afterwards

There is no real afterwards for me. I will never be cured. I will always have chemotherapy. The sword of Damocles will always be hanging just above my head, but I am a good ostrich and manage to live most of my time without thinking about it. How horrible to be so self-engrossed anyway.
But, I will say that the aftermath of intense treatment is not a giant party.
Suddenly, you have to pick up your old life and truck on, seamlessly. No support. Just deal with it. Your hair starts to grow back and it's horrible. You have no right to complain. Turn it into a joke.
For the first time, I feel ready to join a support group. Maybe I will.

never over

Something I've learned since I finished radiation therapy is that once you have cancer, it's figuratively 'always there'. I supposedly had a CPR ie complete pathological response, which means that my last petscan (somewhere around May), showed no cancer.
But how do I know that it won't come back?, isn't back already?, how long do I have without it? There seems to be more of a burden to deal with now than while I was having treatment. Then, I was doing something. I had a whole team of specialists encouraging me. Now, it's me and my mind. Quite alone.
And that's another biggie to deal with. After months of continuous company, support and interest in my well-being, now, people assume that I need to get on with my life. Well, I do. But I don't have all the confidence in the world at all times. In some ways, it's really tough putting your life back after it's over.  On the other hand, there is so much to do. So much to enjoy. I am living the cliche of life being so short, make the most of every minute.

hair again

It's unavoidable. With cancer, you do talk about hair. Anyway, it's back. I do not like it one bit. It has come back a big mess, with curls that are just wrong. Maybe, it's still too short to be so decisive. I hung on to the scarf for a while, but then Reuven put me under a lot of pressure to remove it (claims he likes the hair - what a joke!) and then, my doctor simply pulled the scarf off my head to 'take a look'. In public. Well, the secret was out and so I had to face up to the awful truth.
I am avoiding mirrors like the plague.
I know that mainly the S Africans will understand when I say that I feel like a karakul sheep. My dear P in Cape Town said: Haai Bokkie: forget about the antiques and let's go into making coats.  I haven't stopped laughing.

a big gap

Today, someone mentioned that it's almost 3 months since I updated my cancer blog. Most people realise that this means good news. It means that instead of dealing with doctors and treatments, I'm getting along with my life. Whatever that means, which is certainly a topic unto itself and deserving of it's own blog.

I last wrote in the euphoria of the significance of our trip to Israel. How could anything live up to such anticipation? The truth is, that it did. Our trip to Israel was awesome in every way and beyond mere words. From the moment that we touched ground it was a major blast - meeting most beloved friends and family, a variety of known and unknown people. Places - from the non-stop action of Tel Aviv to the mystery and spirituality of Jerusalem and everything inbetween. All the senses were indulged: sights, sounds, tastes, smells. We saw a play about cancer; we toured and I stood on the Lebanese border in a grotto with enormous waves pounding and banging all around, in Templar and Crusader fortresses, history all around at every level. Nothing can convey Jerusalem. It is said that when the world was created, that city got 9/10ths of the world's beauty. It is true. Watching hundreds of thousands of people of every persuasion converge on the Wailing Wall past midnight takes you to a level of experience that can never be explained. There was the aggravation of dealing/failing to deal with Israeli bureaucracy - enough to bring us back down to earth with a bang.

Our trip to Israel has absolutely nothing to do with cancer except for one thing: en route, about to board the 'plane to Tel Aviv, a man bashed into my chest. The operated breast. I knew that something big happened, but in the chaos of boarding that was temporarilly the end of the topic. About 5 days later, an enormous lump appeared. No doctor that saw it has seen anything like this. Today is exactly two months since the 'accident' and the lump is still huge and black. I am told that it will take a very long time to disappear.

We did not have time to digest all of that because we got home on the day of Rosh HaShana and had a fabulous visit from my sister and brother in law. Rushing into a totally different reality.

A lot has happened since then and there is a lot to discuss, but I will leave some of that for next time.  Tomorrow, I go for my routine chemotherapy.  Rush in, rush out. I hope.

cry with me a little

Last night, I sat on the sofa shortly after Reuven came home. The house was quiet with all the children gone off, or away. At moments like this, our minds can stop churning and start thinking, slowly. And suddenly it hit me:
In January, very soon after I was diagnosed with what looked like a definate death-sentence at the time, I regretted that I had not been to Israel for so long. Our ties there are long and deep and it would be a 'miss' to die without going back. I told Reuven that if I got better, our first trans-Atlantic trip was going to be there.
The last 8 months have been an amazing journey and one does not always have time to stop and truly absorb the experience. Yesterday, we booked our tickets to Israel. And last night, sitting on the sofa, the significance of these tickets began to sink in.
The emotion that sweeps over me when I begin to think of what it means to have bought these tickets is overwhelming. I wouldn't dare try to ennumerate the various aspects of my thoughts and feelings, because they are much greater than my mind can process into words. All I can say is 'cry with me a little' and thank you for my life.

growing up is painful (and all that)

Somewhere, in the gap between surgery and the start of radiation, I experienced a mild panic.
In about 2 1/2 week's time, I will be finished with chemotherapy, surgery and radiation. All over. And....., a little of that panic has returned.
I realised today that all this 'therapy' gave structure to my life. What do you do all day? I go to treatment, I feel well / not well, I lie in bed or get tests done, I see doctors, nurses, technicians, I am tested and tested and tested. It's all about the doing of getting healthy. All of that is about to disappear.
It's like a student who graduates, or a soldier back from war overseas, only to find that facing the world is a huge, crazy challenge. You have to take charge, be responsible for who you are outside of being a patient and what you do with your life. End the dependence. Grow up.
It's amazing how easy it was to sink into that status of being cared for. Gosh, all that support!! Soon I will have to learn to stand on my own two feet. Quite a daunting challenge. Who would have thought that getting back to a normal life would feel so strange? Panic at 55.

Just as it will take some adjustment to life without treatment, it will take some adjustment to get back to being a person whose identity does not revolve around being sick. A sick person who swims! Amazing! Awesome! A normal person going for a swim? Totally mundane, who cares? Woody Allen makes a joke of a chap who is fetted as a celebrity for no good reason. Reporters and the world hang on to his every word. What he eats for breakfast is a national miracle and as for the underwear he chooses.... they all go into ecstasies. Then, a new celebrity catches the public interest and that poor chap is left ignored, unadmired. Well, in a way, it's the same with us ex-sickies. The false celebrity of our illness is drawing to a close. The challenge of life begins.

just terrible...

I've been avoiding telling you all the truth. Would that I could pretend this matter did not exist and literally put my head in the sand. But the truth will out and here it is:
hair grows back. I'm very sorry to say. Not talking about the stubble that is massing on my head, under the shmatte or wig, which I now wear more often. No, the rest of it. Exactly where you do not want hair. I knew it!! Bah.
Back to working out whether I should go for the laser or go for the needle. Ladies will know exactly whereof I speak. Huge sigh..... this is what makes up the trials and tribulations of our real, everyday lives.  Must go...

halfway there

Today I have passed the halfway mark in my radiation treatment.
It's a huge change from the chemotherapy.
As one of the nurses at chemo said: there is so much drama around chemotherapy. Everyone knows about it, you have so much support and interest. On the other hand, radiation therapists are enveloped in silence and secrecy. They do not acknowledge any side effects until presented with the facts.  A doctor friend once told me that radiation is a very lonely time. I understand that now. During chemo, life is like a huge celebration with non-stop support, care and interest. Radiation: well, you come and go as though you were popping down to the bank or post office. You feel nothing when there - in fact, I have a lovely little schlof while I'm being microwaved. The effects come later.
2 weeks ago, I felt as though I was swallowing blades. Despite the pain, I was most curious to see how far and bad it could go and would this finally force me to stop eating so much? Quite a way to diet! The next day, I was told that Dr H was tweaking my 'plan' and sure enough, this final member of my great team performed the miracle and for the last week or so, no pain whatsoever. I began by feeling really tired, but my fabulous weekend in New York showed me that a lot of it was psychological and I've had none of that fatigue for the past week. (touch wood, spit 3 times etc).
Yesterday, I swam 68 laps. Very slowly. Enjoyed it immensely. I doubt whether I worked off half the disgusting hotdog I ate at Costco. Next time I'll stick to the chocolate and nut-encased ice cream.

What does everyone think about the dangers of milk products? I have been hearing all kinds of research stating that milk and it's derivatives are like poison to us. I am devastated. Everything we enjoy is bad for us??? What is left? Does eating an icecream here or there have to feel like a cardinal sin? What about cheese... how can that go too? On the other hand, once people thought that cigarettes were healthy and there was a lot of doubt before it was proved definitively that they are all but. Do we, should we, deny the negative impact of animal products on our health?
As for me: I gave up my usual toast and cheese for breakfast this morning in favour of a mango. But a mango hardly touches sides, so I followed it up with a large Ouma rusk, dunked in my tea (with milk of course).

a disadvantage

Yesterday, for the first time in ages, I had a cup of tea in bed before I got up. 
I used to enjoy resting the cup on my chest, warming me from both outside and in. However, since cancer, I have a port above one boob and a cavity where the other was gently fleshy. Where to put the cup? I complained to RR, who asked me why I can't use my belly. Obviously that won't work - these days it jiggles and wobbles way too much.
So, for anyone looking for at least one downside to cancer treatment, here it is. Losing the place to hold your breakfast-in-bed type cuppa.

Have you met Betty?

As our days roll by, today saw my 8th radiation therapy session.
After getting off to a very shaky start, I now rock up, semi strip, watch a wonderous light show, get a few minutes to meditate, and then go home. Oh yes, I do get dressed again, before leaving the building.

All of the above takes place in a very large room, bigger than your average school classroom. Most of the room is filled with a giant machine and if you look closely, you will see on her sleek surface, an old 'photo of a lady from the 1940's. She is Betty (Davis), and the machine is therefore called Betty. During WWII, most 'planes and tanks and boats got names and a like-minded person named this amazing creature. And amazing she is: naturally, the bed-part moves up and down, forward and backwards, side to side. Around it are panels and arms and paddles, like the arms of an octopus. They silently swing around to the command of a sophisticated logarithm and plan that I couldn't begin to imagine. The entire room has brilliant emerald green lazer lights crossing it, making the atmosphere even more like sci fi, except that it isn't 'fi' - it's very real.

I'm still trying to sort out my usual afternoon wilted state from fatigue caused by radiation therapy. Today, someone told me that the fatigue only starts after 2 weeks, which I haven't reached yet. Why did I ever read about such nasty stuff? Remember, the best advice to anyone going into cancer treatment is : keep a closed mind. The less you know, the better off you are. What you know will not help you one iota and every potential side-effect assumes draconian proportions before it is feasible. Ignorance might not be bliss, but it sure helps.

moving along my way

I was a real wet blanket earlier this week, so I'll set the record straight for now:

After a shaky beginning, my radiation therapy is on track and I feel better for that.

Being the total hypochondriact that I am, I keep imagining being fatigued from radiation therapy.
Ever since the years that my mother (may she rest in peace), made me 'rest' every afternoon in a darkened room, which I hated more than anything in the world, but probably she needed to survive momdom - well, ever since then, I have been fatigued every afternoon. I will not dwell on my raglike state, nor the consuming hunger that accompanies it. It happens every day and it passes every day. But NOW, NOW I have radiation therapy to be hysterical about. Now, my fatigue is medical and shows that I am in a bad way. A tiny piece of what's left of my mind understands that this is utter rot, but being a neurotic, I am now living in fear. Every afternoon.

May I mention that yesterday, I got into the pool at the gym and actually swam 30 laps. Maybe there is some connection??

I emailed the following report to one of my backbones:

I have been inducted into the world of wheat grass. I don’t flinch about paying almost $5.- for some liquefied lawn, which is supposed to be very healthy, but which most people tastes utterly vile. Personally, I don’t mind the taste. Maybe, when I think of paying so much for it, my mind tells me that it must be good.

 So, for anyone interested in marketing, there it is: you can sell the biggest load of .... and if you charge enough, people will believe it's good for you and pay up. They will stand in line to pay up.
Fortunately, I saw a snippet, literally the last half minute of a program in which, as I understand, they claim that you can and should eat dark chocolate. It's good for you!! So, last night late, for purely medicinal reasons, I sent poor Lee, who had just got home from a very long day at work, off to look for dark chocolate. When she got home, I downed two doses, just to be on the safe side.

New day

I knew that Monday, the day after we got back from our fun-packed trip to lalaland was going to be hectic:
With very low batteries after inadequate sleep, we had chemotherapy (herceptin) with a meeting with Dr B; Bad news: my blood count is lower than it has ever been. Below the low limit. It never did this right through the worst chemotherapy. Why???  What is going on? Worry, worry.
Then a meeting with Dr D, who removed some of the remaining stitches and finally, my first radiation treatment.

Appointment was for 4pm. About 2.30, got a call to say that they are not ready for me, but not to worry, just come in later and all will be well. Apparrently, there are all kinds of complicated preparations, that involve physisicts (Adam, maybe you can get a job), that should have been done days ago. Arriving at the later time, I was told 'a few minutes'. Those turned into a few hours, but I remained relatively calm, more worried about RR, who still hadn't been to work, nor started his own day. The woman before me came out smiling and told me "it's absolutely nothing".
Finally, they took me in. Not very comfortable at all. Taking much longer than expected. The usual moving and re-arranging, trying and trying again, with me less and less comfortable. I lie with my eyes tightly shut, ignoring the monstrous machine that hovers over, under, and around me. Trying to concentrate on beautiful scenery and plan ahead. 
Everything ends and this did too.
They came to tell me that they could not treat the part between my lungs. The machine was over-riding them. Something to do with the complicated preparations & formulae that I still do not understand. I was devastated. To have gone through so much and then to fail here. It was about 7.30pm and I was emotionally wiped out by the news.

I came home and besides eating a very hearty, unhealthy supper - meat from the freezer - the first time I ate meat in almost 2 months, but just too tired to deal with proper cooking. Worked until quite late. Nothing compared to RR who only got to work after 8pm. He was still at it at 2.30 am.

Now, it's Tuesday morning. Been up and working since a little after 6am. I'm going to get ready for my next radiation session. Hold thumbs it goes better.

time off from real life

After 6 months of a kind of house-arrest, I finally had a holiday.

Tuesday morning pre-4am, saw me bright and bushy, up and about, preparing for my first trip via an airoplane. Just as I was pulling on my jeans, the 'phone rang. Initially, we assumed it was some kind of alarm clock, but eventually, we picked up and guess what? My flight was cancelled.
Second guess, I was not being informed by a real hooman bean, but by a computer. So, began some frantic 'phone calls to the airline and eventually, by a bit of clever re-routing, I managed to get to the Big Apple, without too much delay.

What a few days I had! Running around, looking at antique jewellery. Met up with customers, which was great fun, met my son and his friends -  mixed reports on that one. Went to CT,  getting together with family and being taken to see the museums at Yale and the Museum of British Art over the road to Yale. Who'd have thunk that all those amazing paintings by the greatest British artists were in a quiet street in New Haven. Strangely, the most vivid impression of all, was the African art upstairs at Yale. The forms are so strong and the message so direct. This isn't about art, so I'll move on.
Reuven arrived on Friday evening after some amazing adventures of his own. We had a fun and very busy few days: invited out for dinner, saw two excellent plays on Broadway, met up with some of his old friends and of course, more alte zachen. The only minus was that we didn't have a minute to breathe, nor to see everyone we really wanted to see. But there is hopefully, going to be a next time very soon.

Finally, we dragged ourselves home about midnight Sunday. The price for such a good time had to be paid and sure enough, Monday turned out to be 'one of those days'.

nothing

This was as close to a 'normal' week as any I can remember over the last 6 months.
Beyond some pain that isn't worth discussing, I had no medical issues. No chemotherapy, no surgery, noone digging, cutting, piercing or poisoning. Noone touching me.

 It's odd how something so banal can be so sweet. I took real pleasure in having a week off any kind of treatment.
What if doctors would consider this when planning a course of treatment? Would the benefit of a week off just outweigh rushing into the next step of treatment?

On Monday I'm due to be measured and kitted out for my forthcoming radiation experience. After that, the rest of the week off again.   I'm  going away for a few days. My first flight since December 31st.  Long dreamt about, but now that is is looming, I'm not so sure. Staying home is quite an adventure unto itself.

Slowly, I feel myself healing from the chemotherapy. Hair has begun to grow. Horribly, in the least desireable places first. Did I expect anything different? I suspect my new head hair is going to be a lot whiter than before, but we shall see. My skin is starting to feel human again. I probably never wrote about the clammy creepy crinkly feeling my own skin gave me towards the end of chemo. Noone else noticed, but I could feel it. Most of all, I seem to have more energy than before and lots of enthusiasm, without too much to direct it at.

I started walking/running. Very little. Very slowly.  Once again I smelled the earth of the early morning and once again, thrilled at the sweetness of the quiet and loveliness of the world before people start to wake up.

springing a leak & a man on the job

How odd!! Can you imagine that there's not much difference between us and a blow-up toy that can be punctured? Make a hole big enough and you will leak.
Last week, we were amazed at the size of the paraphenalia that unfurled from the unlikely space near my ribs. Following that, I 'imagined' being sticky in the general area, but along with a lot of less pleasant sensations, I ignored it. On Sunday, I discovered that my blouse was quite stained, so there was no avoiding the fact that yes, I am leaking.
Not to be alarmed. Today, I  'phoned the office of Dr D to check and the reply was that this is actually preferably to not leaking, which can cause problems. So, leaking is good.

Today, very exciting meeting with Dr H, who is going to be my radiation specialist. I have dates and I have times and instead of living in fear, I am enthusiastic to get going and hopeful that it will go well. Dr H inspires confidence and if he is nearly as great as the trio of ladies who have thus far saved my life, he is great enough. A cockerel amongst the hens? Certainly, he is the best dressed of them all.

I know that this sounds like boasting and it probably shows just how pathetic I really am, but I was prety bucked when it was clear that Dr H knew all about my case. Seems they have all been following it closely. Is this a form of negative attention?

Some other little bits of news:
I finally got out for a walk/trot quite early this morning. It was pleasant as anything outside. One cheeky mosquito tried to land on my arm, but I smacked it away, almost bruising myself in the process.
I am taking advantage of the gap in treatments and popping up to NY and CT next week. I know it's a bad time of the year to be in Manhattan, but it's always good to get away after so long at home. I look forward to seeing some of my family too. Actually, I'm scarilly used to being home and almost fear the idea of going away. Who'd have thought?

it's out

ON Thursday I had an appointment with the amazing Dr D. She told me that I am healing very well and that the nurse would remove my drain. I expected a little piece of rubber tubing, like the rest of it on the outside, to come out.
Reuven, who has to have his nose right inside whatever's going on, nearly fainted and the look on his face gave me cause for alarm. After a little painful interlude, it was over and I could see why he responded like that: half a ton of 'stuff' had just been pulled from my body. Enough for a good cobbler to make at least two pairs of shoes.
From there, on to the lymphodema specialist, a lovely lady from England. In her quiet accent, she told us that I am in better shape than 99% of the people who come to her following the same procedures. Once again, thank you Dr D.
It's a little more than a day later and I feel very good. Slight nausea from the herceptin last week, which a single tummy pill early in the day fixes. Some pain at night, when I'm tired. We are going to drive up to Gainesville to visit Guy.
Lee is back from Boston and I have yet to hear all of her adventures. Adam is home too, being exploited by a pizza parlour, but no doubt learning about what makes the world tick.
I managed to spend a ton of money last week - work related - but it shows I must be getting back to normal. For me, normal is spending tons of money and then worrying myself stupid about how to make it back.

what's for lunch?

Recently, our pool went off colour.

Our pool guy, Terri, hasn't been around in years, being a boss now, and having people who work for him. But when things go wrong, Terri can be relied upon to come and fix it. So, Reuven talked to Terri, and being Reuven, managed to make the connection between the colour of the water in our never-used swimming pool and the fact that I have cancer. (there is no connection).

The response was atomic and Terri arrived, equipped with magazines and videos and a highly eloquent talk about 'the foods we eat'. To cut a very long story short, he is a vegan and believes you should not cook food above 180degrees ie all food should be eaten/drunk raw. I understand that to start the day, he devours the equivalent of 3 farms, in liquid form. Later on, he eats the debris.

Irony aside, it got me thinking: my food habits are utterly atrocious. I don't have to buy into the entire theory, but I do agree that there is a lot to be said for taking better care of ourselves - that is in my family. Could it be that cancer would have been avoided had I never eaten from another living being? Maybe, some day, we will know. According to Terri, the government has vested interests in keeping the real truth from us, and I do agree with that. But this is not a political blog, so we won't go there.

Terri is passionate and recommended a vegan retreat up in Palm Beach. I looked up the rates, which begin, for dormitory conditions, at over $5000.- per person, per week. They go up a lot. That really puts me off. Benevolence ain't their motivation. But, I would like to go and have a good 'detox' and maybe a massage or Aryuvedic treatment. Anyone know anything good?

Everything is going well. I look forward to having my drains removed and feeling even more 'normal'. I believe my hair has started to grow imperceptibly on my head, more noticeably in other places where I really don't wish it would happen. My blood counts are still low, but acceptible and despite it all, I feel absolutely well (when I don't look in the mirror).

CPR

Just back from Dr D.
 Best news possible: CPR ie Complete Pathological Response. That means that right now, there is not a single cancer cell to be found in my body. From Stage IV, highly aggressive to nothing at all.  Thanks to Herceptin, I hope to stay clean for a very long time.

We are told that there are a number of new drugs in the offing that will work with Herceptin, so that the prognosis will be even better for more people. I hope that I won't even need them - so far Herceptin has saved my life. Two years or so ago, I would have been a 'gonner'. We live in a truly miraculous medical age and may it just go from strength to strength.


Still have drainage tube and little rubber bag coming out of my arm.  The plasters sticking into me are driving me nuts.  But I feel well and am going to be returning to normal functioning very soon. I also hope to visit NY in the gap before radiation begins. I was going to start thinking about a diet, but then Channah said: wait until after radiation and why not put off something so horrible as a diet?


I am profoundly grateful to everyone: from my wonderful doctors who literally saved my life, to all of the people who gave me support, without which the doctors' work would have been fruitless.
Just think: all this has taken less than 5 months from beginning to end. What a world!!!!

The day after

We arrived at the Women's Center, next door to the hospital at about 11am. I was there for the radiologist to insert wires into the appropriate places in my breast and underarm. A quick mammogram before that, to make sure where the two markers, left from the original biopsy are.
After the first 6 or 7 mammograms, I realised something was up. By then, I had 3 radiology technicians pushing, pulling, prodding - all with extreme kindness, but no success. Maybe an hour later, they finally gave up and off we went to try an ultrasound. Squishy gel all over me (so much for being sterile), she could have ironed 5 full loads of laundry, which is more-or-less the same movement around my armpit, in search of the markers. No success.
Off to have an MRI, with by now, about 7 in the entourage. I was promised it would be a quickie. Ha ha. For the uninitiated, an MRI is lieing with one breast in a hole in a very narrow, hard table, the other on an even less comfortable contraption, your face and neck set up for minimal support and maximum breathing obstruction and all this while noise that makes a pneumatic drill sound like a requim to peace, is blasting your whole body. Very quick: at least an hour without moving. But... success must have been part of the deal, because in the midst, Dr Schilling came to pinch and clinch and the wires were inserted. Not out of there before another MRI and then back to the mammogram, where another 30 or so efforts were made to locate whatever was there. I was told not to look.
Finally, I was led back to the waiting Reuven and Channa and with  'just one more mammogram' to interrupt (actually another dozen or so), the quick stage one was over. Besides generally cooperating, I did mutter that if I don't die of breast cancer, I'll definately die from the radiation received yesterday.

By then, I was way late for surgery, which had been scheduled for 2pm. A lady with a wheelchair and chart was adament that 55 years practicising walking wasn't good enough. I had to go to the van in a wheelchair. The van was broken and there was RR talking to a security lady. Oh G-d.. what has he got up to now?? But it turned out that the security lady was due to take us all to the hospital in lieu of the van.  RR and Channa hopped in, but the lady with the wheelchair was left behind, so there was a mini drama when we arrived at the hospital without her and the all-important wheelchair and chart.

I finally arrived in a little cublicle to get ready for surgery - seemingly a minor detail after the morning's adventures. The nurse, Fran, is the Mom of one of Lee's best friends from grade 1 or so. What joy to reunite with her - we rushed right out of the surgery area to the waiting area to update RR. As anyone can see, there were much more important issues than having a large slice of my breast removed and a bunch of lymph nodes chopped out too. I was dead to the world for all of that - thank you kind doctors and woke up trussed up like Madonna in all her glory.

Everything is good. with the aid of pain killers, I feel great and hope that we can continue with such success. Dr D did a marvellous job from what I hear. Thanks to absolutely everyone at the hospital for their kindness and great work.

June 5th 2012

It's 10.19am and I'm ready to rumble.
Fasting, showered, wearing the requisite button-down shirt.
At 11.30 I will sign into the 'Women's' facility next door to the Boca Raton Regional Hospital, where a radiologist will put wire markers into my chest. A van will then take me next door to the hospital, where, eventually, I am going to be chopped and pithed. I hope to be home tonight.

If I could write huge letters, they would say: thank youuuuu to everyone for all of the support.
Hope to be back with some gruesome, good news as soon as possible.
Again thank youuuu all, and love.
Brenda

photo taken June 4th 2012

June 2nd 2012

No title to my blog today. It's very difficult for me to write as it's been the toughest time since I was initially diagnosed. All the usual existential questions come to mind: why do things go wrong at the worst possible moment? ; why is everything such a big mess? ; why me? ; and all the rest.

Backing up a little, I probably explained that instead of having a ball between my last major chemo and my surgery, due on June 5th, I got pneumonia. The first week was so horrible that I didn't think about anything at all. After that, I realised that my surgery was in jeopardy. Now, besides a little cough, I have no symptoms and I feel healthy and pretty strong, but, apparrently, it takes about 6 weeks for a catscan to show a change in your lungs and so, the question is do we go forward with the surgery or don't we? With an exponentially aggressive cancer return risk, can I afford to wait?
Doctors don't all know everything about everything, and we have backs and forwards, tests that may not be so necessary, differing opinions, doctors that can't be located, a weekend in the middle and the d-date looming very close. For me, the bottom line so far is what Reuven's cousin, a pulmonary specialist said: you have no temperature, your white blood count is normal: you don't have pneumonia.

This morning, quite early, Reuven and I walked for two miles. A little later, my wonderful yoga teacher, Val came over and game me a special lesson. She told me I'm very strong. Are you listening doctors? I'm very strong.

My new resolution: I'm sick of being jealous in the worst possible way of everyone who tells me about their exotic travels. I am now going to be a person who is happy to stay at home, has no desire to go anywhere and is perfectly content within her own 4 walls. My first project is to think of a project. I have not yet thought of anything that vaguely interests me around here. Too hot to garden, so keep that idea at bay. So far, all I've come up with is the laundry and repeatedly washing dishes. I don't think those are tasks to be ecstatic about, so I have to think of something else. Or maybe not.

big news

As I have related ad nauseum, last Monday was my last big chemo and instead of celebrating, I managed to get really, really sick afterwards. This might not be unusual in the world of chemo, but for me it was, and it was a blow to my pride in accomplishing the process relatively unscathed.
There might be a reason to being so sick that your mind simply doesn't function: to keep it off the upcoming petscan. Had I not had such a bad week, I'd have probably driven myself and everyone around me utterly crazy in anticipation of the test that would reveal whether or not the chemo worked. I would have been even more, no - a lot more, neurotic than ever.
So Monday, with it's dietary limitations rolled around and I must have spent about 2 hours on the 'phone making sure what I was/not allowed to eat and when. No doubt, and quite correctly, the clerks must have thought this woman is 'heeltemal en vreeslik mal', which does not translate well for my mental state (from Afrikaans). And finally, it was Tuesday morning, with a hacking cough that I was told was not pneumonia, I went to do the scan, having spent hours of mediation working out how I was not going to cough and mess up the whole procedure. Some of us have got a lot to think about. ....
Reuven and I were mucking about in the house, getting ready to go to chemo (still getting Herceptin) and my doctor's appointment, when the doctor herself 'phoned. She said she wouldn't let me wait to hear the great news that the petscan results were in and couldn't be better. The petscan has a resolution above half a centimeter, so, while there is a chance of tiny bits of cancer, too small for the scan to find to remain, the scan itself shows NO cancer. Utterly overwhelming news. The flip side of the coin was that "I had and still have pneumonia" as also shown by the petscan, which is a lot more sensitive than a regular x-ray (which lied through it's teeth).
It's like breaking the tape on a marathon, only to collapse on the other side. A famous saying in Hebrew: the operation was a success, the patient is dead.
I HAVE to get better fast or they will not do the surgery and I have to have the surgery soon so as not to have wasted all this chemotherapy. I am in a tizz. Some people will do anything for attention.

It's never over 'til...

Big excitement - my last big chemo on my 55th birthday. Auspicious.  With only one real blip to my record, I felt confident that stage 1 of my treatment was over and behind me. All seemed fine. Tuesday, a nasty niggly cough. By Tuesday night, I knew I was sick and by Wednesday, I'd begun a truly horrible week (well, so far, not quite a week). Thursday, with tubes coming out of me in more than one direction, zero energy, fever, nausea, pain in every bone, and a mind in a swirl, I was ready to check out of this world.  Possibly just flu, but after an entire road trip of chemotherapy, my body is clearly at a nadir of strength and took it badly. I have still not had enough energy to speak on the 'phone, so for everyone who has been so kind, please forgive me and wait a few more days.
Today, Saturday, I think I am finally on the upswing, but the cough is driving me crazy and preventing me from getting close to the rest I would like to have. With Mother Nature/G-d providing the most delicious rain outside, what could be more wonderful than cuddling up in bed? But no: cough cough cough ruining it all.
Along with the rain, in Florida, we get algae that needs pressure cleaning at least twice a year. The patio is black. I insisted that RR make an appointment with the cleaners.  At least if there's a shiva coming up, the veranda will be respectable.
We have learned that it's never over til it's over and not to be overconfident about our ability to withstand every physical challenge. It makes you wonder what the h it's all about anyway? All the corniest of questions arise and so far, there sure are no answers. The amazing thing is that every single one of us will go through these thoughts and face their finality at some point, yet we continue to live as though the questions do not exist. What does a hungry child in Africa think and am I utterly over self indulgent?
On the home front, Reuven has been very good today, making meals and becoming quite domesticated. Jimmi Hendrix has decided that he has a legitimate place at the table and if we don't nip him in the bud, on the table. It is quite funny to see that little black and tan face sitting on his own chair, seriously expecting to participate in human meals.
So, we have had the cute and the hectic this week. Hope to have something less dreary to report next time around. Meanwhile, anyone know a miracle cough cure?

May14-15 summary

Was going to call this chapter a postmortem of May 14th, but thought that would be a little macabre.  Woke up after a couple hours sleep at 2am. My thoughts racing around, going through the events of the previous day. So, here they are:

Got up well before the rest of the household, as usual. The kitchen table was bedecked with decoration
in my favourate blues, lots of shiny glitzy starts and flowers and banners reading Happy Birthday.
Cutest gifts from Nancy. I got my work done, we had breakfast and finally left for chemo, when I
remembered that I'd forgotten to take my steroids. So, we raced back as fast as possible, knowing that
there was a policeman right at the entrance to our community. Well, the genius had his lights flashing,
so it was hardly a secret.

Lucky to get back as I found Mr. Jimmi Hendrix well inside a huge plastic garbage bag, scattering it's
contents all over the kitchen floor. Fortunately, he had only just begun his pilfering, so I managed to
scatter him out of the kitchen, pick up the bits, take the steroids and rush back to chemo.

As we walked in, found Adam and Lee already there, with crowns for all and the whole room singing Happy Birthday to me. Eventually, I got hooked up, but clearly there had been some sort of snafu, which I was unaware of. Turned out that Nancy had ordered cup cakes, balloons and decorations, which were supposed to be hung up in the room before my arrival, but the woman brought them 4 hours late. To me, it made no
difference, but I think poor Nancy and, to a lesser extend the kids, were stressed out.

I nodded through a lot of the morning and it was all over by about 1.30 Very early. End of my big chemo sessions. Now, we have to wait for next week to learn whether they did their job. On Tuesday morning, I'm due for a petscan, which takes a 'photo of the body and shows where there is cancer. Quite nerve wracking in anticipation.

I had a rest this avie and then, to my great delight, went off to see The Best Exotic Marigold Hotel,
which I've been waiting to see since the trailer showed, October last year. Why it took so long to be
released in the USA, is beyond my understanding. All good things are supposed to come to those who wait, and this was no exception. Nothing deep or heavy, but pure delight. A bunch of old codgers, pretty much down on their financial luck,  retire in a hotel near Jaipur. Having been twice to Jaipur, I especially loved the surroundings. Fabulous acting, light and lively plot. Just what the doctor ordered.

We got home a little later than expected and still had to see to supper. Lucky we live in an age of
freezers, so that was easilly accomplished, if not very healthy. Everyone collapsed into bed and it was
the end of the day.

I awoke about 2am and now, after 4am, am thinking of making another attempt at
sleep. Lots of thoughts about what the last 4 months have meant and now, more importantly, what the next 3 months will do and how I will get through them. It is definately going to be a different chapter in my life. I am inutterably grateful for all of the support I got through my chemotherapy. I am very, very lucky and want to thank everyone who kept me buoyed up through it all.

Also, thanks to the people who sent me birthday wishes via Facebook. I don't know how to reply on
Facebook, so I hope you read this.

May 14 20012. 55 years old today and very grateful.

This morning, woke up at a little after 5am. I have a wonderful feeling inside. Sometimes, you are just very, very happy, very very grateful. Today, is my last big chemotherapy. At least for now, this cycle. I have a wonderful friend staying with us and so far, the kids' being home has been a joy.
I know there are downs to match the ups, but in all honesty, I have been supremely blessed since my diagnosis.

Going through my emails, got happy birthday wishes from a few most unexpected sources. Thank you, thank you for remembering me and for your kindness.

The table is magically set with sparklers and napkins and a card and gift in blue (favourate colour).  I hope to share that with the family later today.

So, I'm pleased as punch about reaching my last big chemo. Feeling an accomplishment. I open an email from an old friend in Australia, who I haven't seen in 30 years or more, and see a video of two tall women fitting themselves into a box. Jeeeeez! Suddenly my own accomplishments seem so much more mundane. People can be so amazing.

Thank everyone for lifting me up for the last 4 months.

a really good week

I just had a great week! not only was it my strongest week of the 3 week cycle, but my blood count went up and I feel much better. Maybe it's all of that meat from last week. Even better, my aunt came to stay for a few days and having someone so supportive and caring around, is a great blessing.
I finally managed to get out of Boca for two days: we got in the car and drove up to Sarasota. After a near fiasco due to a misleading booking, we managed to organise a hotel right on the beach with a room facing the water.  You could stand on our balcony and jump into one of the swimming pools that seperate the hotel from the sand.  We chose to sit out there and drink in the gorgeous view. Fishermen, walkers, picking up seashells, funny birds of every variety and size and of course sunset and swimming. The hotel supplied us with huge deck chairs and when not lazing on them, we had a great time in the warm water. The waves on the Gulf of Mexico are very gentle, especially for one who remembers the rush of water at Muizenberg and the icy cold torture of Clifton. In South Africa, a wave gives you a zetz and fly into the depths, but here, it was all kindness - exactly right for oldies and sickies.
There is no such thing as me going anywhere and not having at least a little look for antiques, but Sarasota was a disappointment in that department. We made up for it by having lunch in the Amish area at a restaurant called Yoders, which confirmed that Amish food is as bland and boring as you would not wish to imagine. They do make nice quilts tho and I was tempted, but resisted a great offer. How much 'stuff' does one need?
I am cooking a great big pot of supper. All 3 kids are home and my bruv is due in any moment. A lot of guests expected on Sunday and then finally, the unbelievable: Monday is my last big chemo of this session. I am told that I will never be cured, but hopefully, the Herceptin will keep the cancer at bay until I reach a ripe old age. Perhaps there will be new breakthroughs before then. I can just hope and pray. Meanwhile, I hope that when it comes, I will be ready for the next world.
It also turned out that while I may not have a full mastectomy, I will need plastic surgery, so, on Wednesday,  I am going to see a doctor, who, coincidentally, I know from my old shul. His mother knew my late grandmother in Cape Town, so it is a very small world.

In Illness and Health

Another week has rolled by. Everything started off ok when I went for my little dose of Herceptin. Bright and cheerful. Then my bloodwork came back and the numbers had plummeted. The nurses were all still bright and cheerful, but I was devastated. How could it be??? Immediately, I felt terrible and for days could not get myself out of the slump of these low numbers. Did that explain the terrible tiredness of the week before?? Compounded with the fact that my friend, S, who had one dose of chemo, landed up in hospital with pneumonia because her numbers dropped so low. I ate so much meat that I gained 10 pounds and by Wednesday, started to feel chirpier. By Thursday, I forgot about the whole thing except the excess weight, which is still climbing. I have decided that I should apply for a job as a chubby little alien from outer space in a movie. I hardly look human any more.

Since I felt a lot better by the end of the week, I ran around a lot. Had tons of fun as my work involves shopping for antiques. Now, I have loads of stuff waiting to be done on my desk. No rest for the wicked.

Children have come home to roost. I guess roost is not what they do, but that's the saying. It's amazing that no matter how bad a patch your relationship with them currently is going through, there is a feeling of deep satisfaction in knowing that they are all home. Despite myself, a feeling of wholeness, quite uninvited, pervades.

It's difficult to remember, hardly a week ago, that feeling of deep exhaustion in every cell of one's body. When you feel good, you feel good and can't conceive of the other. It's difficult to even think of oneself as being 'sick' - you don't feel sick and the only thing to remind you, is when you look in the mirror. Or, try to get into any of your clothes that will not come close to closing around that enormous belly.
With that in mind, I am going to try to go for a teeny run, or at least a walk. Chow.

April 29th 2012 - a very rainy Sunday

It's been one long week. The usual big bang on Monday with, glad to say, less than the usual nausea, but more than the usual tiredness. Combined with being a socially busy girl, I just didn't have the stamina to do a whole lot more than lie in bed in my 'free' time.
It seems to be the convention to tell someone not to strain, but between that and doing nothing is a world of sloth and potential harm to ones inner beings - the heart, lungs, muscles etc. I know that people mean well when they tell me that "walking is just as good as running", but watching my nearly 87-year-old Dad float through life in the healthiest way, I am not persuaded.
Last week, Dad played his usual 3 games of tennis. He will bashfully and modestly tell you that 'its only doubles these days'!!  Which of us could even hit a tennis ball, never mind play a game of it? Three games?? That night, sitting at his kitchen table, he managed to fall and break a rack of ribs. Why and how is still a mystery, but the doctor who examined him said that he is in 'brilliant shape'. How much more important when looking at feeding oneself with ratpoison, chopping out bits and pieces of highly relevant flesh (under the influence of even more poison), and then a 6-week daily dose of microwaving oneself.. than to be fit and in good shape????
So, this week, I can hardly stand up at times and running has been out. Boo Hoo. Hope next week is better.
I watched a movie via Netflix: Death at a Funeral. I am usually a big fan of foreign, especially British cinema, but this was horrible: a series of gags, something between Benny Hill and a soap opera. Don't bother.
Going stir crazy with house arrest, I tried to arrange a w/e for the boss and myself in Sarasota. It didn't work out, so as a consolation, we planned a trip to South Beach this morning. In celebration, the skies clouded over big time and, sure enough, the rain came down in buckets, non stop.  Our car swam the hour's journey in zero visibility. The rain didn't let up after we arrived, so we went for a big Cuban breakfast and then, the weather did change - it got worse. Despite a huge umbrella, we got damper and damper and I got grouchier and grouchier, so it was clearly time to call off the whole thing.
Like the 3 little piggies, we are home again. Jiggity Jig. Old slippers on the foetsies, Reuven deep in an armchair and deeper into the basketball. Jimmi happy as a sandboy to see us. Is that the sun I see coming out?

some dilemmas

Yesterday, I had an appointment with my wonderful oncologist, Dr B. I did have some questions relating to aggressive, stage IV cancer, but what was uppermost on our minds was the matter of my bathroom scale reaching apexes not dreamed of to date. I was hoping for a verdict of 'it's the steroids', but no: I was told that it has to do with my age and how much I eat.  Horror!!  Does anyone out there think I should change doctors (no - not even in a joke), but what should I do??? There is no answer that I want to hear: the d..t word is not part of my lexicon and the alternative of being told that in my condition it's good to put on weight is beneath discussion. Really! Does being a fat cancer patient feel nicer than being a thin one? What about my clothes: I can't fit into anything - in fact my jeans are doing the splits at a number of strategic locations. Should people with cancer buy new clothes? After all, we don't know what the future holds, do we?! Might never get a chance to wear them.

On that subject, ie our mortality: had a discussion with IR, who is visiting from Israel. She refuses to comtemplate the matter, being of the opinion that there is no proof of anything afterwards /greater than us and noone in their right mind should consider the topic. I asked about the majority of the world's population who Do believe in something greater than themselves, whatever they call IT, but she would not consider the possibility. So, I've not made any progress on the subject. I don't believe it's so clear-cut, especially for people who have faced their mortality, as she has not. 

I can't make up my mind whether to try to get out for a walk/run this morning. I've been awake since well before 5am, having 'phone bids from overseas, not that it was worth wasting sleep on them since the one item I really wanted went for an arm and a leg. Of course, I'm sorry not to have bought it, since it was really unusual and had every desireable quality I could ask for. But, there are limits.
I do like being out early, with the birds to keep my company. I love to listen to them chattering in their different voices, especially when the weather is good and cool, and before my huffing and puffing drowns out the rest of the world. Maybe I'll wake up poor JH, who missed yesterday and often looks so desperate to get out of the house for a good airing.

This morning, Reuven and I took JH to the park behind our house for a walk. After trying to drive in two directions at once, Reuven managed to land us parked near a golf course, alongside a little bunny rabbit that hopped accross the road, just being missed by a single speeding car. Alongside was a marvellous woodsy area with a lot of indigenous plants, tiny flowers and lots of ponds, ducks and wading birds. JH had a marvellous time - his excitement was palpable and we really enjoyed ourselves until a mean golfer started screaming at us with sarcasm, to get off the golf course paths.

When I sleep in my Dad's house in Somerset West, I'm normally awakened by the morning sun that nothing can stop coming through the curtains. Simultaneously, one is aware of doves cooing somewhere outside. It's a very special noise that I associate with the early morning peace and quiet. WHile two places could not be more dis-similar than Boca Raton and a quiet spot in the Western Cape, one commonality is the cooing doves. It's amazing how a sound can result in a physical response - telling me that all is well with the world and it can be a very beautiful place.

Another beautiful sound for me is listening to my wonderful yoga teacher, Val. When she talks about the connection of mind-body-emotion, it is so real. When I try to do yoga on my own, rare as it is, I just don't get that sense of one-ness with the universe. In fact, it's a trial, which may explain why I don't do it often enough. Nothing like shutting off from the rest of the world and gently moving to the directions of a great lady teacher. Now, to apply that to my trips to the supermarket and the rest of the world.

April 22nd

It was bound to happen sooner or later. With one in two men getting cancer and one in 3 women, how long before someone else I know got the nasty diagnosis? (statistics heard on a tv ad).  Suddenly, I am the 'old hand'. Pretty weird. Just as everyone's cancer is different, everyone's response is too, and my friend S dives into reading up whatever she can about her illness. I remain determinedly ignorant. Now, I'm watching what happened to me, happen to her. It's a little like having an echo that involves your whole life instead of sound alone. It's like hearing your voice come back to you when someone has their speakerphone on - replay of what you just experienced. S is wonderfully strong and has all her skittles lined up, so I'm sure that she is going to do very well and I look forward to lots of fun times together for many years to come.

On Wednesday night, after playing about 4 games of tennis, my father, who will be 87 in October, fell and broke 6-7 ribs. The number keeps going up. I would have liked to be on a 'plane going out to see him, but obviously, that was out of the question as I can't travel by 'plane these days. Dad was kept in hospital for a few days to ensure that he didn't get pneumonia, but yesterday, was released and is now starting to recouperate. Anyone who has ever broken a rib can verify how horribly painful it is and Dad has so many of them. Hope he heals fast and well. I'm told that he was enquiring about going to the gym on Monday. Ha - that sure ain't gonna happen - not for a while yet.

Last Sunday afternoon, we went to see the Israeli movie, "Footnote". Normally, I'm impressed with most Israeli movies I see, but this one was contrived and just didn't make it to the bar. Poorly done, mixed acting with the woman actresses much better than the men, who had the main roles. We did gobble up two huge buckets of popcorn between 3 of us.
The Lady seems to have disappeared before we had a chance to see it. Could it have been showing for one day only? Will have to order it from Netflix.

To wake up anyone reading this who has had enough of doom and gloom, here is a wonderful link, sent to me by JH (same initials as wunderhund, but actually a fabulous Scottish lady).  Scroll down and read what happens to men who, as usual, do not listen to instructions.

http://www.amazon.co.uk/dp/B000KKNQBK/ref=cm_sw_r_fa_dp_J6iKpb0DFDPYC

I hope this gives you all a good start to the coming week.

In all fairness

I've already written about Reuven's comment that since my diagnosis in January, it's been like a party in our house. We have had tremendous support and lots and lots of visitors. It's been a lot of fun and definately helped me get through with great ease.
But in all fairness, you can't live your life in a constant state of high. You have to have some lower landmarks from which to measure the 'ups'. You have to have the relative 'downs' in order to appreciate the 'ups'. It is all relative and this week's mood is far from what could ever be called 'down', but it is relatively quiet and even a little irritable.
 For someone who sometimes hardly touch the ground before the next trip out of town/country, it's been a long, long time staying home. No exciting shows or cities, new cultures to watch and enjoy. I get the invitations with their beautiful pictures and drool, but I am going to be here for a while longer. Just writing this makes me realise just how spoiled I am and that it's time to adjust the attitude. I remember once reading an essay about a guy who 'travelled' from the comfy armchair in his home: he read travel books. Not sure whether that is the answer for me, but there has to be one and it's my new job to find it.
What I really wanted to say is that life isn't all ups and that it's ok and necessary and good to have downs. It's up to us what we make of them and how we cope with them and we should appreciate them for what they teach us. I hope that by next week, or much sooner, I will have worked out some kind of answer for myself. You can work out the answer that best suits you.

Vis oogies

When my late mother had chemotherapy, many years ago, she complained about having "vis oogies". For anyone out there who actually doesn't speak fluent Afrikaans, this translates to "small fish eyes".  What my appearance-conscience Mom was referring to, was the strange look of eyes without lashes and brows.
But is it? Maybe it's something else. My own ocular related fuzz has not entirely disappeared, but when I pass by a mirror, get a glimpse of the old bag out there, I think vis oogies is an apt description.  Has anyone else noticed this phenomenon and if so, how do you explain it?
On the grand scale of things, I can't begin to guess how important all of this is, but yet again, chemo gives us opportunities for unexplored self occupation. We are absorbed by the effects on our skin, our muscles, our alimentary canals. The latter is one of my most recent hobby horses.
What is important, and I keep forgetting to mention, is that my brca tests were both negative. This adds to the mystery of how/why both Mom and I got cancer. In the light of the latter, what does it mean for my children? Negative for the gene, but postive for the disease.....?


I've had a very interesting experience: after constant guests and a household full of people for almost two weeks, I had my first taste of 'home alone', while Reuven and the girls (Lee and Avital) went to Boston and New York. As anyone can tell you, I am not capable of walking and chewing gum at the same time, so my brain definately needs down time, in which to string a few coherent thoughts together on any and all subjects. I'm not decrying the fun times of being busy and occupied, but the quiet was a real blessing for a few days, or should I say hours, because most of the time I was not, in fact alone - yesterday was spent having fun with friends from morn to beddy-byes.
I'm slowly catching up and unscrambling the mess and mush of my mind and by the time the family walks in somewhere around 1pm today, I'll be ready to face the onslaught.

There are days when life is like a roller-coaster that never stops: we race along the tracks with no ability to get off and no time to stop and smell the roses. I don't think that's bad by definition, so long as we are enjoying events and can look forward to some down time down the road.
Our house has been abuzz with the children and guests, starting on Thursday and continueing... Last night, we folded approx 1am. This doesn't leave me much time for quiet thought and reflection, but somehow, betwixt and between, I did notice a few things.
Firstly, more than one person has reported unusual dreams. Is it because we are going through the holiday period (Passover and Easter) that people are more spiritually and emotionally introspective and this leads to more dreaming? Has anyone else been dreaming unusual dreams?
Secondly, there have been some strange coincidences and cosmic intersections of unlikely points. Same questions - coincidence and who else? Bits and pieces of the past have reemerged and popped up in the present. For example, people I lost touch with long ago, making contact. For me, it's wonderful when the past meets up with the present.
Ultimately, are we all connected like the kharmic claim?
My son was explaining to me that in Zen Buddhism there are no rules and no generalisations. If that's the truth, then how are these coincidences explained. Maybe there is a greater truth of some form out there. We might never know, but it's a good tangent to explore.

Just another day

Sometimes we are in a rush to tell a story or share an opinion, but most of the time, nothing special is going on. Really, these are the days we should be most grateful for. Even if we think we need news and excitement every 5 minutes.
Yes, Monday was my 4th big chemo - the half-way point of this section. Slowly, the reality of surgery begins to dawn, but I'm avoiding thinking about that for now. Everything in it's time and place. I'm lucky: I feel pretty good on the whole. Today, as expected had it's weak moments with me actually bursting into tears because I couldn't open the food processor.  A good cry is so comforting. I love it. Got over it pretty fast, especially after a brief nap, which left me feeling a great deal sturdier. I think those pills (Zofran) are making me very shaky. I'm taking less of them than usual and it seems to help. In fact, no big surprise - less meds is better in lots of cases: I had half the Benadryl and no Atavan on Monday and felt way better than last time. Just before I bore you to oblivion, I will mention that my liver functions are 'up' and that is a cause to be happy too (for anyone who read last Friday).
Biggest and most important news: all 4 children will be home tonight. Adam is already here and has been shloffing with JH on Reuven's bed. I took a great 'photo and will add it later. Avital and Reuven are caught in  major traffic conjestion on the I95 en route from the airport. And, much, much later, I hope that Guy and Lee will come in from North and Central Florida, respectively. Guy from UF and Lee from the Florida Science Fair finals. Maybe, by this time tomorrow, I'll be ready to ship the whole bunch off, but I can't wait to see them all at once.
We are not having a huge seder tomorrow night, but we are having a seder. I promised - and I have already made the gefilte fish and the chopped liver (the latter with the food processor that wouldn't open). Tomorrow, some more easy cooking and setting up the tables. Taking it quite easy. I'm looking forward to chomping on the matza, even if it's hugely constipating.

As they say: it never rains, but it pours: our microwave, always faulty, will be yet another eon before getting fixed. The freezer door isn't closing properly, so we have a heavy collection of ice covering everything inside - impossible to recognise a bag of peas from a frozen burrito. May these be our greatest problems in life.!!

A real scare and a lesson

I've been toying with writing about some of the more serious aspects of living with cancer, but so far, the overwhelming atmosphere at home is light-hearted. I'm consciously avoiding many topics, some of which I have considered, but the opportunity has yet to arise for putting down thoughts in a coherent manner. No doubt, they will eventualise.

So, our lives rush past and so far, touch wood, we have had no cause to divert from our party path. Until yesterday.

Between taking JH to the vet (he had his first flea) and my new, long-suffering book-keeper, planning a good supper - Guy might come home (he didn't), Friday being cleaning day, it was quite hectic here. The ringing 'phone sounded as it normally does, and gave no cause for concern.
A mushy brain still didn't register when the voice on the other side was a nurse from my oncologist's office. Not to take certain pills because of..... 'problem with the liver'.  My liver yet again! I've been avoiding that topic. Reuven, grimly assumes cancer spread to that place. I'm in a terrified panic. Eventually, between us, we managed to concoct the idea of 'phoning the doctor's office and asking for an explanation. This shows how far terror had overtaken normal thinking. My brain is total mush and I force myself to make supper - just try to keep busy doing something practical instead of going to bed and curling up in a very tight little ball. Reuven drives to the doctor, who has still not returned our call and gets the news that 'no, it's not cancer', it's the liver function and it might improve soon and there is alternative medication. Of course, everyone else would know that, but everyone else doesn't have the knee-jerk reaction to potential bad news from an oncologist.

This goes to show our pathetic capacity for withstanding a surprise onslaught from an unexpected direction. We know it's a marathon and not a battle, but when there's a new tangent, how utterly unable we were to deal with it. Even after straightening out the facts, I was left exhausted and shaky and just grateful that I had finished cooking, so that now, I could really get into bed and have a nap, with JH curled up in his new haircut on my legs.

a few 'photos

there are people who live like this

Today, Anat joined Reuven and me at chemotherapy, which ended quite early in the morning. We had considered going for lunch, but with the view that we eat to much to begin with, decided to depart from this routine activity.
Instead, we took a drive up to Delray Beach. Past the fantabulous houses on the A1A: people who live in real mansions, with their own stretch of beach and marvellously imaginative gardens that cost the equivalent of most countrys' GPA (or is it GAP?) to maintain. The gods of parking were out in force in our favour and we found a parking spot in prime location. Right next to the path to the beach and opposite the coffee shops on the other side of the road.
The day was magnificent. Golden sunshine, the water clear and fresh, with all the shades of blue and turquoise towards the horizon. While my two landlubber companions stood in their shoes near water's edge, I immediately offed my sandals, rolled up my trousers and went in up to my knees. Absolute bliss.
Fresh and perfect. The view of the sea in it's shades and tones with lightest waves.  Every now and then the smell of suntan oil - something very particular and delightful, wafting over.  The sounds of people having fun. For me, paradise on earth is a great beach.
Behind us, the sand was crowded with people of all ages and nationalities. It's always a mystery to us that so many people are not working. It's always a promise we make to ourselves to go back to the beach and enjoy the same, more often. Somehow, we never do, and the years roll past.

I'm not supposed to be in the sun at all, but I had a great big hat from Anat and we indulged in a little walk along the waters' edge. Followed by a drink in the coffee shop opposite, by when, I was quite exhausted and ready to go home and have a nap.
I will add the 'photos when I persuade Reuven to put them on my computer.

OMG

Every now and then one is confronted with an OMG moment. Totally unexpected, utterly wonderful.
Early yesterday morning (Friday, 23rd), I took myself off for a very little run. As I hit the driveway, the new day hit me. I litterally felt OMG go through me, mind and body. Utterly fresh air, the softest light of the new day, well before the sun starts to rise and quiet. No sirens, no traffic, no voices, no blaring tv/music/anything else. Even JH was asleep on my bed and not around with his joyous tail and pull on the lead.
The run itself was very short. I barely made a mile plus some of the way back. We get unfit all too quickly. No matter what the physical shortcomings, the day began ultra well, thanks to something that is there for everyone to enjoy, every single day, but that we choose to miss.

the straw on the scale

Like lots of other situations, cancer is highly individual. Every case is unique, so I have never understood why people would compare one to another, repeat anecdotes about other cases etc. They are not relevant to any particular patient.
In my case, I know that I have a super-aggressive kind, and that I'm stage IV. That means that things could go either way and while the support and prayers and kindness of so many people have kept me buoyed up and confident, I am aware that the scale could tip the other way.
Yesterday, I went to see Dr D. As we pulled into a waiting parking spot, I told Reuven that I have no idea why we  had the appointment. How far off could I be? The tumour that is an indication of what's going on with the rest of the squatter clan (see an earlier blog post), has shrunk significantly. Even more shocking was the news that contrary to our total understanding of the situation, I do not need to have a mastectomy at all. Surgery to remove the lymph glands and affected area in the breast, yes, but 'there is absolutely no medical advantage to a mastectomy'.
This was shocking in the good sense. Dr D was beaming and almost bouncing up and down and I know that I was fighting off tears. Not that my boobs are anything to write home about, but I did not relish having two horrid silicone lumps to shlep around like reverse humpbacks.
I don't think anything is over until it's over, but I wanted to share the good news with all.

A spooky Tale

There are things in life that are beyone one's controle. Perhaps they are destiny, perhaps we simply lack the courage to confront them.
People who have had the terriying experience of being attacked, often admit that they sensed something was wrong. Should they have / could they have,  gotten out of the way?

Yesterday, I had a weird experience while doing my little stint at chemo.
There I sat, lolling in a chair, when I saw a large-ish, older-ish man come towards me. Now, chemo means that you are in a deep recliner, and a lot of parephenalia is hooked up physically to your body.  Wires, test-tubes, big machines. Strange premonitions took over my inner psyche. All around me, other patients and nurses were carrying on as normal. I was frozen. Unable to respond to the inappropriateness of my thoughts.
And then, sure enough, this chap pulls up a stool and sits not 2 feet away from my face. Looks straight at me. I was clearly his target.
In a voice like normal, he asked " what are you wearing on your head?". I was shocked. Remember, I am in a room devoted to chemotherapy. Everyone who gets there knows that. And why ask me?
Unable to protest or evade, I answered, like a lamb to the slaughter: "a scarf". Talk about stating the obvious!!
His immediate response was "why?". Even crazier......
Even crazier was that like an even smaller, weaker lamb, I replied "because I have no hair".

At that point, a woman sitting diagnally opposite me startied frienziedly jumping at the gentleman "here, here....". And slowly, he turned around saw her, got up and went over to his wife.

What really frightens me is the idea that she had sent this chap off for a little drive while she napped in the chem chair. Was he blind or was he demented? I will never know.

Hair

Have I already written about hair?
Open any magazine, or switch on your tv and gorgeous women with cascading sheets of shiny hair encourage you to have the same. We all know that it's a lot of garbage - your hair is your hair and work as you may at it, spend as you wish on it, it's not going to change a great deal.
So what's the real issue?
For me, right now, not having any hair to speak of (and yes, bits and pieces do remain - to date at least).
When I'm confronted with one of these in-your-face advertisements, I wonder if the sponsors realise who is actually watching or looking or reading.
I thought Elle / Vogue / another of the great women's magazines could do a lot for a lot of ladies out there by having a large article, updated periodically, on alternatives for woman without hair at all.
I know that the topic of  'black hair' has been discussed quite a lot of late. This is taking reality one step further.
I know that the big magazines pay a huge lip-service to the topic of breast cancer. Which of them hasn't got at least one pink ribbon somewhere on it's pages? So, put your money where your mouth is, stop pandering to the anorexic young and think about real ladies.

I was always entranced with the idea of shaving off all of my hair. I was enamoured with the idea of wearing a scarf over my head. I never had the guts for the former and the latter had certain connotations, which I thought better to avoid. Now, I have no choice.

Here is option #1: walk around sans locks with scalp showing in it's entirety. Strangely, considering my previous convictions, I am reluctant to make anyone else uncomfortable with looking at me. Yes, at home, I do walk around bald. Breathe skin, breathe.... But as soon as anyone comes over, I cover the evidence.
#2 the easiest cover-up is a lovely soft cap, gifted to me by Aunty L, who had cancer a while back (and is very well now). There is lots of space for head to breathe, they are loose, soft and yet cover it all. Somehow, they are a little like a housecoat: no matter how well they do the job, you wouldn't go to the mall in one. Well, you could, but you are not likely to do that.
#3 lots of other caps. I noticed ladies wearing baseball type caps at the chemotherapy recently. The gaps at the back clearly show the bald head. The visor is a plus in the Florida sunshine. I think it looks uncomfortable and not my style. Personal choice. I'm sure there are people wearing lots of other caps, but I have not seen any in my little forays into the outside world.
#4 scarves. This category can be divided into regular and bandana.
It's actually very difficult to find regular sized scarves. I think I mentioned in an earlier blog that most of what you find today is the shawl type and too long and narrow to be useful for us baldies.
Bandanas are great, if a teeny bit too small. One more inch on either side and they would be perfect. They don't have the long tail of a regular scarf, when tied around the head. That tail tags and pulls when you put on a cardigan, gets caught in everything and I'm paranoid it will fall into the toilette.
A magazine could do an entire article on various styles of tieing scarves, but most of us find one style and stick to it.
#5 wigs. Where does one begin? I think that will need a whole article and I don't feel up to writing it right now. No - not feeling sick, just bored and restless and want to go off and 'face the day'.
So, wigs will have to wait.

Lazy days

I wonder why some people wake up full of energy to rock and roll at 4am, while others are like logs until noon. Teenagers definately fall into the latter category, but what about the rest of us? Are these traits set in stone, or do they change along with altering circumstances? All these questions because today, for the first time I can remember, I opened my eyes and saw a number past 8am on the clock. I simply don't know what to make of it.

There have been two interesting pieces of 'news', which are not at all news to most other people:
Firstly, I heard a spot on tv yesterday in which they exhalted a charity that takes ladies with breast cancer on yaght day trips. It's nice that people make that kind of gesture, but who are they, who are they associated with and why would someone dealing with chemo want to be on a rocking boat in the sun (sunshine definately banned according to my doctor)? The whole thing makes me nauseous at the same time as full of admiration for people who engage in good deeds.
And yet another phenomenon cropped up in my consciousness today. We were out and about for a change and the sales assistant in the shop wore a badge that insinuated "cooking for a cure". Most curious... I was told that there is a group who cook charitably in aid of breast cancer. Golly!! Can I get in on that? I would definately cook / walk / try to help out, not to mention enjoy it to boot.

Adam has earrache and virus symptoms, so he has been banned from coming home until he is well. What terrible parents! Actually, I look forward to seeing my children and wish I could live a little more vicariously through them. They are way more interesting than I am. Lee is running around in Manhattan, doing all kinds of admirable things. Guy.. well, he is possibly most motivated of all. I wish he knew that his personality and character are so impressive. Ok, that was my boast for the day. My children put me in my place and keep me there without mercy.

That neulastin has made my bones a bit rubbery. I need to get busy so as to forget all of the minor symptoms. It's a total waste of time and energy considering them at all. I hope to be back on track by the end of next week. Enough kafoofaling!

Thursday morning: supposedly a 'not good day', but it has, thank G-d, started off very well. I am so grateful after the left leg beginning of the week. It should have been good - I got tons of drugs, but the result was to leave me so confused that I have a black hole in my memory  for what happened that day. Not only is that in itself frightening, but it left me confused for the next few days.
None of it was alleviated by the fact that our beloved kitty, Madame Minny, had to be finally put down. It was long overdue - 24 years old, in absolute misery, but the pain and loss is there and sure enough, I dreamt about her very clearly last night. Minny, please forgive me, but I hope that I can go as peacefully as you did (when my time comes).
I did manage to go for a small run on Tuesday, I did manage to get out and about during the week up until today and below, is a 'photo of Dad, Reena and I at Reuven's favourate bagel place.
Reena has started warming up to my kitchen, which is a great pleasure. There are home-made rusks for breakfast. Dare I??? She is an excellent cook. Makes a mean curry, which I love.
Does everyone see a theme screaming out here? A lot of food is being discussed.
Got up early to bid on some jewellery in the UK. Have to miss the Pier show in NY this weekend. As it happens, Lee is flying up to NY today and I am SOOOO jealous. Would love to be there too.
Maybe Chicago in a couple of months time. Reuven brought me a heavy-duty mask which I could wear on a 'plane. But getting through security with a mask and then all of my internal parephenalia...... ports and markers and all that??? Should be very interesting.

March 15th - Thursday

March 13th

Most peculiar session at chemotherapy yesterday. I got thoroughly knocked out, was awoken to be told that it was all over - about 2 or more hours quicker than previous experiences. Was too groggy to understand the doctor, nor able to ask relevant questions. So, today, will have to do some clarifying when I get there for my neulastin shot. Came home sort of shaky, but feel absolutely fine this morning. Yay.
Considering going for a walk with JH once it gets light. (up at 4am).
Did I tell about the Purim Party on Saturday night? It was a total hoot.
Everyone took a lot of pains to get into marvellous fancy dress and some of them wrote long sketches and poems. Everyone brought a dish, so the food was fab-mainly vegetarian, but some fish. While there were far too many deserts, the highlight for me was a tray of persimmons that Zevik M brought. It turned out they were actually from Israel. No surprise, the persimmons in this country are vile. Does this interest anyone? I doubt it. Anyway, I guzzled as many as I could take without showing utter immodesty. The taste lingers and begs for more. However, Zevik told me that these were the last ones of the batch. How sad.
Reuven and I won 4th prize, a pair of wooly leggins, for our Sara/Itsak sketch. It's the first time I ever won anything in my life, so don't laugh. Furthermore, prizes 1-3 were all increasingly pornographic fishnet underwear, so we actually lucked out.
Everyone was very happy and the party was a great success. Not common these days. Well done to all the people who put so much effort into it.
On Sunday night, we attended a lecture by a Rabbi who is involved in actively trying to assist Palestinians / other human rights issues between Israel and the Palestinians. Needless to say, there was a lot of hostility from part of the audience. I feel he is so right, but it is like spitting in the wind - a tiny voice in a huge ocean of hatred. Since this blog isn't about politics (or parties), I won't yap more about the subject, but anyone can email me personally if they are interested in the topic.
With my sister here, we had a skype session via Lee's computer with Mark, my brother-in-law and Sonia and some of her menagerie. Here is a link with my brother-in-law, who is a specialist in Aids in children and just gave a very important talk in Seattle:

http://www.medpagetoday.com/MeetingCoverage/CROIMeeting/31581

It's wonderful having family and friends staying in the house.

I have some pictures that I will have to get up to my computer from the 'phones and then to the blog.

Still not technically uptoscratch, but getting there with some help from Reuven.

You will all be shocked to know that my weight is now well over the amount I started off with. Not good at all. My tummy runneth over (my pants that is). I'm starting to look like an alien being from a horror movie.

Going for some tea and then JH and I are off. Have a great day all.

March 8th

As usual, I am way the first person up and about in this house. I might get up at 4am and I might lie in bed until 5. but, I am usually up before the rest of the family. Even JH continues snoring until the sun is well and truly doing it's business.
This is the secret of getting a whole lot done. Those early morning hours are way the most productive of the day. Problem sometimes, is what do you do with the rest of the day? If you lie around reading a book, it feels as though you are lazy and the guilt starts dancing in your mind. But that is not what I wanted to write about. I wanted to tell about why this day was so exciting:
As said, got up a little after 5am. Had a cup of tea and stressed over a bitch-from-hell customer. Put on my running shoes for the first time since January 19th  - a date I will not forget. JH went mad with excitement when he saw that. He pounded with his feet on the carpet and danced a crazy jig around my face, making it difficult to tie the laces. Hinted to a sleeping husband that I was going out and to come look for me if I didn't come back. Biggest dilemma, which colour bandana to wear (6 for $5.- at the fleamarket) and chose the brightest yellow. Forget to tell JH to 'sit' as I put on his lead, by when he was beyond happiness.
Opened the front door: rain. We didn't hesitate. Off the two of us went for our first 'run' in a very long time. Totally unfit, I made it to the corner of Cherry Hills before I started panting and puffing. Out of sheer embarrassment at my poor physical fitness, I managed to get as far as the corner of Canoe Brook. So, we made it 1/2 mile. I told myself we'll do better 'next time', whenever that will be, if at all. Part walked and part ran home. Soaked to the skin, I hurriedly threw off my clothes - a good opportunity to do the laundry and put on dry ones. Suddenly, it's after 8am. The rest of the house is still sleeping. I feel good.

As you can see, I still haven't quite got the hang of putting in more than one 'photo. Sorry, but to read the blurb that preambles, as well as see the most interesting of all the pictures - and you should recognise the most spiritual of the Buddha's disciples, you will have to hit the 'older entry' button.
Now, do you all see what an amazing teacher Val is?? Namaste!!!

just routine

Is it a good thing that I'm getting into a sort of routine? We are creatures of habit and it's very difficult for us to break what comes automatically. How do you insert 20 minutes of yoga into your day? 5 minutes twice a day of meditation? It sounds so easy, but it's like not eating too much.  Mt Everest in it's actual challenge.
Yesterday, Tuesday, I actually cooked a whole meal. There was salmon as the main part,  a fabulous curried veggy which they ate with 'lang tande'  (seriously lacking enthusiasm) and squashy and butter. Mmmm - I love it. Noone else touched it.
Jimmy has been shedding huge tufts of soft hair. What's going on? Reena will be here on Friday, but maybe I shouldn't wait that long to take him to the vet. I'd like her to go with me and to hear her opinion. Also, it's always good for them to know that another professional is watching what they do.
Reuven managed to download his 'phone 'photos to my computer. I'm going to try to add some of them to my blog.  Here goes:

better and better; fatter and fatter

I'm delighted to tell everyone that I feel very good. As we say in Silva, 'better and better'. Besides self-indulgent naps some afternoons, I am able to function as normal. Went so far as to drive to Palm Beach and back on Friday, on my own. First drive in ages.
My appetite is also better and better. Normally monstrous, I am getting fatter and fatter. My excuse to date was that I was trying to get my blood count numbers up. Today, I heard very sad news. What I eat has nothing to do with the blood numbers, which by the way, are ok, considering the treatment. No more excuses for what I eat. Not only that, but Dr. B said in plain English that I should watch it, as it will be difficult to get rid of when I come off the chemo. The bright side is that coming off chemo is part of our lexicon. One does look for clues in the doctors' verbiage.
So, my head spinning with dietary advice - not what I expected or wanted to hear, we went off to Costco to fill up on more things that are increasingly unnecessary. Totally starving by then, there was no way I was leaving without at least a hotdog. Reuven, who had planned a good lunch at a local restaurant, caved, so Guy, RR and I ate mustard and ketchup laden rolls with the usual Costco sausage inbetween. Why does it taste so much better there than anything I could make at home? Am I hungrier at Costco? I was not happy. Those ice creams - enormous on a stick, dipped first in boiling chocolate and then rolled in nuts!! Can't get up without.... So, in an effort to compromise, we shared one of them between the 3 of us. Actually, they are so big, that to my surprise, we got our fill with 1/3 of an icecream each. Mmmmm!
I got home and soon after an enormous parcel was delivered to my front door. Covered in Scottish stamps. Huge. I would have been happy to sit and look at it for a few days, just relishing the sheer size of it all. However, I knew that there are people in my house who have no problem opening other people's mail, and I wasn't taking that chance. Full of the most wonderful Scottish delights. I can now have a marvellous Scottish heather scented candle burn while I bath with gorgeous melty soaps, then get into my Scottish p.js, with my tartan hot water bottle (if you don't know the joys of a hotty, you have never been comforted while feeling ill) and a cup of good Scots tea. Scottish teddy will be joining me in bed. And that is only the start of it all. When I get up in the morning, I will make my porridge with a special stick - simple but brilliant. Reuven, you are so lucky to have me make your porridge. Remember, it's ready when the stick stands up straight in the pot. I could go on, but this is making me hungry and I haven't yet eaten my 7th meal of the day.
I have sent a job description to a friend at FAU and he is going to distribute it amongst a few faculties. Will I actually go through with this and have someone working for me? I'm not working for me these days. It is too much to think about.