What’s next?

This is a busy week with appt’s almost every day.

Today I have an appt at DMV, yes, the dreaded DMV, to get my license renewed and try and get the real ID. The real ID requires a certified birth certificate and lots of other proof pf residency things. One reason I persisted in the NYC birth certificate debacle is I knew that this was coming. So we’ll see how it goes and I’ll report back.

Tomorrow is clinic and labs and my daughter has volunteered to drive.

Wednesday I see my oncologist so I didn’t want to have to drive 2 days in a row. I’m going to go over my old lab results when my light chains were over 1,000 mg/L. I just want to hear his assessment of when to be more concerned. I’m guessing he’ll say the same thing, that when my numbers are much higher.

Then Thursday is open.

Friday is back down to the urologist for an endoscopy to see if there is any blockage or how does the prostate look? It is an office procedure so no sedation.

We also need to get the oil changed in the car and will do that Thursday. B said he’d go. So that would be his first time out driving the Santa Fe in a while. He’s definitely able to do that now and isn’t shakey. So progress!

The zone this week is the living room and I finished that yesterday. Since our front room is small and there’s not a lot of clutter I was able to finish it in about 15 minutes. I washed windows, dusted, checked my plants and washed the mirrors. That’s about it. I do look regularly what to declutter but right now I’m content with what’s in the bookcase and also the Heywood hutch. In the Heywood is my pinecone ware so that stays. I do love looking at it and using it too!

July blood test results – Loving my single digits

So happy to still have low numbers. Loving my single digits big time.

My July blood test results show that my cancer levels (m protein) increased a bit again, but I’m not concerned. Recall that June was 5 and July is 6. Focused each day on keeping them down and reasonably stable.

Life is great – feeling good!

M protein (g/L) (if 0, then no cancer detected)
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-Portrait
My room contains part of a brick chimney. I thought it would be a nice place for a self-portrait. Love how the natural light streams through my windows.

July blood test results - Loving my single digits


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 mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

No lawn to mow

The post July blood test results – Loving my single digits appeared first on Fade to Play.

DVD – day 4 but feels like a lifetime!

So another day on and I have to say this hasn’t been the relatively easy experience I had back in 2010. I don’t know if it’s because I’m older, whether it’s because my body is weaker second time round, whether it’s the different drugs or something totally different but I am NOT liking this drug regime so far.

Whilst those first two days in hospital seemed relatively straightforward the last two days have been tough. If you read yesterday’s blog you’ll know I’ve been struggling with what’s known as the ‘Dex effect’. After a day of feeling angry and cross about anything and everything, today it has been tears and emotions all day. Thank god by this evening it seems to be calming slightly. I’m still a bit teary but a lot better in general.

The new symptoms for today (whoopee) have been cramps in my calves and the wonderful side effect of diarrhoea. I did wonder about sharing that last bit but this is a record for me and also may mean that others going through the same treatment may realise it’s normal…or tell me that it isn’t and that I’m deluding myself!

I’m going to try and keep positive now that I’m coming out of my downward spiral, and hope that this first week will be worse than coming weeks due to the fact I’m adding new poisons into my body on a daily basis. Weird really to make myself feel so awful when I was feeling pretty ok before Monday kicked off.

I have to say, I’m not quite sure how I’ll do this for 6 months if it isn’t worse at the beginning. I suppose we’ll have to cross that bridge when we come to it. And hope that I still have people who love me at the end no matter what. Thank god Nick and the kids have managed this first few days. It can’t be easy seeing someone you love turn into someone you don’t really recognise. It’s hard to explain it in words on this blog.

Wish me a better day tomorrow…and hopefully my weekends will be a more positive experience too.

Dex f**king Dex

I would apologise for my language but genuinely I now understand what I didn’t last time I had treatment. People used to talk about the Dex effect and it turning people into a Jekyll and Hyde character – I never suffered and never really got it. A funny tasting mouth but that was it.

Oh my god is it different this time. I’m only on day 3 and I’ve already experienced every level of emotion possible, including the most massive anger and frustration. Now, admitting this, does not mean that the reasons for my anger are unfounded, but perhaps the way I’m expressing them and the depth to which I feel them are.

I’d like to scream at certain people. I’m not particularly nice to the kids even when they’re not behaving any differently to normal. Nick has just about got away with everything but I don’t know how long that will last…I think he might just hide away if he’s got any sense!!

I know we’ve got more going on than a lot of people at the moment but life has suddenly seemed to swamp me and other peoples selfishness really grates. Not only am I dealing with starting chemo and all that entails, my dad is about to head into the need for a lot more care after his fall and operation and I don’t know how I can help properly when he lives 90 minutes away. Our builders are progressing but they’re now likely to be in for at least half a week longer than we’d wanted. And that’s before we can try and find a decorator who we can trust to help. My work continues (as I want it to to be able to stay sane and need the money). The kids are on summer holidays while all of this goes on and are already struggling with the fact that things are different and more is needed from them. My back still hurts and to too it all I also have pain from sleeping badly. Thank god the sickness and diarrhoea that the dog had yesterday seems to have subsided.

I’ll leave it at that. Bah humbug that I am. But I needed to vent. Anyone have any idea how long this Dex effect lasts after you’ve taken the tablets? I’m hoping tomorrow will be a better and more positive day.

…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

June blood test results – Reasonably stable

I’m extremely late again with posting my June blood test results (from 4 weeks ago). I’m getting my energy back each day and still get fatigued due to my cancer. My cancer levels (m protein) were 5, up a bit from May when they were between 3 and 4. However, this is still pretty good, as they are reasonably stable, and remain single digits. I’m feeling alright and remaining positive about life.

M protein (g/L) (if 0, then no cancer detected)
June= 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-Portrait – Epilogue
I’ve been reflecting on how alive I feel each day and how I enjoy doing things. I remember how I would get so fatigued doing nothing, a short time ago.

June blood test results - Slight increase, but still single digits

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 mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Steveston - Britannia ShipyardsMay 2014 – Steveston

The post June blood test results – Reasonably stable appeared first on Fade to Play.

Weekend stuff

We had another big earthquake in California last night. We didn’t feel it here but some people in Sacramento did.  7.1 is a big quake. Scientists are saying there could be another within the week or at the least aftershocks.  We have an emergency kit in place and directions. Usually, up here it’s fires but who knows?

Mother Earth is not happy!!

Out weather continues to be quite lovely with yesterday being a little warm at 94 degrees.

I’ve been going out to the pool and floating and it’s been nice. My daughter has done a great job keeping the pool crystal clear as B can’t do it yet. Maybe by the end of summer, he’ll be able to take over.

Today, I’m going to the gym and then straight home. Not sure what I’ll do later. I started doing some knitting again and it’s a good meditative thing to do.

Next week we have 3 appts for B including the MRI for his leg.

The doctor is reducing one of his anti-rejection drugs so that’s like 6 fewer pills a day and a few others. He will be of the one anti-rejection drug completely next week. That’s a good thing!!

I need to meal plan for the week and I’d like to use a bunch of things from the freezer and do a clean out. I made homemade pizza last night and it was perfecto!! I did use my instant pot yesterday for hardboiled eggs. It is an easy way to make them for sure.

I’m in the kitchen zone next week, so I’ll start that Sunday as it is my biggest zone.

WE ARE HOME!!!!

Yesterday, Barclay had the okay to leave the Kiwanis and go home!! It was very exciting. We cleaned out the RV and had most everything ready to go for after the clinic appt.

He had to have a chimeric blood test which will tell them how many cells are the donors and how many are his. We won’t know that for about 2 weeks. But that too is exciting.

When we left Sacramento it was a pleasant 80 or so.

Home is all green and bursting with flowers so it was lovely and everything in the house looked great.

UNADJUSTEDNONRAW_thumb_385.jpg Doesn’t he look great? ????

So it’s home to rest and heal.

We are back in Sacramento on Tuesday and then again on Friday. Both appts are early so we may hit morning traffic but going home should be fine.

There are still all kinds of things we need to watch out for but I’m sure we will handle whatever comes up.

All total he was gone 37 days. 26 in the hospital and 11 at the Kiwanis.  Overall, I think that’s a great record. I’ve read about transplants for people that can go 60-90 days in. So we are very lucky.

We walked this morning a little over a mile and later we will walk around the driveway a few times.

Soon to start

Ok so after my last post, I have had my results back and my paraprotein has gone up again. Not fast enough to worry massively but enough that my consultant wants me to start treatment in July.

So we’re back in next week to talk it all through and set dates etc and then it looks like I’ll be starting on the 29th July. Luckily he’s prepared to be flexible as we’re meant to be doing some work on the house. I won’t be able to get it finished and will still have to decorate on treatment, but hopefully all the dirty messy work will be finished before I start.

Not sure I’ve quite got my priorities right…someone said to me the other day, “are you delaying to have some quality time with the kids?”……oops! Well hopefully we can do both.

I have to say that whilst I can’t bear the thought of being ill again, and going through all the awfulness that we suffered in 2010/11, I am pleased that it is a definite now…and that we can plan now. I’m a bit of a control freak with things like that. I need to know when I can work, when I’ll need help with the kids, when I’ll need dog walkers! I hate asking for help but I’m better when it’s all planned.

So the plan now is to keep things simple. We won’t be booking in to see people until we know how the treatment affects me. And if we have booked things, please bear with us if we have to cancel. Sometimes it can be emotionally difficult as well as physically difficult. And if that’s the case, we need to be able to do that…and for me, I need to know it won’t be held against me.

It’s going to be a tough year or so ahead of us. 6 months of treatment (twice a week at hospital), 3 weeks in hospital and then 6 months of recuperation. But we’ve done it once and we’ll do it again. And hopefully it’ll be as successful as it was last time.

We’ve told the children. They’re being amazing at the moment. I hope so much that will continue. People who have followed my blog will know we have always sworn not to lie to them. That makes it really hard at times. I don’t always know whether it’s right. Rebecca asked if I could die from my treatment. How do you tell a 14 year old that there is always a slim chance, without scaring the living daylights out of her. But I couldn’t say it wouldn’t happen as even we don’t know that. You hear of the ‘worst case’ scenarios and I’d hate them to ever think that we didn’t give them the opportunity to talk about the reality. So I talked more in terms of any treatment having tiny chances of dying but that mine had been really successful last time. She seemed to take that fine. I hope!

I’m sharing this one post on Facebook (and excluding her from seeing it) so that people know that my treatment is starting again. If you want to follow my new journey without wanting to ask questions your best bet is to sign up and follow this blog. Otherwise, feel free to call, text or email – I’m always open to a chat!

Waiting

Argh sat here on my sofa just waiting for my results. Good for nothing at all. I don’t even know if I’ll get them today as I even forgot my hospital appointment last week.

I mean….since when do you forget to go to an appointment that you can’t get out of your head!!! It was all I’d been thinking about for the week before and yet I forgot to go! Even when my consultant emailed me at the lunchtime about something else, did it make me go….ahhh, must remember my appointment….nope! I had genuinely got so stressed I thought it was a different day.

It’s not even like I’m waiting for something new. It’s still my paraprotein results I’m after. I’m still down to start treatment mid July.

Stupid really. On lots of levels.

That said, I am slightly more anxious at the moment as I have a bad back. I jarred it playing netball but 5 weeks later it’s still bad. It might be my own fault – I haven’t stopped playing netball as it keeps me sane….but each time I play it gets worse. But I don’t want to let the team down – we’re winning our league at the moment and are unbeaten. And I don’t know how long I’ll be able to keep playing for.

I’m hoping it’s just an injury. But with myeloma, we all worry it might be bone injury. My consultant doesn’t seem that worried at the moment. My bloods might impact that. If they’re good he probably will remain unworried.

I just want them to come through!! I did get a letter about my next appointment – strangely for 8 weeks rather than the usual 4. Perhaps that’s a sign all is well? Or just a mistake!

Still no email as I finish this and he’ll be starting clinic shortly. Perhaps I’ll do some DIY to take my mind off things.