Post Number 11 - Let the Treatment Begin

It's Wednesday again and by now you are probably wondering what happened at Friday's appointment?  Well, in the words of the doctor..."I have some good news and some bad news, which would you like to hear?"  Now if you are like me, you would want to get the bad stuff out of the way, so you can then relish the good news, so here it is; "You are not on the trial as your DNA is not suited to this drug and chemo will not be an option for you.  However, good news is, the lab in Europe classed your tissue sample as a grade 2 tumour and not a grade 3."  (grade 2 being a slow growing tumour and not the aggressive type of a grade 3 or 4).

I punched Mark (lovingly) in the arm and said "you see?" Miracles do happen and this type of tumour makes more sense to us as we moved to more of a plant based diet around 6 months ago and it seemed impossible that a tumour would form while eating and living such a healthy lifestyle.

But let me rewind a little... While waiting a gruelling hour in the waiting room to see the Oncologist, I saw one of the staff approach a lady who had been waiting a while.  In the crowded waiting room she pulled up a chair and apologised to the lady as she would not be requiring their services! The lady looked puzzled and asked why.  "Because you don't have cancer!" was the reply.  I nearly fell off my chair.  "Did you hear that?' I whispered. Mark looked up from his car magazine and grunted. "She just got told she doesn't have cancer, isn't that unreal?"  He just shrugged his shoulders.  So when the Oncologist told us the test results from the overseas lab I couldn't help but believe it was another one of those many "signs". 

We left the centre quite elated and made our way into the city to pick up Sebastian from Childcare. I was pumped and suggested we head into the city and to take Sebastian to see Father Christmas.  It's an excellent time of day (5pm) as there is generally no queue.  I was right and we went straight in and Sebastian had his 5 minutes with Santa and we walked away with our 2012 Christmas Photos.  Another job done...tick!

Still happy about the news I was itching to access Facebook to tell everyone the good news. The Tumour is grade 2..Hooray!  Let's buy some wine and have a celebration.  But my excitement was popped like a needle to a balloon when Mark told me, "well it doesn't change anything and I would rather not say anything to anyone".  Later, with Sebastian in bed we discussed the situation and I guess he was right.  The lab in Adelaide would have had all of the matter that had been removed and they would have tested several parts of this mass.  The overseas lab would only have been sent a small amount of tissue to test the DNA and that part may well of been a grade 2, but there are still grade 3 (aggressive) parts and they have to give an overall grading of the worst parts and hence base a treatment plan on the higher graded tumour samples.

The following day our spirits were still damp like a wet fish, but Sebastian had begged me to go to the beach. The weather forecast was good and I knew that it would do us all good to have some fresh coastal air, even though I had woken with a mild migraine and Mark wasn't feeling much better.  We packed up and left early and enjoyed a fabulous morning at the beach. Else was perfectly behaved and had the time of her life running and splashing in the water. Sebastian also had a wonderful time playing in the water, building sand castles and flying his kite.  The weather was perfect, not to hot, not to cold.  After two hours of perfectness, we decided it was time to pack up as it was getting time for Mark's juice and the sun was starting to get a little stronger.  But when we told Sebastian it was time to leave he threw the biggest tantrum imaginable.  He screamed like his limb had been broken and venomously screamed "No, I just want to play" at the top of his lungs.  Hard to believe what this angelic child can turn into when things don't go the way he would like them too!

So with screaming banshee protesting several metres away, we packed up and bid him goodbye as we headed back to the car.  Sebastian screamed and cried behind us, eventually calming down enough so that we could stop and have a rational conversation with him.  But it was too late, the mood had slumped right back down again.

Sunday morning and it was time for the three hour Yoga and Mediation session that I had booked several weeks ago.  Migraine in fine form, Mark quite flat and depressed, we dropped off Sebastian and headed to the venue.  When we walked it we must of looked like we were carrying the world on our shoulders.  I looked that bad I looked 10 years older, old enough in fact to be Mark's Mother, or so the Yoga teacher thought!  We took our positions at the back of the room and started the session by just lying on our backs and being still with some rhythmic chanting music beating in the distance.  It wasn't long before my emotions could not be held back anymore as this was the first time I had been "still" for quite a while.  Tears flowed while the instructor gave visual directions and every time I thought I had myself under control, they flowed again. 

But by the end of this part of the session, it seemed that it was all out and I was able to stand up and continue to the next phase of yoga poses.  We might have been beginners, but we kept up with everyone in the class.  A few hours in and we had to pair up and do some poses together, facing each other, feet touching.  Mark's feet started to wriggle and when I looked up at his face, I saw a mischievous smile.  I smiled back and I could see and feel that our black clouds had lifted.  By the end of the three hours, the instructor talked to us and apologised for her mistake and told me that I "looked young now" and indeed I felt young again.  We both felt young, fit and healthy again, how amazing!  Just love Yoga when you can find the right instructor!

Monday...day one of thirty Radiotherapy treatments!  The appointment at 11.30am, we had most of the morning at home with Sebastian before we needed to go.  I'm not totally sure what Mark did that morning, but it was virtually zero.  He hadn't been near his computer for days saying that he was "not in the mood for programming" or some such.  On the way to the hospital I had some stern words for him and told him it was time to move his butt into gear and start writing some code and DOING SOMETHING! Yoga, meditation, breathing, exercise bike, exercise machine...anything, something!! And that afternoon.....HE DID!

Post Number 10 - Home is where the Healing is

The following day (Thursday) Mark started to improve and he managed to get through the entire day without a seizure.  Doctors came to see him and further tests were finally done (ECG), things were looking up and spirits high.  Mark was happy, off the dexamethazone, more confident and felt strong enough to walk around the hospital without the safety net of a wheelchair.

By Friday however, his spirits began to slump.  Yet another sleepless night in the hospital with really sick patients all around him and his needs again being ignored due to more dependant patients.  I walked into the hospital around lunchtime, Sebastian at childcare, expecting to take him home.  Instead Mark informed me that he may have to stay another day or two as he still had no results from the ECG and the neurologist (different from the neurosurgeon) still hadn't been to see him.

I could see how depressed he was becoming and I couldn't take it anymore.  I wanted, no NEEDED, to have him home so that I could cook him plant based foods, make him his morning lemon juice and make him fresh anti-cancer juices twice a day.  This place was no environment for someone who needed to heal.

Frustrated, I asked at the nurses station if I could "check him out myself".  They could see how upset I was as I fought back tears and while they said that technically I could check him out, medically it was not a good idea.  We walked away and headed for the lift and I burst into tears.  I cried all the way to the Cancer Research Centre which we had discovered had the best cafe (T-Bar) in the entire Flinders Complex.  We ordered our drinks and we talked or rather Mark talked and I sniffled.

Looking across the room we noticed one of Mark's Neurosurgeons.  I joked that I should go over and talk to him!  But of course that was not the right thing to do.  These people are busy and under a lot of pressure and come here for a break, as I think this cafe is the best kept secret!  A little while later, our cups empty, we reluctantly stood up and started to leave the table.  I looked over to the Neurosurgeon's table, only to notice a second neurosurgeon who was also familiar with Mark's case.  They looked up at us and nod as we pass by, and we nod back, but we keep walking. 

At the door to leave the centre a voice in my head said "what are you doing? The doctors are right there, do something!!"  I stopped in my tracks, looked at Mark and said "I'm sorry honey, I just have to say something" and I about-faced and bolted back to their table.  I apologised for interrupting them and begged them to please pull some strings to allow Mark to go home.  They both looked surprised and had a discussion right in front of me and told me that they would make something happen. 

The hours ticked away fast and before I knew it, I had to leave to pick Sebastian up from childcare.  I was still hopeful that he would be "released" from this prison.  Before long I had the text message I had been waiting for and pickup arrangements were made.  HE WAS COMING HOME!
I told Sebastian the good news and before long we were all home again.  Mark's Dad however, was not so fortunate and needed to continue his stay in hospital while more tests were done and medication tweaked.  It seemed they were doing every test imaginable and changing drugs and doses regularly until they found a mixture (or potion) that worked. It would be another 4 days before he would eventually be released and allowed to return home to Mt Gambier.

After just one good night's sleep, Mark awoke a fresh new person and while the weekend was a little up and down, daily improvements could be noticed.  It's Thursday now and he has been home for 6 days and he seems perfectly normal.  Sure he may get a little tired still, but he is back to himself again, sleeping better than ever and feeling strong.  He is seizure free, has written a little code and even washed his car today!  It is hard to remember that he is still sick as there is only the scar on his head to remind us that we still have a long way to go.

I on the other hand, have not been doing so well.  The stress and short nights sleep starting to catch up with me.  All week I have been waking around 5am and have been unable to get back to sleep.  Today I fell back to sleep once Sebastian and Mark got up, and went into a deep deep sleep.  I awoke at 8.30 and I needed to get up as I had committed to a beach walk with a friend and our kids.  But I lay there heavy, unable to get up, yet willing and yelling at myself to get up.  "You'll feel so much better doing the walk, you always do", said the voice in my head.  Reluctantly, I forced myself out of bed.  Mark prepared our scrambled eggs and Sebastian and I headed off for the fresh coastal air.  The weather was perfect, the beach looked amazing and off we went. 

Home again at lunch time, there was no time to rest as I needed to make lunch for everyone and get Seb into bed for his afternoon snooze (thank goodness he still has these).  Then a nice long hot shower.  There is something about having your first shower in the middle of the day!  It's un-rushed, relaxing and the refreshing feeling of the water hitting your skin is pure magic.  But even after a morning full of the sun's vitamin D and the magic of a mid-day shower, my spirits had not lifted.

On Monday I had made several phone calls to organise three different doctors appointments and to our accountant. All had told me they would get back to me and not one of them had.  I made one phone call after another, loading up our diary's with appointments, but the one office I could not make contact with was the chemo drug trial.  I rang four times throughout the afternoon with no answer, yet the nurse that I had been talking with on several occasions, "promised" me that she would call me the minute she had the lab results back.  PROMISE...it's a very strong word I think.  It's one that I ever use unless I really really mean it.  If she had used any other word, perhaps I would not feel so upset and betrayed, because I know those results are in!  Mark received a phone call several days ago to advise him of an appointment at the Cancer Research Institute for Friday at 2pm from a person we had never spoken to.  He did not advise what the meeting was about or who it would be with or how long it would go for.  Immediately we started to speculate, "he is not on the trial, they never tell you bad news over the phone", but why make us wait until Friday?  Maybe he is on, but are waiting until Friday to see if he is stable and seizure free (another condition of the trial).  I had to know, so I rang and rang until finally while talking with the Radiation Nurse, she let slip that "there is no trial" and that Mark should just talk to his Oncologist Dr Sukamara!  This was yet another name we had never heard of!  So I rang the Research Centre's main number and asked who this doctor was.  He is one of the Oncologists but not part of the Trial's Team.  Ah ha....so, it seems we are not on the trial then.

So tomorrow we find out for sure and hopefully a treatment plan will be discussed.  Either way, chemo drug or not, we have trust that this is the right thing.  We have to trust that with everything we are doing; radiation, yoga, plant based diet, meditation and juicing, that we are killing this thing from every angle and the chemo drug is just not needed.  It's out of our control now, time to turn up the "faith-o-meter" and believe.

Post Number 9 - Just when you think things are going well

Hello fellow readers.  This is becoming a Wednesday night ritual!  Unfortunately a yoga session and a chamomile tea are not going to work for me tonight as things have taken a turn in the wrong direction.

Things have been going along so very well, with Mark getting stronger and weller (is that a word?) each day.  Last week's yoga session gave him some grief with his left knee and at first there was a panic.  OMG, it's the left side, what could this mean?  Once we calmed down we released it was probably some over stretching from the yoga aggravating an old injury. Phew...take some Nurofen and rest the leg is probably all we need to do.

But it got us thinking.  Who do we ring if we have a problem?  The surgeon, the radiologist, the oncologist or our local GP?  Who is across everything?  The answer, well no one!  I rang the GP and asked if they knew what had happened and their answer was "we know he was admitted into the Flinders and discharged, but we don't know what for". In my anger, I opened my mouth and I was unable to control myself; "So you don't know he was admitted because he had a seizure, which turned out to be a brain tumour, which turned out to be stage 3 cancer?  Well good, then I guess you will be unable to help us out, thanks"  and I hung up!  Whoops, a little harsh.

We have insurance papers to fill out and they need to be completed by a doctor in charge and who is across everything.  I was desperate, so I rang the oncology nurse who said I could call any time if I had a problem or question.  It was good to talk to someone who understood and she managed to calm me down quite a bit and the paperwork issue was sorted.

Days later and we were having some really good days and Mark even helped me out a bit in the garden and together we edged and mowed the lawns (he edged, I mowed) did a little pruning (I did the bottom, he did the top) and together we cleaned and fixed the aquaponics system.  His need to "have a lay down" became less and less and I was confident leaving him home alone so he could write a little code or do whatever it was he wanted to do. 

Spirits were high until yesterday morning (Tuesday). We had our normal breakfast of scrambled eggs and Mark was commenting on how good he felt after the work he had done in the garden.  He mentioned that he had been very careful not to over do it and this was the most amount of physical exercise he had done since the operation.  We all cheered and thought that things were only going to get better from here, and why wouldn't they?  I had been making him special juice drinks, vegan meals, green tea and lemon juice drinks before breakfast.  We were following the right nutritional path one should take when one faces cancer. He was off all medication with the exception of a low dose of "Kepra" an anti-seizure medication.  His body was getting strong and getting ready for the 6 weeks of radiation that is due to start on the 26th November.

After breakfast Mark went into our bedroom (yes he is back sleeping with me, rather than the man-cave) and started making the bed, while I cleaned up the kitchen after breakfast.  Next thing I heard him call out "IRENE!" in a strange, deep and desperate voice.  I dropped everything and went running.  He was laying on the bed having a mild seizure.  "It's coming" he tells me and I run and grab the phone.  I feel his left hand and it is ice cold and wet and clammy. We talk and breathe through it and after a few minutes he tells me "it's passed".

So now not feeling so confident, Mark comes along to our Kindermusik session.  Thankfully, we only need to be in the room for a short time and then we leave and can have a cuppa.  I took along some green tea and we sat outside in the sunshine and talk.  Why, why, why is this happening?  We went over and over things.  What do we do? Who do we call? Do I take him back to the Flinders and have to sit around in Emergency all day?  At least he was feeling better now and perhaps we could go out for lunch or something as a friend had been looking after Sebastian every Tuesday for a couple of hours.

We finish the music session and drop Sebastian off at his friends house for his "play date" and I jump back into the car.  "So, where would you like to go?" I ask.  "I think I just want to go home and have a lay down" was the reply. Oh...ok.  Once home, he disappears into his cave and I pickup the phone and ring the oncology nurse again.  She tells me what anyone would tell me, if it happens again, I should really take him back to hospital.  I decide I would see how things went and I make myself a nice hot cappuccino, but before I could even sit down to enjoy it, I hear a familiar car in the driveway which could only be Mark's Dad and brother arriving from Mt Gambier. 

You see, Mark's Dad (Allan) had also had a week in hospital with a chest infection and although the Mt Gambier hospital cleared him to go, they wanted him to come to Adelaide to have his heart checked out, the NEXT DAY! So they were here, calling in to say hi before heading off to Flinders Private for an appointment and then a scan.  I fill them in on the mornings' events and soon they headed off.  Mark emerged feeling fine and seemed quite happy and I made him a coffee as I had done earlier for myself.  He took one mouthful before calling out again.  I help him back into our bedroom to lie down, grab the phone and while holding his hand, I rreluctantly ring 000.

The ambulance arrived in good time but of course the seizure had passed.  We explained everything and we had much discussion as to what to do next.  We were very fortunate to have a very proactive Ambo Officer who asked for names of doctors and he started making phone calls.  He rang the GP and had similar experiences as I had several days before.  No point going there! Then he started making calls to the hospital and he had moved a mountain or two.  He had managed to organise for Mark to be admitted straight into hospital, fast tracked in other words and had spoken to the head Neurosurgeon who was in charge of Mark's condition.  All we had to do was go into Emergency and "check in" and he would be taken straight up to a ward! 

So we spent the afternoon at the Flinders and he ended up back in the Nero-ward.  Well, at least everyone knew him and I was sure he would be in good hands.  It was after 5 before I could finally pickup Seb from his supposed 2 hour play date.  Both exhausted, I made us both pizzas (by Seb's request) and we watched "Finding Nemo" while eating Pizza and Icecream on the couch.  Too tired to do anything else, I later watched another movie while having several glasses of wine before falling into bed. Tomorrow would be a better day!

This morning Sebastian and I were in good spirits after a good night's sleep and I explained to him that we had an early start with swimming and then we would spend the morning with Dad and Pa (who also ended up being admitted) at the hospital.  Seb started a higher grade swimming class (so proud) and did really well and we soon headed in to the hospital.  During our time with Mark, he had another seizure. I grabbed a nurse and explained that he was having a seizure-right now!  The nurse (male) watched while Mark explained what was happening and while he took his own pulse!  The nurse just watched and make some joke and then walked away once Mark had said it had passed. You see, they had upped his Kepra medication, so the seizures were milder and you couldn't see anything happening, but Mark could feel it and explained everything.  I gave Mark some paper and a pen and told him to keep a record of these events.  He had already been doing this, but the information was on his phone.  "Transfer it to paper" I ordered. 

His brother arrived to visit so I thought it was time to "swap" and go and see Pa.  Sebastian and I headed off the long journey down, across and back up to level 5 in Finders Private, only to find that they had taken Allan off for his Angeogram.  Bugga! Ok, let's go to the Oncology department and tell the nurse what has happened.  I tell her about the seizures and that Mark is back on the steroid drug call Dexamethazone (Dex for short).  This is not good news as it will mean that he will be rejected for the trial if he is on Dex, but she tells me that we can still get the drug if he is deemed suitable, but "off-trial".  Satisfied, Seb and I grab some lunch and head back to see Mark again.

I mentioned our discussions to Mark and he looks grim when I tell him that he will not be able to go on the trial for the chemo drug.  I wonder why this is an issue as I thought, as long as we get the drug, what does it matter if it is through the trial or not.  He tells me, or rather, reminds me that this drug is still on trial and therefore not covered by any PBS or medical insurance.  That's ok, it costs what; 10 or 20 thousand right? He says, try 60 thousand.  Oh SHIT!!

So tonight I went back to the hospital and I find out that Mark has had 5 seizures today.  That's 2 more than yesterday.  The nurse comes to do "Obs".  I start telling her that Mark has not seen any of the surgeons who are in charge of his condition and that he has had 5 seizures and his medical notes only have one listed.  I ask if he can have an appointment with the head neurosurgeon, the one who told him to come in to hospital and who had arranged the bed, but had not come to see him.  It was time to get firm and ask some questions.  He was not getting the care he needed.  No one bothered to ask about his seizures, his medications were hours late and no doctors came to check on his condition.  I was furious and ready to check him out and bring him home.  There was nothing the nurses were doing that I couldn't do better at home.  I wrote out a huge list of questions for Mark to ask doctors in the morning.  I decided it would be best if I didn't go in to the hospital first thing as I would just end up pacing up and down the hallway with veins in my head pulsating!  Best I stay home and be ready to come in to the hospital at a minute's notice....

Post Number 8 - Is the Universe trying to Break Me?

It's Wednesday again, a week since my last post, as I sit here sipping chamomile tea rather than the usual glass of Chardonnay! It seems the Universe (or God) is either testing me, trying to break me or maybe it's just trying to show me / teach me more inner strength!

This experience is life changing to all who are involved and not just for the patient.  Like we are not dealing with enough with Mark's illness, I then have to deal with another major outage at work (due to the thunder storm), my own illness with gastro and to top it off, my Mum's partner has been offered a room next to hers at her new retirement village residence (most of which I will need to organise)!  It seems that the minute I get on top of things, there is something else ready to knock me down again, and it's all the little things that add up to an exhausting day.  Simple things like finding a park, trade installations not going to plan, making phone calls and not getting through to the right people, broken toys, dropping, spilling and breaking things, just to name a few, all minor in the grand scheme of things, but when they all happen in a day or two, just make you want to throw your hands up and say, "OK, I give up, just kill me now and put me out of my misery!".

But all these situations could be so much worse and in the end, everything will work itself out, I have to keep believing that.  So tonight we blew the dust off the old Yoga DVD and I dragged my man onto his new Yoga mat and we did a session.  I feel it helped me a lot to clear my head and help to strengthen my back which I put out a couple of weeks ago when moving a bag of sand from the shed to the playground area for the "so-called hired handyman".  Hmmm, it's another story that I don't feel like repeating, but let's just say it's hard to find good help these days!

So I hear you ask, enough about you, how is Mark?  Ok, ok, this blog is about me too remember!!  He is doing really really well in all aspects.  Some days still better than others, but the good days become a higher level of good each time.  Like yesterday he actually spent several hours in front of his computer reading and even writing some code.  He found the "bits missing" in his brain, which scared him a bit, but he found that he could work through these missing parts and still come up with a programming solution, albeit a bit clumsy and probably took 3 times as long, but it still worked. Next time it will be faster and better and so on and so on.

Physical fitness still has a way to go and seems to be slower than expected.  On the weekend, in my brilliance, I suggested we take a walk to Mum's place, the retirement village down the road.  Now on this morning, it was overcast, not hot and the walk was downhill.  They were having their annual fair and I wanted to show our support and visit Mum at the same time as walk the dog, get some fresh air and get in some exercise.  This idea was ticking a number of boxes, time efficient so I thought!

Mark said he was up for it, so with pram, dog and child a ready, we set off.  Mark seemed keen and strong and was setting a good pace.  Before long we arrived and I suggested he sit down and have a rest while I took a quick look at the brick-a-brack.  The clouds started to part and I could see he was getting a little too much sun, so we moved into some shade at some table and chairs so that I could purchase some homemade cakes, lollies for Seb (special occasion) and some pretty average coffee.

It wasn't long before Mark started to fade and he needed desperately to lay down.  I quickly grabbed keys from Mum and took him up to her room (with dog as well, shhhhh) so he could lay down.  I filled his water bottle and told him I would be back soon with the car.

Back downstairs, I squatted down and looked into Seb's eyes.  He knew something was wrong but he was rather quiet.  I told him Daddy wasn't feeling well and we need to get home really quickly to fetch the car to bring him home.  I told him that I needed him to be strong and not to complain, so that I could get home as fast as possible.  Else (the dog) also got a quick pep talk and we headed off at full speed, up the hill.  My talks must of worked as Sebastian did not say a word (normally he would ask a hundred questions and whine for something) and Else trotted alongside the pram without once tripping me up or running in front of the pram.  Funny how children and animals can sense an emergency and just get it together!

Sweating profusely, I dropped off the dog and grabbed the car keys.  Seb hopped in quickly, again without any mucking around and we were back at Mums in record breaking time.  He seemed much better and we brought him home.  He later told me that he felt like a seizure was coming again and he was quite scared.  Thankfully there was no harm done, but he went back into "patient mode" for the rest of that day.  Next morning however, I dragged him out again, only this time a much shorter walk to our local oval.  Once there, I did the exercise and while he rested in the shade and kicked the ball around a little with Sebastian, then walked home.  He told me that it was a good amount of exercise for him and about his limit.  This is good, we now have a line in the sand to work with, but we have a very long way to go, considering we used to walk to the oval (Seb as well), then jog 3 to 4 laps, then walk back!  Patience my dear, patience....that is what I need - more Yoga and Chamomile tea for me I think!