MDAnderson appointment soon.

I will be going to MD Anderson soon to discuss stem cells and the possibility of another transplant.  Feel way better than I did going into the first one but that doesn’t mean I’m not extremely nervous about it.  My energy levels go up and down according to the chemo that I take and I have to say the majority of the time my energy levels are great. I wonder this time how different a transplant is because my last transplant was six years ago.

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Another change in treatment!

My numbers (lands light chains) started climbing again so I changed doctors and new drug. Since January started on kyprolis.  Also had a mediport installed.  Not too bad.  Still getting used to it.  My little Guesthouse keeps me busy with enough guests.

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Guesthouse open for Business!

I opened the Guesthouse and took guests in about five months ago.  I also was able to get on disability.  It’s going pretty well and I’m meeting new people all the time.  I just passed my 6 th Birthday (stem cell wise).  So far so good!!

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New meds and Guest house on the way

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.img_4194

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Waking up

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.

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How to stay busy and productive.

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.

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Complete stringent response!

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!
:))

Sue Magoo

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