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I love Friday the 13th. Mostly, I just like the number 13. Why? I have no idea. Well on to 5 on Friday or maybe even Frugal Friday.
Our trip to Trader Joes was not frugal but did get almost everything I need for Christmas dinner and just holiday eating. Think Brie, crackers, pub cheese, etc.
I still need the lasagna stuff but that’s an easy Safeway trip.
It’s raining today but we did get a walk-in with our umbrellas. It was only drizzling so not bad. I’m planning on going to the gym and then maybe an errand.
Barclay is going to officially retire at the end of January from UNFI. That’s his 25-year anniversary. It was a hard decision, really but I think the right one. His HR said though he needs a medical release to return to work from his doctor and then he needs to be reinstated in order to then retire. It seems like a lot but I guess they have rules. So that’s what he’ll do. He also is going to check about the long term disability that he could possibly get for a few months but that’s pretty iffy. I guess we’ll find out soon enough.
Tonight is pizza night and I’m doing homemade. It’s still raining:(
BTW, if you’re looking for a good murder/mystery series on Netflix, Le Foret, which is in French with subtitles is superb and the companion series ‘the Black Spot’ is terrific. Excellent characters and the scenery, shot in France and Belgium is great.
I haven’t written properly for a while. Partially as I’ve been busy trying to be organised for Christmas (just in case I get ill!), but largely because there hasn’t been an awful lot to say. Which has to be good news in the world of chemo and myeloma.
So I’m sat here at the QE in Birmingham, trying to make the most of my time waiting to see my consultant. For anyone who doesn’t know, it’s my standard monthly check-up. We tend to talk about my numbers, I ask the questions that have been building up, and then I leave.
We’re getting closer to these meetings having a bit more substance to them though. Who knows….maybe even today’s will have more to say. But the idea last month was that we’d start talking about my transplant in January, with the idea that I’d be having it in March / April. I’m hoping that’s all the same, although there was a slight thought that perhaps my numbers are starting to plateau a little….i.e the drugs may not be doing quite as much now as they had been doing. That’s my main question for today….what would that actually mean if they’ve stopped working.
The idea on DVD (darathumabab, velcade and dexamethansone) was that I’d be on it until the transplant, and then after the transplant, would stay on the Darathumabab as a kind of maintenance therapy…..well I think that’s what he’d planned! But if it has stopped working, I assume that carrying on with the Dara won’t be an option and that I won’t be on any kind of maintenance. That’s slightly unnerving as I had maintenance therapy last time and felt it really helped towards my 8 years of remission. I desperately want that long again. But maybe that’s expecting too much. I must look into what the new figures are for remission after a second transplant. It used to be that they expected you to get half the time you got for your first, but I think that’s old news. I know people who’ve had far longer from their second transplants, but I would also imagine that if you have people like me who had maintenance first time round, that you could still get less time from the second if you don’t get to have maintenance.
So I saw my consultant yesterday and the good news is that my numbers have decreased even further from 11.2 to 8.6 – a brilliant decrease and it means those drugs are working (and perhaps it’s worth feeling rubbish most of the week!).
The bad news is that my consultant got it wrong when he said that I could come off the velcade and dex in January. Apparently I need to stay on them until March, and after that is when I’ll need a couple of months without them before my transplant (basically, they’re pretty toxic drugs and they want them out of my system). So it now looks like my transplant is more likely to be May/ June rather than the March/April that we thought.
I can’t decide if I think this is good or bad news. It’s definitely bad that I’ve got longer on the velcade and dex…they both make me feel fuzzy, exhausted and even sick at times. I’d been hoping I only had weeks left of it. But, the longer I wait till transplant, in some ways the better. Every month we seem to see developments in the treatment of myeloma, and we just don’t know what a month here or there might offer me. Revlimid, the drug I had as maintenance therapy last time round, but on a trial, may be available from October next year. But you have to start it within 3-4 months of your transplant. So if I can postpone my transplant, just possibly, I might be eligible to give it another go! That said, I might be told I can’t have it anyway!
I suppose if I’m honest, I’m just a bit fed up of feeling so shattered. It feels harder at this time of year too when everyone is enjoying a social life and I’m asleep on the sofa by 6pm. I’m slightly dreading Christmas Day and New Year as they both fall on my worst days of the week. But I want to be excited about them and I want to organise all the things that we have done and make it special for the kids and nice for Nick. I wish the drugs could all go on hold over Christmas and that I could just feel normal again for a few days. Thank god my temper seems to have calmed a little! That’s the only positive thing. I’m at hospital on the 22nd for an MRI to check out my back, the 23rd for my infusion and chemo, the 30th again for more chemo and then on we go. It makes me feel tired just thinking about it all.
Anyway, I think I’m just tired today so hopefully I can gee myself up a bit tomorrow.
I’ve started working out in the gym in an attempt to bulk up my skinny body without getting back the fat I lost during this process (My cruising weight prior to all of this was around 175, it’s now 160..which is much healthier.) I started out with very very light weights. However, I’ve had to suspend my workouts since I’ve developed some shoulder stiffness. My oncologist assures me it’s not due to any treatment, so I’m going to see an orthopedist and I’ve been getting some acupuncture.
Got my first post chemo haircut yesterday! That’s pretty significant. It’s super wavy right now. Pre-chemo, I had some flecks of grey. Interestingly, there is no grey in the new crop of hair. I suspect that will change.
Received a significant update on my biopsy yesterday. As I mentioned last time, my doctor sent my results to ClonoSeq, a new analytical tool that can determine whether or not my two cancers came from the same stem. And it also is much more sensitive than standard tests to determine if I have any active cells. The results are:
1) the multiple myeloma and leukemia are not from the same stem. One did not cause the other. It is mostly just bad luck that I contracted a second cancer, although it is still possible that the myeloma treatment created an environment conducive to the growth of the leukemia. But from an ongoing treatment standpoint, each needs to be addressed separately.
2) to a measure of 1 in 1,000,000 cells, no active cancer cells were detected. Specifically, the report says: “Test findings are consistent with a lack of detection of either original clonal population.” Initially, that caused my doctor to suggest I was cured. But when I asked him if I could say that here in my blog, he suggested: ”You can say – I am in the most stringent CR (complete remission) possible, no disease is detectable by the most sensitive tests (MRD-flow and NGS for V(D)J) are both negative). Cure = 10 years disease-free! Having said that, depth of remission is related to duration of remission. If you have negative ClonoSeq at one and 2 years you are probably going to stay in remission a long time or forever.” I’m suspecting that his not using the adjective “cured” maybe following the Jewish custom of not giving a “kinehora” (tempting fate). But all in all, this is fantastic news.
The ongoing plan for now is to have biopsies every 6 months. Blood tests and doctor visits monthly for the next six months. I’m not on any chemotherapy or steroids. Just some anti-viral and anti-fungal meds and some mineral supplements (magnesium and potassium). I’m also on meds to treat the steroidal diabetes that was caused taking steroids for several years. And that is working quite well. My glucose is normal.
In unrelated news, we’ve been enjoying spending time with our 2-year old granddaughter Madison. We have a weekly pajama party with her on Tuesday nights. Lately, she’s been having trouble settling down to sleep. So, I’ve gotten into letting her fall asleep in our family room while we watch Rachel Maddow. That usually puts her out in about 20 minutes. Plus, she now knows what “quid pro quo” means!
We had a nice drive to Sacramento yesterday for B’s clinic appt. Traffic moved fairly well thru the usual difficult areas( where I -80 merges to Business 80) and the downtown area. His appt went well and the good news is they have reduced his Tacrolimus to every other day. This is the biggest drug that targets keeping at bay Graft vs Host. So we need to watch for any flare-ups but the NP was pretty confident that this is the time to start. So that means maybe by February he can go off Noxafil which is the Tier 5 that we are holding on to paying the Cobra for. Actually, with the plan set to restart in January, we’re not sure if the Cobra co-pay will reset( I’m assuming it will) and that means, well, I’m not sure how much the co-pay will so that’s a big question mark.
We are set up with Plan D medicare for him but that’s not what we’ll use as that immediately goes to Tier 5 and the 25% start. So way to much $. I guess we will just need to wait and see how it plays out. I’m hoping we can drop the Cobra by March.
After clinic we went to Trader Joes and OMG it was a madhouse. I almost walked right back out. But we managed thru and I got what we needed for Christmas( fondue, and ham) and lots of good food( french fries, they have the best frozen) and other things including TJ’s wine!
We stopped for a pizza slice and then headed home.
Today is a gym day. And then I need to hit Home depot for a bulb for my salt lamp. Then home to bake some more cookies and maybe make the fudge.
Tonight is a new recipe for a spinach pie. One of the very few memories I have of my mother and this was not when I was young but @ 16, she made a spinach pie that was like a pizza. My sister doesn’t remember it so I’ve been trying to recreate it. This recipe calls for ricotta so maybe that’s what she used.
Hello to The Big Countdown to my 10th Myeloma Diagnois Anniversary!
Most are counting down to Christmas and New Years.
I’m counting down to December 30, my Life Changing 10th anniversary of hearing the word Myeloma. Learning I had 70% Myeloma eating me up alive.
December 30, 2009 forever and ever changed my life…
10 years surviving vicious cancer!
Would have never thought I’d make to my 60th birthday.
Never would have thought I’d beat Myeloma for 10 years.
Never would have thought my body could process all the medical chemicals I put into my body to stay alive.
Yes I think about this daily
Yes I think about being a myeloma cancer patient daily
Yes my thoughts are consumed with my status
Yes medical stuff and illness overshadows EVERYTHING in my life
Yes I’m grateful
Yes I’m pissed
Yes I’m happy some days
Yes I’m angry some days
Yes I am medical miracle
Yes I am beat up, exhausted, fatigued, burnt out, sad, mad and overwhelmed
Yes I am. I am. I am still here and super proud of it.
November birthday girl!
Took 20mg Dex Steroids this morning, instead of the prescribed 40mg. Just want to see if I feel any different today, or if it affects how I process my treatment today, and also want to see if I can beat up Myeloma at a lower steroid dose. Been on 40mg for longer than I remember now… How can my body still be ok on this powerful stuff for 10 years!!
Off to Velcade soon, be back to upload what I wrote the other day…
Edit or not edit? Post it or not post it?
Did you see my amazing Snow pictures on my last post? So lucky to have made that snow drive. Rarely get out. Was such a treat. So few “good days”…
Julie the “dog whisperer” :))
Hope your day, and holiday festivities are happy and healthy. Stay away from all the cooties my myeloma friends! It’s “germ warfare” out there :((
“Indeed, the flag had long been tied to white supremacy, racism and racial violence. The Confederate flag was already tied to racism in 2000 when the state legislature agreed to move it from the top of the capital to the nearby Confederate monument where it would remain for the next 15 years. Indeed, the flag had first flown at South Carolina’s State House, at least partially in response to federal orders to desegregate. The Confederate flag was a favorite symbol of those resisting the civil rights movement, including, in this case, the South Carolina government.” Washington Post
This article is from the Washington Post yesterday morning. Definitely reading material.
No one is going to change anyone’s mind about how they think about the South including the Confederate statues or the flag. People believe what they want to believe. But history and facts tell a different story.
So for those out there who like to believe the fantasy that the Confederate statues and flags have something to do with standing up to the government for the idea of taxation( what the civil war was about( they think)), think again. It was about the evil forces that lower humanity into thinking slavery was just fine.
A calm and rainy day ahead. Rain is indicated for most of today but at least it’s not too cold yet. We managed a walk in the park yesterday between storms and it was pleasant. I’m not used to being there in the late morning so things looked different:)
Yesterday, the baking bug hit and I made some chocolate chip cookies, the dough for sugar cookies( in the refrigerator now) then I prepped dinner, which was chicken with mushrooms and finally assembled two casseroles of enchiladas for tonight’s dinner.
The week ahead is not too busy. B has clinic on Tuesday and then after that, we’re going to shop Trader Joes. I plan to do Costco later in the week. I plan o getting what we need for Christmas dinner. Our tradition is fondue Christmas eve and then cheese lasagna Christmas day.
Today is a gym day.
Plus it’s the kitchen zone for those that follow Flylady. I’ll do some today and some tomorrow. It’s raining so no walk this morning.
It’s been a good week overall. The diverticulitis seems abated for the moment. I certainly hope that doesn’t happen any time soon. I hate being on antibiotics which generally my body rejects. This time it seemed ok with just minor itchiness which may have been psychological. Anyway, I guess I ‘ll just have to do a wait and see and if I notice lower left discomfort call the PA again.
It was sunny yesterday which did improve everything. More rain and snow are on the way tonight and thru the weekend.
Just got back from my walk and there are 2 geese back at the park. I’m guessing these are 2 that were injured and Wildlife Rescue helped them. So happy to see 2 of our friends!
Today I’m going to just stay home and putter around. I want to declutter some in the closet from hell and see how things can be organized more efficiently. The one closet in this house is for our clothes and it’s our overflow pantry. Maybe I should rethink the pantry part and get the one from Ikea. I’ll have to consider this after Christmas.
It’s that time of the year again, and given that we’ve made the decision to donate to Myeloma UK rather than send all our local/ online friends cards, it’s time for the Christmas newsletter to come out on my blog. This is my one post of the year where I don’t actually write it – instead, Nick has the privilege of sharing our past year with friends and family! So, over to Nick…….
To our family and all our friends (I say our friends, but of course mean Debs friends – I don’t bring much to that particular party)
Unbelievably this is CNL9 from the Famille de Gascoyne. I genuinely believed in 2010 when Deb first suggested a newsletter that it was one of her passing fancies – like going to church with the kids, buying an ice-cream maker or having regular quality time with yours truly (cheeky wink emoji), but I was wrong and you don’t hear me say that often, let alone commit it to text.
So here I am, nearly a decade later, trying yet again to make the trials, tribulations and joys of an average Midlands family vaguely interesting and usually failing – but because one or two of you told Deb you found my witterings slightly humorous, I now have to do this for the rest of my life.
Thanks and Happy Christmas.
Ok, now I have set the tone please settle down with a warm cup of bleach and enjoy the next few minutes!
2019 has been a year of house renovations, family growth, evil return of Myeloma, GCSEs starting, new jobs and dog whispering – and not necessarily in that order.
Let’s address the crap bit first. As many of you know, Deb has started treatment again for myeloma following relapse and she makes the pilgrimage each Monday to QE Birmingham where they infuse her with newly approved treatments to kill as much of the cancer as possible in preparation for another stem cell transplant some time next year (something to look forward to!!).
However, true to form, Deb is not defined by her illness but rather uses it in the most positive of ways to support the charities that in turn support us and many other Myeloma patients. We are so proud that she was officially recognised this year when she was nominated for, and won, ‘Helpline Volunteer of the Year’ at the Helpline Parnership awards, which recognised both her fundraising for Myeloma UK’s Peer support network (£125k and counting – spoiler alert as you are about to see another way we can take your cash) and her active participation as a Peer Support Volunteer.
In the 132 years I have been writing these newsletters, this is the first time I can quote someone (accurately) – in this case the Chief Exec of Helplines Partnership……
“Deb is a superb fundraiser for Myeloma UK, enabling key services to continue, an ambassador, a committed volunteer for over a decade and great at her job because she has true empathy with her peers.”
She went on to say……“and of course this can only be achieved by the support of a wonderful, attractive and super-intelligent partner.” But that bit didn’t make the paper!
As stated earlier, Deb continues to actively fundraise and is currently focused on her 50KB450 and getting as many people involved as possible (www.justgiving.com/50kb450) and Sam has got into the act with his 15b415 (www.justgiving.com/15b415). Please take a look, keep up your support and maybe Deb can push for a CBE or become a Dame……
Whilst doing this, until recently when she has had to stop, Deb has helped to look after her father (who has sadly had to move to a home after a bad fall), netballed, social media’ed, dog trained, project managed, argued with builders and generally managed the entire household and all the work that goes into running a young(ish) family. I am, as always, inspired and proud in equal measure.
For balance and accuracy I should also mention that when she is on high dose steroid she is an evil witch – but only when she is awake. They didn’t mention that in the newspaper either – fake news strikes again!
All that work on the house has meant we have had more ‘staycations’ than holidays away, but in October we did travel to the far-away land of deep fried pizza and Irn Bru on a cultural exchange to sunny Scotland. Whisky, socially educating the children with the Rocky Horror Picture Show, visiting Myeloma UK, camera obscurer and hot tubs is a good summary of our adventure. We had a great time and are starting to think about next years oddessy once treatment is over.
Moving on to the fruit of my loins…..
Rebecca is 15 and in her first year of GCSEs (wow – where did that time go?). She has gone from strength to strength this year and is super busy with a plethora (always wanted to get that word into a newsletter – it means loads but sounds far more pretentious) of activities and interests.
She has progressed from guides to Rangers after a great 3 years & completing the Baden Powel award, volunteers weekly at her local Brownies, has fundraised for a trip to Romania in 2020 where she’ll work as part of a community program (or complain regularly about the food, or both), is doing the Duke of Edinburgh challenge, learning taekwondo, studying photography & cornering the Hagley babysitting market!
In early Autumn, she and I completed the Yorkshire 3 peaks as we cavorted for 12 hours over 3 gigantic mountains in Gods own country of Yorkshire. I say we cavorted. To be clear, Rebecca cavorted. I walked, stumbled, limped and then cried – but with Mrs G support we completed the task and thanks to everyone who supported and sponsored the event. Rebecca has had a great year and we are super proud of the person she is!
Sam in now 13 and well into his third year at secondary school. I have just re-read last years exciting instalment of the Gascoyne Christmas Newsletter, and to be honest I could just cut & paste my summary of the boy-child. School, football, mates and Xbox (not necessarily in that order). I mean this in a positive way because one year it might read very differently – but for now I can say we are proud parents of a bright, funny, kind boy. Football is still a big part of his life and at the end of last season he was awarded ‘Most Improved Player’ for his local team – as proud parents we applauded and after the presentation asked how he felt and he said ‘ I must be most improved cos I was shocking at the start of the season, Dad can I have some money for getting the trophy?’ A theme is starting to appear me thinks.
I asked Sam if he wanted me to say anything else about him and after a milli-second consideration he said ‘No. Can I have some money for a drink?’ – particularly strange as we’re at home!
For me 2019 has been a year of house renovation, family and starting a new job. I am now working with a team who have brought a new blood cancer treatment to the market in the form of CAR T – google it and be amazed as it is truly fascinating and of course I have a personal interest as they research potential use in myeloma. Watch this space. [Edit Deb: He has been a superb strength too to us all as a family – he does it quietly and without fuss so I need to add this as it is a huge job that he takes on without complaint after his long days in London. We couldn’t have managed the last few months on treatment without his love and support and whilst he would say it’s just his job/ life, not everyone would do it so well].
So that’s it. 2020 will bring its own challenges, highs and lows and I want to thank all of you in advance for your support and love – we do, and certainly will, benefit from it all.
Wishing you all a Happy & Healthy Christmas and 2019
I’ve been walking for decades. When I was 25, I was told it would save my back after a fall. It has saved far more than my back! Walking has been a source for both physical and spiritual renewal in my life. Through life’s uncertainty, walking has been a reliable friend. When my life becomes too frantic, it is rest. When I need guidance, it is where I find God. When I need respite, it is peace. I have dreamed and prayed over countless miles of mountain trails, sandy beaches and city sidewalks.
My love of walking started when I was a child. My grandma gave my sisters and me each a small cotton bag filled with ten to twenty shiny copper pennies to spend on candy at the drugstore on Main Street in the tiny Wisconsin town of Barron. We felt so special as we headed out on our adventure. Our walk past gardens of peonies and rhubarb, was filled with anticipation of our arrival at the corner Five and Dime. Through the storefront window, we eyed jars filled with candy dots, jawbreakers, and tiny wax soda bottles filled with pink sugary water, trying to decide which treasures to choose with our pennies. It was joy…the freedom of the walk, the sweet treats and the love I felt from my grandma! God knows this about me. It is the only explanation for why I find pennies on almost every walk.
Walking is simple…just head out the door. But not all walks are easy.
There is a hill at 2.2 miles into my neighborhood walk. Not a straight up steep hill, but a long and gradual, lung burning incline. It is the hill that often factors into my walking decisions…as I think maybe instead of this walk, I should go somewhere flat, go a different direction or not go at all! I know! It sounds ridiculous as I write it too!
I have been acutely aware of this hill over the last several days and have been experimenting on how I approach it. Instead of focusing on the top of the hill, I’ve been making interim goals…walk to the mailbox…walk to the post…focus on the path right under me. Two to three short steps feel almost level. I’ve got this. Don’t think about the next little elevation…focus on this step…the next step…don’t look too far up the hill. Push a little. Stop and rest a little. Cheers for each small bit of progress. It works. It isn’t less hard. It is just more manageable.
This is different for me. I have always been a planner and goal setter…until three years ago when multiple myeloma became part of my walk. Suddenly the future was very uncertain and planning ahead became a mental challenge. It is my other hill to climb, a long and gradual daily challenge. It is every step, every stop to breathe and every grateful day I get up and get to do it again.
In these three years, I have been blessed with little pain and discomfort, even after life altering treatments and some scares along the way. Medicine has been good but also underlies unwanted side effects. My immune system is working hard on too few fighter cells. I challenge my doctors to work for me, to see me as an individual and not a statistic, while appreciating their clinical expertise and the science behind it. I anxiously wait on test results, staring at the notification of their arrival and pray for the good news of continued stability.
I am not everybody with multiple myeloma. I don’t fit the profile. But I have been given this. I have learned to let go of Dr. Google who only visits in the wee hours of morning when in sleepless night, I try to find wisdom or that one magic healing potion. I have learned that my army of caregivers are my life givers. Family that forget I have cancer, enlist me to help, love me unconditionally and just go and do life with me! And I have learned not to think too much about what “might” happen next. It doesn’t help me. This is not to say that I don’t think ahead. I do! I have a long list of things to do. I won’t allow this beast of a cancer to scare me from living. It’s just that I have learned to live differently. I take each day just like I am approaching the hill…two steps forward…sometimes two steps backwards…sometimes standing still…and take a breath, thankful for each step I take to reach the top of “the hill” on this day.
I have learned that sometimes it takes having the life we know ripped away to find our way. My grandson took me to see the new Disney movie Frozen II, where this idea is the central theme, “where all is lost, then all is found”. The enchanting ballad, “All is Found” speaks to me asking “…can you brave what you most fear, brave enough when all seems lost?”
On this new journey, I have learned to be brave and through it I’ve found so much more than I have lost. I am resilient and content. I’ve learned to find strength by trusting God in a new way. He says to “look carefully” at how we walk, not as unwise but as wise, making the best use of time….to understand the will of the Lord. I get it! In retrospect, it was time wasted I regret most. It was holding too tight to things I’ve loved…instead of just simply loving. It was trusting my own will rather than God’s will. It was looking way far up that hill and missing the beauty right under my feet.
I celebrate all that is these three amazing years. I live with joy! I live with hope. And right now, I’m heading out to climb that damn hill!
“All Is Found” (originally by Evan Rachel Wood)
(from “Frozen 2” soundtrack)
Where the north wind meets the sea
There’s a river full of memory
Sleep, my darling, safe and sound
For in this river all is found
All is found
When all is lost, then all is found
In her waters, deep and true
Lay the answers and a path for you
Dive down deep into her sound
But not too far or you’ll be drowned
Yes, she will sing to those who’ll hear
And in her song, all magic flows
But can you brave what you most fear?
Can you face what the river knows?
Until the river’s finally crossed
You’ll never feel the solid ground
You had to get a little lost
On your way to being found
Where the north wind meets the sea
There’s a mother full of memory
Come, my darling, homeward bound
Where all is lost, then all is found