Coming out of the cancer closet…

This post is for my real life friends who I wish to ‘come out’ to as opposed to regular myeloma blog followers. Since my diagnosis, I’ve ‘come out’ on numerous occasions and it is really really, really emotionally challenging to do … hence the communal message.

First of all, my cancer is not public knowledge. My concern is to protect my children from knowing and give them a normal childhood for as long as possible. So, please honor this and do not share this further (especially if you ever have the pleasure of meeting my children).

So, how can it possibly be that my children do not know that their mum has cancer? Well, it is complicated! Basically, I have been living with cancer since 2014 and have not had any treatment yet since the cancer is not causing any damage.

I have asymptomatic multiple myeloma. Multiple myeloma is the second most common blood cancer (which is weird since pretty much no-one has ever heard of it!) It is also incurable and most people die from it within 5 years (I saved you a trip to Mr. google).

Basically, my cancer was caught early (which is a very good thing in other cancers). But unlike Angelina Jolie, who had the option of a mastectomy and removing her ovaries to prevent it developing, there is nothing to prevent myeloma developing to a stage that does need treatment. You cant chop your blood off.

My ‘treatment’ is called ‘watch and wait’ (better known as ‘watch and worry’) which means regular checkups and tests to keep an eye on things to make sure nothing gets out of hand without noticing.

Myeloma, while incurable, is treatable with drugs. So why am I not being given the drugs that symptomatic myeloma patients get?! I totally understand why people cannot comprehend that you can be diagnosed with an incurable cancer for which there are drugs and they don’t give them to you! I often question this reality myself!
My explanation is that the drugs available aren’t great and don’t work for very long or provide a cure, so they prefer to save them for when you really need them – for when you become symptomatic and the cancer is doing damage in your body (bones breaking, kidney failure etc).

They have tried the drugs on other people with asymptomatic myeloma (more commonly known as smoldering multiple myeloma or SMM) and they do not provide a survival benefit, so why take drugs that have numerous side effects if they do not help?

So, why am I even sharing this? Well, there are a few reasons – one if which is raising awareness. A significant number of myeloma patients die soon after diagnosis since they were diagnosed too late – the typical symptom of backache is so common that myeloma is not on the doctor’s radar, plus it is so rare that doctors wont even consider it from just a backache. However, while I’m all for raising awareness, I think the chances of me doing something that will help another person discover they have myeloma is negligible, so I’m not doing this solely for awareness.

The main reason I am sharing is because there is so much dishonesty involved in keeping this ‘secret’. I’ve reconnected with old school and university friends via social media and if I do not share this secret then any in-depth conversation about ‘what have you been up to for the past X years?’ is very false and I tend to avoid social interactions.

I’ve lost count of the number of seemingly insignificant comments from people that are so significant to me. Literally, I have had a few uncomfortable situations similar to the following: I went to an oncologist at the hospital and bumped into a friend (who knows my kids and therefore isn’t someone I wish to share with) who works in the hospital. She asked what I was doing there…. “I’m going to visit someone in hematology.” She pulled a sad face and said something to the effect of “hematology? That’s really not a good place to be!” ‘Yes, thanks for that,’ I wanted to scream!!!

Since my diagnosis, I’ve seen 2 similar aged Facebook friends posting about their partners being diagnosed with cancer. Having ‘been there done that’, I know that it makes a world of difference to get input from people who truly understand what you are going through. So, if this ever were to be relevant to you then keep me in mind when looking for emotional/practical support.

Also, I have been taking medical cannabis for a couple of years, and am happy to share my experience since cannabis seems to be all the rage today.

That’s all for now.

Looks like THC will be joining the CBD….

I had my regular 3 monthly check up with my myeloma specialist a few days ago. There were some semi-interesting things about the meeting:

I asked her if there might be any collaboration with the Dana Farber Blood Cancer Prevention of Progression Clinic specimen collections since Dr. Irene Ghobrial had been in Israel for the recent Amen annual conference. My doctor said she was flying out to Boston the very next day to discuss collaborations with her/them. I often wonder about how Israel is involved in the day to day developments in the myeloma world that I read about online, so I found this very encouraging and reassuring.

In the same vein, I also asked her if there were any doctors in Israel who specialized in smoldering myeloma. She said no, but she told me that Dr Mateos from Spain was coming to Israel shortly and suggested that I could try and arrange a consult with her. I am not going to pursue this idea, but again, I find it very reassuring that we are on the map and up to date.

My doctor commented that I am looking well. I’ve had this a couple of times in the past few days – it seems my ongoing diet is doing good! I am a few kilos less on the scales, but for a month no-one noticed at all. I’m enjoying my super healthy eating, so all is good on that front.

Anyway, I told my doctor about my improved diet, and I also said that I have been taking the cannabis for 3 weeks already. She asked why I was taking it and then recalled that it was because of the research she was doing (as opposed to suffering from pain etc.). She said that the lab research work she had done had shown the best results on a ratio of 1:1 for CBD and THC. She also asked how I chose CBD only and asked about the doses and formulas available from the cannabis supplier. I find it a bit weird that she doesn’t know this information already – I would imagine that she has patients who take it for pain purposes, so I am surprised this hasn’t cropped up.

Next time I collect my cannabis (once every month) I will get some THC and try that. I’m not looking forward to any high from it, so we’ll have to see how this goes.

For someone with SMM for 1 year, 6 months and a matter of days (but who’s counting?!) I’ve never really understood what my M-spike is. I have asked my specialist about it before and she didn’t answer the question (probably since the question I asked wasn’t the right question!) but instead explained that the important thing to track for me was my lambda light chains.

Anyway, I asked her again what my M-spike is at this meeting. She looked at my chart and said I am light-chain smoldering. I asked her if that was accurate since my immunofixation shows IGA lambda. She pointed out that my IGA m-protein is too small to quantify.

I had a consult a while ago with a different myeloma specialist and she said I was similar to a light chain smolderer – but was not strictly one since I do not fit the text-book definition since my IFE is IGA lambda.

My thinking is that either my IGA hasn’t ‘blossomed’ yet and I am truly IGA lambda, or that I am truly more light-chain inclined. I have read a fair bit on the light chain smoldering issue and as far as I can recall, the level/rate of progression is lower than non-light chain smoldering, so I’ll stick with the idea of being nearly light-chain smoldering – even if it is only wishful thinking.

I referred to the Amen annual myeloma conference at the beginning of this post. Gareth Morgan (head of UAMS in Arkansas) was the guest speaker. Actually, his speech was very short and he talked more about Wales than myeloma, which I found disappointing since I’m sure there were more useful things to talk about. Anyway, he had been in Israel for a conference the day before which was for myeloma doctors as opposed to patients (this is the same one that Dr Ghobrial attended). So hopefully lots of important medical things were discussed then. I kind of wish I had attended that meeting….

My mum was visiting me and my family in Israel so I took her along to the Amen conference. We both knew that she would find it dull since it was a Hebrew language event and she doesn’t speak the lingo, but I wanted her to see that it wasn’t a miserable, depressing conference full of ‘sick-looking people’.

Seeing as there were only a handful of non-Hebrew speakers in the room, I made sure to introduce my my mum to Dr. Morgan and ask him a couple of questions.  We also got to speak with his (lovely) wife (who I didn’t know was also a myeloma doctor).  She was very nice and told me that she was setting up a clinic for the ‘rare breed’ (as she put it) of younger women with myeloma (encompassing other areas that are relevant to them such as gynaeological issues, which aren’t relevant for men or are less relevant presumably for much older women). She also suggested joining the online community (which I am part of and truly appreciate).

My next appointment isn’t until mid-October and I will do blood and urine tests sometime after mid-September. I guess that will give enough time to assess if the cannabis is having any positive affects on the myeloma, but I hate having to wait so long…

Medical Marijuana begins…

The same day as doing my regular myeloma blood test (my doctor let me off of doing a 24 hour urine test for once – hurray!) I started taking medical marijuana – this was on June 9 2015. I don’t suppose I will be doing another blood test for another couple of months, so I wont be able to get / share any feedback on that for a while.

I discovered two things – firstly, it tastes fairly revolting – the taste of a tincture. It isn’t unbearable though. Secondly – it isn’t very easy to put two drops under your tongue! For a start – I can only manage to do it in the mirror so I see exactly how much I am dripping into my mouth and secondly – how do you ensure that it stays under your tongue?! I searched on the internet and found some useful tips – make sure your mouth is dry beforehand and tilt your head forward in an attempt not to swallow it .

I increased to 3 drops (twice a day) on 16.6.15, and will be increasing by one drop weekly. I don’t see how it will be possible to keep 9 drops under my tongue, but that is weeks away….

I felt no high whatsoever from it, which I am pleased about.

I have also made two changes that might impact upon my next lab results . When I got my labs back from 9.6.15, I was found to have low WBC (normal for me) and low RBC (not normal for me), and low iron (I’m not sure of my previous levels). I went to my family doctor and she recommended taking an iron tablet. The first day I took it I suddenly had an increased level of energy, and realized how drained I have felt of late.

The second change I have made is to go on a super strict diet. I cut out all ‘bad’ things a while ago, and have made my diet much healthier over the past year or so. But I have been so disappointed that having replaced junk food with healthy food that I lost zero weight. The only thing I could attribute it to was to eating too much dried fruits and nuts, both of which are healthy – but full of calories.

Anyway, since 28.5.15. I have cut them both out, and also bread. I have been eating the same thing pretty much on a daily basis and after three weeks I am feeling quite bored! My daily diet has consisted of: poached chicken breast or egg or tuna and bulgarian cheese (bit like feta) as my protein source. I’ve supplemented that virtually every meal with: lettuce, cucumber, broccoli sprouts, carrots, cabbage, red peppers, celery, spring onions, chives, balsamic vinegar, lemon juice, basil leaves and curry powder( yum!). Sometimes I’ve had sweet potato, fennel and cauliflower. I’ve also eaten a variety of fruit – but I’m trying not to overdo it. So far I have lost a couple of kilos in three weeks – no big deal for a very restricted diet. But for someone who has always found it very hard to lose weight, I am most pleased about that.  (I need to lose another few kilos and then l will reassess the situation).

Since my smoldering myeloma diagnosis I have made my diet better but I have always been procrastinating about losing weight. My new diet coincides with my friend dying. There are two reasons behind it – the first is regarding her as an inspiration and encouragement – her life was never so easy and she made the best of things. The second is a feeling of being terrified that the same will happen to me and the realization that I can no longer procrastinate about this since who knows what tomorrow will bring?

 

Missing my friend

Someone close in my life died this week. She was the mother of my daughter’s good friend, and my daughter was close to her too. I miss this very special lady, and am heartbroken for her child.

Breaking the news to my daughter was awful. Their school teacher had advised telling the children in the child’s class that it is very rare for this to happen, and that is the message that my husband passed along when he told our daughter that she had died. (While I like the message that it is rare for such a thing to happen, I am thinking that it wouldn’t be so out of the question for such a rarity to happen (to me) in the near future.)

Not to belittle my sadness for my friend, but there are some particular things that trouble me as someone with a smoldering myeloma diagnosis.

First of all, my friend had had cancer for a few months. I was hoping to one day cite her as an example of a cancer survivor story if/when I have to break the news to my children of my own cancer. After all, if someone dies of a cancer that is potentially curable, what hope can be portrayed to a child for someone with an incurable cancer?

Secondly, her child attended her funeral (which I think was very important for her child to do). I am 4 years younger than she was when she died, and my youngest daughter is 2 years younger than her child. Will I die younger than she was, and more importantly, might my youngest have that same terrible terrible experience that her child had at an even earlier age? (Of course, if that were to happen, my eldest wouldn’t exactly be old enough to not have it seriously impact her future.)

I posted about my friend before and my dilemma about whether to tell her I have smoldering myeloma. She had coped so well with treatment and had such a positive spirit from day one that I rarely felt telling her would be of any use to her whatsoever. The last time I saw her she was worried about new pains that had started and she began to cry and was at the end of her patience. Shortly after, she was ‘prescribed’ a different sort of chemotherapy and she told me that her doctor was very optimistic. Just before she was due to do the first treatment she was hospitalized in a very bad way (kidney failure). I think it was clear that if she wasn’t able to start the treatment she wasn’t going to survive. She got through the very bad situation and did manage to do two treatments. but it became clear that the treatment wasn’t helping at all and she was in such pain that she decided to stop the treatment.

And during those last weeks again (after I witnessed her cry) I wondered about telling her about me. My only intention would have been to let her know that someone else understood what she was going through. And yet the truth of it is that I had little idea of what she was going through having not physically suffered pain from myeloma and having not had to endure treatment.

The only thing that I could really relate to is the terror that you will leave your child motherless at far too young an age for them. I know that other people can empathise/appreciate this terror, but I am sure that feeling this terror is different. However, as much as I worry about my future, I do not believe that I am going to die of myeloma imminently. So during the recent weeks when it might have been relevant for me to share with her, maybe I could also not relate as much as I think I could have. I do not regret not telling her about me. I wish I had been a better friend at the end, but I didn’t think it was actually going to be the end, and I wanted to give her the space she needed since I knew she wasn’t feeling well, and I understand that often people want more space than they are given and feel pestered. I should have sent more texts when I knew she didn’t have the energy to talk.

My friend faced a number of challenges in her life apart from the cancer. She embraced them in the most positive fashion that was possible, making the very best of some complex situations that would have been so easy to simply walk away from. I am feeling very inspired by her. And I miss her. Bye K. Kisses and cuddles.

Medical Cannabis

Finally I had my meeting with Tikun Olam, Israel’s largest supplier of medical cannabis and also the supplier that works with the hospital where my myeloma specialist is based. (My specialist is doing research on myeloma and cannabis in conjunction with Dr. Alan Shackleford, famous (or infamous maybe) for Charlotte’s Web.)

The meeting consisted of a nurse going through my medical status, going through a long list of potential symptoms I might be suffering (to most of which I answered ‘no’) in the attempt to find the ideal type of cannabis to take, and then explaining how to take the cannabis.

Since I work and have young kids, I am not interested in getting high at all – my aim was to get CBD and not THC. My husband, who had to accompany me since I was supposed to be trying the cannabis during the meeting (something which didn’t actually happen), is extremely worried about the potential of me being high and not functioning, and his concerns were somewhat allayed by the fact that I could receive mostly CBD and therefore not experience a high, as well as explanations of what a high would involve (i.e. I’d still have the ability to function and would just be a bit ‘out of it’).

My medical license authorizes 30 grams each calendar month. I can choose whatever format I want and whatever combination of THC and CBD etc.

I now have 3 bottles of oil which each contain 10 grams of medical cannabis.  The label says 3% CBD and 0.3% THC. This is apparently as low as the THC goes. Each bottle contains about 280 drops and has a 1 year expiration date.

While I have just CBD – which is exactly what I wanted – I am concerned that CBD might not be (so?) effective without THC, but that issue will come at a later date. I’ll get started with CBD and see what happens…

Taking the oil:

Shake the bottle

Drop the oil under my tongue

Keep it in my mouth for 10 minutes without eating or drinking

If it is too bitter to do this, then put it on a spoon and swallow it with some soft quark-like cheese.

I’m not to take it on an empty stomach, and to be aware that it can easily make me thirsty (therefore to drink), and to beware of low blood sugar and low blood pressure after taking it.

Dosage

Week 1: Take 2 drops 3 times a day

Week 2: take 3 drops 3 times a day

Week 3: take 4 drops 3 times a day …

and so on up to 9 drops 3 times a day (which will use up all the drops in my allowance).

If I get a high feeling (since there is a limited amount of THC) at, for example, 5 drops, then I should only take 4 and not continue to increase to a higher dose.

Driving

Israeli law states that you cannot drive for 20 days after taking cannabis. Obviously this is a problem! The nurse implied that the law might change since it doesn’t accurately reflect the dangers of a cannabis high and driving. Hopefully I wont even have any high from it, so would I be a danger to drive? I’m not going to take that risk and due to needing to drive to certain places, I am not planning to start taking it for at least a week, and possibly not until mid-June.

Another reason I am happy to delay is that I am also contemplating getting bloodwork done before starting so that I can monitor if the CBD does anything. I asked the nurse during the guidance meeting at Tikun Olam if there was anything that I should monitor to see if it works and the answer was a predictable no.

Incidentally, while waiting for my appointment I was reading the company’s brochure. It said that Tikun Olam (whose name literally means ‘fixing the world’ and is a known concept in Judaism, and might best be explained as philanthropy) used to provide medical cannabis for free to people who needed it, which I think is wonderful but my cynical husband explained away as their way of being allowed to grow cannabis without the law acting against them.

Now there is a government imposed charge for all medical cannabis recipients of 370 shekels (just under $100) each month regardless of the amount prescribed. I wonder how that compares to prices overseas?

My license

It took about a week for my license to come through from the government after my doctor filled in a short form to apply. Apparently that is ridiculously fast (e.g. people sometimes die before the license comes through), and the nurse said that I am very lucky to have a doctor who prescribed it at all since many doctors wont prescribe it unless someone is dying imminently.

I also don’t think I should have been granted a license by the government since it is not supposed to be given unless you have exhausted all other options. While I don’t think it is necessarily as strict as requiring someone to have exhausted all options in reality, I haven’t actually exhausted any options. So I’m feeling very lucky to have been given the license.

So many things have turned out lucky with this: getting a license in the first place, getting it so quickly, my doctor doing research on myeloma and cannabis, getting CBD and not THC….  I guess the big lucky question is: will it work?!

The highs of myeloma

When I first discovered I had myeloma, my cousin told me to try cannabis oil (he’s convinced it is THE cure to cancer).   I put it on my (long) myeloma-to-do list – not considering myself as very into ‘alternative’ medicine….

From the various myeloma lectures I’ve attended over the past year, I’ve discovered that medical cannabis is pretty advanced in Israel. Both in terms of use (I recall that the number of authorized users is about the same as a country that is ten times as large as Israel), and in terms of research (dating back to Raphael Mechoulam’s discoveries decades ago).

A few months ago, I arrived at the decision that it wouldn’t hurt (presumably) to try medical cannabis and maybe, just maybe, it might help, so started inquiring about what it entailed.

I added a couple of questions on the subject to my list of questions for my doctor to ask at my next appointment, and was feeling embarrassed and hesitant about asking, and not even certain if I would ask her about it. Then – just a few days before my appointment, the news broke that my doctor was going to do research into myeloma and medical cannabis. This stopped any hesitation in raising the subject of course.

I told my doctor that I had heard about her research and asked if they would be doing any research on smolderers. She seemed pretty surprised that I knew about her research and said that testing on smolderers might be a good idea, but at this stage they were just doing lab tests on cells. She expected that it would be a year before her research would progress.

She said she had no problem authorizing a license for me for medical cannabis. She explained that its effects might affect my work and that I couldn’t drive for 20 days after taking it (serious problem!). My paperwork was sent on to the government health office and I have been given a license for 30 grams per calendar month until the end of September.

I am awaiting a guidance meeting with the cannabis providers, in which I will get a greater understanding of what the options are – smoking (no way!), vaporizer, chocolate(!), pills (my preferable format). I was told to bring someone to accompany me to the guidance meeting so I can try some cannabis and therefore might get high.  I am not interested in getting high at all! My ideal situation would be to take a tablet at night and wake up without having experienced any high (and that magically during the night, the cannabis has destroyed some myeloma cells!) I don’t sleep well, so I am hoping that cannabis might help in that respect.

I would imagine that most people who take medical cannabis do so to relieve pain and therefore want the effects 24-7. I am in no pain whatsoever. (In fact, when the nurse handed me my license she was in disbelief that I was authorized a license since I have no pain and am undergoing no treatment. she told me, “I am going to check with the doctor about that…”)

So, what do I hope to achieve from taking medical cannabis? Obviously, top on my list is total destruction of my myeloma cells! A smoldering friend relayed the following story to me about a year ago, “after diagnosis, I went super healthy – doing sports and eating healthy food etc. I naively thought that my myeloma would disappear….” I thought and hoped the same thing – so far I’ve tried a healthy lifestyle and incorporated a lot of curcumin (without seeing any benefit in my blood test results). So realistically, my best hope is that medical cannabis could stop any further progression of my myeloma, and maybe, just maybe, reduce it a bit.

I’m very appreciative of the various myeloma support groups on Facebook, and have seen a lot of interest from others. Therefore, for anyone reading this and trying to compare it to their myeloma journey here are some general facts about me:

I am a 43 year old white female diagnosed with smoldering myeloma in January 2014.

I’m IGA lambda. I did a BMB in October 2013 – it showed 30% myeloma cells.

IGA – in the normal range, towards the higher end of the range

Lambda flc in serum – 263mg/l (normal is 5.71-26.3 mg/l)

Kappa flc serum – 14.4mg/l (normal 3.3-19.4 mg/l)

Ratio – serum – 0.05475

Lambda light chain in urine – 1.02 mg/dl (normal 0-0.39mg/dl)

Proteinelectrophoresis does not show an m-spike

Immunofixation shows IGA lambda

Hemoglobin – 11.88 g/dl (normal 11.7-16g/dl)

Albumin – 4.5 g/dl (normal 3.5-5.2g/dl)

Creatinine (blood) 0.55 (normal 0.51-0.95mg/dl)

Calcium (blood): 9.4mg/dl  (normal 8.1-10.4)

 

I was taking 6 grams of curcumin daily for a long time. I’ve recently changed to taking 3 grams of curcumin c3 in the morning and taking 2 grams of meriva curcumin (doctor’s best curcumin phytosome featuring meriva) later in the day. I take it with fish oil, and also take a quercetin (250 mg) & bromelain (125mg) tablet each day. I take 5 drops of vitamin D daily too.

Secrets & Lies

The other day I had ‘the cancer’ conversation with my 9 year old. Thankfully it wasn’t ‘that’ cancer conversation where I break the news about my diagnosis. She asked if she could talk to me in private and then told me in a wide-eyed sort of whisper that one of her close friends’ mum has cancer. I was glad to be given the opportunity to portray the message that cancer can be cured (especially since the incurability of myeloma is something that completely bothers me), and we talked about how one of her grandpas died after suffering from cancer for a long time, while her other grandpas had cancer and is ok now. I was so worried that she might ask ‘will you or dad get cancer?’ and how I would lie, but thank goodness that idea never crossed her mind.

Anyway – the point is that a close friend has recently been diagnosed with cancer. And she doesn’t know anything about my myeloma diagnosis.

Many years ago I had a male friend who came out of the closet and explained that he assumes that everyone else is gay until or unless proven otherwise. So, a few weeks ago, when my close friend started to feel unwell and the feeling of not being well continued longer than normal, I assumed that she had cancer. Unfortunately, my assumption turned out to be true, and she is now undergoing treatment.

I ummed and aahed about telling this friend about my diagnosis. She is a friend of mine due to our children’s friendship, and no-one in that scene knows about my diagnosis (except for one mum whose son is in the same year at school and who I met at a cancer support meeting, but I trust that she will not divulge my secret). I don’t think that I care really if people know or not – but the one thing that I am certain of is that I do not want my children to know. If I need to start treatment then there is no choice but to tell them. But for now I want to save them from knowing and worrying. (Strangely, a social worker and a psychologist have both advised me to tell them – their explanations were based on the fact that it is not healthy to keep secrets and also that they must have sensed something going on over the past year.)

I felt very alone at diagnosis. A feeling that no-one really understood (though, I obviously don’t question that all the people I shared with had some semblance of an idea!) I found myself keenly sharing my ‘news’ with a couple of friends my age who had gone through cancer with their partners.

So when my friend was diagnosed with cancer, I really wanted to help her and support her and let her know that someone really understood how she is feeling. And yet I was so concerned that if I told her my ‘secret’ it would somehow come out publicly. I know this sounds like I don’t trust my friend – but I think more to the point is the fact that I don’t really trust myself! I constantly worry that I am going to leave some paper from the hospital out, or that my daughters might open a letter from the hospital or support group and start asking questions, or that they will overhear a conversation they are not supposed to hear.

As it turns out my friend is apparently accepting her diagnosis with no great emotional trauma, and I don’t think that hearing of my diagnosis would be of benefit to her in any way. She is far more dignified than I was! My own myeloma confidante has commented in the past that she thinks I handled my diagnosis so well and calmly etc. but it is quite clear that I didn’t! I’ve pretty much adjusted to my new normal now though I think, but I am sure that I will be an emotional mess if/when the myeloma advances.

The day after my friend was diagnosed I saw her alone, which is unusual since we are both normally in the presence of our kids so we got the chance to talk. She commented that so many people have cancer and you just wouldn’t know about it. I sort of laughed and said how right you are. I hope not to be able to reminisce that story with her for many many many years…

I have another excuse for not feeling like a really crappy friend by not telling her. If I told her, perhaps she would not feel like she could ‘use’ me if she needs help with something – not wanting to burden me either. This isn’t a very worthy excuse but I think it is actually true.

The issue of who to tell is so complicated. An old friend got in touch via Facebook earlier this year and she started asking how I was, about my life etc. I evaded the questions at that time since it was during the conflict in Israel and I was too busy, but I chose to write to her last week and explain to her that it feels so dishonest (and pointless) to tell her lots of little things about my life and fail to mention one very big one that has affected my life in so many ways (despite not doing treatment!).

She lives in a different country and there is very little chance that I will actually see her in person and that my secret could come out in front of my kids, so it also felt safe to be able to tell her.

Stress

Its July 2014. Israel is in the depths of a war that has no winners. While it might seem on the surface that it is a war over a tiny piece of land, it is far more complex than that. This is the one of the battles between extremist Islam and the western civilization. I can imagine how ridiculous that must sound, and don’t expect you to see it now, but you will one day. (And if the myeloma gets you first, then your children will one day get it.)

I’m a soldier and a civilian in this battle.  I’m not in the military but I fight with words. I hope to be able to share one item that I wrote in this blog soon, which really sums up many of my feelings over this conflict.

I am passionate about my pro-Israeli activism. I’ve been an activist for well over a decade, giving it up twice for long periods when I was pregnant and it was too stressful and unhealthy.

When I was first diagnosed and learned that stress is not good for anyone’s health, I made a conscious decision to stop my activism. I had to do it for my own health.

But my life is being threatened by Islamist extremists who fire rockets at my city, who fire rockets at my children’s school. I cannot publicly describe the trauma of being stuck in the middle of nowhere with my young daughter during an air-raid with nowhere to hide, terrified that a rocket or a piece of shrapnel from one might get us. I protected her with my body, and the terrible booms of the explosion were so loud that I shook for hours afterwards. And now I protect my children and our home with words.

I am under a huge amount of stress. I am not eating properly, not sleeping properly and there is only one thing on my mind: When will this end?

It is clearly not healthy for me. There is one benefit though – I haven’t given myeloma a second thought. All the little aches and pains that I felt and worried that my myeloma was progressing are gone.

I hope the results of this stress do not show at my next hospital appointment.

Amen to that!

There is a support group for myeloma patients and their families in Israel and it is called, suitably, AMEN.

Amen has been around for a few years, and is highly active. In an interview on myeloma patient radio, an Israeli interviewee said of Amen – “they’re very, very strong here in Israel. I think it’s the strongest patient group in general in Israel; very well-organized.”

As a doctor I imagine he has a better idea of how Amen rates against other patient support groups than I do, though I do find it hard to believe that ‘popular’ cancers such as breast cancer (which has huge exposure worldwide) don’t have more active support groups, but that is by-the-by.

For a cancer that is said to account for just 1% of cancers, it is amazing that Amen even exists in Israel, which is a pretty small country. I think there are just a couple of thousand myeloma patients in Israel.

The week when I was first given the diagnosis of ‘suspected multiple myeloma’, Amen had a myeloma campaign on the website of one of Israel’s main newspapers, featuring various people’s personal stories. That is a great achievement to get such exposure.

Amen holds an annual conference and I attended my first one in May 2014. It was very impressive, and foreign speakers were Dr Donna Reese from Canada, and the CEO of Myeloma UK.

Amen also hosts monthly support group meetings with speakers on various myeloma relevant subjects. I really appreciate the support meetings – not just learning about different issues, but seeing a room full of myeloma survivors and hearing of their experiences. In general no-one looks ill at the meetings, and there is a regular attendee who is a 20 year survivor – far surpassing the typical survival statistics.

I am the youngest person there, which is an ‘issue’ for me. I tried attending a support group for young women with cancer, but it wasn’t the right support group for me.

I live very near to where the Amen meetings are held. In fact, my children’s school is in the next building. Arriving at and leaving the cancer center building is traumatic for me every time. I shouldn’t be going to this building – I should be going to the school or from the school only. It all feels so wrong every time I go.

I’ve even had to sneak round the school building so that my children wouldn’t see me on my way to attend an Amen meeting! And I’m always cautious of being seen by other parents I know going into the cancer center (since most local people I know do not know my diagnosis).

At the first Amen meeting that I went to I had the trauma of meeting a friend I’ve known for well over a decade who is currently on treatment for symptomatic myeloma. This traumatic moment gives me the shivers each time I recall that moment.

The next myeloma meeting I went to the guest speaker was my neighbor who I’ve known for a decade. When she saw me there she asked me how Amen had advertised the event – had they sent out an email.

No ‘what are you doing here?’ or any sort of acknowledgement that my presence there was out of place. I wanted to give her the benefit of the doubt that she was surprised and didn’t know what to say on that occasion, but I’ve seen her countless times since then and she has never said anything. I think that is pretty nasty behavior.

(No traumatic Amen meetings since then.)

Amen operates a support line via email and phone, with myeloma patients volunteering their services. Amen also funds a research project into myeloma each year. Amen has worked hard to get myeloma medicines into the medical basket in Israel. Their work is very impressive, and I am very grateful.

I truly say Amen to all that.

6 months since smoldering myeloma diagnosis

So now its been six months since diagnosis. I’m much calmer than a few months ago. I’ve spent a lot of time learning about myeloma and treatments  etc. But I’ve come to a stage where I know enough. Hopefully it will be a long, long time before I need treatment and hopefully by then a cure can be found, and if not, then more drugs and more effective drugs can be found.

I’ve heard it so many times that advances in myeloma over the past decade have surpassed advances in all (or maybe most) other cancers. I hope it continues to be that way.

The statistics say that 1% of MGUSers go on to develop myeloma. They also say that the progression to active myeloma for an average smolderer is 10% per year for the first 5 years, and then 3% for the next five years and then 1% after 5 years. Theoretically one can smolder forever, though the most I have heard of is about 15 years. But there are all sorts of risk factors, and I have at least 2 risk factors – namely IGA lambda type myeloma as opposed to the more common IGG kappa, and an abnormal free light chain ratio (FLC).

My mum and I went for a 2nd opinion with a different myeloma specialist, and she said she can’t see me progressing for 2 years. Whether she meant nothing will change in the next 2 years (and it might not change after it), the preparing-for-the-worst pessimism in both of us heard “in two years you will progress”!

At the moment I am going for checkups every 3 months. For the few weeks before my appointment my lower back hurt (a myeloma symptom). I have never suffered from back pain, though a CT showed lots of disc problems (which most people have apparently). When I did the CT they also found a growth on my adrenal gland. Follow ups have not indicated that it is anything more than an incidentaloma (seriously, what brilliant doctor thought of the name incidental-oma?!) which is benign. But I have had some pain in the same area from time to time, including prior to ever hearing of MGUS so I know I’m not making that up.)

The day before my most recent appointment I got myself into a total panic. I had been assuming until then that the pain was from the adrenal growth (which filled me with fear over what was happening in there).  Only the night before did I contemplate that it could be active myeloma – how had I managed to ignore back pain as a symptom? Anyway, I went to the consultation and ever since then the pain has stopped. Talk about psychosomatic! But I didn’t think you could have psychosomatic pain if were aware that you might be psychosomatic – surely being aware of it might make you not ‘fall for it’.