Please know that every person’s journey with chemo is different. For some its a doddle, for others its a war, for others its a spiritual journey or any combination thereof. Every person’s body responds differently to chemo, you can go into it and get rid of arthritis instead of finding it exacerbated, you can find life long conditions suddenly amplified, you can find you get the extended warranty/expiry date you’re looking for, or you can find its a real tough road on the way out. I’m doing adjuvant chemo, 4 lots of 3 week cycles for breast cancer. I have a life long history of immune and autoimmune dysfunction, a history of brain injury effecting my autonomic nervous system, a daunting family cancer history on one side and inbreeding on the other. I am doing my journey as someone with Autism and DID and I bring all that to the table. With cancer there is no ‘Mary Bloggs’. Every person’s body and brain, personality, environment, baggage and support, identity/identities and orientation, hopes and pessimism come to the table. I wish any of you well on your own journies with cancer or supporting those with it. Here’s the chemo part of my journey.

CHEMO CYCLE 1/4
DAY ONE:
Day one on Mars, Thurs 1st Sept
Landing on Mars – first day of chemotherapy

All started great. Went along to the day ward with hubby Chris and pal Denise who provide a great humanizing atmosphere to this scary adventure. Started Chemo 12 noon, after lots of admission paper and debriefing.

I had drank around 1.5 liters from 8am-12 noon and walked from 9-10 and rugged up so all my blood vessels were warm and raised. I’d been doing stress balls and mini weights, ginkgo biloba, grape seed extract and honey, anything not to ever do the previous 7 collapses before final ultrasound guided vein navigation. So this time, veins were good through whole session.

SIDE EFFECTS & PROGRESS
no, I don’t usually get this detailed but wanted to give you folks some idea of the journey for me and Chris once Denise left around 3pm

1. developed nasal congestion 2pm,
2. developed chest constriction with increased severity constricting up to 30% lung capacity by around 2.30pm
3. slowly ate through small amount of combination rice noodles 3pm-4pm but found nothing was moving… hiccups, belching, the food seemed stuck in my chest.
4. further chest constriction relieved fully with nebuliser and Ventolin around 5pm
5. released home around 45 min later when congestion broke up
6. visual disturbance 6pm on way home 6.30-7pm
7. developed mild nausea, dizziness, hiccups, belching 6.30-7pm – took Motillium to allay nausea
8. acute muscle tightness in my legs 7pm – took magnesium to allay then prepared lemon balm tea as muscle relaxant to allay any related cramping seemed to work.
9. significant swelling in feet, calves, thighs, hands by 7-7.30pm – took dandelion coffee as diuretic to allay and put on Ted stockings.
10. tried to eat 4-6 spoons of tuna pasta, very slowly from 7pm-8pm,
11. hiccups, belching, very tight in top of gut but lungs still ok
12. rapid breathing, tremor, low temp (34C) increased difficulty with balance, mobility (waddling) re edema in thighs and groin in particular went to hospital.
13. eventually managed to pass 2-5 cups of urine between 8pm-3am – few, thought my legs would explode
14. Edema decreased – yay!
15. had 1 normal bowel movement finally, then fatigue set in and once safe enough fell asleep
16. woke 2.30 am with asthma (rattly, wheezy, … almost like my lungs were ‘frothy’, effervescing… scary! … but not constricted)
17. managed to eat a small can of apple sauce 2-3am – yay! , worked ok, added some acidophilus and balanced liquid vitamin-mineral as having eating much.
18. hydrating with lemon balm tea ok
19. pins/needles in hands, some edema in neck and arms so looked like a wrestler
20. went back on dandelion coffee for the edema
21. did some yoga to get circulation/swelling sorted, yes, at 3am.
22. we have a massage chair, that seemed to help.
23. 3am, first 1 normal full urination and next (stable) bowel movement, yay!
24. urination continued to be full around hourly, yay!

Went back to sleep next to my wonderful, tired, scared, asleep husband hoping I wouldn’t have a stroke or heart attack in my sleep. Sometimes you’ve just got to trust to life. I felt my body had some shock and was unstable but is stabilizing. The Dexymathasone (steroids) countered most of the side effects but wow, what a scary ride.

And Chris, well we had times we feared, times he just held me disoriented, my swollen legs up the hospital wall, my body in tremors a temp of 34.5C, rapid breathing. There were times last night this wonderful tired man stayed up as long as he could and I left him sleeping not knowing if I might be alive when he woke up or in what shape.

And next day… pretty much just like a mild hangover. The rocket may have had a rough landing on Mars but after that it began to be survivable. Once Chris did his work from home, we went walking at a reservoir with kangaroos, I slept on his lap as he watched TV, we baked bread, made banana custard, went walking and it was of course a wonderful day. That’s cancer for you.

And of course every chemo adventure and every cancer journey will be different. Some people will find it easy the whole way, some will find it really challenging, some will find it hills and valleys, some will find it a roller coaster. But whilst chemo may have side effects, but a 25% chance of secondaries killing me sounds like a bigger side effect than chemo will be.

DAY THREE
Day three on Mars, Sunday 4th Sept
Day two went fairly well in terms of Martian well being. We developed a rating scale of 0-10 where 0 was dead, 1-2 was so dangerous you needed to go to the hospital, 3-4 was ‘dodgy’ and aware you could end up sliding to 2, a score of 5-6 was a fairly usual day on Mars (in chemo) and a 7-8 was a great day on Mars, almost passable for life on earth. A 9-10 and nobody would even know you were going through chemo, and even you might momentarily forget.

So day 3 started seemingly ok, sure there’s rocks on Mars and seems some of them were well stuck in my digestive tract which was going nowhere since the early hours of Friday morning. Gravity works differently on Mars, hence things like edema blowing me up like an inflatable and a bowel which has forgotten what gravity is. But 8am we had an adventure. I noticed I was starting to fade, getting faint, pins and needles and numb lips. Took my temperature as Chris slept and realised it was 33.8C (normal is 36.5). Under 35 and you are heading toward hypothermia and should be worried by 34C. Coma sets in around 32C so we had some room to move. We did what we thought made sense, filled a bath with steaming water, put on an electric blanket, in I got. I asked Chris to check on the internet if we were doing the right thing. Apparently we were going exactly what we shouldn’t! Heating the external body too fast can suddenly pump cold blood straight to the heart and forget cancer, it would be the heart attack that killed me. So quickly out of the bath I got. No rubbing me down either, no electric blanket, just get me laid down, covers over me and raise my body temp slowly. Within an hour I was 35C and safe.

Around 6pm I was upside down on our massage chair, as seems standard on Mars when having edema, legs in the air, when a family friend and local restauranteur dropped by armed with food. To add to the surrealism, the food was from our USA friend, Bev and her family in LA, delivered here, to me, upside down in a massage chair 10,000 miles away and supported by my fab husband snuggling my feet up in the air. Soon another friend arrived, Zoe, and with Chris they used the toothpaste technique on my legs to try and squeeze the excess fluid back down toward my heart. Only on Mars do you hang out with your friends and family essentially standing on your head.

We decided that as I was getting like the Michelin Man and the bowel dept was on strike that this was scary so off to the after hours GP. Did enough laxatives to blast my way half way back to earth and by morning I felt like I had laid a nest of moon rocks. The rest of the day went rather well in Martian terms rating generally a 6 out of 10 but intermittent fatigue coming as standard now by 2pm and bed time by 7pm. That’s Mars for you.

So food is still by the cup full, walking around like a horse with colic trying to find remnants of what was once digestion, but other than a range of paroxysmal episodic intermittent but worrying shitola (a technical term on Mars), I’m doing reasonably in chemo terms.

DAY FIVE
Day five on Mars, Tuesday 6th Sept
1am: Chris learned the asthma 101. Out came the sprays, the nebuliser, the humidifier and tea tree, the Vick’s and into the massage chair I then went on the tapping program to try and get oxygen. Obviously Earth lungs clashed with Mars atmosphere.
Asleep after that, Chris was now probably ready to join St John’s Ambulance… he’d done lymphedema massage, hypothermia treatment, asthma recovery.

So we were really pleased when the next morning Chris woke to find I’d researched 2hrs of YouTube clips on lymphedema massage and now knew how to get my legs, stomach, arms unswollen before we faced it getting to a less reversible stage.

Essentially the legs can’t drain if lymph is blocked at the stomach and the stomach can’t drain if its blocked at the clavicle and the arms can’t drain if its blocked anywhere from the shoulders and neck to the clavicle. So the trick was to get the clavicle clear, get the stomach clear and given the lymph a chance to drain. Through lymphatic massage techniques and stomach related techniques off it was pumping all this waste of probable antibodies, dead and damaged cells, chemo drugs etc out to elimination.

But at 11.30 ish I started turning cold. I was wearing hat, coat, etc, and in a room with a 20+ temp, but there was no stopping my body turning itself icy. We took my temp but it was in Fahrenheit and we didn’t have the Celsius thermometer with us. Figured food would fix it so off we went for lunch at 1pm.
At 2pm something was wrong. Sure, I’d eaten, but inside my clothing my legs were really cold, toes, fingers like winter, my breathing getting faster, labored, I was fogging over, lips numb, fingers tingling and had started to get chills. Didn’t want to bother Chris and hoped to solve it. I just didn’t want any more hypothermia, he had been worried enough. So I tried to fix it myself, putting on leggings, another top, a warmer jumper. But I knew I was in trouble. I called as best I could and Chris came from the other room. He took my temp. It was 34.1C . We had another hypothermia episode on our hands. So off into bed I went, scarf, gloves, felt hat, well rugged, and sure enough, 30 min later I was at 35C, 30 more min and we were at 36C. We decided to go to the pharmacy and get another thermometer, one for the ear. Yep, same readings, the one under the tongue had been reliable. We thought I’d now be stable, but nope, the temp decided to plummet again, back down to 44.7. Back in bed we tried to get my body to behave itself. This time it did. Phew!

I got into Yoga with the Wii Fit (My Fitness Coach), even managed some minor aerobics, did body rolling to move the lymph and lots of lymph drainage techniques with adequate hydration and breaks to come back and do more, then something amazing happened. I had been severely fatigued by around 2-4pm since chemo and 7pm was my general crash out bed time. I realised my edema was right down, my legs and stomach were almost normal. By arms had only minor edema and my neck, shoulders and face were fine. Suddenly I was not in a relatively brain fogged 5-6 on Mars, I instead found it was 10pm and I was at a 9… pretty much earth level.

So would this last? Did it mean I’d stabilised? We don’t know. One theory is that chemo caused an extreme autoimmune response re antibodies that flooded the lymph system together with a level of waste it couldn’t sustain. Then, theoretically, this may have triggered off a cascade of intermittent paroxysmal autonomic nervous system effects – tremor, palpitations, hypothermia episodes as part of a severely disorganised nervous system (brain). Then, once the lymph system was unloaded, the nervous system began to reorganise and stabilise. Who knows. But what a ride!

From here day 7-14 is when red and white blood cells can go very deficient – anemia and neutropenia with expected gradual recovery after that just in time for the next chemo cycle at week 3.
Compared to what I’ve been through that may be far easier!

DAY SEVEN
Day seven on Mars, Thursday 8th Sept
Yesterday was a glorious day. I came out of a fog. I had little idea I’d been really drifting up and down states of consciousness and nothing had glued together. I knew I was struggling cognitively to hold things together, was taking it all moment by moment, hour by hour, but its funny how its not until you glue together that you realise you have no cohesive memory whatsoever of the last 7 days. It was all in fragments. Guess Mars scrambles the memory banks. But Chris pieced them all back together of our adventures over the week and somewhere amidst the relief and tears I felt like this was now the start of some kind of normality. I finally had reached an 8-9 on Mars, I was experiencing things far closer to how they are on Earth. What a relief.

DAY EIGHT
Day eight Friday 9th Sept
smooth landing on Earth since around Thursday.
body doing well now (in chemo terms)
brain is rather fried though (emerged from chemo brain on Thursday and it has fried some circuitry upstairs but I’m very good at mastering life with half a brain switched on)

sure, there’s strange little niggles, tea tastes like salt water!
my mouth feels wallpapered
every tooth has the grumps in the nerve dept
my skin says its been to Egypt

but compared to the surrealism of what the first week dished out this stuff’s a doddle.
but chemo brain is interesting… guess its very 60s and I didn’t have any LSD but I’m told I did well on Mars before I got back.

DAY NINE
Day nine, Sat 10th Sept

week 2 isn’t so bad
seems grey fingernails are all the rage on Mars
compared to week 1, even though I probably have no white cells right now
I feel, yes Sir, I can boogie….

Well, I did until Chris and I were out and I blew my nose and found it bleeding… rather alarming but only mild, no biggie…. quick check, and yes, its part of how chemo attacks the white cells, red cells, platelets, so blood clotting gets dodgy for a while, hence nose bleeds… bloody Mars atmosphere!

DAY FIFTEEN
Day fifteen, Thurs 16th Sept
At age 2 one of the things I’d been in a 3 day hospital observation for what for having no pain response. I had no natural sense of hunger or thirst and tended to drink until I would couldn’t hold any more or didn’t drink at all and it was hard to get me to eat more than a few mouthfuls before I’d wander off. In my teens and twenties I’d go without food until I was fainting and learned the signs of hypoglycemia as the signs for hunger. But if other people were eating, I’d often be fine with having some. Just I didn’t have natural food or drink seeking behaviours.

I had tremors since I was 9. I have always had low blood pressure since I can remember learning of it in my teens. I had fainting when I got out of bed or out of the bath since my teens. The pins and needles whilst sleeping and sometimes when awake seemed ‘usual’. I was in my teens when the doctor first found an irregular heart beat, but it corrected itself so nobody thought anything of it.

I knew I had circulatory issues since I had regular dark ‘ladders’ appear on my legs as a kid, and that my body could sudden turn cold and I’d go dizzy with numb fingers and toes even in the summer.

I’d had my leg muscles fail to respond and had to lift my legs out of the car or pull myself up from the floor with my hands and dropped trays and plates occasionally because my muscles just suddenly failed but it was all intermittent. I’d had Optic Neuritis for 3 mths after a flu a few years ago so had testing for MS but no signs of it so it was deemed just due to brain inflammation. I knew I had ‘panic attacks’, that my heart was having really sudden up and down regulation, that my breathing went strange, particularly when I slept and that I’d had chronic fight/flight reactions since infancy. That my bowel didn’t seem to consistently grasp what peristalsis was so had to be babysat all my life.

So clearly I was not from Earth, but from Gadoodleborgonia, but we bought a pulse meter this week (35 bucks via Ebay!). Normal pulse rate is between 60-100. Resting pulse rate is around 60-85. With exercise this would normally go up around 100. The pulse would usually increase or decrease steadily and tend to head in one direction or the other then stabilise there.

Chris checked his pulse… a fairly nice steady resting pulse hovering around 58-60 with an exercising pulse around 85-90 that quickly stabilised steadily one beat at a time back to his resting pulse rate. And mine? Well my resting rate was jumping anywhere between 107 and 89 at times within around 3 seconds, but in general didn’t appear to just increase or decrease it seemed to go up and down like a yo yo.

Chris woke at 3am so as I’d woken I took my pulse to see what it would be like on waking. I did not startle on waking nor feel anxious nor had I been having nightmares etc. My pulse rate was 110 BPM and this then jumped up and down between 98 and 105 then on sitting up it went to 95 and then dipped straight to 85 and then back into the 90s. Chris took his for comparison, it was 59 and stable. I took my temp to see if there was any relationship there but that is normal and has been quite stable since around day 7.

On waking at 7am my pulse was 98 and jumped about until I went upstairs. Then it stabilised for around 10 seconds at 85, the longest it has so far stayed stable, then suddenly leapt to 115, then fluctuating again until staying more or less in the 90s.

On eating lunch I checked my pulse rate. It jumped straight from 74 to 83 then straight from there up to 101, then to 111. Wild stuff! I AM an alien.

I measured my rate upon leaving home for the GP, it was 100 (resting). I walked 15 minutes to the GP and by the time I got half way instead of going up it had gone down to 74! By the time I reached the GPs office I felt it was up and checked, half expecting something scary or excessive, but no, it was a relatively low 130! Then in 2 seconds it was back to 80! Then of course, jumped up to 100… why not?

I researched this a bit this morning and found its closest description as Postural Orthostatic Tachycardia Syndrome which I see tends to happen to those with CFS/FM. I had dx of CFS since my 20s and of FM since my 30s and I see that these seem to all come under the same umbrella of Dysautonomia (Autonomic Nervous System effects). I see that leaps of 10-30 BPM are not unusual and high pulse whilst sleeping is also not unusual with POTS.

I have had the associated dizziness whilst sleeping and getting up probably since my teens but thought it was simply low blood pressure or circulatory problems (which I have always tended to and had the circulatory issues since childhood). I hadn’t linked these with the tachycardia whilst sleeping but understanding this stuff helps me grasp it as a system.

Is irregular pulse and other Dysautonomia symptoms listed as a side effect of the chemo drug Taxotere? Yes, as a rare side effect. But I figure I’ve survived this long with this stuff so its not going to kill me just because its more present with the chemo. And dying from secondaries sounds like a much bigger side effect of not doing chemo, so chemo cycles 2, 3 and 4, here I come.

Saw the GP and took the pulse meter with me. He checked his own to check the pulse meter was functioning properly. Then he took mine which did its usual fancy dancing there in his office and he confirmed, yes, this was Dysautonomia. We discussed whether it was a serious health risk and I told him that even with 15 minutes of exercise it only reached 130 and that its lowest had only been 77. Given dangerous would be below 50 or over 180, seems that although it is clearly highly irregular and lacking regulation, it is dancing safely within the safety range! We talked about whether it would be worth doing something about this after chemo but the GP felt they’d only say what we already know, that its Dysautonomia and that unless its being dangerous, it is just the way my brain and body work (or fail to work) together.

WHITE CELLS
Oh Where oh Where have my white cells gone, oh where oh where can they be…..

did a blood test on Tuesday 11th Sept to see how much of my white cell count the chemo had knocked out.

White cell count was 1.6 (ref range 4.0-10.0)

this included:

Neutrophils 0.00 (ref range 2.00-7.00)
Eosinophils 0.00 (ref range 0.02-0.50)

and

Basophils 0.02 (ref range 0.02-0.10)
Monocytes 0.70 (ref range 0.20-1.00)
Lymphocytes 0.92 (ref range 1.00-3.00)

Guess that’s my visit to Neutropenia… now either they make some more in there or its, where’s the Neulaster?

DAY NINETEEN
Day nineteen, Tuesday 20th Sept
pop the corks, roll out the champagne… guess who got a normal white cell count!
from 0.00 to normal in 8 days!
woo hoo

sure I did quite some protocol for that… won’t bore you with the details but I’d like to thank a soy/legume free diet, glutathione, echinacea, astragalus, propolis and their pals like vit D drops, liquid multivitamin-minerals, acidophilus, sleep, sunshine 🙂 and love probably helped (thanks Chris and support team).

Oncologist says its not usual people go down to zero in the white cell dept but not unheard of
and he was really pleased to see it recover itself
reckon we were both rather gobsmacked

yay!!!

never thought I’d be so happy to get back to chemo
but with no white cells it was looking rather bleak
no white cells, no chemo and that meant either Neulaster to kick start them (read probably bone pain and possible spleen enlargement as well as risk of rupture and bye bye spleen and chemo) and the other choices… call a first degree relative for bone marrow (aik! … if you know the family history you’d know that’s about as appealing as asking Hannibal Lector for a date) or leave the chemo queue and take my chances with floating cancer cells they’ve already said have a 1 in 4 chance of killing me with secondaries if I don’t kill them first.

So scareeeeeee stuff!

Anyway, I’m so smiling right now, blissed 😉
Chemo here I come
Cancer cells, I will kick your butt to Mars and beyond
side effects, I’m bigger than you, and outlasted you already
another 3 chemo cycles, bring it on
I’m getting my new expiry date

just watch me.

now where’s that space shuttle
Mars, you prepare that landing strip
I’m coming for trip number 2.

Merrily,

Rocky Balboa 😉

DAY TWENTY
Day Twenty, Wednesday 21st Sept
at 8pm yesterday I was celebrating white cells, but at 2am this morning I was on a drip at the A&E for a urinary tract infection and let go at 6am with a good ol’ Bactrim type drug… for those who don’t have the luxury a UTI means urgency to pee every 30 min, you pee around a teaspoon which feels like peeing pure pain (and can be blood in the urine which is very unnerving) and still feel almost immediately bursting to go again. So that was my night in hospital. Grateful they have got on the case though. I thought it might put a halt to chemo tomorrow, but nope, its apparently back for cycle 2, UTI infection and antibiotics and all… wonderful… hmmm… but I know I’m lucky, because if we put off return for the next chemo cycle cancer cells can build resistance to the drugs and then chemo is useless and ultimately the cancer cells win. So I’m boldly taking my medicine tomorrow.

Well, by lunchtime the Bactrim type drug worked a treat on the UTI… yay, not peeing blood, no pain, not weeing urgent teaspoons of wee every 30 min, I have my body back! Yay for Bactrim and its cousins! And the steroids i have before a chemo session made me EAT… I ate and ate and ate… I had been off my food with the infection… so after a good sleep, Rocky IS ready for chemo, antibiotics and all,…. bring it on 🙂 I’m ready for my return trip to Mars, I’m off to the slip stream.

CHEMO CYCLE 2/4
DAY TWENTY-ONE
Day Twenty-one, Thurs 22nd Sept
The oncologist, a friendly, patient, personable specialist named Dr James decided that after last cycle’s fiascos with asthma, Autonomic Nervous System/dysautonomia dramas and edema that we’d significantly up the steroids this round. My white cells had shown themselves on the blood test but turned out to be rather toothless tigers the moment they were blinked at by a urinary tract infection. This is because they are like soldiers but without weaponry, they went to the front line and forget their jobs. Bummer. So it would be Neulaster injections for me tomorrow, to cover the bases. The idea is that if I have enough semi incompetent white cell soldiers that if there’s enough of them they just might work out how to fight bugs (I’m also IgA and IgG2 deficient). So Neuslaster can kick start bone marrow and harass the spleen, cause bone pain, but who knows, my body is Gadoodleborgonian, it may bring me nothing but joy!

I had worked on my veins, worn my scarf, leggings, jumper, fingerless gloves, taken Manuka honey the last two days, was well hydrated. They looked like Arnie Schwarzenegger veins. Unfortunately this meant that I forget to remind the very friendly oncology nurse that under that impressive vein facade were spindly little veins. In she went with the regular needle to insert the cannula, again, and again, but it was going nowhere, the vein narrowed to a spindle. She quit, leaving a pumped up 1 inch raised bruise across the once wonderful veins in the back of my only usable hand (the other can’t be used because of Mastectomy). Buggar, I forgot to ask for the baby needle. So then she tried with the baby needle and luckily it worked higher up my arm.

Chemo went well, just me and Chris this time, Denise had to drop out on account of having a cold which would compromise chemo patients. It went fairly well, then the usual chest tension and start of congestion but no biggie. The bladder decided to dwindle to working by the teaspoon full, the bowel hadn’t spoken to me since yesterdays pre-chemo steroid prep (Dexamethasone). But I was armed with compression stockings and had been on a soft food diet, had my dandelion coffee ready and now sugar free cranberry juice. I’d be ok.

And it was pretty good really. Edema centred around my belly and diaphragm was a rock. But ankles, legs, groin, arms, neck, face really got off lightly this time thanks to walking, yoga, lymphedema massage and home made compression sleeves for my arms, and of course the extra steroids.

Chris and I did the walk till you fart post dinner walk (the where there’s farts there’s hope program – see zero peristalsis) and I had already started Coloxyl with Senna this time. Up from 2am every hour the bladder slowly came back to life, by 4am it was hallelujah as the heavens…. no… just my bowel… opened up – yay!

Then the fun began. Found problems with breathing, the ‘effervescent lungs’ thing I had the night of the first chemo cycle… I found that in sleep/upon waking that my breathing was really slow and missing some breaths. I went and took Benadryl around 3am and Symbicort again, but whilst there was come lung congestion, this was really slow to work. Laying flat seemed to make this much harder so I propped myself up (blood pressure?). I used the pulse meter to check where things were at to be sure things were safeish. Blood oxygen was fine at 97-99 but resting pulse was jumping between 46-65 (with highest rate of 77… Bradycardia is when its under 50). This is very different to the last three weeks where resting pretty much never saw a rate below 77 and fluctuated between 85-110 (Tachycardia is when resting pulse is over 100). I assume its the change in the steroid dose. As long as its all safe.

HOWEVER, I felt the lung issue was perhaps a muscular ANS response thing, that the message was getting a bit messed up in there and that this was messing with irregular breathing and that was leading to the build up of muck in the bottom of the lungs. I have had some muscular ANS stuff in the past, some struggles with my legs, arms, intermittent, unnerving but no biggie, but when it effects my respiration this worries me and I’d like to know how safe this situation is.

I did find that being upside down in the massage chair on the tapping function regulated the muscular/lungs thing was being. It seemed to normalise the breathing which became regular and deep breathing though the pulse rate stayed around 46-65.

When I was a kid I was, like many kids with autism, always using vibration/rhythm to regulate my body. It was like the vibration of the car got my brain and lungs working so I used to lay over the differential in the centre floor of back seat. At home did similar laying my body on the washing machine, the vacuum cleaner, my father bought an exercise machine with the belt drive thing and I felt calm in it, I’d breath regularly. So I think its similar. So this being the possible case I will seek out a better solution than getting only 15 min sleep at a time in the massage chair cycles… I can buy a flat massage pad that should do the same tapping cycle and should be able to sleep on it laying down. I do think this stuff may be common in some people with autism though those who use vibration this way to get their brain/body communicating properly are usually functionally non-verbal so few have written of how or why it works for them.

I could probably improve the Bradycardia with coffee but the dandelion coffee has some level of caffeine so seemed to have no effect in raising pulse unless it would have been lower without it. Ironically, the Ventolin would probably have sped up the pulse but I didn’t want the tachycardia/tremors/inability to walk straight. I think that the issue is not so much asthma perhaps (as the blood oxygen seems fine) but that there’s a regulatory issue with muscles and breathing and this leads to accumulation of muck in the lungs. So muck sample to pathology now. Anyway, its probably all just the first 24-48 hrs and this ANS/Dysautonomia stuff will iron out again.

DAY TWENTY-TWO
Day Twenty-two, Fri 23rd Sept
Wow, the dead doth walk. Sure my white cells may be zombie cells that can’t fight their way out of paper bags but I was still up at 8am and able to have a breakfast after sleeping from 11pm-2am then babysitting bowel, bladder and lungs all night with strategies from sleeping on the toilet to in the bath (great breathing posture and in a room of steaming eucalyptus oil thanks to a new single electric burner we bought to turn the bathroom into an instant steam room), to sleeping upside down in the massage chair on 15 minute cycles that at least kept breathing regular. A short sleep later on the sofa as Chris worked from home tapping away lightly on his laptop and we were off for lunch then on to the hospital for a Neulaster shot to try and arm my white cell soldiers with back up recruits so I’m not a walk in for every bug in society. The shot was easy, straight into the stomach. Sure, that sounds SCARY but its just into the fat, not inside your gubbins, it just works its way to your spleen and bone marrow – magic huh? Anyway, asked the oncology nurse does it really risk enlarging and rupturing the spleen or is that just in the usual disclaimer side effect paper work. She’d never seen it happen and that was good enough for me.

On the way home we stopped at Myer where they sold roll out massage mattresses that could keep my chest muscles on a vibration cycle to remind my brain they were still there and to keep talking so I could breathe through the night whilst my scrambled overwhelmed chemo brain tried to reorganize. There was nobody on the shop floor but I found a manager in the office who was wonderful and really helpful. Soon a floor manager was with us and we were in the managers suit laying out the roll out mattress on their sofa for me to try… wow, the cancer red carpet! Normally I’d find that really awkward but I felt utterly crashed out, poorly, overwhelmed and I could have slept 3 hrs right there and then. They had a sale coming up in 15 days but decided to give me the mattress at the sale price today! How lovely. I went home, Chris set it up, tucked me into bed and I slept like a baby for 2 hours. I went home, Chris set it up, tucked me into bed and I slept like a baby for 2 hours. Got up and my pulse rate had normalised to 75-85!. No Tachycardia, no Bradycardia, even the wild jumps seemed stable. Don’t know if it was the Neulaster greeting my immune system, the mattress, the extra sleep or the abundance of good will around me. But it was a good day.

So now I get ‘Frequent Die-er points’ at the GP where he bulk bills me (very kind), the lovely folk at the Manuka health food store give me a discount on my supplements (I said, ‘oh no, is this because of cancer?’, she said, ‘I’m afraid so’ and we laughed), then Bendigo bank which had taken $400 from me for cancelling my eftpos terminal when I couldn’t work anymore were alerted to the fact this was due to cancer and reimbursed me (thank you kind bank) and the wonderful folk at Footprint Books (who distribute my books here in Australia) took back my signed copies to redistribute until I can start lecturing again, allowing up to use the reimbursement to pay medical bills. So cancer brings out wonderful things in some, the family friends who bring soup, offer to help clean, write amazing daggy uplifting kick-cancer’s-but songs, my tired man who I still find enough zombie energy to jump on and sing at 8am as he sleeps happy I’m ok after the night of chemo treatment 2. The birds are singing, the sky is blue, ELO sings Mr Blue Sky in my head. We walk at night, looking at stars and silver trees, laughing at farts if we’re lucky enough to muster any. Life if great.

DAY TWENTY-SIX
Day Twenty-six, Tuesday 27th Sept

Wow, aren’t steroids illusional! They gave me extra steroids during chemo to counter the edema and Autonomic Nervous System issues (Dysautonomia). I thought, wow, my brain is switched on, I didn’t get chemo brain this time, wow, I even could pee and shit within 24 hours (albeit Coloxyl assisted 😉 But twas an illusion!

By day twenty three (the Saturday after chemo 2) I was on the floor! Really challenging to stay standing, breathing, heart all misbehaving in the dysautonomia dept and bowel and bladder were saying ‘we’re confused’, body clock shot, chemo brain definitely moved in, tachycardia, fainting, blurred vision, energy was around the most challenging CFS style fatigue I’ve done and I had pretty severe CFS (Chronic Fatigue Syndrome) in my 20s and 30s so this was ‘interesting’. So hard to eat or drink with no messages happening and nothing moving in the bowel dept, and the bladder being brainless.

Crazy times, but Chris handled it so well, helped me get through this crazy day and I was so good, so on the case to kick start the brain-bowel relationship… meals were 3 teaspoons at a time followed by at least 50 steps of walking, liquid was sipped through the day, vitamins were when I could stomach the idea. My weight had slipped. I was down from our glorious achievement of 58.8 to 55.5 (I had been a skinny but ok 54.5 before our pre-chemo weight gain plan). So the infection and antibiotics had used up a lot of stored energy and I needed to get it back on, buggar, and whilst feeling the bowel had gone awol and every time I ate a few mouthfuls my belly just said ‘inflatable balloon’ (without the luxury of gas) so farts became our focus… it was all about getting me farting – please!

By Monday had mastered the art of constipation massage and was graced with farting and gurgling (yay!!!) and cramps (better than no movement) and thanks to the internet have added a warm wheat bag for my belly to my arsenal… it can apparently help ‘melt’ poo and combats nausea at the same time!

I began to emerge again to awareness I was in chemo brain city but at least able to eat a whole tuna cracker anddddd 6 pieces of sweet potato in one sitting, no less and taking no more than 30-40 minutes to complete! A cleaning angel drifted by so lightly and unobtrusively dusted and vacuumed all our downstairs dust bunnies to unburden my immune system – wowwww…. wonderful.

By Tuesday I at fish and chips, with plenty of juice to help liquify it but so wonderful! Of course we all know that the best food on Earth is fish and chips, ask any new arrival 😉 By 6pm Tuesday my brain finally began to stay online, the Dysautonomia stuff was manageable, eating, drinking, energy levels rather reasonable under the circumstances. Yay!!!

Plus had a wonderful gift from lovely folk from Upper Gully Organics… a piece of the most wonderful GF/CF/soy free/sugar free passionfruit and raspberry cheesecake they stock from Naked Cakies… thank you what a reward for making it back to Earth!

Of course landing on Earth I find I am greeted by my alters waking up in DIDville. First Esby, disoriented and teary as with chemo 1, wanting to know what had happened and why did I do bad things to the body. So I counseled Esby, reminding her we have two more of these ‘bad things to the body’ sessions (Esby can’t process the idea of chemo or what what happens to the body isn’t directly from me, ie via medical treatment). Next Carol joyously arrived singing the Mickey Mouse Club March with the lyrics changed to S.A.M.U.E.L, that spells Sam-well-y…. and announced that when Ruby goes (Ruby is our remaining breast due to leave in the 2nd mastectomy after chemo is finished) she wants a pink leotard with skirt and pom poms and wants a big ‘S’ sewn on for ‘Samuel’, which of course was just wonderful, funny, moving, and then Da took the piss, drove Carol into the usual picked on sister sadness and it was DIDville as usual. More counseling later, Da understands Carol is very brave to allow herself to be so vulnerable and daggy and that takes admirable guts. Da is determined now to be a good brother/sister not a piss taker and will even be Carol’s fellow Samwelly-teer 🙂

And then there’s me, holding the team together, or perhaps they hold me together, or we take turns. And then there’s the world of people outside of me many of who each bringing their magic to life around me.

DAY THIRTY-SIX
Day Thirty-six, Friday 7th Oct
Well, what a lovely break from chemo brain. Sure, its ups and downs but enough energy to play. Got arting with arty pals and paint, did some gardening, lots of evening walks and home cooking with the man, wonderful home restauranting in ‘Cafe Chris’ and the ‘Samwelly Restaurant’ (at our place). Sure, there’s niggles, like a resting pulse that rarely comes out of tachycardia (100-110 is getting usual as my resting heart rate), sudden blood pressure reactions to the pulse leaps from laying to standing with associated fainting and blurred vision, but its stuff I’ve had since at least age 13, just more of it,

And when I faint I don’t drop, I’m like those fainting goats, I just stiffen, so its funny how the built in faults are sometimes useful. I have never fallen, in the past even had seizures sitting up, had shock so bad I peed but still stayed standing, blacked out a few seconds driving and my hands just stiffened on the wheel, so a few minor blackouts when standing are a doddle, rather like taking drugs maybe… the blood just drains out of my hands, arms, face, I feel it all go tingly, vision fuzzes and blanks, my body stiffens, then it all comes back… its my own free ride at Luna Park and I don’t pay a penny. So needless to say, don’t worry, its all part of funny brain syndrome and you know why this crap is there? Because it reminds us of how LITTLE this stuff relates to the wholeness of who we are. We are each so much more than these quirks, episodes, mini dramas. What’s important is to sing, dance, dag out, play, love, eat and make good tea in between and we are good at doing just that.

But, seriously, I’m doing really well for a chemo patient, I’m not in denial, I really am and the Neulaster has really helped sweep the immune issues out of the way so all I have left is this Dysautonomia stuffola and I’m fully strategised to manage most of it and I’m fairly sure its not going to kill me and I have faith that once chemo’s done I’ll get a neurologist to help me sort out what’s left.

So its my birthday this week… in fact its the day before chemo… so I will eat soup and take steroids that day, but its going to be nice soup at a nice place with great company. And mostly I’ve moved my birthday to Sunday instead so I can have a BBQ and eat GF/CF/sugar free/soy free wonderful home made cake and get on the trampoline and dance and dag about with a handful of lovely fellow dags.

DAY THIRTY-EIGHT
Day Thirty-eight, Sunday 9th Oct
It was rainy, I didn’t know where my immunity would be at and knew I might have to wear a surgical mask if anyone had bugs, I wasn’t sure how much energy I’d have to make a BBQ, and I figured I’d be lucky to have 6 people who’d show up. But, no, I had a wonderful happy-non-birthday with 18 great dags who braved the rain for a BBQ party on the porch with me and Chris. I went on the trampoline, played with the many colored ribbons that arrived (attached to presents, the greatest of which was the actual PRESENCE of those who came), did various scenes from Grease, danced, at GF/CF/sugar free/soy free home made birthday cake me and Chris made, ate wonderful home made banana Thai custard, watched Chris do Diabolo in the garden and enjoyed the delightfully ecclectic but ‘Simply Being’ mix of those who came to help me forget the shadow of chemo cycle 3 that was hanging over my birthday. One of the kids here summed it up when she said ‘you make chemo look like fun’.

My resting heart rate may have been in tachycardia all day and my vision was sometimes blurred so I couldn’t recognise people coming down the path except by their movement, but none of it mattered. I felt simply human, happy, in the company of real, daggy, lovely, fun loving people and it was a great way to (almost) turn 48. So, chemo 3 on Thursday… so what! I just had the best birthday. The rest is just ‘details’ 🙂

DAY FORTY
Day Forty, Tuesday 11th Oct

I saw the optician who has tested my sight each year.
I had a glaucoma test last year which was clear (the standard full screening thing). So she re did the imaging for this and found a problem with the nerve in one eye, that had deteriorated since last year. I don’t experience pressure in the eye but she wants to do a field test after I finish chemo because she feels there’s some indication of early glaucoma. I doubt this was caused by the chemo and I have a gene marker for glaucoma (which surprised me) and I see I had developed the additional short sightedness in the last year at least before starting chemo. I see some auties also have glaucoma and that it can overlap with auto immune dysfunction. I’m not worried. But wow, 47 with cancer, 48 with glaucoma, what’s next, stand on my head syndrome!

DAY FORTY-ONE
Day FORTY-ONE, Wednesday 12th Oct
A glorious birthday after all… soup and fruit platter up at a MUST GO place, Coonara Springs restaurant, overlooking views of the Warburton and Dandenong Ranges and glorious gardens with the most wonderful company I can imagine – Chris 😉 A Simply Being pal dropped by later and plenty of laughs and calm, realness and balance. Can’t think of a better state of mind to step onto the runway again for the rocket to chemo 3.

CHEMO CYCLE 3/4
DAY FORTY-FOUR
Day FORTY-FOUR, Saturday 15th Oct
Chemo 3 went as usual, had some Mesna added to my cocktail of Cyclophosphamide (cytotoxic chemo drug) to limit cystitis in the bladder department. So that now meant my original chemo 1 cocktail of Dexamethasone (steroids to counter autoimmune responses), Cyclophosphamide and Taxotere (cytotoxic chemo drugs) plus Emend (antiemetic/anti vomit) got extended into all that plus double the steroids and adding Neulasta (stimulates production of white cells in immunodeficient breast cancer chemo patients) and Coloxyl with Senna for the next few days because my poo department closes up shop on the steroids.

Then because, in spite of the high steroids, I kept having allergic reaction so they added an IV antihistamine (ouch, stings) but at least the chest constriction and sudden sinus congestion and catarrh starting to choke me quickly died down.

By 1pm my last natural pee left home and I didn’t see another until 2am. To put that in context I had taken in around a litre of drugs and around 1 litre of drinks by then and my bladder was saying no go Joe, shop closed, go away. Now the bladder clears up the kidneys, which clean up the blood, which cleans up the lymph. So with the backlog in the system, moderate lymphedema set in again and I started swelling up from my feet, to my legs, to my distended belly, to my neck to my arms and face. It was time for proactive measures. If the bladder wouldn’t take up from the kidneys it was time to fully empty what it did have in there to make it feel like a desert and take up some of these fluids going around places they shouldn’t. Yep, it was the ‘trampoline strategy’. It was late, the antihistamine had me mega drugged, asleep on my feet, but I had to go for gravity feed (read forcing involuntary urinary incontinence). So onto the trampoline in the darkness outside, hose at the ready to hose off the cytotoxic drugs in my urine (nobody will ever dare use our trampoline again now, I’m sure) and with no knickers on it was time for me to jump (yes, I had boots on). It took 3 phases but it worked and finally by 2am my bladder was talking to my kidneys and we were piddling naturally! Now the lymph could dump into the kidneys and goodbye to being baloon-Donna. Phew. Sure it meant peeing every hour as the bladder got the idea ‘oh, yeah, we do have a lot of work to do’.

Lots of yoga for the lymphedema, lymphedema massage all night, compression stockings and my adapted compression sleeves to get the lymphedema out of my arms too, but by morning other than looking like a swelled faced sunburn victim without the sunburn, I was doing really well.

Next was the effervescing lungs, because the antihistamine was starting to wear off which meant back came the choking, the chest compression, the catarrh, the phlegm and that meant find the Benadryl, take the asthma spray, and the Vicks Vaporiser full of lavender and eucalyptus oil was my friend all night.

But with all the protocols working, the bounce back has been great. Still might have the steroid crash (tomorrow) which could bring fatigue for 2 days, and out of chemo brain again by day five of this cycle, but I’ve learned the drill. One more chemo to go! Then done and dusted and onto hormone therapy and mastectomy number two then REHABILITATION from being a Mars veteran.

DAY FORTY-SIX
Day FORTY-SIX, Monday 17th Oct
I must have been dreaming. What post steroid haze was I in when I thought I’d touched down? Last night I’m sure I was abducted by Martians, taken away, experimented on on every level then what jumbled disarray that was left was put back into bed somewhere between the toilet, the sofa, and our bed.

More clearly, by late Saturday the steroids had worn off and fatigue hit with an almighty crash. The poo department had given me false hope and the wonders of Coloxyl with Senna (and associated cramps and spasms in the early hours) were, like Obi Wan, my only hope. Had reached the point it was hard to wash or eat or drink without falling asleep mid action and DIDville decided to wake up in the midst of it all with several alters each doing their version of how to land this Apollo 13 in distress which is rather like having several different versions of ADHD going off in your brain, or to be more specific, Willie’s OCPD, Da’s bipolar, Addie’s Generalised Anxiety Disorder, and Marnie needing to vent.

By 8pm we were way crashed out, struggling to breathe with autoimmune distress dramas and drowning in catarrh like gemullock whilst feeling the chest and throat are being pressed like a vice. Then the fatigue was so overwhelming breathing was so shallow and dysautonomia was back with a vengeance dancing my resting pulse everywhere from 80-115 every few seconds so the potential to organise brain and body were not on the cards. Breathing stopped regularly which is kind of like dying every few minutes and with it comes the dizziness and further disorientation – you couldn’t buy drugs like that!

Then at 2am can chills, tremors, body jerks with my teeth chattering then clenching and breathing in distress. I had sweats but with a body feeling it was in the fridge and a temp of 37.8. My brain was disorganised and misfiring all over the place! Oh buggar. So Chris and I kept it monitored knowing it it tipped 38 the next stop was the hospital. Luckily, after 45 min of laying sweaty and shaking in the arms of Chris, the tremors and chills chilled out and the temp came down to 37.4. Hooray. Boy were we relieved. Nevertheless, we kept watch the next hour to be sure we were in safe waters.

Next my highly cytotoxic bowel was carrying on like a doco on IBS. So that meant toilet 8 times through to dawn. I’d beaten the fever and chills, now I was too hot to sleep! Off to the sofa. Couldn’t breathe with my head down, couldn’t sleep with my head up. Pacing in exhaustion like a horse with colic. Finally, fell asleep hoping and believing the mantra ‘the body is resilient’ and that it will try and survive with or without my help, that one can live with very little breathing albeit with reduced brain function and who needs that anyway on a night one has been abducted by Martians.

And today, sleeping off exhaustion, rediscovering my mind, body, stomach, realising how shot through the brain I got last night. So many simple things just look like rocket science. But I know that by Wednesday all will be well again and 2 fairly easier weeks before the FINAL chemo cycle. Then chemo be gone!

DAY FORTY-EIGHT
Day FORTY-EIGHT, Wednesday 19th Oct
So nice to be coming out of chemo brain, I am born yet again… that’s 3 times now. Had a lovely day in the hammock on the porch, hanging out with Chris and other than having virtually no auditory memory and saying yes to things I have no idea of and missing large chunks of executive functioning I’ll have to regain these next two weeks, twas a fab day. Took my temp on our way out of the house though and found it was 37.9 – hyperthermia again. No sweating and no idea I was 1 degree under the danger level of 38. Buggar. So something seriously odd in the temperature regulation department. We cooled me down because my brain can’t seem to do that job at present and in 10 minutes, sure enough, 36.5 again – groan. Guess we’ll leave this dysautonomia dramas for the neurologist, but in the mean time its not reassuring to know that temps over 38 are bad news for the brain and organs and I certainly don’t want to see these go any higher.

DAY FORTY-NINE
Day FORTY-NINE, Thursday 20th Oct
Saw the Osteopath, he found the lymph wasn’t draining on the right side so got to work on it, the lymph at the back of the neck was pretty blocked, the back muscles were really tense and the diaphragm muscles were seized up so that was probably why it was so hard to breath!

DAY FIFTY
Day FIFTY, Saturday 22nd Oct
Lovely day, so much more with the land of the living. Chemo brain still hovering but mostly can cook and wash and do most things again without having these sudden holes that make me look more clearly ‘brain injured’. Like I would sometimes be fine then stare at something having no idea how to use it or know I needed a plate and cutlery but no idea how to co-ordinate the getting of the two, or know I needed to dish up food but having forgotten how, at least now I had remembered how to co-ordinate the simple stuff again – yay.

But with chemo 4 on the horizon (and causing understandable trepidation, we decided to look up how to protect my brain better. We found that although I’m taking a liquid multivitamin mineral in the morning with good electrolytes and also 1500mg Glutathione, that both of these could reduce seizure potential in the brain that may have been a risk on the Sunday night shenanigans with the tremors and jerks in the midst of dysautonomia chaos. Further, that electrolyte imbalance can worsen dysautonomia episodes and taking adequate supplementation of these can reduce those episodes. Yay, new strategy, so in chemo 4 we’ll get me on the supplements before bed to avoid me waking at 2am with a brain in such chaos it can’t regulate breathing, heart, circulation, temperature etc. Suddenly I felt empowered. I could handle the tachycardia, the stopping breathing, the diaphragm muscles not working, the temperature challenges, the tremors, numbness, disorientation, even my body doing involuntary clenching and jerking spasms but not all at once. Now I had something, at least something to give me hope I could minimize these things coinciding in my sleep.

Learned the nerve damage in my eye may be related to dysautonomia and not glaucoma at all… is that good? I’m sure that once I can stabilise the dysautonomia the nerve damage in the eye will not progress.

CHEMO CYCLE 4/4
DAY SIXTY FOUR
Day SIXTY FOUR, Saturday 5th Nov

LAST CHEMO!
Did chemo 4 on 3rd of November. I went armed with a plan. Oncologist agreed that doubling my liquid Hivita and Glutathione 1,500mg for the day before and up to day 4 after chemo 4 would do me no harm. The theory was that some sites reported that elecrolyte imbalance was found to underpin some episodes of dysautonomia and Gluthione was found supportive.

I knew that Glutathione contains Glutamine which I had already widely used for dyslexia/autism related info processing issues/LD/brain injury issues and found it great support, so figured it could help with the severe brain fog of what were probably dysautonomia episodes rather than ‘chemo brain’ (or indistinguishable). Also the Glutathione contains Cysteine which combats catarrh attacks, including puss in the lungs which may have been the ‘effervescing lung stuff I always experienced the night of a chemo treatment together with rather strangulating catarrh and helped along by diaphragm muscles that had gone into spasm and left the only place to get breath as in the upper chest and throat (read feelings of suffocation, shallow breathing, stopping breathing in my sleep and associated disorientation in the brain-body departments). I was also armed with training from the Osteopath on how to release a diaphragm and abdomen that had gone into spasm, so Chris helped me with that and by sleep time I could actually breathe with a whole rib cage – luxury!

Back from Mars now, all 4 tickets spent now. No more trips back. Got my new expiry date. Got my spring clean.
I will now officially be someone who has theoretically moved from a 25% chance of being dead in the next 10 years from secondaries to someone who has only a 10% chance of the same… so I’ll watch out for buses 😉

Chemo 4 was not as rough as the other three thanks to some new interventions.

I was able to breathe and use my diaphragm muscles for the first two nights… which helps. I didn’t start drowning in effervescing, fluid filling lungs and strangulating catarrh all night… which was such a luxury. I didn’t have shallow breathing and stopping breathing all night, no respiratory distress, my still fluctuating pulse and temperature stayed in the not too scary range. The pee and poo departments packed up and left home but I could start to pee chemo drugs from 3am (unable to pee fully since 1pm) but all departments showing good progress. Lymphedema really low this time and finally a relatively functioning post-chemo brain… I can understand, even roughly retain an unjumbled sentence this time!!! I can make my breakfast and remember what a bowl does, I can cross a road and not lose the traffic, I remembered that Friday WAS Friday.

So that’s it folks, all onwards and upwards from here.

I start hormone therapy on Dec 1st (Tamoxifen) but after chemo it’ll be a doddle…. its ONLY for 5 years! It will stop estrogen production (yeah, read menopause etc) and that’s good because my cancer cells use estrogen to regrow themselves. I’m allergic to soy and lentils so won’t be going there to replace estrogen, in fact that’s not a good plan with cancer cells that will like estrogen wherever it gets it. But, really, I think its rather a bargain.

In Feb I’m going to say goodbye to one booby Ruby, my remaining breast. I’m going with the Kiera Knightly look. My originating cells have a 13-38% return rate to the other breast (50% to the originating one) so Ruby reminds me both of what I’ve already lost and what may return for me to have to do this all again, and I’m not a prosthesis girl… I like to feel my chest as a whole and it is still a chest, its not breasts, but it is still a whole chest and it feels natural.

Here’s a great slideshow of beautiful topless women who have had breast cancer that really moves and connects me as a woman, embracing my sexuality and attractiveness as a one breast and soon to be breastless woman.

As for Chris, its his celebration too… we’ve been such a team, enjoying love, home, laughter and finally we can breathe as two people who survived life threatening illness this year (between April-June) Chris had a severely blocked bile duct, then pancreatitis/liver problems, then complications from gall bladder removal and spent 3 weeks in hospital but all clear now 🙂 and came out together the other side knowing we now both have longer expiry dates and so wanting to spend those out together with each other and those around us.

So finally, its time to pre-announce A PARTY!!!! We’re throwing AN OLD FARTS (end of chemo party). The farts part has its own history… so there’ll be plenty of fart jokes, part poetry, fart stories!

SO GLAD MARS IS OVER!
The soldier returns to civilian life.

DAY SEVENTY
Day SEVENTY, Friday 11th Nov
Well, talk about jumping the gun.
I was so eager to be over chemo that I overlooked a few things… like that on the Thursday of chemo 4 I actually would have chemo drugs in me for the next 3 weeks killing off my cells. And there were more surprises. By the Friday after chemo, Chris was facing he had a raging cold developing. A cold, nah… I’d fought that off on Wednesday, the sort throat, the burning up the back of my nose… I’d done a nose flush and left it washed down the plug hole… er… denial is a wonderful thing….

By Sunday denial was knocking at the door. Around 11am I noticed that I had developed a 12 cm x 4 cm purple bruise on my forearm where they’d done the IV. It was painless and there was no sign of it on the Thursday, 36 hours earlier, no pain with the IV, so I thought it was dirt. Sure, they’d failed on first try to canulate me (stick an IV tube into a vein) but so what, the veins on my hands were shot, the one on the inside of my forearm wasn’t working, and they’d gone to the outside of my forearm where I’d never had an IV, but all in all I was just so glad they did get a vein on my last chemo that I didn’t give a damn what was happening over there. But I’m sure there was no bruise there. Oh well, best I gave the nurse a call, after all a 12cm bruise out of nowhere is rather LARGE! It was at least half the entire length of my forearm. So the nurse was concerned but reading my notes saw I have a rather reactive body, high inflammatory state, etc, so we decided that given I’d done ice and bruise cream we’d give that a chance until 5pm.

5pm came and the bruise was the same. Chris’ cold was atrocious. We were both in surgical masks by then trying to avoid me catching his cold (yes, denial) and at least now we could snuggle up and try and celebrate our presumed freedom from chemo. By now I was having temperatures of 37.6, 37.8, 37.9 but it wasn’t a fever yet so I refused to think I had a cold.

Monday morning we went to the oncologist to let him check out the bruise. He was ok with it not posing complications… didn’t think it meant liver damage, leukemia, chemo drugs bleeding into the skin tissue or allergy so we breathed a sigh of relief and went off to celebrate goodbye to all this chemo stuff.

By 7pm though, my temperature was 38. By 11pm it was 38.2 … the card in my purse said any temperature over 38 and we needed to go to the hospital and get a blood count in case I was again neutropenic (no immunity) which could mean I risked being overun by my own body’s bacteria. We called the nurse and she agreed that although I was feeling ‘fine’, I could be at risk of neutropenia as the Neulasta wouldn’t have kicked in yet. Off we went to the local hospital.

I was asked if I felt well. Sure, no problem, just the temperature thing. Chris was the one with the cold. We were put into a small storage room, me and Chris in our surgical masks and after they took blood they went off to test it all which would take an hour. I snuffled. 2am we were still in there, now laying together on the pillowless ‘bed’. Suddenly I snuffled, one of those big gooby snuffles one has with a cold. ‘How did I not notice that?’, declared the doctor. ‘I didn’t want to be ill’, I explained, presuming he’d understand that I’d just let it all sit there until then or waited until he was gone so he wouldn’t suggest I was ill.

At 2am the doctor came in with results. My white cells were lowish but not depleted (and we were still waiting for the Neulasta to kick in by day 7 of the chemo cycle, which would be another 3 days). I was ready to go home. But I wasn’t getting out of there that easily. My inflammatory markers were 38 (normal was no higher than 5). It was now hospital protocol to keep me in and give me IV antibiotics. With a 12cm bruise up the forearm they last gave IV and my other veins having failed chemo 4, I was obviously freaked out. No way, I wasn’t that sick, give me a pill, no needles, I’m going home, see, I’m fine, noooooooooooooo. My dream of being free from the dramas of chemo 4 were blowing up in my face. Chris would be going home and I’d be imprisoned in a hospital attached to an IV with a needle in my arm all night and I was to be transferred the next day to what we thought of as the CANCER HOSPITAL…. where the oncologist could keep an eye on this inflammatory state and temperature drama.. Noooooooooooooooooo. I had escaped that place, I was only an outpatient, a visitor there, a drop in chemo patient, not an overnighter, not in there with the DYING people, not the CANCER DYING PEOPLE. I didn’t have cancer, I wasn’t dying, I was someone who’d been to Mars, got a new expiry. I didn’t need to go there. I had autoimmune problems, immune system anomalies, dysautonomia stuff with my brain and temperature. Maybe inflammatory markers of 38 were normal for me. Maybe it was just chemo drugs in my kind of body together with a cold and a brain that couldn’t regulate. Surely, the oncologist would tell them. In the morning, he’d tell them I’m ok, send me home.

Somewhere in the fever, the inflammation, the trauma of all we’d already been through with chemo and our escape having slid into this abyss of more medicalisation, of course my DID was firing like crazy. Polly (one of my 13 alters) was crying and needed Foosh (well actually Foosh’s representative which is a plush bunny), Esby (another alter) needed a pair of socks to snuggle with and the only pair in the room were those in Chris’ running shoes, on his feet, Willie (another alter) was making plans to negotiate with the doctor to send us home, Marnie (another alter) was saying ‘stuff it, see ya in the morning’ and Da (another alter) was doing the brave teenage soldier, reassuring Chris she’d look after everyone and that Polly would snuggle the blanket and it had a hole in it and that would make rabbit ears anyway. Chris was feeling distressed he’d have to leave me in a hospital, unprepared, no toothbrush, sleepwear, food (my diet is GF/CF/legume free etc) and obviously in PTSD. Then Da said to Chris, ‘but we’re not alone, you know that, there’s 13 of us in here with Donna and you are in our heart, so take us home in your heart and see us in the morning’. Chris burst into tears and left us to go home to bed.

The doctor came and Da soldiered off to the room they gave us down the back of the hospital. In went the IV drugs, the staff came and went taking measurements through the night. The next morning, the doctor came in. He’d talked to the oncologist at ‘the cancer hospital’ and yes, he’d agreed with me, I could go home. I was given a prescription for 2000mg a day of Cephalexin (antibiotics) in case my white cells couldn’t hold back bacterial onslaught (even if it was a virus the body’s bacteria can then multiply too much in someone with compromised immunity) and I was a freed woman! I called Chris and he was in the car, in the rain, on his way in no time. I was so excited, I didn’t wait inside. In my flimsy cotton dress and sandals, I went in the rain to the bus stop in the street and waited for my prince to take me home.

The high temperatures continued through Tuesday, and Wednesday and although they took 2 hours to respond to Paracetemol, they did come down with it for the 6 hours it lasted each time. Finally by Thursday I had the back pain/spasms of Neulasta starting up telling me new reinforcements for my immune system were on the march, coming to help. On Wednesday night Willie said, I think we’re going to be ok now. And by Thursday morning the severe oral thrush finally subsided and my tongue was no longer this arctic snow covered thing.

Chris and I spent Thursday first seeing his specialist to check up on scary liver enzyme levels. Was he heading back to his own hospital chaos of March-June? Would he need another op? Did he have liver damage? I told him I was here for him now, that if he had problems, I could help. His specialist said he’d need another ERCP to possibly stretch the bile duct to help it do its thing better, that this was fairly usual where someone had had bile duct surgery and should eventually normalise. No, he didn’t think it was anything worse, but yes, in December he’d spend a day in hospital again, be sedated and have people go down his throat, through his stomach, into his bowel and check and possibly stretch his bile duct using a small balloon. And, yes, in the future, another 6 months from then, more blood tests for him, perhaps another ERCP, until it all normalised. Guess the good news was he didn’t think Chris had liver damage nor was in any immediate danger.

Next was my appointment at the breast surgeon. Chris came with me, we talked about Ruby (my remaining breast) and how we are certain its time for her to go now. She talked about breast cancer rates, that this was 1 in 9 women and then 1 in 20 of those treated for breast cancer will have it return. So Ruby had at least a 1 in 20 chance of housing breast cancer again. And we knew the start up cells of my cancer were Comedocarcinomas, fast growing, high malignancy, high return rate cells with a 13-38% rate of return. So Ruby posed a 5%-38% of inviting cancer back and so we decided to schedule her departure for February 2012. It would mean no loss of lymph nodes and at least one nice free arm for IVs, blood tests, blood pressure monitoring for the rest of my life.

We then went to lunch, then home and changed the house from chemoville to something new, moving furniture, restyling the place. We booked an anniversary weekend by the coast 4 hours away. We talked and snuggled and cried and shared Vicks and found handkies and ate and slept and took vitamins like Romeo and Juliette with colds. We scrubbed the year planner with all its entries of operations and blood tests and chemo treatments and filled it with new plans for a post treatment life for each of us.

Warmly,

Donna et al.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.