Five years and one and a half months after transplant and the lambda light chains were still rising (46) so I increased the Revlimid and I added dexamethasone on weekends. That made the chains drop to 34. It makes sleeping very hard; I suppose I’ll have to start using Ambien. Neuropathy increasing but I’m still walking. I’m trying to give up sugar and carbs but it’s not easy when you have a mother that likes sugar and carbs. still doing some freelance work at home but not enough to provide a decent check. Not sure I could handle a full time job. I am converting a small barn 10 x 16 in to a guest house, that’s my project for now. I just hope I don’t run out of money. The guest house should provide some income when done.
It’s been 4 years, 3 months and 16 days since my stem cell transplant. That’s how old I am they say. I certainly don’t look that young or even my real age, I’ve aged a bit faster.
It’s always in my mind, the return of the monster. Finally yesterday my local oncologists nurse told me my lambda light chains were rising. I have to get in touch with MD Anderson again for next plan of action. The call came at work at the time so I just stayed in work mode after I got over that numb feeling. Left word with MD Anderson Dr and no answer yet. So I wait.
Im going to try to kayak this weekend and finish restoring an old cedar robe. Life goes on.
Took a few temp jobs and just ended a job that did not work out at all. Job was not as advertised. Too healthy to get Disability and not well enough for constant physical exertion. This last job almost caused a clot. I’ll still plug away and hopefully the freelance work will pay the bills.
walk or ride the bike when I can and kayak when I have a partner.
Well after 2 1/2 years on Revlimid and monthly infusions of zometa I am now CSR! My energy levels are normal and I’m working full time, although it is is not a permanent job… Yet!
At first, I suffered from anxiety, worry and the inability to move on with life. That’s pretty common among new survivors. I was ok with day to day plans but future plans were more difficult.
Time to get moving now! I plan to start a good walking plan and maybe try one of those 1-5 k fund and awareness events. To celebrate my upcoming 3 year I bought a kayak! Yeah! Watch out!
So far so good. Still on maintenance med but feeling pretty normal now. Ride my bike, walk alot, just mowed the yard. Have a full time job for now. Appetite came back too much! Next test is in December.
Finally up this Easter morning all is quiet and coffee is made, yes! Love the quiet, clock ticking and cars going by to church outside. Cats fed, dog to walk and neighbor cats to feed. This is my third Easter since SCT and still doing well. Out of work at the moment due to “reduction of work force” so I file for jobs every Sunday. I’m hoping for something that uses my skills and not just a desk chair warmer. So many people I’ve met that are in the same fix. It helps me to help them.
Oh well, it’s a beautiful day, gonna boil some eggs and get ready for the egg pocking with my nephews. I won last year and I need to prepare!
2nd birthday! Dec 28 was my second birthday! Great that this is working out so well.
Protocol: I’m on revlimid 5mg to keep what myeloma cells I have down. Also 20 mg xeralto for the clots that the revlimid can cause. Calcium supplements twice a day, multivitamin, magnesium, valacyclovir for shingles, pantaprozole for reflux sometimes. I take zometa infusions for halting bone loss about once a month. I see my local oncologist about once a month. I see my myeloma dr every 6 months and my stem cell dr every 6 too. I’m due for a bone marrow test in March. Was due this past visit in dec but was not notified to stop blood thinners a head of time and was canceled.
Side effects: numbness in my feet from the revlimid. I have to wear shoes that have a large toe box. We reduced from 10mg to 5mg to keep it from progressing. Insomnia so I sometimes take Xanax or ambien. For Dry skin I use cetaphil. Hair is still curly, just not as tight. I have to add oil to it, but it’s very soft! I have cholesterol plaques over my eyelids, from the past “weight gain” diet or the meds, but my cholesterol levels are pretty good. Some short term memory loss and some times when handwriting I have missing letters, that’s weird. I make sure I write every day and try to correct that. I don’t wear contacts for fear of infection.