant block of cheese, bowl of cheerios.....did you see a pattern here? There probably isn't any iron or protein in any of that food. It was all emotional eating. Or should I say reactionary eating. The aftermath of the ineffective decision making is what made me eat the ice cream even though my back tooth hurts like an SOB because it must be root canalled.
My hip aches and burns when I am done with physical therapy. I usually try to walk an additional 30 minutes if I can stand it afterwards. I am going to ask the therapist if she will let me use the treadmill at the therapy place so I don't have to go back up to the Rec. I think that will save some time. I try to ice my hip at home. Sometimes that helps and sometimes it doesn't. My muscles also spazz out more because I am using them. My ab muscles hurt and then spasm because I have to use them to stand up straight with no brace. It's hard to deal with this without a muscle relaxant. I am such a big baby. You'd think I could be all tough and do this with just ice and ibuprofen but it's gotten more difficult. I spent some time in the shower tonight dealing with the kinks in my back and hip.
I want to be able to have the stamina to teach. I want to be able to walk around without my brace by the time school starts again. In order to do this I have to work now. I have to work hard and keep my goal in mind.
Why do I have to be this fragile? Why can't I be tough in my
mind? How did I get so weak? What happened to me? I have to get better. I have to get to the new normal as quick as I can. I have to honor the miracle of friendship and love that so many people shared with me this year.
Health Update
It's been six months since I broke my back. Five
months since the last surgery to fix my back. Its two months since the end of the
radiation treatments.
So....the neurologist appointment.....
The neurologist ordered physical therapy for ten weeks to
increase my core strength so I can 'wean' myself out of my brace! He told me to
wear it while traveling, driving, and when I have to sit for a long period of
time so it reminds me to sit up straight. He would like to see me out of it by
March so this is exciting stuff. It's also sort of scary because it hurts to
sit without the brace on and there are no more good drugs to fall back on. I
can take massive doses of ibuprofen and maybe some tramadol, but no narcotics. I will remain on the very expensive medication for nerves that causes my legs to swell but I can cut down on it. I will also remain on a small dose of Cymbalta to help the nerve med work the right way.
I have been decreasing the time I wear the brace each day. I usually try to do something standing up and then something seated where I can retain good posture. It's been okay but it does feel weird without the brace.
I was told that the pain in my hip that comes from the
nerves will eventual ease up as I stop using the brace. I'm not sure about that
but I have to admit that my hip hasn't ached as consistently since I have tried
to not use my brace while seating while watching TV in the last 48 hours.
I'll have to get one
of those exercise balls and try to use that for an office chair. That's supposed to help increase core strength
and help with my posture.
I was tested for protein in my blood which would indicate a return of the cancer. I have to go back for some additional testing but I am stalling until January. I'm sort of tired of doctors and consistently managing my health. I need a little two week vacation from this. The oncology team thought this wasn't a bad idea but ordered a 24 hour urine test anyways. So I'll be doing that this week and we'll see what the gamma levels are and go from there.
If they are high I can do more treatment and go from there. I have oncology appointments during the first week of school but they are in the late afternoon so I shouldn't miss anything at work.
We'll see how I do. I am not looking forward to physical therapy, cancer treatment and work but I'm not there yet. I just need to keep thinking good thoughts.
Besides all of this stuff....I have to get a root canal. I
have a nasty infection on the root of one of my back molars. That's part of
what has been keeping me up at night.
Work stuff
I got very angry and frustrated last week at work. It's a variation on a theme. In the new year I am determined to leave the martyr attitude behind and work on a pro-active response to challenges. It's time to take a different approach with the parts of my job I don't enjoy.
I am preparing my stuff for next semester. I try to do a little bit each day. I need to hit this one out of the park for the students. I need to do well because I know I am a good teacher and I enjoy that part of my job.
Personal Stuff
Otherwise I have read some good books and I am watching
episodes of "The Office" which I had never consumed before. One of the books has some characters in it that broke my heart. Maybe I'll write a review.
I'm going to a wedding this week so that should be wonderful. I think winter weddings are sort of romantic. And you know I'm not that way.
I'm going to visit my sister and my family for Christmas for the first time since I am not sure. The last clear Christmas Holiday I remember spending in Connecticut was in 2000 before my mom died. Now I know I have been there for the Holidays since then but I can't remember it very well. Maybe 2003 before I got the house? I am not sure on this one.
One last thing....my roommate is back since they don't let you live in the dorm over vacations. It's been pleasant so far but I made him leave the really good speakers for his computer in his room. I think that was wise.
I am still struggling with some pain in my hip. Sometimes my back hurts since it got colder so that might be because of the metal in my back but I am not sure about that. I wish I had better pain control at night. I don't know why it's so bad at night. I don't sleep on that hip. Or I try not to.
I am still struggling with sleeping. .I thought I had it made last night. I went to bed before 2am but still managed to sleep to a very late hour I will not record here. Let's just say by the time I got up I was still sleepy and wanted to lie down again. I was suppose to go to the President's Concert thing at school but I looked at the snow and thought why bother? It's warm in here and cold out there. I am sort of sleepy now. I wonder if I could lie down and go to sleep now? it's a fairly civilized hour. It's not even bar time.
I am still struggling with medical issues. I have no idea what the neurologist will say on Thursday. I was supposed to go last Thursday but the weather was less than ideal for someone who isn't all that mobile for driving through the no man's land with no cell service for half the drive by herself. Maybe I can get someone to go with me or maybe the weather will be better. I also have more cancer related appointments in January that sort of conflict with my classes so I will have to just figure it out.
I am also struggling with the weather. I hate not being able to shovel. Not that I liked it that much in the first place. I did a little shuffling of snow today to see if I could justify calling the plow guy but I think I'll wait and see cause I have 4 wheel drive. I'll just make sure the truck is warmed up when I have to bust through the wall at the end of the driveway caused by the town's plow trucks. I just wish my kid would come home and shovel. I don't want to wreck the healing my back has done with snow shoveling. If I hurt my back it should be because I went surfing or snow boarding not shoveling.
This semester is all over but the shouting and the next semester is on it's way. We'll have to see how I do. I just hope I have the strength to go back to school and do physical therapy at the same time. I am also going to have to walk more. I want to lose some weight.
The Omaha World Herald Has Server Problems!?
I wasn't the only one to notice that the Omaha World Herald
was useless most of yesterday and today. Editor and Publisher made note of it as well as the Lost Remote Blog. I haven't been reading the OWH online since their redesign. By redesign, I mean where they decided to take almost all of the news content off the site as well as the editorial pages and replace it with annoying ads, restaurant and golf course guides. When I need news I have been going to the Lincoln Journal Star or if that's too slow, I will usually go to KETV.com.
It's been a sad day here in Nebraska that has been filled with sorrow and snow. There have been some students affected by the mall shooting and I am praying for their families. I am not sure what else someone can do at a time like this. The former students who I had thought were working at the mall weren't but some other ones were. I am somewhat happy they are all safe but I keep thinking what could have been done differently to help this person. I also want to know where they are getting quotes from his blog? The shooter apparently told everyone he was going to do this through his blog. It's probably not a good idea to make try to make sense of this because it is s senseless thing.
Today I woke up and it was snowing. Around 10am and attempting to drive my truck I decided to cancel my doctor's appointment because I didn't think it would be safe to drive all the way to Dakota Dunes in the snow. My appointment is scheduled for next Thursday. I am hoping the doctor will let me out of the brace at least part time and will prescribe some other pain killers for night time. This last week without pain meds has been fairly well, painful, and he wasn't willing to prescribe anymore till I had my appointment. Maybe I'll just have to call a local doc to see if I can get something because again, tonight, my hip hurts terribly. Not my back but my hip. OUCH.
I have a meeting tomorrow in the afternoon that I have to go to so I will have to figure out how to get the truck out of the backyard because that is where I parked it. The ice on the front porch and driveway was too dangerous for me to deal with this week and I had no ice melt because I was buying skulls shoes last week. I figured I at least had a shot of not falling if I parked in the back of the house. We had around four inches of snow so I hope my truck can handle that. Last time the truck got stuck I had to pay $50 to get it towed out. I would like to avoid that.
I also need to turn on the ringer to my phone. I missed several phone calls today because I had it turned off. I have no clue when I did that. Sometimes I think I had a brain injury instead of a spinal one.
Back to Black.
Here is an excellent blog that I think everybody who thinks they want to write a public blog should read. She has excellent photos, wonderful recipes, and right now she's telling the story of how she moved from the big city to a ranch for love. I have blog envy.
I taught at school for the first time since my accident. The first time since my speech class ended in June. Although that class was like eight people with six that showed up. So this was my first real normal sized class since April. I was a bit shaky at first. Classroom lecturing isn't really my strong point. I am not hugely fond of powerpoint although I probably should have used it today instead of my random fleeting thought hand outs that I seem to do. I can usually put together a decent class on a topic with a beginning, middle, and end. Today's was a bit a different. I would put more in the category of organized scattered.
I talked to some students afterwards. I guess no one hangs out upstairs anymore. It's very quiet up there except for Stater nights. I signed some people up for more classes. I tried to clean my desk. I was distracted because of the hip pain. I was going to try to make a meeting but I didn't really need to attend so I opted to leave because of the pain.
I finally caved and got my Lyrica prescription. It's an expensive drug even with insurance. It's a difference of night and day with the pain level while I take that medication. It really helps keep the hip pain to a dull manageable roar. It's not a narcotic but a drug that works on nerves and pain receptors. I think many doctors use if for Fibromyalgia, Diabetic Neuropathy and other non-specific pain that is caused by nerve damage. It is only approved for use in Fibromyalgia, Shingles Pain, and Epilepsy. I hope my insurance company keeps covering it because I think it is a horribly expensive drug if I have to pay over $50 for it with my health insurance. I am also a bit scared because Lyrica can cause your limbs to swell. That happened last week and was fairly frightening. It can cause you to gain weight. That is also frightening. I need to fit into my clothes when I am done with my brace. I wonder how long I will have this sort of pain.
Otherwise I watch the show ER morph into a sort of Grey's Anatomy thing....they had one of the surgeons have hot office sex with a new ER doctor. It was out of character for the show right now but then I remember back in the old days when they would have people making out in the lounge or exam rooms. They also have a story line about multiple myeloma. You know that disease that I had. Or may still have. It's sort of weird how topical that is.
I hope the producers and the writers settle soon so that the spring television season isn't totally ruined.
Health News
Today I had a panic attack caused by no sleep. I also managed to have a migraine that was a result of the no sleep situation.
I found out that someone else I worked with has a much more aggressive form of multiple myeloma. They aren't even sure that a stem cell treatment will help him. He is much older than I am but I am still thinking good thoughts and hoping that the family will be able to get some help with the funding for these treatments at the Mayo clinic.
I got back the results of my blood tests. I have a very high white cell count and a very low hemoglobin count. I have to go back in for some other tests. I hope that they don't prescribe iron. My body does not like to absorb it and tends to dispose of it in a hurtful way.
On top of everything I read this today:
"Be realistic and don't expect too much. Your back will never be as good as new. It is unusual to be totally cured of pain and to not be left with some lumbar pain and/or pain in the buttocks, hips or thighs. The aim of surgery is to get significant improvement in your symptoms.”
This is from Dr. Popovic who is a neurologist who specializes in the same sorts of surgeries that I had this summer. The quote concerned a surgery similar to mine but wasn't as extensive.
My hip is still hurting but I am trying to cut down on the expensive nerve meds. I am not sure this was the best decision. I also tried to go without narcotics for three days and I did fine. I am surprised I didn't have a withdrawal reaction but I have been trying to keep it to the nerve meds for daytime with a little tramadol or ibuprofen mixed in. I hardly ever take the hardcore stuff except at night after the pain wakes me up.
My back has been annoying me this week but that's because I keep trying to touch my toes long enough to cut my toe nails with a clipper. That I can reach my ankle with a razor makes me happy because it means I can (sort of) shave my legs.
I need some good health news for a change. I am hoping that my next appointment with the neurologist which is scheduled for the same day as my departmental Holiday party will go well. This would mean an exit strategy for this brace.
Top Ten Things I Think About When I Should Be Sleeping
10. Will I ever pay off my back taxes and student loans?
9. Can I remember the light in Normandy and Paris?
8. Do I remember what my first kiss felt like?
7. What does being in love feel like?
6. Will I ever be pain free again?
5. Will I ever be able to shoot video again?
4. What does the future hold for me?
3. Is Kel happy? I want him to be happy?
2. Could we please elect someone who won't put the world in peril?
1. Do I have to pee again?
I am already falling behind in entries for NaBloPoMo. I did figure out how to backdate entries so that's what I will be doing till I catch up.
I haven't felt well in the past two days because my left leg has swelled up to twice it's size. My right leg is also swollen. My doc wasn't in at that the VooDoo Village so I had to see someone different.(I have always called the doctor's complex the VooDoo Village because it looks like a bunch of tribal huts with shingles on them)
I hate doing that because I have to explain my whole pathology and diagnosis. I get tired of it. You would think the hypochondriac in me would love it but I just want the doc to figure out what the problem is. So this doc thought that my swelling was related to the cancer, ordered blood tests, and prescribed a diuretic. I am hoping the diuretic will drain it and that this will go away.
I am so tired of having something wrong with me. My leg hurts and every minute I wonder if I have a blood clot. My back is also hurting because I think I did too much yesterday. Maybe my lymph nodes decided enough is enough and decided to clog up. I have canckles.Or maybe I have gout. My leg just looks gross and to top it off I can't reach down far enough to shave the last bits of hair around my ankles. I am so uncomfortable with this.
Let's hope this situation calms down because I have stuff to do tomorrow. I have to set my son up to videotape something and I have to judge the Turkey Drop at school. Our college radio station as an homage to WKRP in Cincinnati holds an annual 'Turkey' drop where campus organizations fashion 'turkeys' that are dropped from a dorm fire escape. There are categories for the longest hang time, best dressed, best splat, and most accurate. I do love me some turkey drop. I am not so in love with trying to videotape all of this poetry tomorrow. I've been out sick for most of the semester but I will manage to do some taping for the poets. It's amazing how things like that work out.
I did see my dog today so that was a good thing. I will report back on the Turkey Drop tomorrow if I don't throw a clot and die.
Tomorrow I will go to work in an official capacity for a few hours. I am a bit nervous about this although I know it will be fine.
My orthopedist was reluctant to write the note that will allow me to do this. I think he didn't want to write it because he thinks I will jump right back into work without providing myself with the rest and care that I need. I think he's right because I am not good at taking care of myself. I am choosing to attend a long faculty meeting tomorrow because I am sort of going crazy at home without work. I need something I can think about. I am not sure work is the most pleasant thing but it's a fulfilling thing and that's what I need right now to get my head back in the game.
This is the longest period of time I have not worked since I was 14. It is a long time because I had a significant injury coupled with a disease that doesn't usually work itself out. I am still thinking about the cancer because there is a 50% chance it will return in a different place in my body within five years. I used to think once I got passed the cancer treatment it was all downhill from there.
I have so many concerns and questions. I am somewhat scared about my future. Part of me thought I would have less drama in the last half of my life. Who knew that outside forces would combine to make my middle age an eventful time for self reflection. I was hoping to become less emotional as I grew older. I was hoping for things to be more stable.
One thing I have learned is that nothing stays the same so you need to look at what you have now and what's on the road ahead.
Okay....it's time for me to get some rest. One final thought.
I really liked Gossip Girl and South Park tonight. They were very enjoyable because of the intelligent writing. I hope that the WGA can work out the issues they have so the writers can go back to work. I'll miss shows like this if we have to see repeats of everything because of the strike.
Insomnia and Irons don't Mix
Some of the things that happened to me today are examples of why I should not return to work at this moment. I drop things, I hurt myself, and I am a whiny, bitchy person.
I had a rough night because my hip hurt me and nothing would comfort me. I tried different positions, different drugs, different distractions but nothing made the pain fade. I was tired in the morning but decided to try to stay up during the day so I wouldn't take a seven hour long nap to make up for the sleep I lost. I would say I was somewhat sleep deprived.
The morning began auspiciously when I knocked over the ironing board with a clean white shirt on it. The hot iron was also on it so I narrowly missed melting my body cast permanently to my chest. I also managed to knock down a great deal of clean laundry that was hanging up downstairs.
After this I managed to dump the TiVo remote in the garbage and I couldn't get it out with my reacher so I strained my back trying to bend far enough to get it out. This happened after I knocked the phone off the night stand in the bedroom. The rechargeable batteries are now scattered somewhere underneath my bed probably never to be found again.
Then I tried to take the garbage out and the garbage bin dumped over in a large gust of wind. It traveled to the curb before I could even get a hold of it. This hurt my back even more because I am not suppose to pull or lift anything larger than four pounds.
I also had to drive today. I had some issues pulling myself
up into the truck and it hurt my back. There was also some pulling on my side incision which was weird. It started to bleed and that frightened me. It never did that before. For those of you keeping score, clumsy and
hurting, complaining, and whining, bleeding, and frightened. Not a good day for me.
I am wondering what sort of grey gunk is in my dryer because
all of the lighter clothes are covered in sticky grey gunk. Luckily these aren't
really work clothes. They are just some clothes
that fit over my brace.
I am not the most graceful person nor the most coordinated but
today I just felt like there was nothing I could do physically other than try to
use the remote correctly. Maybe it was Candid Camera Day in my house.
I will try again tomorrow and hope for a better day.
I need to write some media stories....maybe about Brian
Williams hosting Sat Nite Live which sort of sucked because of the lame writing
but I did enjoy the digital short and the surprise Obama appearance. Or the
writers strike..... what it means to you. Or about this crazy book I am reading.
I need to get out of my own head since that has been where I
have been living for the past three months. Perhaps my brain needs to air out
of something. That's all I need more holes in my head.
