To reconstruct, or not to reconstruct?

Just when I was starting to think reconstruction might be straightforward...

http://well.blogs.nytimes.com/2013/05/20/no-easy-choices-on-breast-reconstruction/

  Of course, it is simple for a surgeon, but they don't have to live with the changed body 

JAMA Network | JAMA | Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement

Interesting article. Problem is, they can't always know the true nature of the tumour from a biopsy, and they don't know if it will develop. My tumour was mostly invasive ductal carcinoma (IDC), grade II, but there were some areas of ductal carcinoma in situ (DCIS) within it.  

I understand concerns about overdiagnosis and overtreatment of incidentalomas, but IDC has to start somewhere, and a lumpectomy for DCIS is better than mastectomy, chemo, and radiotherapy, and the risk of metastatic disease.

Comments on this story on the NYTimes are sceptical about this being driven by the desire to cut healthcare costs. An ounce of prevention ... 

JAMA Network | JAMA | Overdiagnosis and Overtreatment in Cancer:  An Opportunity for Improvement

11 down, 17 to go

I've completed 11 radiotherapy treatments today, so I'm more than one third of my way through being laid on a table and x-rayed and zapped each day. I'm starting to get so used to it, I've nearly dozed off the last two times, though that could be embarrassing: would I stay in my carefully-posed position, arms above head, hands grasping a T- bar, chin up almost as high as it will go? Even if I don't move, the position is perfect for snoring. That would make me feel at one with the elderly gents who come striding out of the treatment rooms, gowns hanging open to display wobbling abdomens, and disturbingly short shorts...

Today was a little frustrating. David woke me at 5am, as usual, and went downstairs to collect some souls to craft some armor to defeat the Eye of Cthulu on Terreria (his capacity to be absorbed in fantasy computer worlds and to diligently search, craft, research, and create things is impressive. I only hope he starts applying it to real-world projects soon). Nathaniel came to my room in a grumpy mood, and kept saying that he wanted to stay home. I managed to get him to go back to sleep, and I had a blissful sleep until about 730, when Nathaniel started coughing a nasty chesty cough, and I realised he probably needed to stay home. We dropped David off at school, and I rang the GP to get Nathaniel in in. They offered me 940 or 112; I took the earlier spot because I had RT at10, and was seeing my surgeon at 1130. They told me the GP is rarely late. Ben called me at 10 to see where I was (he was waiting to look after Nathaniel at the clinic). I was still waiting for the GP when Ben arrived 10 minutes later, so I went off to get zapped while Ben took Nathaniel to the doctor. It's a great advantage of living in Launceston, everything is so close together, and traffic and parking aren't problematic. The clinic were fine about me being late (RT only takes a few minutes per person, so they would have treated several people before they saw me), and Nathaniel was happy that the GP told him to take a few days off school. Not one, not a couple, but a few. Blast it! I want him to get better, but I value having time to myself. I start to get a little cranky by the end of the day if I don't get some time to settle in my own head - I took a lorazepam tonight because I was starting to feel so stressed about little boys who weren't going to bed!

The surgeon was happy with my progress. She said a little swelling of the mastectomy site during RT is normal, as there can be some inflammation. I have to see her again in November. Reconstruction will be no less than 12 months after RT finishes, so that the tissue can heal. I asked about recovery time after reconstruction. She said it requires one week in hospital, and about 6 weeks of recovery time, the first 3-4 weeks are quite uncomfortable due to pain from where the muscles are cut at the base of the rib cage to make the internal pockets to hold the implants. 

I'm still not sure about having a reconstruction, I wish I could just have the other breast off to even things up and remove a source of anxiety. At the moment I feel so unfit, I can't imagine ever feeling physically attractive again, but there's lots of exercise to be had in the coming months to improve my fitness, decrease my fatigue, and combat the ongoing post-chemo myalgia, which feels like a lactic acid buildup in my calves, thighs, biceps, and forearms. I also have hair to grow: I have a soft and fluffy cover on my head, which isn't very thick, and I have virtually no eyelashes or eyebrows. My eyebrows are so moth-eaten in appearance, I'm tempted to get them waxed off, so that they can grow back in a more consistent shape.. But then, they mightn't grow back at all. I've tried the eyebrow pencil tricks from the LGFB program, but it just rubs off. So I've decided it doesn't matter. I'm alive, and I'm going to eliminate cancer from my body. That's all that matters.

I'd better sleep now, and take advantage of the rain on the corrugated iron roof. Bliss

What's important?

Five RTs done, 23 to go.

It's been very wet and wintry here the last few days, time is passing slowly, it feels strange - I almost feel like I can reach out and touch time, as if it was moving like rain, slow and steady. 

I'm getting surprisingly little done, despite having all this time. 

I sleep in until 830 or nine, have breakfast, shower, walk Ginny (stopping to pat Rosie and tell her hoe much I love her), and then it's 1130 before I know it. I make lunch and try to serve and eat it before I have to rush off for radiation, then I'm home again, rest for a while, and it's time to prepare dinner. I check the news online to see if decency and good behaviour have returned to Australian politics, but the Guardian and Independent Australia sites show me the futility of my fantasies of  politicians' ability to show compassion for others and the ability to stand up for what is right. 

I find myself feeling stripped bare of my former passions and follies. When I think of how much time and enthusiasm I put into my work and advocating for my profession and the brain-injured people we serve, I don't know if I can muster it again. The welfare of my children seems most important, and I feel  sadness for all the time i missed enjoying  of their early years because I was working, sleep-deprived, or stressed. My family and friends, and all the other wonderful people I've encountered, seem more important than anything else. They're what I would miss if I were to leave this life, and all the time I've wasted worrying about how things appear seems futile and vain. The focus of society on appearance seems frivolous from this strange vantage point, and infomercials touting the benefits of anti-ageing creams seem as useless as moving the deck chairs on the Titanic. I'm more away for the fragility of life than I've ever been, and  watching healthy people wasting time on superficial things feels like watching a slow motion catastrophe, a bit like the monumental surge of the massive Japanese tsunami. Strangely, this feeling reminds me of the sense of wonder I felt after my children were born, when I perceived every single person as having once been a baby, helpless and dependent on others - it gave  me a sense of how similar we all are, despite the divergent paths and personalities we take in our lives.

I once had an experience, on the cusp of sleep, of being a droplet in a huge waterfall, that fell through time and infinite space, and that every living creature was also a droplet in that waterfall. We merged together and separated, created rainbows in the mist, but were all fundamentally interconnected and interdependent. 

I wish politicians would read and embrace Julian Burnside's recent article on asylum seekers in the SMH (read it here), instead of moving towards Rudd's new policy of placing boat arrivals in PNG. I'm so sad that fear and vote-seeking is driving policy in this area. We're all interconnected, and need to be kind to one another, and the planet that supports us. Life is so fragile, and wonderful, because it allows us to love and be loved.

Peace and love to all of you, and to every person you know.

Radiation

Three down, 25 to go.

I started having radiotherapy (RT for short) on Monday. A nurse led me to the change rooms and gave me a cheerful yellow gown (covered with manic white flowers) and told me to remove my upper garments, put my things in a shopping basket, and wait on the chair to be called. She said I was to take the gown home with me, and to bring it back for each treatment, so I felt embarrassed that I left it there after yesterday's session. At least my new gown is more funky, in surgical green, and I can pretend that I'm going to work in some high-tech environment... Until they have me lying on the bench with my left arm out of the sleeve and the left side of my torso uncovered, and they start drawing marks over my five tattoos and lining my midline up with some green lights that divide me into quarters.

The RT is given in a large room which has an X-ray table in the middle. They have various supports for each patient. I get a comfy foam knee support, and a black board that is angled up at about 15 degrees from a foam thing that stops my bum from sliding down. It's been used by short people the last couple of days, because my back has been on the red foam neck support when I've sat down, and they've had to put it to 'H' position while I've been lying there, arm and scar exposed. I'm going to check the position before I lie down tomorrow, it would be nice to slide in and have it fit properly, rather than have people on each side fiddling with levers under my thighs as I lie there. 

My arms need to be above my head for the treatment. There's a T- shaped bar to hold onto, and arm supports next to my head. My chin needs to be lifted up as well, so that it doesn't get zapped. They use a cathode ray tube like in normal X-rays, and it emits gamma radiation in a beam that is customized to my body. In the old days they used to use lead to shape the radiation field, but now they have multiple metal 'fingers' that direct the radiation in the desired shape. Interestingly, they lay a strip of something that looks like mashed potato, wrapped up in plastic, over my scar. This has the effect of amplifying the radiation to the scar, as there's thought to be a risk that cancer cells could be spread to the scar during the original surgery.

It all takes 5-10 minutes. They have been doing one or two X-rays to check that the alignment is right, and I was told today they need to make sure they're not irradiating my spinal cord, so there will be a few more X-rays this week. I've lost count of how many I've had this year, must be at least 10 chest X-rays before RT started. 

At the end of the treatment, the cheery technicians come back in and move the bench back away from the machine that sits over my chest. There's a long blue strap at the end of the bench to pull myself up on. I was glad to use it today, after discovering yesterday that it's very hard to put my arm back in the gown while lying down, and that it's much easier to sit up with the use of the strap than without it.

I was given two tubs of Sorbolene by one of the nurses after my first treatment, with instructions to use it twice a day. It sounds like I might start to get some itching by the end of the second week, and that some people get blisters, a bit like sunburn, after the third week. I'm to tell them if it happens, so they can give me appropriate dressings and creams. I'm being diligent with the Sorbolene, in the hope that it will protect me from too much skin irritation. 

So that's RT - I think I'll have the measurements memorized soon. H for the bum-rest, 3 for the handles, 92, 84, and some other numbers that they recite as they line me up under the machine. It's very weird, but not unpleasant, and I'm feeling better each day since chemo stopped. 

I walked around the block today, and didn't need to stop when coming up the stairs. (yipee!). My calves, quads, biceps, and forearms are still aching throughout the day and night  and I still feel drained, but I'm getting used to it and am determined to get as fit as I can (even if it's achieved at a snail's pace). One day at a time...it helps so much to have the support of wonderful family, friends, and colleagues. Thank you all. Xx

Positive thinking

What do people mean when they tell someone with cancer to "stay positive"?

It's the most common homily I've encountered since January, and while I appreciate the good wishes behind it, it's really starting to irk me. 

Imagine you have been diagnosed with a life-changing, potentially life-threatening illness. You feel worried, even scared at times. You wish it hadn't happened, you keep reviewing your life for all the things you could have done, should have done, differently: More exercise, more vegetables, less sugar, less alcohol, less stress, more fun, less work, more family. You keep these ruminations largely to yourself because you feel foolish engaging in such a futile exercise. You keep your fears to yourself because you worry about becoming overwhelmed if you speak them out loud. You do your best to present as normally as possible to others, even though it feels like things will never be the same again.

Then someone asks how you are, and you let a little of what you're feeling or going through slip out. It's taking a risk - will they listen and empathise? Will they pity you? Will they slowly clam up and avoid you studiously afterwards? Will they come out with the positivity mantra, which is coloured by the rest of the interaction?

If a person listens well, they rarely say "keep positive". They ask questions and seem genuinely interested in hearing the response. They might provide embarrassing praise for how well you're coping with everything, even though you feel, at best, like you're just getting by, or at worst, like you're not sure how you're managing to even feed yourself some days. 

Being told to stay positive sometimes makes me feel like I'm being reprimanded for talking about the difficult stuff (if only the listener knew the half of it!). Other times it feels like a plea from the listener for me to shut up and stop complaining (not knowing how guilty I feel for burdening others with anything). Other times it seems like they're implying that I'm not being positive about anything (this makes me really angry- do you know how much effort it takes at times not to succumb to self-pity and anger at the unfairness of fate?). And at other times its as useless as being told to drink water and breathe.

The problem with being told to stay positive, for me, is that it doesn't help one iota. Maybe I'm weird in that I've grasped the importance of positive thinking for most of my life. But in case it helps you when speaking to people going through difficult times, this is what I'd prefer to being told to stay positive: I'd prefer to feel that I am being listened to, that my concerns and experiences aren't being dismissed, and to receive some validating comments, like "you've been going through a hard time, it's great that you're hanging in there and not giving up." Or "wow! That's tough/unlucky/awful. Can I come over and cook for you/take you out for lunch/take you shopping some time?"

Speaking for myself, I don't want to be told to stay positive. I'd rather feel listened to, valued, appreciated, and then engaged in a conversation about broader things. Cancer is just something crappy that's happened to me, it doesn't define me.

3 weeks post-chemo

Friday 12th July

I saw my medical oncologist today, he said my liver functions are returning to normal, and that my weight gain (8kg in 6 months, most in the last few months) is to be expected. He gave me a script for Tamoxifen, but my radiation oncologist said not to take it until after my radiation is finished. So that gives me 6 weeks to get fitter and see if I can lose some of this excess weight before I start the medication that I will take daily for the next ten years, the medication that will launch me into early menopause, make me gain weight, and put me at risk of endometrial cancer, deep vein thrombosis, and pulmonary embolism. Oh, and it will reduce my risk of breast cancer recurrence as well. Yippee.

My new mantra is "it's better than dying of cancer". 

Helps put a positive spin on the side effects, experienced  or potential. 

My medical oncologist isn't a very cheerful person, he has an air of sad resignation when discussing most things, and was irritatingly pessimistic about my hopes of losing weight. While I don't want false optimism, it would be nice to be given a little encouragement. None of the famous breast cancer survivors seem to have gained that much weight.  I'm not going to accept that it's inevitable, and will work on getting as fit as I can, and eating a much healthier diet. Now that my energy is increasing, it should be easier to put more effort into cooking. I hate being the only cook in the house! 

I'm feeling better each day, though I still ache like I've walked 50km, I need the kids to pull me up off the sofa, and I struggle to stand if I squat down to get something. I'm hoping this will pass soon.

I'm going to buy three big boxes of chocolates and some thank you cards on the weekend, and take them to the chemo clinic, the emergency department, and the cancer ward. The staff there were fantastic, and I wish I could get never-ending boxes of chocolates for them. It makes such a difference to have kind and cheerful people looking after you when you feel revolting. At the moment, I'm not ready to return to a role as a healthcare professional, I'm still getting used to caring for myself, I don't think I'd be able to help anyone else. 

Someone said to me that I won't know myself in 6 months time, I'll be feeling so much better. I replyed that I don't know myself at the moment. I don't feel like myself, this lack of drive and energy is profoundly unlike me. But it's also a fascinating time, to have my life turned upside down, to watch time move by more slowly, to experience changes in how I function, and to see how that effects the people around me. A bit like watching a near miss in slow motion... 

28 cycles of radiotherapy (RT) to go. Onwards and upwards!

coming out the other side (in defence of chemo)

Tuesday 2 July 2013, 927pm

I'm starting to feel better. Not sure how I know this, as I'm still exhausted, I have to partially pull myself up the stairs, and my gut is grumbling obscenely. I've gained 8 kg in the past 5 months, and my new jeans are tight. I barely slept last night, my head was cold, my legs too hot, and I had to keep running to the loo every 60-90 minutes thanks to the lactulose, which apparently ferments in the gut and causes bloating and gas. I tried sleeping on the couch from 430 to 530, but ended up having a shower and preparing the boys' lunches, sleep has eluded me all day. But I'm still feeling better - the end of chemo is in sight.

So yes, I should be turning out the  light and sleeping now, but I want to make my eyes so tired that I can't keep them open, and I need to write in defence of chemo, now that I'm emerging from 19 weeks of treatment.

My biggest fear in writing this blog has been that it will make people more afraid of cancer, that it might deter people from seeking a diagnosis and help because chemo has been such an ordeal for me. I have had some revoltingly low times over the last five months, but it's all temporary, and the end goal - of being cancer-free and able to see my children grow up and have children of their own, and to contribute to the world in some meaningful way - is worth it

Breast cancer affects one in eight women over their lifetime. If it's caught early, the prognosis is very good. Even though I had a whopper of a tumour, at 7 cm, it still hadn't spread to my lymph nodes or anywhere else in my body, so my prognosis is good. Or, as my radiation oncologist said this evening, I've whipped it.

If breast cancer is detected earlier, people can be treated with a lumpectomy and different kinds of chemotherapy or radiotherapy alone. I know people with more aggressive tumours than mine who have coped better with treatment. The nurses in the Holman Clinic tell me I've just been very unlucky, that other people have sailed through my treatment schedule with minimal complications and sidecrffects. I suspect that I may have had a more torrid time than some because I came into this year feeling burnt out after the death of my father from dementia early last year, and the loss of my 51 year-old cousin to cervical cancer just before the neuropsychology conference that I organised. Not to mention the stress of belonging to the 'sandwich generation' that has involved caring for my 89 year-old mother-in-law from 2005 to late last year while simultaneously trying to raise two young boys and lobbying for better access for neuropsychological services for people with brain disorders. I feel tired just thinking of that.

So, I haven't had the best of times, but my cancer should be eliminated once all of this treatment is over.

Having seen a few people dying of cancer, I think going through chemotherapy is a far better option. It's a little like having a baby - while it might be nice to have a natural labour with minimal interventions, the important thing is having a healthy child at the end of it (Thanks, Caroline, for the analogy). So while there are all kinds of alternative to chemotherapy touted on the web, and conspiracy theories to suggest that pharmaceutical companies are suppressing evidence that natural therapies are better than chemo, I'd rather have gone through the last five months than put my faith in vegetable juices, frozen lemons, yoghurt and flaxseed oil, or any of the other non-chemo "cures" that are out there. I don't mind having them in addition to conventional therapies, but with my longevity on the line, I'm not willing to gamble and lose. I accept that death is going to happen to all of us, but I'm going to do my best to not die of cancer. There's still so much I want to do, and I want to be around for my wonderful boys.

I'm not satisfied with this post - I still worry that people might be deterred by my experience. 

I hope that everyone who reads this will look after their health - eat, sleep, exercise, drink, socialise, think, and love well. And that you'll all ask questions and seek advice if you're worried about your health, so that any problems can be detected early to give you the best possible outcome.

Sometimes, of course, shite happens. I hope that sharing my experience will help people to keep going, to not give up, even when it seems things couldn't possibly get worse. These last few months have shown me that nothing is permanent, and that impermanence doesn't matter. Love for and from family and friends, and kindness from unexpected people, has helped sustain me and will make me stronger in the years ahead. It's the most powerful force in the universe, and we all need to cultivate it, every day.

(oh God, I hope that doesn't sound like a Hallmark card - forgive me!)

Next up - 28 radiation treatments, and 10 years of tamoxifen. And I think I might get me some perky new boobs next year. I will be feeling better then. Just look at our 15yo Tibetan spaniel. Patrul (aka Popo). This time last year he was hairless and having treatment for cutaneous lymphoma. Now he's a sleepy old man with fluffy puppy hair :)