And change……

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Stanyan Street

The Oakland Gang: niece Tillie, me, Nephew Joey, my wife Marilyn, and Noah our oldest son.

Due to my cancer, multiple myeloma, the physical adventure of traveling challenges my attitude. I dislike flying: the herding, the depressing bag of pretzels, and the cabin’s claustrophobic fit. Yet, once again, my wife and I chose to spend the holidays in San Francisco’s Bay Area.

We stayed in Oakland at a hotel on Broadway, close to where our oldest son lives. We were joined by a niece, who lives and works in a town nearby and her brother, our nephew, who was visiting following the completion of his degree at Tufts University in Boston.

Lake Chalet

I’d arranged to re-schedule my twice monthly infusions so as to not interfere with our activities. My treatment also includes oral drugs, which can continue when I’m on the road. I take a chemo type pill once a day and a steroid once a week. I’ve become inured to the daily pill. Its side effects blend into the general fatigue syndrome that characterizes my blood cancer. The steroid, though, radically alters my mood, my energy, and, perhaps, my personality.


We dined at a number of excellent restaurants: Itani, brunch at Lake Chalet, The Berkeley Social Club,  a morning snack at The Rotunda on the first morning, the hotel’s restaurant for breakfast Christmas day, then Farley’s East on the penultimate morning. Prior to seeing the movie, Little Women, we ate Thai street food at IMM and finally a goodbye meal at Tay Ho, a French/Vietnamese restaurant.

The highlight, however, was Christmas dinner at my brother and sister-in-law’s house in San Francisco. The Oakland gang merged with the San Francisco gang. 

Brother and Sister-in-Law’s house on Stanyan Street

The house sits near the top of Stanyan Street above Golden Gate Park. It is of Victorian vintage, built early in the twentieth century. (1904)

There are three levels situated on a steep slope adjacent to Sutro Forest. My brother and his wife live on the top floor. Their daughter and son-in-law and 12 year old grandson occupy the main floor. A laundry and storage, as well as a small studio apartment finish out the dwelling. There is also a two car garage, quite a luxury in parking starved San Francisco. They bought the house for $100,000 in 1973.

Oakland street art.

They admit to initially being anxious about the mortgage. At the time, my brother was a San Francisco fireman. His wife worked in medical research. She then chose to get a law degree and eventually became a patent attorney. Along the way, she also bore a child. By investing in their ingenuity, they were able to persevere through those early busy years. The house is now worth much, much more than the purchase price.

Stanyan Street

Main floor of the Rotunda in Oakland, CA

Christmas day was my steroid day. Under the influence of the drug, I sometimes jabber too much. I have also been known to say the wrong thing at the wrong time. Such are the perils of the steroid high. My faux pas filter, however, managed to keep me out of trouble. The convivial conversation even  prompted me to toast the three family lines in attendance. 

But, the enduring star was the house itself. Nurtured by my brother and his wife through the years, it has hosted numerous events commemorating family passages. There was a going away party for my wife and I decades ago when we immigrated to New Zealand. Then, in the not too distant past, a support reunion party for me prior to my stem cell transplant.

Tay Ho

Furthermore, two of their granddaughters lived there while launching into adulthood. And, my SIL’s mother spent her final days in one of the downstairs apartments. Birth, death, and all the transitions in between: such is the legacy of the Stanyan Street house.

When the evening ended, my wife and I returned to Oakland with our son. The lights of the Bay Bridge glittered with holiday flair. My slumpiness from the myeloma had vanished temporarily, along with other aches and pains of disease and aging. The day’s activities had drained the jolt of energy caused by the drug. Yet, I still floated in the steroid’s groove and mused, without judgment, as to how my body is no longer entirely my own. It is managed, to a degree, by pharmaceuticals. That’s ok. I would not be alive without them. 

Time for an update

I thought I’d write a quick update for people on here as it’s been a busy couple of months since I explained about coming off maintenance therapy and I haven’t really had a chance to let people know anything. We’ve been busy renovating the downstairs living room and thankfully are only a couple of weeks off completion now!

So, my last medical update was about being taken off Revlimid (my maintenance therapy). I’ve been off it for 3 months now…the first results weren’t too bad and my figures only went up by 0.5. Last month though, they went up by 2 which is faster than I’ve had it change over the past 7 years. It means that next months figure will be really important in my consultant making the decision as to what happens next and whether I start on the Myeloma XII trial which I have been given information on.

It is a really strange one – to feel that they took me off a drug that was keeping my progress slow and steady, resulting in it speeding up and potentially me needing treatment even sooner! I don’t quite understand how that makes sense for anyone except the drug company who no longer have to fund my drugs (they payed for them whilst I was on the Myeloma XI trial). I am wondering about challenging the system and asking for them on ‘compassionate grounds’ which apparently you can do. I need to look into what that means and how I would go about it, but surely if you can prove that a drug keeps you in some form of remission, that is more cost effective for the NHS than paying for a Stem Cell Transplant for me?

So, unless I can arrange for that to happen, it looks like I may well be back on treatment by the summer which would suggest a transplant at Christmas – not really what I want at all but if by getting in there early it stops me from suffering any type of bone or kidney damage, then I’ll have to go with it. We’ve thought about it lots over Christmas, as you’d expect. I maintain the fact that I’m majorly lucky to have been in remission for so long, and to have avoided complications. But, I’m absolutely gutted that, from being a healthy 43 year old who plays netball, racquetball and runs my own business, I will have to give up the sport etc and make myself so ill that I can’t function for 4 – 12 months. What a choice to make. It sounds strange, but in some ways when people are ill or suffering symptoms, the decision to go into a chemo regime feels like it might be easier.

The kids do know a little of what is going on. We weren’t going to tell them much until we knew I needed treatment to start, but then Sam started asking very specific questions about my health. We’ve always promised to tell them the truth and so we had to tell him that I’d been taken off revlimid. Of course that led to questions about the ‘what next’ so they do now know what could be on the cards. I think perhaps that’s for the best anyway – it gives them time to get their heads round it and I’m sure they’ll need that just like we do. It also means that if they stumble across my blog, that they won’t read anything on here that comes as a shock to them.

In the meantime, we’re taking the time to regroup and work out how 2019 might look for us. We had hoped to go away somewhere, but I think now, we will look at camping and prioritising getting our bedroom turned into an ensuite to help with the treatment process. I’m so pleased we’ve nearly finished the renovation of the living area as that means we have somewhere to enjoy and to have as ‘our’ part of the house (the rest is very dated). On top of that, it’s time to get back into doing things as a family….the poor kids have been very neglected during this whole house business, so we’re looking forward to more dog walks in the Clent Hills, more board games and generally more time together.

Next update probably won’t be until after the next lot of bloods…..I’ll be counting the days 😦

Beginning a new journey?

I’m writing this early in November but won’t be posting it for a few days. The reason being I still haven’t had a chance to talk to Nick as he’s in San Francisco with work and I don’t want to burden him with anything. But I wanted to get my initial feelings down while they’re fresh.

On Thursday, I had my routine hospital appointment. Every month I have to go as I’ve been on a trial where I’ve been given a drug called Revlimid as a maintenance therapy. I’ve now been taking it for 7 years and I honestly believe it has helped to keep me in remission.

I knew when I walked in the door that something wasn’t quite right. My consultant wasn’t quite as smiley and I could see a graph on his desk rather than my usual prescription script. It’s not necessarily a major concern but now that my paraprotein (which is what they use to measure my myeloma) has gone over 10, the clinical trial has refused to keep giving me revlimid.

I’ve known the day would come but had sort of imagined that it was still a while away and that I’d see some more rises in my paraprotein first.

So, what does it mean? Well it seems that we’ll still be playing the waiting game for a while. If it only rises by 1 every couple of months nothing will change. However, my consultant has said that coming off the revlimid may result in my figures rising faster. If that happens, I’ll be back to treatment. Now that wouldn’t worry me normally apart from the fact he gave me the details for a new trial! Which suggests to me that he’s expecting me to need this treatment sooner rather than later! Although I hope I’m just reading into things.

I don’t really know how I feel. When he first told me I was very much thinking how lucky I’ve been to have this long in remission. How I shouldn’t be too upset as it’s all been so good. How I’ve benefitted in a way other myeloma patients can only dream about. But the last couple of days I’ve struggled a bit. Memories have come back of how much weight I put on from chemo … and even more, how wretched I felt after the chemo and the transplant. I’ve enjoyed so many years of being healthy, I don’t want to go back to that. I’m nervous of what it’ll mean for the family. For my netball and racketball. For my business. For everything.

IF all goes as well as last time it’ll be 2 years of treatment and recuperation. But I’m a bit scared to believe it will be that easy a second time. Myeloma doesn’t tend to be predictable and tends to come back differently each time.

But I know I’m getting ahead of myself. The next few months will be key to seeing how things progress. So keep your fingers crossed for us that the revlimid was more of a placebo than anything else, and that the next few months go ok.

While all this is going on we’re bang in the middle of renovating our house. In the week that this has all come up, not only has Nick been away but we’ve taken 2 walls down, pulled up 3 rooms of floorboards and pulled our downstairs apart! Still, it’s actually kept my mind off worrying so hopefully it’s been a good thing for it to be happening now.

Out in the cold

I just read an article mainly about the cost of Revlimid in the U.S.A. and the “games” that Celgene, the maker of Revlimid, has been playing in order to prevent it from becoming a generic drug.

The article tells the story of Pam Holt, a myeloma patient and retired educator, who pays $640 a month in order to take Revlimid:

Having myeloma is hard enough, but being forced to go into debt in order to have conventional treatments is simply OUTRAGEOUS.

The greed of these big drug companies has to be stopped…

I consider myself extremely lucky to live in a country (Italy) where nobody has to pay a cent for their conventional treatments. It should be the same in every country.

Dom is a Hurtin’ Little Cowboy

Well, gang-  This Velcade/Revlimid treatment has really clobbered him.

Over the course of 8 days, he was admitted to 2 separate hospitals overnight.

His neuropathy started traveling up his legs, just below the knees.

He gets extremely dizzy and almost falls down.

Blood Pressure is either very low or slightly elevated.

He’s seeing flashes of light.

He’s now walking with a walker.

His hands are starting to go numb.

You get the idea-  he’s a MESS.

So, his Slidell Oncologist took him off of Chemo.

We’ll be heading to Tulane Cancer Center soon.  We have an appointment for the 31st, but they’ll probably want him in there sooner.

(Thalidomide was like a walk in the park compared to this treatment!)


Dom is having a pretty rough way to go during this treatment.  Actually, Thalidomide was like a walk in the park compared to Velcade, Revlimid and Dex.

His blood pressure is all over the place.  He’s been on blood pressure medication for many years.  Our family doctor took him off of it while he’s going through this.

A typical morning:

Gets out of bed at 8 am.  While watching television, sitting on the couch, his blood pressure is 130/80.  GREAT.

Gets hungry.  Walks with his cane 20 feet into the kitchen.  Grabs a bite to eat, then hobbles back to the couch.  Starts feeling woozy.  Blood pressure has dropped to 60/something.

An hour later, blood pressure returns to normal.

He cannot function with these fluctuations.  He’s also getting flashes of color in his peripheral vision from time to time.

I’m doing all of the driving.  We’re both very tired.  Drive into Bogalusa, LA every Monday for lab work.  Velcade injections in Slidell on Tuesdays and Fridays.  Drive into NOLA to see Dr. Safah at the Tulane Cancer Center every couple of months. Monthly infusion of Zometa.  Here’s a look at this month:

So, we’re hanging in there and sure looking forward to finishing this treatment and get on with the transplant.

A Patient Update

Dom will be finishing his 4th week of Chemo on Friday…. then off for an entire week.

This Velcade and Revlimid have been tough on the poor guy.  His blood pressure got very low, so he cut way back yesterday.

Needless to say, heads exploded at the Cancer Center today.

So…. tomorrow, our ONLY day off this week, we’re headed BACK to Slidell to see our Dr. Culasso…  to get a handle on his blood pressure and our annual check-ups.

We have an appointment at our Tulane Oncologist, Dr. Safah on Thursday.  She’s the one who’s calling the shots.  Slidell is much more convenient for us, but Tulane will be harvesting the Stem Cells and performing the transplant.

Dom gets SO tired, has dizzy spells, has to lay down at times.  This has been rough on him.  The Thalidomide 9 years ago was like a walk in the park compared to this.  (Of course, he’s 9 years older, too!)

So… thanks for your continued prayers and positive vibes.  We’ll take whatever we can get!

All is GREAT Here!

Dom woke up, took his Revlimid and Steroids (Dex), and we drove into Slidell.  Got his Velcade injection and his drip of Zometa…. very quick… in and out in no time at all.

Our patient feels better than he has for a week.  Using 2 crutches today, but getting around well.  Even his voice sounds chipper.  Thank God.  (he does the steroids on Tuesdays…. I wonder if that has something to do with it????)

We have 2 days off.  Back to Slidell Cancer Center on Friday for Velcade shot, then off of chemo for a week.

Daughter Christine is flying in on Saturday.  YAY!  Fun, fun gal!

Our A/C guy was here for about 3 1/2 hours yesterday.  The old fella that wired this house had Alzheimer’s.  Apparently, he was confused with the air conditioning.  Our guy got it working and will return tomorrow to finish the job.

SERENITY NOW!  – Frank Costanza (Seinfeld)

A Progress Report- E.R. Visit

Dom started his Revlimid on Monday.  His hip felt OK…. hurt, but nothing horrid.

Went in Tuesday for his first Velcade injection…. in and out in no time at all.  Also took 5 Steroids.

Wednesday morning rolled around and he couldn’t walk.  Struggled with 2 canes.  Dr. Cal. told us to get to the ER in Slidell.

We were very impressed.  I’ve always been a fan of the “other” hospital in Slidell, but these folks were great.  Before they even got him in a room, they did x-rays and blood work.

Thank God, not a broken hip.  Cannot explain it.  Gave him a Percoset, then came back to our room to “give him a test drive”.  BIG DIFFERENCE!

Going locally for Blood Work tomorrow, then back to the Cancer Center on Tuesday for Velcade and ZOMETA for the first time in years…  (bisphosphonates to heal his lesion)

Zoledronic acid belongs to a class of drugs known as bisphosphonates. It lowers high blood calcium levels by reducing the amount of calcium released from your bones into your blood. It also works by slowing the breakdown of your bones by cancer to prevent bone fractures.

Had a very pleasant weekend.  I boiled up a couple of pounds of Shrimp yesterday.  My patient stayed in bed all day.  (as well as Thursday).

Today was a celebration of Father’s Day, as well as a belated birthday celebration for me.  Lobster Tails, Snow Crab, Sweet Corn and Baby Yellow Potatoes.