FL was back at the hospital today for his regular appointment.
You may remember that we were last seen on Christmas Eve, and FL's dose of Revlimid was cut to 10mg without a clear explanation. Given that it was a holiday and we were keen to get home to the kids, we just accepted what we were given.
Today we saw the Consultant. She was very brisk and positive. I try not to read between the lines because she knows that we like to know the facts up front, so I am going to take her attitude as reassurance that all is basically well until we are told otherwise. She noted that the Revlimid dosage had been reduced from "25mg to 10mg on the last occasion". I queried that, as I had previously noted on the blog that he had been on 20mg. The consultant said that they never prescribe 20... it would always be 25 or 10. Really? I managed not to argue, but this was confusing to me. Sometimes I wonder if I am losing the plot altogether.
So OK, he is now on 10mg because his kidney function "is borderline". This was said in such an upbeat tone, that we accepted her words. But now I am sitting here wondering "borderline what?" Borderline not functioning? Or "just" at a level which sets him outside the limits for a full-dose drug protocol? There is no further reduction possible on this regime - it is 25mg, 10mg or nothing at all.
So... yes, here we are. Another month of just getting on with the day-to-day and trying not to worry about what may or may not be happening inside his body. His blood was taken today and sent to Birmingham, so at least next month we will know if the reduced dose is still keeping his Myeloma at bay. If not, they will take him off the Revlimid altogether. And at the moment I don't think there is another plan.
We are back at the hospital on 19 February and off to Skye for a week in March. He made me book a holiday as soon as we knew his dose had been reduced.
How is he? Tired. Tired and often grumpy. Forgetful, clumsy, often light-headed. Yesterday, he drove a mile in the snow with the hand-brake on. His hearing is deteriorating fast and one hearing aid is lost (probably scooped into the recycling bin with the old newspapers!). He gave in and had his eyes tested, so now has one pair for driving and one for reading. But all of that is pretty much straightforward "old age".
He has a great surge of insane energy on Dexy day, when he is up all night scheming and clattering and cannot be reasoned with... followed by a two-day crash when he sleeps and sleeps. But we are used to it now. And we are used to the coughing-himself-awake, the sudden spasm of an "electric shock", the cramps in his feet, and the ease with which he bleeds when he tries to put his hand in his pocket.
None of this is what either of us would have planned, but it's the way things are. It is basically fine. WE are fine. We still have fun together. We still love each other. There is just less energy to go around. He is MUCH happier when he gives in and goes to bed at 8pm, instead of struggling to stay awake to keep me company. And I know to just pick up my knitting or a book and settle down on my own for the evening and not worry. It helps to accept that this is the New Normal, for now at least.
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10 comments:
Sending hugs and prayers for you and FL. Perhaps a reduced dose of Revlivmid will maintain his kidney function longer. FL is a true warrior in his MM battle, as are you. I hope the results come back good. You and he are stronger than you think and you have come so far.
Today my hubby is home sick. We had flu shots so it is probably just a cold, but it means I won't be able to get any sewing done. Some year surely someone will invent a sewing machine that does not make noise.....
In my recent experience uncertainty is extremely stressful especially when the new normal keeps shifting. A change of scene is an excellent idea something to look forward to...Be gentle with yourself and hubby. Sending energy & peace your way on these Arctic winds.
'New normals' aren't easy to accept. I have been known to actually voice my 'I hadn't realised we'd reached that stage' thoughts - which probably doesn't help either of us really! Keep hanging on to the fun and the love amidst the rest.
And keep sewing things like that fab sparrow top.
You are both working this situation together and it's good to acknowledge that you both love each other and are dealing with this together. The break will be worth it and it's good to see FL wanted this break too.
Lots of hugs to you both.
It's just a case of dealing with whatever each day brings, isn't it? Thank goodness for hobbies - I often wonder how on Earth I would cope without my crafty likes. Chin up, chuck.
Every time you publish one of these it makes me wish I could pop over with fresh cut flowers and a lasagne in a small attempt to provide something that helps out. It's a bit far for flowers and food though so although kind thoughts aren't particularly useful I do have lots of them for you both.
Sending much love and good thoughts to both of you from over here.
dear roo,
i admire you greatly for allowing yourself to take things as they come. it's the only way for you and FL to live as fully as possible, isn't it.
as to the "new normal", something in me rebelled when i first came across the term after hugh was diagnosed. i think it was because there was an implicit notion of a continued reference to our old life, which was gone and was never cominng back. much too heavy and sad, felt more like a sentence to be continually reminded of that fact. thankfully, we came up with something that felt much more "us", and put a truer frame around how we wanted to proceed with life. "life re-invented" left the door open for whatever we wished to invite into our days, and allowed us to focus on the present.
though our world was rocked with my being diagnosed with breast cancer just over a year ago, the sense of living life re-invented has been a marvelous balm to the rigors of both of us, running from medical pillars to posts. we might both have some sort of treatment on the same day - but we'll enjoy a glorious lunch on the way home. like you and FL, determined to have a holiday, we too revel in any travel plans we can conjure up, working around medical appointments and treatments, never a thought about "how it used to be". we find new ways to do things and are grateful to be able to be up on our hind legs - life re-invented has lead to new ways of thinking and creating and enjoying the most simple pleasures each day can present.
you, my dear roo, have a wonderful way of looking at life, finding ways to be content, and making every day count. i am always inspired by your outlook, by your creativity, and by the way you write so eloquently the truth of your days. i send you and FL my love and waves and waves of powerful vibes for FL to remain stable.
XO,
karen, TC (sutherland)
Thank you everyone. Hugs all round!
I'm a late poster, but I like Karen's definition of life re-invented. I am also liking that you sound less anxious and more connected to being in the present and sort of taking it as it comes.
Holding the intention that all stays well for a lovely week in Skye and another chance for the love between you to continue growing... hugs from over here!
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