|Still losing some weight, taste buds still broken. But I’m getting there slowly. Slowly is the problem, I’m wayyy too impatient. (Like that’s a big surprise!) Won’t be going back to work for another month and a half because of the stem cell transplant. And that’s not for certain. I get tested by way of a bone marrow sample, under sedation of course, march 29, so keep your fingers crossed. Blood test two days ago showed very normal levels so that’s great.|
It’s been a funny few weeks with a real mix of emotions.
Overall I feel like it’s been quite a good few weeks….strange really as I’ve had a week with a pulled muscle so bad I would put it on a par with labour (yes that bad!). It involved the compulsory trip to A&E which seems to come with any illness I get….while doctors once used to just tell me to go home and rest if I complained about anything, now they have to send me to get checked out! Better safe than sorry, but it can be quite frustrating and a little bit scary too. But as soon as an embolism had been ruled out, I was pretty confident that it was just a pulled muscle/ trapped nerve, and sure enough, 3 days later, it disappeared.
But something that has really affected me is that a lovely online friend of mine with MM is losing his wife to a really sudden cancer diagnosis. I don’t know them that well, but I have been in correspondence with him since the early days of my diagnosis (he has asymptomatic myeloma). They have had so many things go wrong for them in the past couple of years that this is just heartbreaking to hear about. He is such a lovely guy and I get the feeling that they are just a loving family. I wish I could do more to help them. It seems so unfair, but these things always are to the people involved.
Another friend who had her transplant is about to come out of hospital. And that made me more aware of how lucky I was when I went in. She ended up with pneumonia while she was in there and it sounds like it was a very close thing. It’s tough for everyone who goes through a stem cell transplant, but when you realise just HOW bad it can get, you realise how easy you had it yourself. So, all in all, I’m feeling like a pretty lucky person at the moment (in-between the sad moments!!! lol!)
It seems to put other things into perspective, and at the moment, I’m finding it a little hard to concentrate on the ball and processing the information for that. We are very close to sending out all the information now. I’m just hoping desperately that we can get some good sponsors for the event…..I’ll be cold calling every business I can think of in a couple of weeks time!!
Anyway, it’s half term at the moment and I’ve been busy doing stuff with the kiddies which has been nice. One of my lovely sisters and her husband offered to have the kids for a weekend so tomorrow we’re off to London…..48 hours of adult time together should be lovely and is definitely much needed. I’m hoping to get tickets for Phantom of the Opera too which would be amazing as we’ve never seen it.
Last fall, snow came early to the valley, and then stopped. The foreshadowing of a long, gloomy winter evaporated with a succession of sunny December days. The New Year heralded more of the same. In front of the Post Office, snapdragons I’d planted last March stood tall. Customers marveled at blooms so late in the year. The colors offset the few cloudy days that dared interrupt the extraordinary blue skies of January. Finally, several hard frosts wore them out. Their stamina at an end, I pulled the weary stalks and smoothed the ground.
Any hope that this unreal winter would slip quietly into spring ended abruptly with a confluence of snow, rain, and ice. First came two feet of snow. Then rain weighed it down, which caused trees to lean. The coup de grâce arrived with three consecutive nights of freezing rain. The snow hardened like concrete and trees toppled throughout the Hood River Valley.
This week’s worth of reckoning for the mild weather reminded everyone that winter should never be taken for granted. The upper valley, where I live, suffered the most damage. Numerous roads closed as downed trees and electric lines made them impassable. I spent four nights at a hotel in town. Power crews converged from all over the state to assist with restoring electricity. Local tree services cleared the roads one by one. Slowly, the valley began to reopen and people could return to their homes.
My property had significant tree damage. One large alder fell across the driveway. I managed to clear it out of the way with a chainsaw on the day before the power returned. Doing the work, I suddenly felt old, burdened by my age as well as the cancer that has tested my body since 2008.
Overall, my health is good. On the surface, I epitomize cancer survivorship. I responded well to a stem cell transplant 3 1/2 years ago. For 30 months I was drug free. Currently, I partake of a maintenance dose of two drugs that afford me the facsimile of a remission: the cancer presents itself in my lab tests but remains under control.
Nevertheless, the recent winter storm laid bare the underlying pathology of my blood cancer, multiple myeloma. The balance between red, white, and platelet cells is askew. A persistent low-grade anemia continues to characterize my blood counts. Under the strain of the chainsaw work, I wilted like the Post Office snapdragons.
Furthermore, this storm stirred up a foreboding common to all cancer patients. The impartiality of winter’s wrath robbed me of my sense of control. Frankly, for several days, this valley was at the mercy of the weather. Normally, I don’t dwell on the prospect of my cancer asserting itself. I passively accept my diagnosis and treatment. I understand that, statistically speaking, my prognosis proceeds on a positive trajectory. Yet, ultimately I must admit, my future is no more reliable than weather forecasting.
Last weekend, my youngest son joined me in beginning to clean up the mess caused by the storm. Thankfully, he handled the chainsaw work. I hauled broken limbs to several burn piles established to rid us of the debris. I paced myself, breathing heavily as I trudged back and forth across the crusty snow.
My trees took a beating but I believe they will survive. By May, most of the damage will be hidden behind new foliage. Birds will sing from the broken tops and their voices will be just as sweet to my ears. The fears raised by the winter’s punishing storm will subside. My life, tenuous and precious as ever, goes forward. And though my sense of well-being took a drubbing during January’s fierce weather, I, too, have survived.
|Alright, here’s something I didn’t know. My chemo drugs were gemcitabine, busulfan and melphlan. My skin got darker in places and started peeling. Not that bad but now I’m peeling all over now, even the palms of my hands! Last PA said “oh, yeah, your whole body will do that and then you have new skin. Its the stem cell transplant.” Its still not that bad, but every day or so, it’s a new surprise!|
Still on the mend. Walked a small block yesterday at home but at a vigorous rate and my muscles are paying for it now! Taste buds getting a little better, ate fried cat fish Yesterday and salmon today. I’m going to try to be a working person in two weeks or so. I walked again this morning and went to grocery store, with my mask on. Not too bad. One guy asked if that was for the flu and viruses going around and I told him yes! >;o)
Today had final blood and urine tests. I’m clear of myeloma! Heading home on Friday!
I’m due back for checkup in two months.
Still sleeping better and better. Ate a frozen dinner, spaghetti, the whole thing! 1st time! Dr appt moved to next Wednesday. Not so happy about that. Walked twice around the whole rv park. good day today
I can sleep all night now, sometimes with the aid of pills. Appetite is better, nausea is a little less of a problem. Met with Dr. yesterday. She said I did better on the harsh regimen than anyone else. Heck yeah I’m braggin! I meet with her again next Monday, and I should be going home that week if all goes well. Oh Lord I’m ready! I watch tv shows about food all day but then I still don’t eat much. But it’s getting better.
Now I know it’s the same for everyone but I’m really struggling at the moment to find enough hours in the day. Thank god I’m not back working yet! What with looking after the kids, trying to organise the ball and being ill, I just can’t quite keep up!!!
But generally things are going well at the moment and I am actually considering whether I could hold down work for a few hours a week. I need to see that I’m well over the next month or so, but assuming I am, I’d like to try to get some work. I’d hoped to do some voluntary work but that hasn’t come to anything so my first port of call will probably be to go back to hsbc whil I suss out how I cope. If they don’t want me, I want to get back into proper old fashioned personnel so may well offer my services to some companies for free to see how it goes while I get myself up to scratch again with HR law!!
But in the meantime, my health. Well, I had my appointment last tuesday and it went pretty well. I had asked to see my consultant as I wanted to talk through being ill so much to understand if the revlimid was the cause. Funnily she had wanted to talk to me anyway as my neutrophils had dropped to nearly 0.6 which is very low. She wanted me to have an injection to raise them but we also agreed to drop the revlimid dose. This was for 2 reasons. One is that she felt strongly that maintenance therapy is supposed to give you a good life, not make you ill. My transplant in the summer was supposed to mean that I could hopefully get a couple of years at least where life goes pretty much back to pre-diagnosis levels. And so far that’s not happening. Secondly it turns out that with at least one of the trials that showed revlimid to give a benefit, they had started patients on 25mg and dropped them to 10mg after 3 months. Well, I’ve been on 25mg for 3 months so I’d be doing exactly that. So my one fear that I’d be losing an opportunity is redundant which is great. Also, where I thought it extended my life, wrong again! They don’t know that yet. What they do know is that they think it can extend remission by up to 2 years. And they hope that will have a knock on effect of extending life prognosis too. Every year they extend it for me gives me the hope that just perhaps I’ll still be here when they find that cure!!!!
Right, I’m writing this on my iPhone which takes forever so I think I’ll leave the ball update till next time! Busy week ahead so I need some sleep.
Yesterday was wayyyy down, very tired, nauseated, couldn’t walk much. Leg cramps kept me up all nite. Had an appt this am and had to get a unit of potassium. Wheel chair going in and energetically walking out! My weight still going down… I eat, but it tastes so bad most of the time. I’m beginning to get interested in cameras again, so that’s a good thing.