more than 1 1/2 years later:
---------------------------
It's been a long time since I wrote on this blog.  Like whistling in the forest, I need to write about my cancer experiences, even if there is noone to read it.

They teach children to list different emotions. Well, I can attest to two, very different, very strong that I experienced over the last few days.
It was time for my bi-anual Petscan. That which decides who will live and who will die.

The appointment was made 6 weeks in advance. The day before, I have to semi-fast and am banned from all excercise (actually, a gift). Near noon, I get a 'phone call from the clinic that does the testing, DCA, that they do not have authorisation for the test. Total panic ensued. Turned out that the clerk in the oncologis's office forgot to fax them the prescription. It took me hours of stressful  begging 'phone calls to get her to make the one tiny little call to get the authorisation. When she finally did, it took less than half a minute to get the authorisation.

During the 2 hour test, in which your body is filled with radioactive and other weird substances, I was engulfed in a strong sense of grattitude for the year that I have been given. True, there were ups and downs, but my overwhelming emotion was thankfulness for everything that I have been given.

Upon leaving, I was told that the results would be out either that day, Friday, or Monday. I know that it usually takes minutes for the radiologist to read the test. Friday - no call. My friend, Dr J, told me to 'phone, but by that time, they'd all gone home. So, a worrying weekend. So much so, that I missed my early morning swim on Monday in order to get the 'phone call in first thing they got to work. Oh, I'm told, we faxed the results at 10.15am on Friday to Dr D. Problem was that it was Dr B who asked for the test. So they faxed them over. Then, the real nightmare began. No matter how I begged, Dr B's office would not tell me the results. The more time passed, the more it began to look very bleak and both RR and I were going through the sense of shock that this could be happening again. Eventually, after being clearly avoided for 2 hours, RR suggested that we go to the Doctor's office and tell them that we aren't moving until we get the results. The lady at the window, shut it hard and fast in our faces. We heard her demand over the 'phone "what should I do with them?" as though we were some kind of pestilence or disease that had to be sanitized. Well, after almost another hour, the clerk came out waving a paper "here it is", quite cheerfully. I asked what it meant - after all, I am not qualified to read medical reports. The results were that all is well. No sign of cancer.

Needless to say, when that sank in, I burst into tears and even RR was in tears. To have been put through such hell showed me that the staff, working for a doctor who is dealing with seriously sick people have exactly zero compassion. Their indifference to what we endured was incredible and showed me humanity at a pathetic level.  Clerical errors caused me untold anguish from before to after the test and not one person was willing to make the slightest effort to alleviate my distress.

Yes, it's been an incredible year and a half. Rollercoaster. This was one of the downs, that landed up, being an up. Maybe all of life is like that, but cancer is particularly so.

As R said: if it takes 5 years to say I'm in remission, then I am one down, 4 to go.

my new blog is on www.brendaginsbergblog.com
hope you like it.

Good morning.
My newest blogs are brendaginsbergblog.com
Since cancer is not an ongoing subject, I'm writing about other things that are of interest to me and I hope you too.
I hope you find it and enjoy it.
Brenda

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).