Glens Falls, NY; email@example.com
1959 / Class of 2006 / Type: IgA / Bone issues / Dex and Thal / Updated: 3/15
I was diagnosed with Multiple Myeloma on December 18, 2006. My IgA numbers were over 800. They are now in the 400's. In August 2006 I got very sick all of a sudden. I was working my full time job where I have been for 12 years and also had 2 part time jobs. I was living alone for the first time in my life and I needed the money to make ends meet. I was feeling good and was doing great until I got sick. I was extremely tired and nauseous and went to see the Dr. He said I probably had a virus and if I didn't get better in a couple weeks to come back. In two weeks I was even sicker and having terrible pains in my hands and legs. My hands hurt so bad at night I would put ice packs on them to try and numb the pain. All day at work I would rub my legs the bone pain was so bad. The Dr gave me all kinds of blood tests and and other tests and thought I might have Lupus or Lyme disease. I grew up in the country near the Adirondacks in New York and still live in the area. So they tested me twice for Lyme disease because also my joints hurt very bad. I was falling asleep driving at work and was very weak.
I was then sent to a Rheumatologist. He told me I did have arthritis in different areas but not in my knees where the pain was the worst. I was limping on and off and had a hard time getting in and out of cars. Then the Rheumatologist said that there was a problem with my blood test I had taken. I asked what that might mean and he said it might be Multiple Myeloma, a blood cancer. He referred me to a Hematologist at the Cancer Center at our local hospital. I sat in the parking lot totally shocked. It had never crossed my mind once that it might be cancer. It had come on so suddenly and so bad I thought I had come down with a virus of some sort. After bone aspirations and bone marrow biopsies it was confirmed.
I was put on Dex steroid and felt great for a month and thought I was cured, I felt so good. I was pain free, had a lot of energy and felt like my old self. I was very optimistic. After a month of trying to get Thalidomide for me I started taking that too and I felt heavily drugged for about a week. I was falling asleep at work, feeling very dizzy and zoned. Then I just started feeling tired and it cancelled out the steroids effects. I was was given other tests, one being a stomach biopsy checking for Amyloidosis. After a few months of gaining weight I was taken off the Dex and now only take the Thalidomide. I had always been very thin but 2 years before I had quit smoking and then added more weight so I went from a size 10 to a size plus 1, where I am now and can't lose it.
On February 13, 2007, 2 months after diagnosis, I fell in a store parking lot. I had only been on Thalidomide for a month so I was still feeling dizzy and drugged. I broke my left elbow, my right wrist and a rib. Then my doctor had me have a skeletal survey which showed I had Severe Osteoporosis. I was shocked! This has been the hardest to accept. I always rode a motorcycle with my boyfriend, played volleyball, snowmobiled, etc... and here they were talking about compression fractures in my back and possibly breaking my hip. Because I live alone and suffered with the broken bones I did have I was scared to death. It was really hard to manage alone with both arms in casts but I did it. One on the right was a hard cast and on my left was a brace which I was SUPPOSED to keep that arm in. I was out of work for 10 weeks. I went back early so my health insurance didn't get cancelled. My recovery took a long time and my right wrist didn't heal right as it aches all the time and sometimes really hurts. I haven't been back to the orthopedic Dr because I am tired of going to doctors all the time and it has been just one thing after another.
I am now scheduled to go to Boston next week to meet a Dr who does Autologous Stem Cell Transplants. I am very nervous about this. I am also having severe financial problems with only working one job and all the co pays on medical visits and medicines that are not reimbursable by the Leukemia society. I live very simply in an efficiency and don't know how much longer I will be able to. I have family and friends but it seems everyone has been having financial problems lately so I have no where to turn.
February 20, 2008: I have had some changes in my treatment since I last wrote. I was supposed to go to Boston for a stem cell transplant in January. The Dr I saw in Boston talked to my Dr here and said they no longer believe it's best if you get a transplant after the first partial remission. With the new drugs that are out I might be able to keep my numbers low and major symptoms gone without the transplant. I was also taken off the Thalidomide because the Dr in Boston ordered me to because of my neuropathy in my hands and feet. After 2 months it hasn't gone away and my feet always hurt when I wear shoes and my hands get cold and it takes them a long time before they feel warm.
Right now I am in the "wait and see mode". The first month off Thal my numbers went up. Last month (2nd month), they went down which is the lowest we've seen since I've been on treatment. Tomorrow I have another blood test and in a day or so I will get those results. I am still getting the Aredia IV once a month which takes 2 hours and I will get that tomorrow also along with my blood test and my monthly Dr visit. I also did the 24 hour urine collection again last week and will find out those results also. I am still on iron twice a day, Calcium with D twice a day, multi-vitamin, biscadoyl, and Trazadone for sleeping which has been a problem since being off Thal. I do have more energy at work on some days and my creativity has come back, but I still get tired and sometimes take a 2 hour nap when I get home from work.
I had the flu since January 28th but the Dr said it had nothing to do with my Myeloma. I even got the flu vaccine but got the flu anyway and have never been sicker. It's almost a month later and I'm still sick! The first week I was very nauseous, headache, couldn't stay awake and had a fever that hovered between 99.9-101.9 degrees. I missed a week of work and the Dr wanted me to stay out another week but I couldn't miss any more work. The last couple weeks I have had horrible body aches again, tired and the congestion that came after the first week of being sick has come back after a couple days respite with a vengeance. I have used a vaporizer most of the month but still have coughing which won't stop but I have some codeine cough syrup I've had a while that does still work. It's hard to believe that I was this sick and it had nothing to do with Myeloma. I have never had the flu that lasted more than a week in my life and none of my family or co-workers got a fever or had to miss work at all. They did have colds and congestion a little that lasted a day or 2 and that was it.
I still have never met another person who has Multiple Myeloma and would love to have e-mail from someone near my age to see how you have fared and see if we have any shared risk factors!!!
Thank you for taking the time to listen!
February 25, 2008: I went to my appointment Thursday, 2/21/08, and had a temperature when I was checked by the nurse. I didn't realize it even though I didn't feel so great that morning, like a lot of mornings lately. So I've probably had a temperature on and off for a month now and he can't find out what's going on. He put me on an antibiotic, Cipro, that I will finish this Friday. He also ordered a chest x-ray because I still have a productive cough, even though along with my Flu Vaccine I got in November I got a pneumonia vaccine.
I got my results back today. My chest x-ray was okay but my IgA numbers went up. They were 485 the first month I went off the Thalidomide and 405 last month. I thought maybe by a miracle they would keep going down to below 300 which is normal. They were 507 this month which they haven't been that high for at least 9 months. My doctor said it is nothing to worry about, that it would fluctuate. He said I'll never get under 300! But after reading other stories on this site I have seen a lot of other people fairly healthy and happy with much higher numbers. If it goes up higher I will start taking Velcade or something similar by IV I've been told.
I'm pretty optimistic most of the time but some things get me down, one being my financial situation. Even though I love living alone and have been for about 3 years now, with my Osteoporosis I'm not able to work the two part-time jobs I had for a couple years to make ends meet. I also get very tired. I still work my full time job where I've been for over 12 years. I'm taking a risk working there because I work with developmentally disabled adults in a "school like" setting, some of which have behaviors which mean dealing with them physically, occasionally leading to take downs.
I have been asked by a few family members to move in with them because they see me struggling financially, and they don't understand why I WANT to alone. Although it's VERY hard I've told my sister that in about a month and a half I'll be ready to give up. I have had to borrow money just to make it paycheck to paycheck. With her I will just be paying my personal bills, and paying her less rent that I'm paying now so my expenses will be less. I'm hoping that less stress about money will level out the stress I have about giving up my own place.
March 31, 2008: Last Monday I got the news that my IgA numbers went down this month and that was good news. Also I've been feeling great lately with more energy and no pain! I've been in a much better mood and even enjoyed working. This past weekend I started moving some stuff for my move to my sisters this coming weekend. I slipped on a ramp with snow on it and fell and broke my ankle. It is an unstable break, going up in a spiral and across. I had a permanent cast put on today and the orhto Dr said it had cracked like an eggshell. I have to go back in a week and hopefully I won't need surgery he said. This has been very hard, to say the least! I am unable to walk because I can't hold any weight on it and because of my severe osteoporosis and severe pain walking with a walker or crutches, he put me in a wheelchair. All the weight on my good foot and leg can cause a compression fracture! And I have to be out of my apartment in 5 days. Others will have to pack and move everything and clean the apartment all day Saturday like I planned to do. I have gone from total independence to almost total dependency. It couldn't have happened at a worst time. I have been SO careful all winter wearing big boots with ice cleats and now this. I was very depressed. Family has been helping out a lot although I hate needing this much help. Hopefully it won't last too long and I'll heal quickly! I would have thought the Aredia I've been getting through IV would have helped by now.
May 2, 2008: Well I moved, broken ankle and all. I've been in this wheelchair for over a month now and have been unable to stay positive like I have been. I have been very depressed and dependent on others for almost everything which is the hardest to take. I also got bad news this week that my Iga numbers jumped last month to 565 and had a bone marrow biopsy yesterday. I have to go see my Dr Tuesday after he gets the results and talks to the Dr in Boston I saw in November. They most likely want me to go on IV Velcade and Decadron which I dread because I've been on Decadron before. I gained weight and got a "moonface" from all the puffiness. That might seem vain, but when I feel I look like my normal self I don't have to think about the cancer all the time. I go to the bone doctor May 9th and I'm hoping to be able to walk after that, I'll see I guess. I have been hearing from other Myeloma survivors which is great! It really helps and I am so thankful for this site.
May 16, 2008: I went to my hematologist Tuesday, May 6th. He said even though my IgA numbers were up, my bone marrow biopsy was only 5-6% compared to 30-35% before. So they decided I didn't need to go on Chemo for now. Hurray!!! Yesterday I went for my blood test and my 2 hour IV of Aredia and I'm anxious to see on Monday what the number is this month. I'm also wondering how much the Aredia is helping seeing how I broke my ankle.
Friday, May 9th I went to the orthopedic Dr. My ankle is healing but still broken. Now I am in a semi-walking cast for 5 MORE weeks! I am using a walker and can only put 50 lbs on my left leg, and I'm supposed to guess that, since it's a little more than a quarter of my weight. I went to my HR department at work Friday and they told me I only had a week and a half left of FLMA time because of the overlap of last year when I broke the other bones. They said I would lose my job, (After 12-1/2 years of being a great employee), and would have to sign a paper on Monday requesting a leave of absence in which they said I would have to reapply for a job and lose everything including my seniority. I got a hold of our union rep and he e-mailed me a copy of the union contract that said that if under 12 weeks of leave, you must be put back in your former position. That was Monday morning. Monday afternoon the HR guy called me and said they made a mistake and I actually had 240 hours left of FLMA. That is 6 weeks and I'm hoping in 5 weeks when this is supposed to come off I can go right back to work and there won't be any problem. I would have lost my insurance and everything.
I bought a rolling walker with a seat because I get so tired and everything hurts trying to use my arms mostly when walking. It is 16 lbs but I can drive my car again but I have to lift that over me after laying down in my front seat and putting it in my passenger side of the car. I have a Ford Escort so it is quite a scene when I get to a store and when I go to leave. I am also sweating profusely and shaking by the time I get into a place where I had to walk a ways. I haven't walked for 5 weeks and not much else so I am out of shape and feel weak. But it is a relief to go where I need to go WHEN I need to go and not depend on anyone else so it is worth it!
I still have been depressed but not quite as often as I was. I still feel like I'm in the way at my sister's house and there have been a couple incidents where I just want to run back to my simple little efficiency. But financially things are better and they are all nice to me but every woman has their own way of running their home. I'm hoping things will continue getting better concerning my health and mobility!!
August 14, 2008: Well, I haven't written in a while and a lot has happened. I was out of work a total of 14 weeks instead of the 12 allowed for FLMA so I lost my job of 12-1/2 years. I then had to reapply for my job which had been posted. People had already interviewed for it but no one had been hired for it yet. I didn't think they would re-hire me but they did. I got the run around for a while. I started back to work July 16. I lost all my time because they paid me all my benefit time due me, but I kept my seniority and rate of pay which is a relief. My New anniversary date is Dec 9th so I will get all my benefit time then.
As for my myeloma everything is going great! I had the biopsy in May and it was decided I didn't have to go on Chemo! I haven't yet had a stem cell transplant, haven't been on Chemo since November 2007, have high IgA which my Dr said is more resistant to treatment and yet the last 2 months my numbers have gone down, now at 486 which is good. I am still taking the Aredia IV every month which has anti-myeloma properties besides supposed to be helping my bones.
My ankle is still swollen double the size of the other one and still aches a lot when I walk too far or lift a lot, etc... It doesn't look so good when you are at the beach but I guess I can live with that. I'm just ecstatic that I am walking again! But scared to death that I will break something else because I can't go through that again. I was on the edge of losing my mind!!
I got an apartment on August 1st. I am so grateful that Lisa let me live with her and probably will again when I have the transplant. She has enough stress in her life with her 17 year old son and her husband who also has serious health problems. I just needed my own place where I can totally relax and be by myself. It will be tough financially and am thinking about getting a second job again. I get so tired sometimes though. I am also finding myself more sensitive than I ever was. My feelings are hurt more easily and I get more upset at times. I don't know if its my mindset after all that's happened or what.
I also feel some resentment from my co-workers although they try not to show it, that I can't pull my fair share of the work. It comes out in little ways and comments and I'm feeling very stressed about it because it's true to an extent. When there is a behavior with one of our people they step in so I won't have to risk getting hurt. Yesterday I did help with a behavior and did arm control on a person who was trying to hit and kick a co-worker and I. I got a black and blue on my leg but luckily I'm not hurt. Other staff then came and took my place. I didn't ask for this, the myeloma and the osteoporosis and sometimes it just seems unfair. I want to be strong like I used to be!!!!!
Well, I really should be grateful for all that is good in my life which is a lot! And I am. It has been two years this week when I first got so sick. It just took them 4 months to figure what was wrong with me. And as long as I can stay working I think I'll be okay!
October 16, 2008: I am still in a wait and see mode. My IgA number went up a month ago to 526 but the Dr said that is okay, (stable). Then this month it went up to 570 and the nurse relayed the message that the Dr isn't worried, considers it stable. Well I AM worried. It hasn't been this high since before I went on Chemo. It was going down for a while and I was so hopeful. I'm so afraid I will have to go on Chemo and this time it will be IV, I'll miss more time at work which I don't have any benefit time and my life will change more than it has. This MM is just like something's always hanging over your head, like WHAT is next?????
I am having severe financial problems but it is worth it living alone! I have been very tired lately and having some bone pain occasionally which I haven't had at all in about a year, except when I broke a bone. I've also been having trouble sleeping, going through menopause, depressed and I'm not sure what is causing it. I guess I shouldn't worry about everything so much but is hard to do. I'm still working so I should be grateful. I'm not sure how much longer though, I'm taking such a risk. A couple Dr's have suggested I go on disability but you don't get a SSI disability check for about 8 months, What do I live on in the meantime? Please email me if you have any suggestions.
November 4, 2008: My Oncologist Dr called me yesterday. It seems my IgA numbers went up to 627 this month and he said because it has gone up for the last 4 months I have to think about going on Chemo again. He said that means either Revlimid or Velcade along with Decadron which makes me puff up like a balloon. He said it would probably be Revlimid because my neuropathy is so bad and Velcade makes it worse. The problem with Revlimid is that it makes your white count drop which makes you vulnerable to any illness or infection that you are around from what I've read in the Revlimid booklet. It also causes rashes on your face sometimes and a lot of other bad side effects. He is trying to get hold of my Dr in Boston to see what he thinks, but said at my next appointment we would most likely set it up along with thinking of doing a bone marrow biopsy again (3rd time), and they are always FUN!!!
I don't know how I am going to do this seeing how I'm working with a population that come to work sick a lot and I have 5 young grandchildren that I can't live without seeing them. As you can probably see I am very angry and depressed and have felt that way since I got the news. I'm sure I'll get through this and maybe it will work. I just thought maybe I was one of the lucky ones who could go years without Chemo. It's been exactly one year that I have been off it. I only get the IV Aredia once a month, along with the other meds prescribed.
December 18, 2008: It has been 2 years today that I was diagnosed. I didn't remember it all day until tonight. I have been really sick the last couple days though. I have bronchitis and am on 4 medications. I missed work yesterday but went in today even though I still don't feel very good. My ear was inflamed the Dr said and he put me on a antibiotic, just in case. He also gave me an inhaler because of the wheezing.
Well, after my Dr called me and said to think about Chemo I went to my app't. The specialist in Boston wanted to wait and see about the numbers this month. They went down to 579, from 627 so no Chemo yet or bone marrow biopsy. I think it's a sign my body doesn't want Chemo. For 4 months it went up, my Dr calls me and says to think about going on Chemo and my numbers go down! He did order another skeletal survey, that's next week. So basically I guess it's all good.
Financially I am sunk. I pay for heat which is electric and it is way more than I thought it would be, already. Buying anything for Christmas is out of the question! I have also lost $10,000 from my retirement account so if I go on disability I won't have much to fall back on. I don't even have half of what I make in one year working. But I've thought about it and thought about it, I can't move in with anyone, I need and value my living alone too much, even if it's on the street.
March 13, 2009: A lot has happened since I last posted. After the bronchitis I got a bad sinus infection and was put on 2 antibiotics. It is the first time in my life I've ever had one. The x-ray showed the upper right side of my face was full of fluid and it felt like the worst toothache I ever had and there are no teeth there. The Dr said it was the pressure because it was under a bone.
My IgA numbers have been going up and down. This month they jumped to 645, the highest they have been since before going on Chemo 2 years and 5 months ago. I have been off Chemo for 1 year and 5 months so I am doing pretty well. Also, on the MM Site I have heard from people with high IgA with numbers 1,000 or more who aren't on any treatment. Next week I am having the bone density test, finally! I have been wanting to see if the Aredia IV I've been getting every month for 2 years this month is making my bones better. My Dr made me wait until now.
Financially things are not good! My first high heating bill came and I cried. I live in a small efficiency alone and the bill for one month was $270, because of the electric heat. I was on the phone with the electric company for over an hour and got on the budget at $175 a month but that is really tough to pay and I will have pay at least that amount all year round. I also told my landlord and she called me to tell me they will take $25 off my rent. That is nice of her but it's not even close to that bill that keeps building every month. I also don't have the money to pay the co-pays on all these Dr visits.
Well, I am doing okay health wise so far! It was a year ago this month that I broke my ankle and I am getting nervous. Two years in a row at this time of year I broke bones. If I don't break anything all is good!! I do get VERY tired but that is about it!
April 2, 2009: I got great news this week. After my numbers went up to 645 last month, this month they went down to 496! The lowest they have been in a long time. Also, I had a dexa scan a couple weeks ago and my Dr said he didn't expect any big improvement, after 2 years of IV Aredia for my severe osteoporosis, he just wanted to make sure my bones weren't getting worse. Well I got the call yesterday that I have had a significant increase in the density of my bones!!! I think I may still have osteoporosis but not severe. I have been on DHEA for about 6 weeks, I think. That is the only thing that has changed. They did a study on it once and found it improved some people with MM.
April 21, 2009: Something traumatic happened Saturday, and I was too upset to write until now. Actually a friend of mine and I went out for a couple hours Friday night because I love to dance. She didn't get off work until 9 so we didn't go out unitl about 10:30. A little after midnight I twisted my ankle while dancing and landed of the left side of my foot and BROKE my foot!
I didn't know it at the time and even though it hurt I continued to dance a little more. The next day it was all swollen and purple so I went to my primary Dr's Health Center. They told me it was so broken that I'd probably need surgery and wheeled me, (sobbing), out to my car to drive home. They put nothing on my foot and told me I couldn't walk on it at all. That was really funny since I was by myself and live alone and had to walk into my house, to the bathroom, the store, etc... My friend came over and we went looking for a wheelchair and couldn't find one anywhere on a weekend. I got out my old walker from last year and tried to keep off of it as much as possible and also iced it. I lost control Saturday when my "boyfriend" started yelling at me that everything's about me and how I ruined his weekend. I totally lost it and then he said I'd better watch it or I'd end up in MHU. Then he left. I calmed down and he ended coming back in a couple hours like nothing happened.
Monday I went to the Orthopedic Dr. They all remembered me from last year. Noreen the PA couldn't believe it. She had cast me last year for my ankle. First she asked me what happened and said she didn't think I needed surgery but I would a cast. I told her I couldn't take it. She consulted with Dr Fisher and they decided I could have a short walking boot! I was so happy. The least restrictive possible device. I actually had hardly any pain at all while wearing my sneakers, but they think because of my peripheral neuropathy. They also said if I did have surgery I have a good chance of getting an infection because of the neuropathy, although I have never heard of that.
I also had to let my boss know which was the hardest to do. The third spring in a row. I know I must be getting paid back for something I did in my past!!!! At first HR told me I only had 2 weeks FLMA time left because I used it all last year. Then he double checked and said I have about 7 weeks. I am supposed to get better in 6 weeks. That is the NORMAL recovery time, but is anything about me normal, I think not! I guess I will see what happens then.
My daughters, 28 and 31 helped me out Sunday, Monday and today. I hobble around and I'm not supposed to lift so they helped me clean out my shed Sunday and helped me lift some heavy things I needed at the store but I CAN drive and have. Sunday at my shed all my grandchildren were there, all 5 of them, all age 7 and under so it was a little hectic. I rent the storage shed and the rent went up so I am going through all the stuff, storing some in my daughter's basement and selling the rest in a garage sale hopefully in a couple weeks. It actually felt good to be doing something useful that I planned on doing instead of sitting around just getting more stressed out. Everyone keeps telling me to rest. I'M NOT TIRED, just tired of someone out to do me in! I have to go back to the Ortho Dr on Monday and I won't let them do anything more restrictive than what I'm using now. This Thursday I go for my monthly Oncologist app't and my Aredia IV so I will see what he has to say.
Oh, I LOVE to dance and I will again. People expect me to live in a bubble from the comments I've been getting from friends and family. I am depressed because I have been walking for 6 weeks now and just found out at TOPS last Thursday that I have lost 6lbs in the last 3 weeks and now I will probably gain all that back. I'm thinking of getting my fishing license and going fishing. I have my own pole and fishing box, (and fish tongs), so I might as well make the best of it. It will be the only vacation I'll be getting this year since I will be supplementing that with the small disability payment I'll get. Thanks for all the online support!
September 11, 2009: Well, I survived the 6 weeks out of work with the broken foot. I went back to work June 1st. I have been very worried about breaking something else. I have slowed down, being careful when walking and as a result have gained A LOT of weight. I used to run everywhere and was very active. I am very depressed and a lot of that is the weight gain. I am doing well as far as my MM. My numbers went as low as when I was on Chemo. They did go back up but not that much. I haven't been on Chemo since November 2007, I think it was. I have had the monthly IV of Aredia for 2-1/2 years. Starting last month I am getting the monthly Dr app't, the IV of Aredia and my lab work done every other month. The Dr said I am stable for now so that should be all right.
I have had more bone pain, lots of black and blue spots and terribly swollen ankles but they don't know why. Also I have this pain in my right hip, actually the joint in front where my leg is attached, Sometimes I limp all day it hurts so bad. My Dr said I should ride an exercise bike and swim for exercise and to lose all this weight. I hate looking in a mirror. People think if you're not on Chemo you are all better, but this isn't true. I still have severe osteoporosis, terrible peripheral neuropathy in my hands, feet and lower legs, loss of muscle strength and the constant worry about when the numbers are going to rise.
A lady in my blood cancer support group died last week at 47 years old. I thought she was older she had been through so much. She had Leukemia for 14 years and had 2 bone marrow transplants, one of which she developed a rejection of it and got the disease where your skin retracts, I can't remember the name. She became so bad she ended up in a wheelchair for a year. She then willed herself to walk again and she seemed to be doing great last month at the Cancer Survivors Picnic. She was smiling like usual and had her group picture taken with the rest of us. Last week she woke up in the night and couldn't breathe. She had a lung infection and her immune system was so compromised from the transplant that she died the next day. This is sad as well as sobering news. I shouldn't complain when others have been through SO much more than I have!!
I feel fortunate most of the time that my MM isn't as aggressive yet as it could be. But there are times when I just get so mad or frustrated because of the restrictions, the worry of when it will turn that way and the worry about how much longer I can work. The social worker at the hospital asked me yesterday if I had thought about disability because of the risk I am taking at my job everyday. Because of the uncertainty of it all it's hard to know what to do. When I was diagnosed my Dr said the prognosis was 5 years from diagnosis. I've heard that it's longer now about 7 years and some Dr's not even giving any number. Some people live less than 5 years and some live alot more than 7, so you don't really know.
January 9, 2010: I haven't given an update in a while. I am still in a wait and watch mode. My numbers have stayed mostly low and stable. I did break a rib in November when I was just walking. It was very painful at times. It was broken in at least 2 spots but there wasn't anything they could do. I didn't lose any work over it and I tried to hide the pain, but pain meds helped some. I had another bone marrow biopsy in November that showed good results. I joked with my Dr and asked if he'd ever seen a MM patient get cured without treatment, with my Iga numbers being low and a good biopsy, I said "I'm almost cured". He said just because my biopsy results were good didn't mean it was gone. He said if he checked other areas he'd most likely find areas that did have a lot of MM cells. That was that! I guess he doesn't want to give me false hope?! I had started exercising again but with the broken rib it was painful so I took a break, more weight gain. My hair has also been falling out, getting thin and short and I can't figure out why. I hate looking in the mirror. I'd like to lose weight before June hits, but spring is coming and it makes me nervous!
April 21, 2010: I must be one of the lucky ones. I have been off Chemo for 2 years and I just got my IgA numbers for this month. I, along with my Dr am shocked it is so low, 357. Under 300 is normal and it has never been this low before. I see my Dr every other month now and that's also when I get the IV Aredia. I have also lost 25 lbs in the last 2 months with many more to go. I was sick for a while with 2 uti's which I haven't had in 30 years, my blood sugar is a little high, and I lost my appetite for 2 weeks for some unknown reason. I have also been having a lot of problems with my hands, besides the peripheral neuropathy. I had a nerve test and have been told I have severe carpal tunnel in both wrists and need surgery. I do not want to lose my vacation time again, like the last 3 years so I am going to put this off for as long as possible. I also have been having terrible pain, burning, stinging like an electric shock, and feel like something crawling under my skin in one of my legs when I lay down. It also itches terrible and there's no rash. My primary Dr said it's nerve pain and now I am on Neurontin. It hasn't helped yet but he just upped the dosage from 300mg a day to 900mg. I've been feeling pretty good though. I'm financially strapped but I try not to let it bother me. I get a lot of joy from seeing my family, kids and my 5 grandchildren. I also see my boyfriend on weekends. He's still not happy about my not agreeing to move in together. I did live with him about 6 years ago but it's calmer living alone, as hard as it is financially. So overall everything is good and I'm still working.
April 14, 2011: It has been awhile since I've updated. Yes, I'm still alive and kicking! I have been stable for the past 3-1/2 years and not on Chemo. Last month my IgA numbers went up for the first time in all that time-higher than they have been in the last 3-1/2 years so I'm a little worried. I thought maybe I was cured! I also got the results of my bone density test. My bone density decreased 6% in the last 2 years, and I already had severe Osteoporosis so now my bones must be really thin. This was the most upsetting news, Also, as I type this I have a broken wrist that I broke Feb. 28 when I fell on ice at work, the 8th broken bone in 4 years. I actually broke this same wrist 4 years ago also in February. I thought my streak of bad luck breaking bones was over but no! I went over a year without breaking any. My Dr doesn't want to give me the Aredia over 5 years. It doesn't seem to be helping much anyway. He is sending me to a specialist in Osteoporosis in Albany on April 21. I am worried about my job. If I get put on restrictions they will get rid of me, unable to do my job. Since I've been off work I have been very bored and miss my co-workers and consumers terribly. The good part is though I get to see my family and grandchildren more! Well, I guess I will find out more next week. Also, tomorrow I see the orthopedic Dr about this wrist. Maybe I'll get the cast off. Being R handed it's really hard doing anything not being able to use it.
September 22, 2011: A lot has happened since April! I went to back to work May 1st. I worked 6 weeks and one night, June 16th, I was walking from my living room to my bathroom when I had severe pain in my right foot. I hadn't tripped or anything but I knew it was broken. I put ice on it and raised it up. The next day I went to my Dr and it was broken. I then had to go to see my Orthopedist who ALL know me by name. The PA looked at the x-ray and then said I should be able to wear a post op shoe which I got at PA Supply with only a $5 co-pay. Once home the PA called and said I had to wear a cam-boot the Dr said. I guess there's a vein that runs from that part of the foot to the ankle and it wouldn't heal otherwise. I was so disappointed and VERY frustrated. I also only had 3 weeks left of FLMA so after that I have tried to live on $160 a week. Unable to make my car payments, that will soon be gone. Social Services said they couldn't help with money, I'm getting too much. I said that I don't even get enough to pay my rent and utilities and I live alone. They said they are very sorry and they wish it wasn't that way. They did give me a food stamp card though which I was very grateful for.
At this point I didn't know what to do, I was starting to panic. I had always paid my bills on time and it took time for me to adjust and figure out what to do. I applied for permanent Social Security Disability and was approved in just 2 weeks. I was shocked! I had been told it would take much longer. There is a 5 month waiting period so I won't get my first paycheck until January 3rd. In the meantime I was also approved for Supplemental Security Income so should receive something starting next month. After talking to my Orthopedist, my Oncologist and bone specialist in Albany they all agreed that I could not go back to work without restrictions, one being that I couldn't use SCIP techniques. (Taking down adults, restraining, dealing with behaviors, etc..) This is required to be employed by CWI. I also went to the bank where I have my money market plan through work. The man I talked to there said I could take money out now that I am approved for SSD. I am supposed to get a check next week which should pay my rent for 2 months and also my utilities. I didn't want to get too much because I want to use that to supplement my SSD and there isn't much. My COBRA is getting paid by the Leukemia and Lymphoma Society. They cover all blood cancers and MM patients can get $10,000 a year toward insurance payments so I shouldn't have to worry about that for 18 months, when it will run out. (The COBRA).
I had my appointment with Dr Stoutenburg, my Oncologist 2 weeks ago. My IgA numbers have gone up to 597 and they have gone up the last 5 times they have been taken. He said he's not too worried yet but will do another bone marrow biopsy if they go up next time. He is also going to do another urine test and talked about a new bone drug that has been approved that I might want to think about getting. I've been really tired but I don't know if it's from being home bored or what. I miss my job terribly and especially my co-workers and consumers.
April 17, 2012: A lot has happened since September. I lost my car in October and walked, took the bus, biked and took cabs to get around. In December I moved in with my daughter who is a single mother of three. She needed help financially to stay here and I needed help also. I love being here with my grandchildren and my daughter and love this large apartment. In Feb., I bought a used 2008 Suzuki which I love.
My cancer has been stable for a while now and my oncologist is even amazed I've been doing so well. I joined the YMCA through the cancer support group and was working out 3 times a week in group classes in Aqua exercises, special exercise class for cancer patients and recently Zumba. Monday, March 26th, I registered for 3 new classes for the spring season. That afternoon after dinner I was sitting at the table when I had a terrible crushing pain in the middle of my chest. I thought maybe it was indigestion and took some Maalox. It didn't help and my arms started tingling and I was sweating terribly. I felt weak and was very nauseous so I went into the bathroom. My daughter kept asking me if I was okay and said she'd drive me to the hospital but she was cooking and had her three small children. My boyfriend had stopped by but was sleeping and I didn't want to wake him. I called a cab and asked them to hurry and went to the Health Center where my primary Dr is and they got me right in when I told them I had chest pain. They gave me aspirin and a EKG which showed high levels of enzymes or something like that and an irregular heartbeat and told me I was having a heart attack. On the way to the health center my sister just happened to call me so she was there with me then. She called my daughter and boyfriend and then they took me by ambulance to the hospital where they gave me Nitro and 2 IV's and blood thinning drugs. I started feeling a little better. Then they told me I was going for a catherization. Dr Bashir is the one who did it. He told me to stop talking during it because I was trying to tell him that the meds weren't working and was fully aware of everything. He found 2 completely blocked arteries and one 20% blocked. Because of being small arteries and where they were they couldn't put a stent in. I was in the hospital 4 days.
I am now on 5 new heart meds, one being Nitro I have to carry with me. The 2nd day I was home I went with my sisters and friends to a basket raffle. Soon after I got there I started having chest pain. I called on call after I took a nitro and the friend I rode there with is an RN so she stayed with me while my boyfriend came to pick me up. The pain was easing up so the Dr told me to go home and stay there, unless of course the pain came back. He said I was overdoing it! The Dr told me that I can't do anything that raises my heart rate for 6 weeks he's saying now. After being careful with my bones, now I have this to worry about. It feels like god or something is out to get me. Maybe the Myeloma WON'T get me!!!!!!!
I try to keep a positive attitude and most of the time I'm fine. Once in a while I feel a short burst of panic but it usually only lasts 10 seconds. Every day I read or hear about somebody who has it ten times worse than I do so I feel blessed, I really do!
November 14, 2012: I went to Cardiac Rehab 36 times, where I exercised for an hour on various machines while wearing a heart monitor and being monitored by a nurse on the computer and taking my blood pressure a few times each visit. After awhile I was okayed to go back to the Y. I signed up for the fall session. One week later before the session started, Sept. 1st, I broke my right foot AGAIN! I was setting up a garage sale and my foot got stuck in an object and to avoid falling my foot got bent the wrong way and I broke it in two places. I proceeded with my garage sale while icing it when I didn't have customers. I went to the hospital that evening. After a week of wearing a semi-cast I went to see my ortho Dr and was put in a walking cam boot. I wore this for 6 weeks. I signed up at the Y again. I started 3 weeks ago and take beginner Zumba Gold (for people over 50) on Mondays, Pickle Ball (similar to tennis) on Tuesday and Senior Aquafit (for people over 50) on Wednesday and Fridays. I am aching all the time from the Zumba and Pickleball but am determined to get back in shape. I've been laid up so much I've gained a lot of weight.
Last month my numbers went up quite a bit so I had another bone marrow biopsy. I was really worried because I've been doing so good. They weren't too bad but the Dr now wants to see me every 2 months instead of the three he had previously set. I've been really exhausted but I think it's because of all the exercise.
Hopefully I can stay mobile long enough to get in shape. It's been a tough year with the heart attack, the broken foot and the bone marrow biopsy. Otherwise things are going good now.
March 5, 2015: Sorry I haven't written lately. I have been good and extremely lucky. I only had 1 broken bone last year, my foot again so I didn't go to the Dr. It has been 8 years and 3 months since I was diagnosed. My light chains have been high all along but last year they got so high my Dr put me on chemo for 7 months, Decadron and Revlimid. This also put my IgA levels in the normal range and they're still there at this time.
I've also still haven't had a SCT ever so my Dr is shocked I'm doing so well. I did have 1 problem last year, I was on the Prolia injections for my osteoporosis and got osteonecrosis of the jaw. I couldn't wear my lower denture for over a year while my mouth was healing (after pieces of dead bone came out). I just started wearing it again occasionally. It still doesn't feel right.
So that means even though I have severe osteoporosis I can't take anything for my bones, I do take Calcium w/D every day which I've been taking for 8 years. Other than that I'm doing okay, just a little tired.
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