New to blogging

Well I've never tried blogging before but, since being diagnosed with myeloma, I've found so much inspiration in reading other people's stories, I thought I might try my hand at sharing mine. Some background information: My name is Leanne. I'm a 47 year old mother of two (19 year old daughter, Kahlie and 17 year old son, Cale) married to Tony. We live in a large country town called Maitland, about half an hour out of Newcastle, New South Wales, Australia. Tony works as Superintendent of Conveyors for the world's largest coal handling facility in Newcastle, taking care of the conveyors that load the coal onto the ships for export. Kahlie is halfway through her Diploma of Fine Arts at Newcastle Art School and quite the talented artist, with a particular flair for photography. Cale is about to start Year 12, his final year at high school, and is passionate about history and politics and has just taken up judo. I have been blessed with these two amazing kids, and have never had any of the dramas I was told to expect with teenagers. Kahlie and I are best friends, and we hang out together all the time. Cale tends to not want to hang out with Mum quite so much :) but we still have a great relationship and never argue. I have been a stay at home Mum since the kids were born. My husband's job at the time involved working overseas for weeks or months at a time, and we felt it was important that I stay home with them for some sort of stability. To this day, he works long hours and we manage to get by financially, so I've been fortunate to be able to spend lots of time with the kids. Their friends tend to hang out herea lot too and a couple have even moved in for awhile at various points, when they've had problems at home, so I'm kept busy feeding teenagers and taxi-ing them around, but I love it. It's hard for me now, looking back, to pinpoint exactly when my myeloma may have started. I have had some health problems for a number of years. Mainly, and ironically, another haematological disorder called polycythemia, where my bone marrow produces too much haemoglobin. It makes the blood thick and sticky, putting you at risk of stroke, heart attack, blood clots etc. Without treatment, it can kill you within a couple of years, but with treatment you can live with it indefinitely, I think. So the treatment was regular venesections (removal of blood) and it didn't cause me too many problems and most of the time I forgot all about it. I also had/have high blood, controlled by medication. I started having pain issues in 2005. First time it happened, pain in left shoulder and arm, bad enough to send me to the ER. They admitted me to coronary care, but tests showed it wasn't a heart attack. They didn't know what caused it, but after that I would randomly get the same pain. I learnt not to panic and just took pain killers and used hot packs, although sometimes it would still be severe enough to go to the ER where they could still never give me answers and no follow ups were ever suggested. I was also getting pain in my pelvis and thighs, and sometimes a couple of days of flu like aches and muscle weakness. I doubt that I could have active myeloma that long, but perhaps it was smouldering all that time? I don't know, I really still don't know that much about it. I think I can definitely trace when it became active back to a year ago. Just before Christmas 2007 I developed bad stomach cramps and nausea. I put up with it for a few days, thinking it was food poisoning, but when it didn't go away I saw the doctor. He diagnosed bacterial colitis and gave me antibiotics. I didn't know it at the time, but it was the first of several infections I would get over the next year including a really nasty case of conjunctivitus where my whole eye swelled shut and constantly dripped pus, a sore throat that took repeated courses of antibiotics to heal and another bout of bacterial colitis. I rarely get infections, so it was obviously a sign that my immune system was not working as well as it should. Plus I would catch every cough and cold that happened to be going around. Then in January, at my routine appointment with the haematologist, he told me that I was now anaemic and they would stop the venesections for awhile but initially, he didn't seem too concerned. I continuted getting pain, feeling tired and generally not well a lot of the time. In April I ended up in the ER again after two days of severe shoulder/arm pain and was shocked when they diagnosed a heart attack. No ECG changes, but a raised troponin level (the cardiac enzyme that is released when the heart muscle has been damaged). I spent 5 days in coronary care and had an angiogram, which interestingly showed no major blockages. A 20% blockage in one artery, and 50% in another, which apparently is not normally cause for a heart attack. I'm trying to remember the course of events over the next couple of months, because they're a little blurry. I was very weak when I came home from the hospital and it seemed to take me forever to start to feel normal again. I know I saw a lot of -ologists during this time. My haematologist decided to investigate why I was still anaemic despite not having venesections, and sent me to a gastroenterolgist to make sure there was no internal bleeding. I had a gastroscopy, colonoscopy and a capsule endoscopy (where you swallow a capsule sized camera and it films your intestines as it passes through). They were all clear except for some surface stomach ulcers caused by the aspirin I'd been taking since the heart attack. I saw a rheumatologist for the shoulder pain which was still around making it difficult for me to know if/when I was having another heart attack as the pain had been exactly the same, but I'd been back to the ER again two weeks after my heart attack with the same symptoms, admitted to coronary care, but it wasn't my heart. I was getting confused and frustrated. The rheumatologist said I had a torn tendon in that shoulder, and impingement syndrome caused by a small bony growth like a hook that I can't remember the name of and gave me a course of cortisone shots and sent me for physio. I did the physio and also worked with an osteopath, but nothing gave me more than very temporary relief. Doctor then said surgery was my only option but I wasn't convinced that the tendon/impingement thing was the cause of my pain, because movement wasn't restricted and it didn't hurt more to move unless I moved suddenly, the pain was just constant. I was told that recovery from the surgery would be long and quite painful anyway, so decided not to go ahead with it. I consulted an immunologist, wondering whether he could help me. My sister and two of my nieces all have lupus and fibromyalgia so I wanted to see if there was a possibility that could be the cause of my problems, but tests were negative. He did find a few problems with my blood tests, including an extremely low vitamin D level, low DHEA, low progesterone, and low cortisol. He was most concerned about the cortisol and the possibility of adrenal gland tumours, but tests ruled that out. He prescribed hydrocortisone but I found I couldn't tolerate it. It made me feel dizzy and breathless and made my heart race. It's ironic that I'm now forced to be on a much higher dose of steroid for the myeloma :S. He also prescribed high doses of vitamin D, DHEA and natural progesterone supplements as well as various vitamins, minerals and anti-oxidants. They didn't help with the pain, but I think my general health improved. Except for one thing, my GP did a glucose tolerance test and found out that I'd develped type 2 diabetes. I always knew I was at risk because I have polycystic ovarian syndrome and had been glucose intolerant for a long time, but now it had turned into diabetes. To this day I don't understand though, because i bought a glucometer and check my blood sugar regularly and it's always perfect (except for now when I'm on Dex but that's another story). Even when I eat something I really know I shouldn't, it's still perfect so I'm not sure how that means I have diabetes. I suppose I should ask how that works, but with everything else going on, the whole diabetes thing has kind of lacked my attention. I also asked to be referred to a cardiologist. Amazingly, during my stay in hospital after my heart attack, I was not seen by a cardiologist, only a consultant physician. Nor was I referred to one afterwards until I specifically requested it a couple of months later, after the nurses at the cardiac rehab classes I attended told me they couldn't believe I hadn't been referred to one in the first place. So I finally got into see a cardiologist and he initially told me he didn't even think that I had had a heart attack because the blockages in my arteries weren't significant enough. He told me that there's lots of other things that can cause a raised troponin level and sent me for a echocardiagram and a list of blood tests as long as my arm. The echo showed no heart damage and the blood tests apparently didn't show anything alarming, because on my next visit he told me that he still didn't think I'd had heart attack but he never actually told me what caused the raised troponin level. He told me to come back in eighteen months time, but then just before I left (and this is where I got lucky, I suppose) he decided to give me a request for a couple more blood tests. I don't know what made him think of it, but that's when he must have decided to do whatever test it is that picked up the para protein in my blood. I got a call from him about a week later asking me to come and see him, and that's what he told me he'd found. I asked if it was anything to worry about, and he said no but that he was going to arrange for me to see my haematologist straight away. My haematologist explained that the protein could mean anything from nothing to myeloma and that he would need to do more tests. I was sent for a skeletal survey, a 24 hour urine test and another bunch of blood tests. When I went back for the results, there was nothing conclusive. He had the x-ray films but not the report from the radiologist and all he said about the blood tests was that my protein was quite high, also small amounts of protein in urine but he wasn't concerned about that. He said he really needed to do a bone marrow biopsy to be sure about anything and scheduled it for the following week, with a follow up appointment 2 days later. I was also sent for a test for amyloidosis which was like a mini-liposuction where they stuck two needles into my stomach and sucked out some fat. It was around this time that I decided I should probably do a bit of research on the net about protein in the blood and the same thing kept coming up, multiple myeloma. I'd never heard of it before, and as much as I didn't want to think that that's what it could be, the more I read, the more it seemed like my symptoms fit. I ended up in the ER again the day before I was due to have my bone marrow biopsy with the usual severe shoulder pain, and they admitted me even though tests were negative for my heart but I convinced them to let me go home that night as I didn't want to miss my biopsy, I just somehow knew it was important that I get the results of that. The biopsy went off smoothly, and 2 days later I was back in the haematologist's office. I think I wasn't the only one who knew in the back of my mind that it probably wasn't going to be good news. My husband insisted on coming with me, and so did Kahlie, although she stayed in the waiting room. At first I thought I must have been mistaken, because the doctor just seemed to flick through the results on his computer, not saying much, and I started to think that he was going to say they didn't find anything. Now I think that he was probably just trying to prepare himself to give someone very bad news, which can't be an easy job no matter how many times you do it. He suddenly just looked at me and very softly said, "we got the results of the bone marrow biopsy, and they were'nt good..i'm sorry". He didn't even have to tell me it was myeloma, I knew. Both Tony and I started to cry and then spent the rest of the visit in shock, I think, trying to take everything in. I don't remember a lot of what the doctor told me, except that my skeletal survey seemed good apart from what they think is a small lesion on my left thigh. I didn't even know what that meant at the time. I remembered that I'd read something about different stages and I asked him what stage I was. He said that he only had preliminary results, but that he felt I was probably stage 1. I said that I'd read there was no cure, and he told me that was correct but that it could be controlled and that the average survival rate from diagnosis is 3-7 years. I remember thinking on the one hand how much better that was than being told I had six months or so, but on the other hand I started thinking about the things I probably wouldn't be around for, like grandkids and being very sad. Thankfully, I've now realised that it's possible I will be around much longer than that and hopefully long enough to see the grandkids. Oh and I also remember, interestingly, that he told me that he'd talked to the cardiologist and that they now believed that it WAS a heart attack in April, because apparently the protein in the blood can get into the heart and affect it. I'll have to ask my cardiologist more about that next time I see him. I wasn't given an option about treatment, and at the time I didn't know there were different options. I was told I would be given monthly injections of Zometa to strengthen my bones, I would be given 3 cycles of Dexamethasone 4 days on and 4 days off and then started on Thalidomide and probably one day a week (or month, I can't remember now) of Dex. He said something about a stem cell transplant in 12 months of my own cells, but he also asked whether I had siblings and I had to give a list of their names, addresses and phone numbers so they can be tissue typed as possible donors. I think that was about it for the visit. The doctor was very caring and assured me that we were in this together and to stay positive and didn't try to rush me out the door, but my head was spinning too much to take anything in and I was too ignorant of myeloma at the time to ask too many questions. The only reason I didn't want to leave his office however, was knowing that Kahlie was in the waiting room and I would have to break the news to her there. We went out and called Kahlie into a quiet area of the waiting room and told her. We all started to cry again, and then Kahlie started to have a panic attack and couldn't breathe. She was in a bad car accident at the start of 2008 and has since had problems with anxiety and has been diagnosed with post traumatic stress disorder. Add to that the fact that we are extremely close and I was very worried about how she was going to handle the news. We managed to calm her down, and she has actually surprised me since with how well she has dealt with it. She has her bad times, as we all do, but she has tried to stay positive for my sake and been incredibly supportive and just generally fusses over me like a mother hen. The next step I was dreading was going home and telling Cale. It was his 17th birthday and I really didn't want for him to always remember that day as the day he found out his mum had cancer. I wanted to wait, but Tony and Kahlie convinced me that I shouldn't. They said he'd be able to tell that something was wrong, we were all too upset. Plus, even if we did manage to hide it from him for a couple of days, they felt that he'd be hurt that everybody else knew and he didn't. I knew they were right, so I did tell him. I don't think it really sunk in straight away. I'm not sure it has even yet. I think that's his way of dealing with it and that's okay. The doctor gave us literature to read, and Kahlie was reading it a couple of days later. Cale said to me "do you mind if I don't read it, Mum? I just think if I do, it will make it real". I assured him it was okay not to read it, and while he asks me a lot how I'm feeling and is very caring about that, he doesn't really like to talk about anything to do with the cancer. The next few days were very surreal. Tony, Kahlie and I cried a lot. It felt like our world had been turned upside down and we just didn't know what to do with ourselves. Then I decided that that's not how I wanted to things to be. I wanted them to get back to normal as soon as possible. Tony's employers are amazing and they'd told him to take as much time off work as he needed, but I urged him to go back. I didn't want to sit around thinking about dying, I wanted to start living. Kahlie and I went away to the Bay for a couple of days rest and relaxation in a hotel and it was great just to get away from doctors and hospitals and tests for awhile. Then we got back just in time for Christmas, which we spent with my mum and sister and her kids and it was a lovely, relaxing day. New Year's Eve, Tony and Cale went to the foreshore in Newcastle with family friends to watch the fireworks but I'd had a sore throat/ear for a couple of days and wasn't feeling well. A visit to the doctor made sure that it wasn't an infection, but he said my eustachian tube was blocked and that it was probably viral and that I should take it easy so I stayed home and Kahlie gave up going out with friends to stay home with me. We talked and listened to music and still had a very pleasant night, considering how I felt. Other than that, I started getting bad back pain as well. The first injection of Zometa had helped with the pain but then New Year's Eve my shoulders, ribs, spine, pelvis and thighs felt as if somebody had been beating me with a baseball bat. Maybe it was because of the virus as well, but it wasn't easing so yesterday I finally gave in and got the fentanyl patches the doctor had given me. Usually I make do with Panadeine Forte (500 mg paracetemol 30 mg codeine) but they just weren't cutting it. I put the patch on yesterday afternoon and it took a couple of hours to kick in, but once it did, it was great. I've been relatively pain free ever since. I'm also bursting with energy from the Dex, a little too much so. Last night I couldn't sleep at all. I would go to bed, lay there feeling like I should be doing something, get up and wander round the house, go back to bed and repeat. Finally drifted off at 8 am this morning and woke 5 and a half hours later full of energy. I really hope I can sleep tonight, but it's 11.30 pm and I'm not feeling sleepy at all. This has been the worst it's been so far, but I have noticed that I have a lot more energy while I'm taking the Dex, but then on my days off it I crash. I get really tired and very, very weak. I find I can do very little without then having to lay down for awhile. So I'm using the good days when I'm on it to try and get my housework and shopping done, and do as little as possible on my off days. Other side effects while I'm on it are that I'm constantly hungry but everything tastes weird, my blood sugar goes through the roof even though I've started taking diabetes meds the days I'm on it and towards the end of the 4 days, I start having a rapid heartbeat. I also think I have oral thrush because my tongue and mouth are stinging. Fun, fun, fun. But I've read other people's stories and some have gone through much worse stuff than I have, so I count my blessings. One more thing I was told by my GP on my last visit is that a kidney scan I'd had done showed an angiolipoma on my right kidney. He said it was nothing to worry about, but sometimes I feel like my body must really hate me for some reason :S Anyway, this has turned into a massively long blog entry for my first attempt. If anybody manages to read through it all, I thank you for your patience :) I really just wanted to get everything down, mostly for my own sake, so I can remember what has brought me to this point. I have a feeling things can only get better from here :)