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.

IMM

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. 

Worcester Rd – the new pharmacy!

As I started this blog this morning I was taking a wide variety of drugs and cocktails!

  1. Daratumamab – immunotherapy drug
  2. Velcade – chemo drug
  3. Dexamethasone – evil drug – should not be allowed past go. Ruins relationship, friendships and more!
  4. Lanziprazole – protects stomach…I think
  5. Co-trimoxazole – godminly knows, I just take them and hope!
  6. Pregablin – reduces impact of neuropathy in feet, calves and hopefully is reducing pain in back.
  7. Colosevelam – deals with mile-bilemalabsortion – don’t look that condition up if you’re eating!
  8. conjugated oestrogen – for early menopause that kicked in at 35
  9. Sertraline – for the depression that can’t help but find a homely place in our house with everything else that is going on! My saviour

But today I’ve been joined to another regime. And today……drum roll……-another one is joining the ranks in the form of ZOPICLONE – a sleeping tablet. And it’s already made me spaced out and unable to hold a straight line! Hoping I’ll be ok for tomorrow as driving to oxford to visit my dad!!

I’ve also been given next week off velcade and Dex so we can have some time where I’m fit enough to do some things. Hurrah! Bloody fantastic! Might even have a little topple for new year!

But it made sense to try as I’ve only been getting between 1and 4 hours on a Monday with Tuesday slightly better at around 6-8 hours. But I feel awful between Tuesday eve and Friday eve and it’s miserable. If sleep is anything to do with it, I’d like to vaguely enjoy Christmas Day! We’re cooking for 6 but hopefully will be organised enough we can look to the guests to help nick to wash and clear!

  • Remember
  • Don’t overdo it – it’s only one day
  • If you burn anything hide it and pretend you never had it on the menu
  • If you burn anything remember you’ll be eating twice your body weight for 6 hours solid so will be totally grateful it was one less thing to eat
  • When you look at yourself the next day and wonder why you ate everything you knew will make you fat, and a month to get off the hips, please don’t bore us all with your plans for the gym!!
  • When you say ‘I shouldn’t’ when offered that extra drink….don’t if you really don’t want to …. but if you do….bloody do it!
  • Right I’m jibbering rubs is hand want these tablets to send me into a deep sleep! Wish Me luck

Anyway, can’t see me writing again for a few days so wishing all my friends, family and general subscribes a 🎄VERY HAPPY CHRISTMAS🎄

Holidays, Treatment plans and celebrations

I thought I’d make the most of my hospital day to update my blog.

It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.

I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.

It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it 😉 ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.

The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!

While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/

What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.

This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.

The Darzalex isn’t Working- Dom has a Broken Collar Bone

Hi gang-  it’s been pretty rough around here.  After 7 Darzalex infusions, they had to stop so that he could get radiation on his hip and both rib cages.

We LOVE his Radiology Oncologist, Dr. M.  This guy actually called Dom personally the other day and talked for about 15 minutes.  We’ve only had 2 other doctors do that.

The last time that we spoke to him, I said “Doc!  When he was diagnosed 10 years ago, it was a breeze.  Thalidomide, total body radiation and a stem cell transplant.  He was in complete remission for 8 years!”

Dr. M. said, “Dom-  you beat the odds, man.  You’re 10 years older.  The cancer and the treatment are kicking your ass.”

Sure enough.  Saturday morning he couldn’t lift his left arm.  Horrible pain.  He stayed in bed the entire weekend.  We called Dr. M on Monday.  He ordered a CT Scan for Tuesday.

He called Tuesday afternoon to say that the Darzalex wasn’t working and the cancer caused a BROKEN Collar Bone!

Dom was measured for radiation yesterday and had his first of 5 radiation treatments today.  He’ll finish up on Wed.

Then they have to figure out what to do for him.  He had originally told them “NO MORE CHEMO”.  Thus the Immunotherapy Darzalex.  We were SO hopeful.

I guess that they’ll try chemo again.  Dom doesn’t want to end up back in a wheelchair, as it is, he’s walking with 2 canes.

So, gang-  If you can find it in your heart, please say a prayer.

Back on the Rollercoaster

It has definitely been yet another rollercoaster over the past couple of months! After my last results showed an increase of 2, my February results were stable…..brilliant news of course, although I can’t really explain rationally why there was a small part of me was frustrated at the lack of pattern and the fact that my head seemed incapable of keeping up with the change of direction.

So I spent the next few weeks, trying to get my head around the fact that perhaps the rise of 2 was just a blip and that, yet again, I’d told too many close friends about it, when there was nothing wrong with me. Such an attention seeker. Such a fraud.

And then last month, my bloods came back having risen by 4. And I could tell from the tone of the email, that my consultant felt that this wasn’t good news…that and the fact he asked me to come back for bloods to check if it was an anomaly or whether we are dealing with a clear relapse. So yesterday I went back to have them redone and next Thursday, Nick and I will head back to find out more. That said, I can’t wait till then so have already asked to be told the results asap….and since 11am yesterday morning have therefore been watching my phone non-stop….argh!

I’m back to reading myeloma articles and starting to look into treatment options. There’s been some great news this week about a new drug being approved by NICE for first time relapse patients like me. So, I’m imagining that I’ll be deciding between that and going on the Myeloma XII trial …the first would be ongoing treatment, whilst the second would hopefully push me into remission again….who knows, maybe for another 8 years – but would make me severely ill for a while too.

I’m a bit all over the place if I’m honest. I just want to know if I’ve got to front into treatment and a new Stem Cell Transplant, or whether we can get on with things like normal. I can’t believe I’m back here. Back thinking about funeral songs, back thinking about what I can’t do if I’m back on treatment, back wondering about my ‘Bucket List’. It’s totally crap if I’m honest. I thought I’d got past all that negative thinking when I realised that I’d done so well with 8 years in remission. But now I’m back here, I realise it never fully goes away. The fears, the paranoia, the sadness.

Somehow I will get back to being my positive self. I think I need to get an element of control back to myself – that’s the worst bit about myeloma…you seem to lose all control. I don’t quite how I’ll do this….I’d like to get back into fundraising but I’m not sure how healthy I’ll be to do that, or exactly what I could do. If anyone reading this has any great ideas, I’d love to hear them. It really helps me take my mind off what is happening, but I need something that isn’t too stressful or too demanding if the chemo starts.

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 😦

Stem Cell Transplant 12 year -new birthday!!

It was a rainy day Feb 28, 2006, when I was admitted to Sutter Memorial Hospital Bone Marrow Transplant unit. It was a small unit of only 6 rooms.  Each patient is in isolation because of having little to no immune system working. Every day, a cleaner came in and did the entire room top to bottom. The nurses were the kindest and very experienced in their field. It takes a special person to be that nurse.

I can’t exactly remember but I think I was given the Melphalan that day, and then the stem cells are given either the next day or the day after.  It’s the Melphalan that does you in as it kills everything along with the hope it’s killing the cancer cells.  Then it’s the stem cells that actually rebuild your immune system and white blood cells. But first, you go thru white blood count dropping to close to zero, plasma transfusions as your red blood count is so low, horrible diarrhea, and on and on.

12 years ago today. I’m one of the lucky ones as my SCT did work and I had 4 years of remission.

But it was singularly the worst experience of my life. Yet, I’m grateful for the medicine, my doctors and transplant specialist, nurses and of course my family. They got me through.

So Happy New birthday to me.

Dom’s October Numbers

WBC:   6.7

RBC:   3.41

HTC:   32.9

PLATELETS:   307

Free Light Chains:  ALL NORMAL

Kappa:  1.44

Lambda:   1.32

Ratio:  1.08

M-Spike:  0.3  Dropped from 0.5 in April after just a couple of rounds of Rev/Dex/Vel
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Dr. Safah cut him loose until after the First of the Year.  She wants him to continue physical therapy.  (Which is going great!)  He used his walker in our house for the first time…. walked 200 feet!

The Zometa has shrunk the lesion on his hip.

She’s very pleased with these latest numbers.

I’m hoping that in January, she’ll tell him that he doesn’t need any more chemo or SCT.  This was just a single Plasmacytoma on his hip.  His blood and bone marrow are clean.

Dom’s Cancer is Back

Well, gang-  after complete remission for over 7 years, his MM has returned.

His blood work and bone marrow biopsy showed absolutely nothing alarming.  His hip had really been bothering him, so Dr. Safah ordered an MRI.

We went to see her on Thursday, fully expecting yet another clean bill of health.

NOPE.

The MRI showed a 9.3-centimeter lesion on his left hip.  (Measures 3.66 inches in diameter).

So, she calmly announced that he was to stay off of his tractor, watch how he sits down, etc.  She’s afraid that he would suffer a broken hip.

Then went on to say that she was ordering 10 radiation treatments, 2 months of Chemo and ANOTHER Stem Cell Transplant.

Needless to say, my eyes filled with tears.  She smiled and sweetly said that she wasn’t the least bit concerned.  He did so well last time and remained clean for so many years….. that he would breeze right through this.  She said that this time it would be much easier on his body.

We met with a Slidell Radiologist doctor and our Slidell Oncologist on Monday and Tuesday.  The Radiology department did a CT Scan and tattooed his hip.

Our Slidell Oncologist said that he suspects that this is a Plasmacytoma, as his bone marrow and blood wasn’t the least bit alarming to them.

Radiation begins tomorrow.

This time around his Chemo will consist of Revlimid, Velcade, and Dexamethasone.

My tears have ceased and we’re both very confident with our new team.  Dr. S. from Tulane told both of these Slidell doctors that he would zip right through this process.

After Radiation and Chemo, they’ll gather his Stem Cells and the transplant will be done in New Orleans at Tulane.

This is all happening very quickly.  We walked around in a daze all weekend but hit the ground running on Monday.

Understanding Multiple Myeloma

NAPSI)—You may be surprised to learn that multiple myeloma is the second most common cancer of the blood, after leukemia. It starts in plasma cells, a type of white blood cell. In time, myeloma cells collect in the bone marrow and may damage the solid part of the bone and eventually harm other tissues and organs, such as the skeleton and the kidneys.

In fact, there are approximately 114,000 new cases diagnosed every year. If you or a loved one is among the 230,000 people living with multiple myeloma worldwide there are a few facts you should know.

What Can Be Done

For many people with the disease, an autologous stem cell transplant may be an answer for eligible patients. This involves collecting the patient’s own blood-forming stem cells and storing them. He or she is then treated with high doses of chemotherapy or a combination of chemotherapy and radiation. This kills cancer cells but also eliminates the remaining blood-producing stem cells in the bone marrow. Afterward, the collected stem cells are transplanted back into the patient, so the bone marrow can produce new blood cells.

To help people learn more about the disease and its treatments, the Multiple Myeloma Journey Partners Program was created.

This peer-to-peer education program for patients, caregivers and health care providers leverages storytelling as a tool to improve the patient experience. Journey Partners are multiple myeloma patients who have experienced similar emotions, faced the same challenges and asked the same questions about living with the disease. A Multiple Myeloma Journey Partner will come to any community in which 10 or more people would like to attend the free one-hour educational seminar. The main benefit is that multiple myeloma patients know they’re not alone, and the program provides educational resources and services that help patients and families navigate their journey to achieve the best possible outcomes.

As John Killip, a Multiple Myeloma Journey Partner, puts it, “It was conversations with my support group, family and health care providers that influenced my decision to have a stem cell transplant in 2008, when I was first diagnosed with multiple myeloma, at the age of 65. Mentoring other multiple myeloma patients is one of the highlights of my life. I became a Journey Partner to share my story and help others with the disease make sense of the diagnosis and overcome the fear of the unknown.”

Learn More

For more information or to request a program, you can visit www.mmjourneypartners.com. Anyone interested in becoming a Multiple Myeloma Journey Partner can contact the program coordinator listed on the website. The program is sponsored by Sanofi Genzyme, the specialty care global business unit of Sanofi focused on rare diseases, multiple sclerosis, immunology, and oncology.

http://www.caswellmessenger.com/online_features/health_and_wellness/article_388d11ff-d51b-5f54-a633-460f11e3122b.html