The Lost Days – Thursday

It is not easy to sleep with two arms which are awkward and not comfortable.  It is also difficult as typically in the middle of the night, the scary thoughts come back and all sorts of scenarios play out, including some pretty scary diagnoses.  It is also difficult to sleep with the thought of another scary infusion session to start the day and the possibility of another vein hunt.

So I was still pretty tired and anxious when the time came to head back to the clinic on Thursday and face the next stage.

My appointment was schedule for before the first patient – partly to get the next infusion in promptly and partly so minimise my contact with other patients in the waiting room.

The Dr and I were both fairly quiet as the arm was unwrapped and the IV area examined.  I was willing the line to be open and was very relieved with the Dr said she had been able to flush it.  Again though, it closed in the few moments between preparation and infusion. I lay there, eyes closed, willing it to free, imagining the blood coursing and flowing.  I know it sounds crazy but it is hardly going to do any harm, is it?  Desperate times call for any desperate measure.

Finally it worked and the infusion slowly fed in and my arm all wrapped up again.  My chest and breathing were also checked and I found it a little uncomfortable to inhale deeply, my breath catching a little and my chest feeling a little irritated.   It was time to head back to the lab after checking four or five times what time I was to return in the afternoon.  My brain is having problems retaining details and 3 o’clock was a particularly hard one to grasp.

This was my first visit to the lab when I knew that they were not going to stick a needle in me!  Although I didn’t want to tempt fate, I could not imagine that an X Ray could possibly require needles!  The Lab reception staff met me with the greeting of “Oh Complete Blood Count” and were surprised when I handed them a different referral form.

With Twang Arm in charge and right arm immobilised and now pretty tender and sore it was another challenge getting prepared for the X Ray.  The Radiographer had plenty of opportunity to puzzle over my scar and before long was asking questions.  “Was it a biopsy?”  (A biopsy???????  A scar and lesion that big????), what was the diagnosis (err – all on the referral form) and treatment?  (also on the referral form) and which site was having the chemotherapy??  (try to explain systemic treatment as opposed to localised….).  So maybe I have learned quite a lot in this whole experience.  Glad I can share it!

After the X Ray and a short wait to make sure the image was clear enough to analyse I was free to head home – and I was well in need of a lie down and my morning nap.  Being unwell and the antibiotics were making me really tired, so the best thing is to spend the time horizontal.

I don’t remember much between then and time to head back for infusion 3, but that is probably because I was dreaming for most of the time. We dropped off at the Lab, picked up the X Ray and report and headed back to the clinic.  Red alert – there were children in the waiting room so I was ushered out of the clinic and asked to go and wait downstairs.  It is such a thoughtful and careful environment – the Dr and her PA think of everything and do not want me to run any added risks.  Another example of how extremely fortunate and well cared for I am.

Soon enough, the children had been seen, I was back in the clinic and handed over the huge envelope to the Dr.

She spent a few minutes looking at the images and report.

“I thought I heard a bit of a rattle”, she said!

I had no idea what that meant. She explained.  I was stunned to hear the word “pneumonia”.  Stunned and pretty scared.  However I was a quickly reassured by her analysis.  Pneumonia is treatable, and more importantly, treatable by the GP, although of course Dr W2 would be closely involved in the treatment path.  Additionally, it meant that this infection was not a complex or obscure (or difficult to treat) infection.  There are clear treatment protocols and guidelines for chemo patients with pneumonia, as well as the immense experience of my two wonderful Drs .

So that was the “good” news.   Now it was time to see if the IV line was going to cooperate enough for the next infusion. I could see the Dr looking at my legs again……..  The experience was almost identical the morning – it seemed to work, then clot, and finally with a lot of persuasion it finally allowed the infusion to run.  Again I closed my eyes and imagined everything running smoothly and the Dr said she was also willing it hard to work!

However we knew that the chances of the IV line lasting much longer were very slim.  The Dr said it would come out in the morning irrespective of whether it worked or not.  The fact that the leg would be used was unsaid, but very much on the minds of us both.

Again I was all wrapped up and headed home, arm throbbing and aching and feeling pretty awkward.

Time for a nap. And so to bed.

And that was pretty much what I remember of Thursday – the second lost day.

The lost days – Wednesday

You know it is not a good day when twang arm is suddenly promoted to being the good arm.

You know it is not a good day when you can see that you are at risk of committing one of the serious sins of a chemo patient – running a temperature.

You know it is not a good day when nearly 10 days after chemo you still feel really rotten and are giving up on ever feeling fit and well again.

Wednesday was not a good day.  Wednesday marked the start of the lost days………..

I have to remember that I have managed to get through 5 months of chemo and avoid fever or serious complications.  Although there were a couple of occasions when my temperature rose a little, and threatened to approach the 38° trigger for a brief while, it was no more than a flirtation and I had not become febrile.  Chemotherapy compromises the immune system so the body has little or no resistance for any infection and it can be extremely dangerous, quickly.  Scary stuff!

On Wednesday, the day started fairly innocuously although there was something not quite right even from when I got up.  I still felt generally unwell, blaming it on post chemo bleugh, which does tend to last a bit longer each time, and even wobbly and a bit weepy.  My temperature had been a little higher than normal the evening before, but well below the trigger.  It was still a bit raised in the morning so I knew I should keep an eye on it.  As the day progressed, it did too.  By lunchtime it was well in the 37s and not really reducing.  The difficulty was this kind of half way house – it was not at the level to react rapidly, but it was also not normal.

I had a lie down and willed it to go down.  When I checked it later it was stubbornly sticking around 37.8° and not really reducing. I also know that it tends to increase rather than decrease as the day wears on.  However, I didn’t want to be a total hypochondriac and phone the Dr with a nearly temperature!  So I decided to call the surgery and just share my dilemma – should I keep an eye on it or should I make an appointment? The Dr’s PA took the details and said she would call me back once she had spoken to the Dr.  That felt better.

Five minutes later the phone rang – could I come at 3 pm?  Yes of course, I could.  Although I did not realise until I had put the phone down that it was already after 2.45 pm so I had better get moving quickly (especially when you consider I had been lounging in house clothes and did not want to turn up at the clinic like that!)

When I saw the Dr I explained that I didn’t want to overreact but nor did I want to run any risks.  She was very clear.  A chemo patient with a bit of a fever is a red flag and has to be dealt with proactively and cautiously.  She said that we should start by doing a blood count (oh no – please no needles…..it’s not time yet!) and a chest x ray since my fever was still below 38°.  Then she took my temperature and the story quickly changed.  Between my phone call and arriving in the clinic my temperature had jumped to 38.6° – clearly febrile and warning bells now clanging loudly.  Gently she said to me “We need to get you to Bangkok and to the oncology team there”.  I have the excuse of being already wobbly and also frightened of this new and unknown situation – but I am still not proud of my reaction.  My face crumpled, petted lower lip trembled, my eyes filled with tears and a strange two year old’s voice come out of my mouth wailing “oh no, please…….”

There were a few things behind my reaction.  Partly fear and vulnerability of what was wrong.  However, there were some practical and logistical troubles which took greater prominence than they should – I knew we did not have the right papers in our hands for hubby J to enter Thailand so I would in all likelihood be heading alone.  Not knowing what was wrong and how serious it was would be difficult for J if he was held back until he could travel.  I knew also that if I left that night we could well be away for many weeks (as we move to radiation) and the thought of rushing out of the door with only enough time to stuff a few essentials in a bag and no time to talk with anyone was really difficult.  The rational side of course knew that these elements were not important and that rapid treatment was the vital thing, but emotional and rational sides often do not cooperate.

There were no glaringly obvious signs of what might be causing the fever, – yes I had a bit of a scratchy throat (I always did after chemo), mouth was a bit tender and same (same) although I had noticed that I had a little discomfort on inhaling deeply, though not as much as a cough.

The first thing the Dr did was to phone the hospital in Bangkok and our wonderful liaison manager.  Can you believe that within 15 minutes Dr W2 (who was not even on duty in the hospital) had been tracked down and was on the line to speak with the Dr here?  Even in my pathetic state I was impressed!  There was a rapid exchange of information and within a few minutes, the Drs had set out the next step.  I had to go straight to the lab and get a CBC – Complete Blood Count.  If the neutrophils were below the minimum I was on my way to Bangkok.  If they were acceptable the two Drs would agree a diagnostic and treatment path based on the pathology.

I winced and gave my right arm yet again for the blood test, and with some difficulty blood was eventually found and drawn for the count.  My veins are becoming increasingly difficult to access because Twang Arm is exempt from blood tests, injections and Blood Pressure checking.  Great, except that right arm is now in a state of perma-bruising (like perma frost – it never goes away ;) ) and marking from the regular needle sticking.  We waited for the results and J and I guessed what the neutrophils count would be.  It had to be between 1.5 and 6.6, so J put his money on a modest 1.8.  I held out for a more convincing high count and declared 2.7 as my guess.  After a while I was called to the desk where I was requested on the phone.  The Lab had phoned the results directly to the Dr and she wanted to speak to me.

Our guesses were way out.  My neutrophil count was a surprising 14.76!!  Now that seemed like good news on the face of it.  However the Dr quickly explained to me.  This shows the very clear presence of a bacterial infection.  We were to head straight back to the clinic and review the way forward based on this pathology.  The sun was already low in the sky and my stomach knotted with the uncertainty of a possible flight to Bangkok and the unknown, within a few hours.

With the pathology report, the two Drs consulted again and after a little discussion and clarification a path was agreed.  Good news – start treating right now in Yangon, with follow up X ray and other tests in the morning to try and find out the type of infection.  Bad news – intravenous antibiotics where there was seriously limited access to the veins.

The Dr and I both knew that a difficult and unpleasant time was imminent.  She had already checked my veins and been highly unimpressed!  She had a good look at the arm and tried to work some of the veins into prominence – at least enough for needle access.  We did talk about the port, but the difficulty was that she was not familiar with its working and also I remember that the port seems to use a special needle.  Neither of us felt it a good idea to risk ruining the port even although the alternative was not so attractive.  She also spent a bit of time looking at my legs.  Once the arm access is compromised there is no choice but to find other access.  As if it is not bad enough having an arm which has lots of marks along the veins, I could end up with marks on my legs too!  Wonderful!

The Dr identified a couple of possible entry points and encouraged the veins to come up.  She also very thoughtfully prepared a paediatric cannula, keenly aware of how sensitive my poor chemo skin is.  She talked me through was happening and we got to that horrible point (literally) when I heard the rip of sterile packing which indicated the needle about to meet my skin.  The first vein didn’t work.  It had looked fairly promising and had not been used too often, but it was quickly clear that it was not going to cooperate.  So starting again, locating the next best one (or the second least worst one?) and having to finally settle on one which would be the last choice.  If that didn’t work – eugh – leg time!!!  The Dr was reluctant to try this one, as it is in an awkward site (near the elbow) and immobilises the whole arm.  Vein beggars can’t be choosers though!  A few minutes later, we were at the same point and the needle was again sliding in -  oooouuuuuccccccchhhhhhhhh!  Gold!  It reached the vein and Dr started to prepare for the first antibiotic infusion.  (There had been no point in having this ready as we knew access could take a good bit of time).

When she started to infuse the antibiotic, she spoke scary words – there is some resistance…………  it seems that the vein had quickly clotted and the point sealed.  I started producing saline from my eyes and wondered where I could hide my legs.  Not to be beaten, she worked on the vein and flushed the cannula to see if it would clear.  Finally it did clear and the antibiotic started to go in.  It needs to go in by a “slow push”, and gently the first dose was all despatched into the blood stream.

Given the difficulties in access it was clearly the best thing to leave the cannula in, even though it would be uncomfortable and immobilise the arm.  We also knew that we were lucky that the cannula had worked once – the chances of it working for the full 4 doses were pretty slim, especially given that it had closed up so quickly.

Finally, clutching a prescription for the oral antibiotics we were able to leave, with my arm bound, protecting the IV line.  I had to return in the morning for the next infusion and we were all hoping and praying for the line to work again.

It had been nearly 4 hours since I had left home that afternoon and so much had changed.  And with my right arm being rendered immobile and unusable – Twang Arm suddenly became the good arm!  It introduced me to the very interesting activity, which should be an Olympic event (not a triathlon event!) – Twang Arm Tooth Brushing.  This combines the challenge of brushing with the left hand with the added factor the arm being Twang!  Put it this way, the activity is not complete until all traces of toothpaste have been removed from the face.

And so to bed.

And that was Wednesday, the first of the lost days.

The Lost Days

I’m trying to reconnect a bit with the world as I have been a bit out of it the past few days.  An infection finally caught me and the suppressed immune system and the past few days have disappeared under a bit of a haze.

I am getting back on my feet and doing fine, with excellent care as always.

Details coming very shortly ……………

Ding ding – chemo boxing! (Rocky and the Rag doll!)

Continuing the theme of cancer treatment as the Triathlon from Hell, this idea has been growing and developing during sleepless moments.  (It is better thinking these kind of thoughts than the scary ones, so bear with my strange, overactive mind).

This wretched chemo event, which I have nearly completed, feels increasing like a Boxing Match to me as time goes on.  Mine is an 8 round boxing match.  I have never been a fan of boxing either, so my choice of this analogy is probably highly pertinent.

I feel as if I am wheeled into the Boxing Ring, ill equipped and untrained.  And there in the corner – appears Rocky or some huge hulk, bouncing on his toes and sparring with an invisible pocket of air.  The fact I am no match does not matter, he is going to splatter me because that is what he does.

Now at the start of the Boxing Match Rocky is fresh, but remember I have already completed the first Triathlon event – major surgery.  So I am not exactly at the peak of fitness or prepared for the first bout.  However, the bell sounds and off we go.  All too quickly the round is over, and I am picked up off the floor and carted off to the corner to recover and prepare for the second round.  Side effects sweep in, blood counts drop but before I know it, I am being wheeled back for the second round.

This time I am a bit weaker, though I know what is coming, and when I crawl away when the end of round bell goes, I try hard to get myself back on my feet and ready for the next bout.

Each time Rocky wipes the floor with me, and each time I am pulled up and plonked back in the ring for another round.  Each time I struggle to get back on my feet but still I have to get back in the ring.

Then a really sneaky thing happens.  At the half way stage, Rocky is retired!  A new hulk, Rocky 2, appears with new tricks up his sleeve.  He is fresh and has different tactics.  He doesn’t go so much for the nausea side effects and overwhelming fatigue.  No, he hammers my bones, tramps on my fingers and attacks parts which were previously protected.

After each round, I just want to crawl away – but at no time do I crave the knock out bell, strangely!  I am as determined to get to the end of this bout as Rocky and Rocky 2 are.  But it is clear that I am being progressively and seriously weakened as this bout progresses and I have to push myself to focus on that final bell to mark the end of Round 8 and the end of the Chemo Boxing Match and Triathlon Event 2.

So here I am, sitting in the corner between Rounds 7 and 8 and really not looking forward at all to the inevitable “ding, ding” of the next round.  I am licking my wounds, and just trying to muster enough strength to get back in the ring. In contrast, Rocky 2 seems rather bored with it all.

The interesting thing about this analogy is that Rocky and Rocky 2 are not actually battering me so that they can win.  They are battering the life and existence out of any remaining cancer cells. They are hammering me in order to make me better and for me to recover.

So in this surreal Boxing Match of the Triathlon from hellhell, the crucial thing is to keep getting back in the ring, to keep taking a hammering and at the end of the required rounds, to step aside and move on to the next event.

And one very important thing?  I must be thankful to Rocky (1 and 2) for guiding me through this bout and for hammering me so effectively – it is such in important part in the path towards recovery!

Progress Preview

A quick one with the headlines:

  • Blood test (including needle) – done :)
  • Review with Dr W2 – done :)
  • Anaemia – bit better than Thursday (?!) and almost back to the level it was before Chemo 6 – hmmm.
  • Transfusion – not essential, and fit to fly :)
  • Chemo 7 (Taxotere 3) – DONE! FINISHED! :) :) :)
  • Side effects – on their way as we speak……………….
  • White cell booster – tomorrow (with needle – :( )
  • Chemo treat – decision made, procurement in process, wait for updates
  • Eyebrows – almost gone!!!  More about those disappearing rascals later…………
  • Fingers and fingernails – numb, tender and a not pretty – more about them later too….

Today, Dr W2 was on great form – very positive and happy with the way things are going.  I still have quite a few questions, but was highly encouraged at how positive he was about my progress.  And trust me, he is very direct and frank (for example about my lymph node involement and the need for a heavy Chemo course) so I know he does not believe in platitudes.  Duck billed or otherwise.

So there were are – 87.5% through the Chemo event and only one more chemo left.  If all goes well that will be on April 4.  Then I will be clambering over the wall and leaving the All Exclusive Chemo Club, and much as I am grateful to it, I never ever want to have to come back!

The Haemoglobin Limbo Dance

A new factor to feed my anxiety this time is the likelihood of some intervention to deal with the decreasing haemoglobin levels.  They are doing their own limbo dance since Dr W said he would only do one more chemo (that was No 6) and see “how low they can go”. Thursday’s blood test showed that despite incredibly careful diet, piles of iron rich food and very careful attention, they have reached new depths.  Marvellous!

On the positive side, I have been able to find out a bit more about transfusions and the risks involved.  Transfusion is the mostly likely intervention as others are either less effective or carry different and greater risks.  As far as possible I have been reassured about the blood screening and other processes here, although I would still prefer not to be facing this choice.  Decisions are likely to be made tomorrow once a new vampire test is taken and the latest counts analysed.

I would be very suprised if they show any significant improvement which would merit a stay of transfusion.   Furthermore, it is pretty clear that the risk of not transfusing is quite a bit greater than transfusing the way things are at the moment.  For example, every time I travel between Yangon and Bangkok, I need a “fit to fly” letter from the treating Doctor to confirm that I am cleared as well enough to fly.  I learned yesterday that if the haemoglobin levels drop too much then at a certain level you are no longer considered fit to fly as there is a risk of becoming – something that sounded  like “hyperbombastic”!!  Being hyperbombastic on an aeroplane is not good apparently!

This is in addition to the risks which severe anaemia brings and the fact that chemo 7 may not go ahead with these low haemoglobin levels.

And I am not even considering that there could be any disruption brought by the ironically coloured crowds gathering in other parts of the city…………

So let’s see what tomorrow brings and where I shall be updating from at that point.

Follicular Update

I have not ranted about hair for a while, and surprisingly things keep changing so it is time for an update.  This was prompted when I noticed something rather odd a few days ago.

Today marks 20 weeks since I started chemo. It took just over 3 weeks and an intermediate short cut to lose the hair on my scalp.

I was and am still outraged that the hairs on my legs hung on for dear life and still most are obstinately in place. My response has been a refusal to depilate. Although as well as wanting to show them how cross I am, it is actually not wise to depilate as that can give an opening for infection.

I mentioned a couple of weeks ago that weird things are happening on my head. I have a soft, uneven down covering my scalp. It is around a centimetre in length on average, and mostly a very fair, non colour. Called blonde. It is not grey or white. That is a different colour – totally different. There are also quite a few dark strands scatted around. When I check the breast cancer forums online, I learn that other women have a similar fuzz. I have no idea what impact the taxotere is having on my hair as it is less than 6 weeks since the first taxotere cycle, and whether this growth is the start of hair of an interim duck phase.

The weirdest thing I have to report though is a sudden change in eyebrow behaviour. My eyelashes have been consistently patchy, and the lower ones very sparse, but the eyebrows have stayed in place. I have no idea what their game is at this stage, but I have developed bald patches in my eyebrows. Now what on earth is that about? And I am not talking about nice, even baldness – patchy horrible baldness amidst healthy brows! How gross is that?

And how unfair to wait until 20 weeks to throw this one into the game?

One day at a time? But how??

So many thoughts are crowding my mind about the future – it really feels as if a kind of crunch time is approaching and it is really. I am three quarters of my way through the long chemo path – HURRAY – and of course I am so glad to be nearing the end of these tough and horrible months. Even the prospect of weeks of radiation feels much more doable.  So why am I getting myself in a knot instead of preparing celebrations?

It’s that big question which is easy to forget when buried in the exclusive chemo club while the focus is just on getting through it. The all important question – Did the treatment work???? I am so scared that despite the heavy and thorough treatment, I will not be in the statistics which will see me cancer free. I don’t think I actually believe that will happen, but it is for sure my biggest fear, and I am sure I am far from alone in this. It is what we all dread. Right now, everything I am focusing on is based around recovery, and anything or everything else is too scary. Not just for the medical side (and that is a very scary prospect) but the implications on our whole life and future. There would be more treatment and the physical, emotional and mental toll of renewed rounds of treatment. Delay in recovery. Jeopardising return to work. The yearn for a life which is not based totally around treatment. Managing a long, difficult and chronic decline in health. All very, very frightening.

I am not trying to be negative and gloomy, but a cancer diagnosis brings with it possibilities which are not nice, and while not wanting to dwell on this side and on the probabilities of not recovering, I have to think of what we might have to do if I am in the small percentage for whom the treatment has not totally eradicated the disease or for whom there is recurrence or spread.

In fact I remember just after my surgery, talking with close family and saying how much I have done and lived through especially in the past few years in Asia. I was trying to say that even if the worst case scenario transpires, that I don’t have huge regrets. (Though of course I still want to see the kangaroo, iceberg and northern lights/Aurora Borealis). But do not mistake that for acceptance or expectation that the worst scenario will transpire. I fully intend and plan to get better – and remember my 2010 mantra is Recovery, Discovery and Laughter. But, let’s be honest, cancer is cancer and it is also going to put up a fight.

It does make me think back to my first appointment with my Dr in Yangon, back at the end of September and prior to diagnosis. I was asking all sorts of impossible “what if” questions. If it is cancer, what is the treatment likely to be, for example. My Dr explained that (from where we were at that point) there were many scenarios – including a benign diagnosis. For each there are international protocols guiding treatment paths. As hard as it would be, her advice to me was to try and take each step as it came. Then we would know what we were dealing with and be able to work with specifics. We needed facts – otherwise all is speculation.

And I think that is why my head is where it is at just now – because the next lot of facts sure have a lot riding on them. And isn’t the mind a funny and often independent thing? Here I am, 75% of the way through chemo, and there it goes, actively seeking new worries?

So I am making a real effort to take my Dr’s original advice and focus on the “NOW”, on this step and the next two chemos. Let’s see if I can boost those red cells through diet, build my strength through my beloved and obsessive swimming, and try and get Twang Arm in line with some new activities.

However, it does mean I do have big questions for Dr W2 in Bangkok next time. I do want and need to know how and when we are going to know if everything we are throwing at the cancer beast has indeed has indeed sent it running!

A footnote before the note?

Now I am having fun – playing with the dimension of time and putting a blog post before a post!

The next post is one which has been in preparation for a few days, and touches on some heavy stuff.  The reason for this footnote is put it into perspective a bit before it is read.

Right at the outset of this blog, I stated that there are different reasons for me recording and sharing this experience.  And to be very honest, the biggest part is the selfish one.  It helps me.  It helps me to process this heavy stuff.  It gives an outlet for the heavy physical as well as the emotional path which I am travelling.  It helps me to deal with it because it is less overwhelming once it has been chewed over in my mind over and again and then set out in black and white text.  This whole process means that by the time the heavy words appear on the blog I already feel lighter and see things more in perspective!

So please remember that when you need the next post that I felt a lot better after writing it than I did before!