The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

A reprieve

So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!

It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.

That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!

Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!

Friday Stuff

Happy Valentine’s Day!

We don’t do much special since I hate crowds and would not even consider a dinner out on VD day. I did buy some nice carnations at Safeway and some roses at Costco so they are on the table looking pretty.

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It’s been a maddening week trying to get a camping reservation. Every single morning ( including today) I have been on the computer at 7am on the dot( watching the second hand) to reserve a spot and absolutely NO LUCK!

There are so many people trying to get reservations for August that it’s almost impossible. Today, I’m trying for 5 different spots and not sure if that will slow down the computer. But if I don’t do the 5 then there’s no chance. I’ll update after 7am.

NOPE>>>>>NADA>>>>>ZILCH

Let’s see what else. Barclay had to go back down to UCD med center to pick up an immunosuppressant drug because he’s had skin itching and slight rash.  That’s the one he’s been off of since December so they don’t want any GVSH happening.  We’re also dealing with medical bills from August that the Cobra was supposed to cover and they don’t have it straight. I’m ready to just chuck it and make payments. We’ve been trying to get this squared away for months and they just aren’t getting it.   They keep saying he had 2 insurances but he didn’t an only had the Cobra. What a PITA>!

I’ve applied to the LLS for my grant for 2020 and that will pay my AARP supplemental insurance.  They do such an amazing job and I’m grateful for the grant. If I ever have to go back on Revlimid they would help with that co-pay as Revlimid is a tier 5 drug and runs about $20,000 a month. With insurance you need to go thru the donut hole and then still it runs about $1500 a month.  I can’t see me going back on Revlimid but who knows.

Speaking of which, my labs came back very disappointing. They almost double!! ( well the Kappa light chains did) so that is a very bad thing.  I see my doctor next week so I’ll see how he sees this change. My ratio went up too but still is overall low at 6.58 mg/L. It’s the ratio that is more important. Still, it freaks me out that myeloma cancer cells are activating and multiplying. WTF….  well, I knew it would happen sooner or later as Multiple Myeloma is incurable but can be held in check.

Today I’m just planning on staying home and doing somethings around the house. I need to mop the kitchen floor and wipe the bathroom.

Tonight I think I’ll make a pizza Margherita although I ‘d need to run to the market for some fresh basil.

Thanks

Thought I’d just write a quick post to thank everyone for contacting Nick and me to send us love and support after my last post.

We really do appreciate it all massively. We’re busy trying to bury our heads until we know the full story this week…and hoping that my numbers will do another spin around!! Well I am anyway!

So we’ve spent the weekend doing house renovations, playing games with the kids and generally having a nice time with family and friends. And trying not to think about myeloma at all! My plan is to keep as busy as I can until I find out more at the latter end of this week! And if that means exhausting myself doing work on the house, brilliant – at least then I’ll sleep through the next few days 😂

Simple Sunday

It is quite windy but clear here in Northern California. No rain on the horizon but the north wind is making it very cold.

The moon was big and bright to the west as we walked in the park. I only did 2 rounds as I wanted to get back to try and get on Recreation.gov to reserve Nevada Beach in August. I got back and on the computer by 7: 05 am and everything was gone. Oh well, I’ll check tomorrow.

My fractured rib area( old fracture, not new) has flared up again and is very painful so I am going to skip the gym and put Arnica on it. It started( about 2 weeks ago) when I had the very minor cold but I did cough and that always does it but yesterday I must have turned the wrong way and pulled the muscle. I think I first had this rib fracture after my first relapse in 2010 0r 2011. But last fall it acted up again and I went for an x-ray, so I know it’s not new but the old “chronic fracture area.  Very bothersome and limiting which I hate. Unfortunate Myeloma does affect the bones and ribs are always a target. I’ve read of people having a bone spontaneously break and that must be awful.

This week is the bathroom zone so I’ll try and limp thru that.  Other than that I’ll be home reading or just sitting.

I’m planning on making a mushroom ragu over polenta and a meat ragu for those that want it. I’ve been making the polenta in the Instant Pot and it works great for that if you’re interested.

We had a coyote come right next to the studio where my son sleeps and he got a chicken. It was at 3pm in the afternoon. Very bold coyote to do that. I’m thinking seriously we need a dog as dogs will keep coyotes away for the most part. This was very close to the house so that’s really bold and unsettling.  I’m still undecided about getting new chicks this spring. I think I’d like to take a break with the chickens but then again they do a lot of work in the yard. Of course, if they’re out free-ranging there’s obviously the risk of coyote or fox.

 

 

Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

Bleurgh – bored and fed up now!

So I’ve now been on treatment for 6 months and I am ridiculously fed up with feeling exhausted and good for nothing for 3/4 of the week. What is worse, is that my figures for the last 2 months haven’t improved, if anything, they’ve gone up ever so slightly. We’re still hoping that’s a blip but it does make you wonder why you put yourself through the grimness of chemo if it doesn’t do what it’s meant to do.

I shouldn’t moan. (But I will).

Other people have it far worse than me. Their side effects are worse (or they say they are!), they suffer with bone issues on top of all of the chemo treatment, they have other significant side effects or additional complications that make it worse.

But I just hate not being able to do the things I normally take for granted. Some days, I haven’t even had the energy to walk Marley. Others, I can’t make dinner for the kids and they have to do it themselves while I’m asleep on the sofa. The ironing piles up to the point the MIL offers to do it. I can’t really work now as I can’t focus on it and I don’t know when my bad days will happen sometimes, and working, even in my job, can take it out of me. Sport, and especially netball has had to be paused. I can’t go out more than one day at the weekend and even that, exhausts me the next day. And then when I do feel well, I do silly things like wallpaper stripping that totally wipe me out afterwards! That’ll teach us for continuing the house renovations right up to transplant date!

Basically, my whole life has pretty much gone on hold, and its a total drag if I’m honest. I’ve gone from feeling (even if I wasn’t ‘myelomawise’), 100% fine to feeling like I’m about 50% most of the time. It’s a strange concept taking drugs that make you much worse before they make you better. I know when I get to the transplant I’ll feel like 0% for a while, but it feels like the journey moves homeward at that stage. At this moment in time it still feels like I’m touring with no idea of what direction I’m going. Maybe I’ll feel better once I have a transplant date in the diary.

Anyway, I’m ok so this really isn’t a call for sympathy. Last week I was REALLY fed up, this week only semi fed up (at the moment). Today I feel ok – I normally do on a Monday until late evening…that’ll be the devil steroids (although they seem more under control now and the sleeping tablets help counteract that side of them too). Wednesday and Thursday are my worst days normally. And I just have to make the most of the weeks where I don’t feel bad on a Tuesday or Friday….I never quite know. Perhaps I need to avoid that wallpaper stripping in the house….but I get so bored if I don’t do anything!

Enough of the wingeing though. On a positive, my friends in Belbroughton arranged a brilliant ‘no frills’ disco for my #50KB450 at the weekend. It worked brilliantly, hopefully wasn’t tooooooo much work for them all, and raised £500 for Myeloma UK and my target. And it was loads of fun!!

It will take us over the 10% mark which is great! If you want to see an update on what has been going on just pop to my #50KB450 tab at the top of this page. The next event is that Deb and Brigitte are doing a 3 hour body combat event in Stourbridge on the 29th Feb.

Finally a big 🎉🎂Happy 18th Birthday🎂🎉 to Holly for Wednesday! She has really generously asked friends to donate to her fundraising page for #15KB450 instead of presents – not many 18 year olds would be that selfless! She’s also doing the 2020 challenge and running that many miles in 2020….mental! If anyone else would like to support her, it would obviously be great!

Cycle 2 Week 9: Cancer is doing weird things to my body

In mid-Dec I was having headaches that wouldn’t go away so I went to my hospital’s Urgent Care for an assessment. A CT Scan didn’t reveal lesions or tumours. While waiting to see an ENT (Ear Nose Throat) Resident, I had a period of uncontrollable chills and shaking, that I attributed to my body being cold. The ENT Resident examined my nasal passage and found I have chronic sinusitis due to my cancer, so he prescribed a nasal spray to repair it. He also said that the random lumps in my mouth were benign.

Later that week when I arrived for chemo treatment I was coughing and had a fever of 39.1C, so I was isolated and various tests were taken. Chemo treatment was stopped for two weeks and I was placed on antibiotics. Results from the CDC revealed that the uncontrollable chills, headaches, and fever were a precursor for the Adenovirus, a virus that attacks people with immune suppressed systems. One of my pre-chemo drugs is actually an immune suppressor. Thankfully after a couple of weeks I had fully recovered from the Adenovirus and my chemo treatment continued.

My Dec blood test results were pretty meaningless (jumped to between 47 and 48 from between 40 and 42 in Nov) as it was based only on my first chemo treatment which was Cycle 1 Week 1. Cycle 1 Week 2 and Cycle 1 Week 3 were cancelled due to the Adenovirus. I remain confident that January’s blood test results (based on usual 4) will show a drop in my cancer levels.

Overall, I’m really focused on listening to my body, eating healthy, and relaxing as much as possible to help my chemo be as effective as possible. Bed has been my friend recently.

My mobility is compromised due to the lesions in my pelvis, so walking up stairs is no longer possible, without significant difficulty.

I really don’t stress about the various things going on with my body. I have an incurable cancer and I’m alive, so I’m thankful for that.

I take each day as it comes and focus on being calm and happy.

Cycle 2 Week 9: Cancer is doing weird things to my bodySelf-portrait: Rest is key for my health

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Steveston - Canada GeeseMay 2014: Steveston – Canada Geese

The post Cycle 2 Week 9: Cancer is doing weird things to my body appeared first on Fade to Play.

Simple Sunday

Whew, jury duty was brutal. We ended up a hung jury as one juror was deadlocked. I at first was on the not guilty side and then after reviewing all the evidence went with a guilty verdict. But it didn’t change the outcome as a mistrial was declared. Not sure how the lawyers proceed but that’s not my worry. I was completely wiped out by the end.

It’s raining here quite hard so no walk today. The Frogg Toggs I got for Christmas needs to be returned as they don’t fit quite right. So no walking today unless it lets up( just checked weather and no letting up).

I’m planning on going to the gym today as tomorrow is my prep day for the dreaded colonoscopy.  I’m sure I’ll get thru as I’ve clearly been thru worst.

I need to get my labs done this week too and think I’ll plan on Thursday.  I see my doctor in February(middle) so there’s time but I like to know my results before. If it continues as it has been my rise should be around 11 points taking me to @ 65mg/L Kappa light chains. The ratio will probably go up to. I actually feel ok but Myeloma is tricky that way and that’s why some people don’t get diagnosed till a fracture like I did. Well, no sense worrying about that now.

Yesterday I made lovely baked potato soup. It came out great. I used the Vitamix to blend and it came out very smooth. Tonight I’m making breakfast for dinner to keep it light. Just scrambled eggs, maybe pancakes and/ or toast. I might do some of Adelle’s chicken sausage as I need to use that up.

 

2020 – A (Belated) New Year!

I started writing this post a couple of weeks ago at my last consultant appointment and forgot to post it so here it is with a postscript at the end!

Although my last post was written on Christmas Eve, looking back on it I must have been Hugh as a kite!! I hadn’t realised quite how bad it was until Nick told me on Christmas Day – by the end it didn’t make any sense at all! But the good news is that the sleeping tablets got me asleep and I had a much better Christmas because of it!

In fact we had a lovely Christmas and New Year. It was massively busy with guests but a great time of catching up with people and making the most of my health as it is at the moment.

And now we’re on the countdown. Or at least I am. Unless anything changes, I have 10 weeks left on treatment, before I have a 2 month break and then my second Stem Cell Transplant. I really do think myself lucky to have had 9 years inbetween my transplants but it doesn’t stop the interpretation that I’m feeling about going through it all again. We’ve got a date now for February to discuss the procedure (and how it might have changed from my first time) so that will be interesting … it has definitely made it feel more real!

But as for the here and now, things plod along really. As I said, I’m back on the velcade and it has hit me hard this week. It always seems to when I have a break! I slept for 3 hours last night (while the kids made their own dinner and sorted themselves out), and then got up this morning, pottered for half an hour and then was back in bed until it was time to leave for hospital at lunchtime! And I’m still exhausted and feeling. Very bizarre.

None of it is made easier by the fact I’ve now also been diagnosed with Meibomian Gland Dysfunction (MGD). It basically means that the glands in my eyelids are blocked and so can’t secrete tears properly. So I either have really dry, itchy eyes, or I have tears rolling down my eyes! Normally the latter! It makes you just feel even more tired and blurry eyed than normal which I can’t imagine helps my overall feeling of wellbeing.

Haha. Also just had a letter today from Sajid Jarvis saying well done for winning the Helpline Volunteer of the Year Award! He’s our local MP but I was quite impressed that he wrote. I might even see if we can get him to donate something for Sam’s #15B415 challenge! Someone might want the normal bottle of wine that gets sent through, signed!

Postscript:

So not much to add since what I wrote above. Everything is still on track, and the sleeping tablets are continuing to help me to cope with the lack of sleep…although this week has been exhausting (but due to sorting my dads house all weekend and lots of wallpaper stripping!). I’m still waiting to hear whether my stem cells from first time round are viable but will hopefully find out next week….it’ll be a massive relief if they are!

In the meantime, I’m feeling pretty positive about the #50KB450 fundraising at the moment. We’re nearly at 10% already, much helped by asking people to donate instead of sending me bday cards this weekend! I’m also sending out lots of letters to businesses that I know to see if they can help as that’ll be my easiest way of raising money! Sam is doing really well with his #15B415 challenges (he’s raised over £1000 himself!), and all the other family and friends who have got involved have done amazingly well already, with more coming in all the time. I feel ever so humbled by how much people have been prepared to do!