Part 2 – Scary Thursday

The first appointment had gone well on the Tuesday, and the rest was waiting for me with most of it due to happen on scary Thursday.

This round of appointments would include 3 appointments with specialists and something with the port, as well as the visit to the lab of course to re-unite me with some needles and confront me with my aversion to them.

As always before these checks I did not sleep well.  This could be partly attributed to the inevitable anxiety, replaying all of the possible scenarios and results in my head.  It was also partly because I had made a concerted effort not to become dehydrated before my fasting blood test.  Apparently dehydration can be one cause for the CEA tumour marker to be raised. The natural consequences of this hydration strategy unsurprisingly added to the number of times I awoke in the night.

My first appointment was at 9.15 am which meant blood-letting in advance of that.  I arrived at Counter 2 just after 8 am and in no time had been processed by the blood letting counter.   As always, the veins were in hiding and the blood letting nurse had to slap them a bit to make them cooperate, and I was relieved as always when the happy plaster was on my arm to show that the procedure was complete.

My first appointment was with Dr A.  He is an endocrinologist apparently though I am going to have to Google that to be clear what it means.  I do know that he looks into my glucose levels, cholesterol, other blood stuff and blood pressure.  I also get a sneak preview of the tumour marker which is also on the bloods report and this is a big thing on my mind.  My BP was good, much lower than usual when being checked by a white coat.  I think that the Sudoku in the waiting area helped.  My cholesterol was also very good (reflecting I think, the care I am taking with what I eat).  The sugar levels were still a bit high though, and although not at diabetic level, they are still sitting consistently in what Dr A terms the “pre-diabetic” stage.  Diabetes does run in our family – my mother, maternal grandmother and great mother were all diabetic so I know that I have to work hard to keep it at bay.  The longer I can do this the better.

I tried to have a quick peek at the tumour marker result but couldn’t see it, so I asked Dr A how it was, unable to contain my nervous curiosity any longer.  It was blank. There was no result in the space against the marker tests.  Dr A checked and noted that it had definitely been requested, and said that perhaps it was not yet ready.  So my day would not have the prior knowledge of this result, and I would have no choice but to wait until I saw Dr W2 that evening to be put out of my misery.

Dr A was happy with the work I am doing to try and be as healthy as possible, but it is clear that I have more to do.  He asked me to come back in 3 months.

No surprises in this appointment, and positive messages mainly.  With that, I headed off to break my fast as I was starving!

I had a few errands to run in the intervening time, before the evening scary appointments and the hours passed fairly quickly.  Before long I was back at Counter 2 and waiting for Dr W2.  I knew he was not there yet, because it was quiet!  I soon heard his signature laughter and sure enough he rounded the corner and headed towards his room.

I was first on the list and with minutes was on the examination couch while he gave me a thorough check.  He said that Dr C had been very happy with my progress.  I replied that I no longer seemed to be cooking on a slow roast, and that led us onto a conversation about whether I was medium rare or well done!  After the examination I knew the tumour marker question would come up and I tried again to peek at the results page, but Dr W2 was holding the paper at an angle and I could not see the numbers.  Then he announced that my tumour marker was now in the normal range. What?  Really????  Are you sure?  The marker was now sitting at 3.3 – and the normal reference range is under 3.8.  The great thing about this is not just that it was normal, but that it has reduced with each 3 month check.  It was at 5.03 in August, and then went down to 4.54.  The reassurance for me, bearing in mind that the tumour markers are not a complete or fully reliable indicator, was that the markers were consistently reducing.  In my lay mind, my fear was that a marker which continued to rise would probably have a worrying cause and suggest that something nasty might be growing in my system.  So a move in the opposite direction is something I find very reassuring.

Dr W2 spent some time talking about my hormone levels and whether or not I am post menopausal.  Having ovaries is not a great thing and he wants to keep an eye on my hormonal levels and the blood counts are inconsistent.

Then we moved onto the subject of the port, which had also been on my mind for quite a while.  He said that if it was being problematic then it could probably come out but first we should try and see if it would flush.  He said that the oncology nurses are highly experienced in “cannulising” (sounded like “caramelising” ports so they may well be able to see what the problem was.  If it would not clear then I would have the port removed.  Obviously this was daunting and frightening, but I knew it was inevitable. Adding to the stress, was the fact that my flight was booked for the early afternoon, which meant that any (even minor) surgery would have to be finished my mid morning so that I could get my flight.  I asked if he thought it would be wiser to delay my return, and he laughed and said it was very easy to take the port out.  This was accompanied by a gesture which looked alarmingly like that of a noose being tightened, as he mimicked whipping out the port and catheter which is currently connected via the jugular vein into the heart!  Yeeeeeeeech!!  I said that if it was being taken out I wanted happy pills.  If I have enough then I don’t need an aeroplane to get me back to Yangon – I could fly back under my own steam!

He said the magic words – nothing indicating recurrence or spread and asked me to come back in 3 months.  Actually, he asked me when I wanted to come back – I said I had been expecting to return in 3 months and he said that was the right answer!  So l left his room clasping an appointment slip, the 3.3 and NED in my head and the terror of the port work in the morning.

I completely forgot to ask one of my important questions with all the port and marker discussion.  When is it safe to dye my hair?!  I love my chemo curls but do not like the colour and want to do something subtle to turn into a stunning red-head or at least non-grey head.  I am not sure if I can wait 3 months to know the answer so any wise words would be highly appreciated.

I headed straight round to Counter 3 and Dr W’s office.  My wait was again very short and I was called in almost immediately.  Again I had to leap up onto the examination couch so that Dr W could check out Twang Arm as well as my scars and remaining asset.  I was able to get Twang Arm a bit higher than last time, but still not good enough for Dr W.  He gave me a very thorough examination and said that he saw nothing to worry him.  I did ask him about a rash which comes and goes and seems to be worse when the weather is hot.  I was fairly sure it was a type of heat rash but do not want to ignore anything which could be an indication of something more sinister.  He said he had seen the rash and did not think it was worrying but that it would be wise to see a dermatologist.  With the limited time I have until my flight, this is something I will need to take forward in Yangon or when I am back.  He says I should get it seen to particularly if it gets any worse.  I think having radiation, surgery and shingles has left me with very sensitive skin which is too easily irritated.

He then spoke about my weight.  Despite my daily swimming and care of how I eat, I am not getting any lighter.  It is possible that Tamoxifen is not helping.  I know that to maximise my probability of keeping any recurrence at bay, I have to really look after my health and exercise and diet are critical.  Dr W was very clear.  I should try and lose 5 kg before my next appointment.  I need to crank things up another gear to try and get off this plateau.

Dr W confirmed that he wants to re-run the scans at my next check, to keep an eye on the marks on my liver and the little cyst in my right breast.  I do find this reassuring, though I know that when the time comes round I will be highly anxious about them.  For the time being though, I was happy to be sent away with my friend NED and appointment slips for April.

I walked back into the night air, highly relieved, albeit mindful of the importance of really working hard on my health and wellbeing.  Scary Thursday was nearly over and although the reports were good, the prospect of the work on the port the next morning was providing very good material for worry.  Although I was very tired, I knew that I would probably have another rather fretful night.

Carpe diem

It has been a strange few days since the checks on Thursday and port flush on Friday.  To say I have been up and down, lurching between ridiculously irrational to calm and rational (well, not so often for the latter) would perhaps begin to capture what it has been like.  Remember that I am in a strange, unexpected place.  This goes far to shed light on what it is like.

In the space of the past few days, I have been angry with the tumour marker – for being raised.  Pure and simple, if it had not been raised I would have had a really good check so I am cross with the marker.  I am pleased at how my body has been recovering, despite what it has had thrown at it (major surgery, minor surgery, chemo x 8, 5 weeks radiation, pneumonia and shingles in case I had forgotten).  I have been taking control and had a lovely one to one Pilates session (long overdue from a block booked during chemo and which I was subsequently too sick to take up) and a lovely long swim in our apartment pool.  I have been scooting round Bangkok doing errands, chores and hardly been inside a taxi for a change.  I can manage the stairs on the Skytrain without thinking twice – and to remember back to the awful taxotere days when I could hardly stand, and thought I was going to collapse when I did try and go up the Skytrain stairs.  I have had a scare that the horrible shingles had returned, when my skin erupted under the elastoplast following the port flush.  I was horrified when spots re-appeared in the exact same place and formation as one of the shingles set.  I was relieved when these dreaded spots died down quickly and think that my poor skin which had been battered by chemo sensitivity, radiation burn and then shingles reacted quickly and angrily when the port was flushed and an innocent plaster pasted over the needle area.  If you add the stress of the check up and the marker result then it is probably not surprising that my skin flared up.  I was delighted and then rapidly disappointed when the prosthesis I had ordered for swimming turned was not exactly right.  I really liked it, it was comfortable and far less visibly assymetrical than Prosthesis 1, 2  and 3.  I have ordered the better size and childishly cannot wait until it arrives from Europe. Until then it will be jacuzzi swimming and misaligned headlights  😉 .

Most of all though, I have been fighting the anxiety of the wretched raised tumour marker and have been overwhelmed by messages of support, suggestion and encouragement.  I have been trying hard to rationalise it and find that as much as I do, the irrational, anxious side of me cannot absorb sensible logic. I can get the marker angst under control easily in daylight hours, but at night when Tamoxifen (is it a conspiracy??) is keeping me awake, it is hard to shake off the worries.

Then a simple sentence cut through all of that angst and shrivelled the worry.  The magic trick was when I was reminded how quickly and thoroughly the medical team had acted since I was diagnosed. (Mastectomy 3 days after diagnosis, first chemo 18 days after surgery, radiation 2 weeks after last chemo)  All in all it is probably a world speed record!  So if the Doctors had been seriously concerned, then they would at least have ordered further tests and would not be sending me away for 3 months.  In fact I remember that Dr W was concerned that 10 days had passed since my discovery of the lump in September 2009, which in itself is an impressive timescale between GP consultation and specialist appointment (one week) and his readiness to operate the following morning after diagnosis  bears that out for sure.  So let’s be honest, if these guys are happy to see me in 3 months, and they really know their stuff, then this marker must indeed be a very minor concern.

So why waste a good day today, worrying about a possible bad day in the future (to steal a quote from my pal Chemobabe’s blog) for what is, in balance, not a good enough reason.  We will head back to Yangon tomorrow, and make the most of recovery and healing time. 

Thanks so much for keeping me moving forwards, onwards and upwards – and let’s focus on carpe diem!

The first 3 month check

The strange post treatment phase has been a time when life has not been lived around hospital appointments.  However, not terribly far on the horizon has been the prospect of the regular 3 monthly checks.  I am glad that I have such regular monitoring, but at the same time am so scared of recurrence that I dread the checks as much as I value them.

It seems like no time since we were last at the airport, travelling for my 8th chemo, but it was over 4 months ago.  Of course the chemo was followed by the radiation and then home leave in Scotland, so it has been not long over a month since getting back home and picking up the reins of a life again.

It was a strange feeling being at the airport and it reminded me more of my first departure in October, more than the subsequent visits for some reason.  Perhaps the fact that this visit was a check and held the same uncertainty as the first visit did.  The clouds were heavy and black and our short flight pretty turbulent, a bit like my nervous stomach I guess.

We were quickly in Bangkok, and arrived in our studio before sunset.  I was happily distracted by good internet connection and spent a good part of the evening catching up.

All too soon, it was morning though, and that meant one thing.  Although my appointments were not until the late afternoon, I had to have blood taken and some of the tests need me to fast beforehand.  So I headed round to the bloodletting counter and after revising some timings my name was called by the needle lady.  She recognised me, or at least she recognised my battered chemo veins and my pathetic whimper asking for gentle treatment.  A number of vials were filled quickly and the first needle bit was finished – phew!

I was then free until the first appointment later in the afternoon but in my usual wittery self, was unable to really be able to relax and enjoy the time.  I found myself wishing the time forward and before long it worked and I headed along to my first appointment.

This was with Dr A who has taken over from Dr P and a kind of GP.  He looks particularly at my blood pressure and blood sugar as they are a bit troublesome.  The steroids of chemo had caused higher blood sugar levels and with a history of diabetes in the family it is something that needs to be monitored.  Dr A noted that the fasting sugar was fine but the other one a bit high, not enough to be considered diabetic, but he termed it pre-diabetic.  Great, but no surprise.  So we had a chat about carbohydrates and fruit and clarified the need to avoid too much or too many.  Unfortunately mangos are to be strictly limited, which is really hard just as now as they are in season and just delicious!  My BP check, although high before the appointment due to my nervousness of the checks, was fine and well under control.

More importantly though, Dr A went through my other blood results and was really pleased that liver, kidney function are normal, cholesterol good and red and white blood counts getting back to normal.  The body is amazing in the way it heals and recovers after such heavy treatment.  So he was very pleased and asked me to come back in 3 months.  Phew!  One down, two to go.

Next was my appointment with Dr W2, the oncologist.  We had a bit of a wait as he was delayed but before long we heard him whistling before we saw his smile.  He called me in, and firstly examined me, checking the radiation healing, and my surgery area.  I almost forgot to tell him I had had shingles, and he checked that too.

Then it was time for him to look at the bloodwork that he had ordered.  He was similarly pleased with my recovery, but noted one result.  This is the CEA or Carcinogenic Embryonic Agent and it sounds pretty sinister to me.  He said that this one was higher than the last time it was tested, back in May at the end of radiation.  This immediately set of loud clanging alarm bells in my head and I asked him about the CEA.  He said it is sometimes called a tumour marker, which I have heard of, and this can be an indicator of some progression or recurrence, but can also be caused by other factors.  He said that smoking can cause it to be elevated – and I told him that did not reassure me as I have never smoked!  I knew I was going to be Googling as soon as I got back to the studio!!  He told me that it is not anything to worry about at the moment, but that he wants to keep an eye on it and see me again in 3 months.  He had said in May that he would make a decision about whether or not to de-port me this time, but we did not discuss it, and I am pretty sure that is because there is no point in taking the port out when the marker is slightly high. Hmmm.  So then we talked about another favourite activity – flushing the port.  He said it should be flushed then, and again in 6 weeks, at the midway point between checks.  I asked if I could have it done in the morning (today) and he laughed and asked if I had forgotten my magic numbing cream (though of course he called it by its proper name).  I said that I still had to see Dr W and that it would be very late so best to do it in the morning, and he agreed.

So my heart was a bit heavy when I left his room, even the general message was good, the tumour marker was not something I had wanted to hear.  It made my wait for Dr W (the surgeon) a bit gloomy, as I watched the women whose appointments were ahead of mine.  I also knew that Dr W would have something to say about the Revenge of Twang Arm.  His assistant kept me updated on how many patients were in front of me, bless her, and soon it was my turn.  After a warm hello I was sent straight to the couch for examination.  He examined me very thoroughly, which I found reassuring and he found a very tender spot under one arm which seemed to be linked with the shingles nerve. He said he saw nothing suspicious or worrying. PHEW!!  I do like to hear those words said out loud.  As expected he was not impressed with Twang Arm’s limited range of motion.  Thanks, Radiation.  Thanks, Shingles.  He was particularly interested in my hair and the Annie Lennox look!!  He asked what it was like before and I told him it was a different colour.  He asked if it had been curly before, as there are definite kinks appearing. He was highly amused when I explained that I had paid large amounts of money at the hairdressers to get curls in the past.  Somehow I preferred that to the chemo curling process!

We then sat down and he went through the details from his surgeon perspective.  Apart from Twang Arm’s stubbornness he was pleased with my progress.  He saw that Dr W2 had noted the elevated CEA tumour marker and I took the chance to ask him about it.  He also said it was nothing to worry about, but that we should keep an eye on it.  Apparently if it rises it can also indicate colon cancer, but was not at the levels which would indicate breast cancer, so he seemed very cool about it.  He then asked if I have had a mammogram since diagnosis, and I said that I hadn’t.  As I had expected, he said that he wanted to do the Big Check at the next check up as it would be around the one year mark, the time I have heard called the Cancerversary.  He said that he had found nothing worrying, but of course the scans and mammo will give much more information and detail when I come back in November. 

So it was all reassuring – up to a point.  I really feel much stronger and fitter and the blood work was very encouraging.  Except for that CEA marker of course, which was a real cloud.  Predictably I was on Google as soon as I hit the sofa back at the studio, and looking up causes for elevated CEA.  I did get a bit of insight, but not a lot of reassurance to be honest.  The markers can indicate some progression which is really scary.  However, the markers are apparently not a solid and reliable indicator on their own and in isolation and they should be tracked over a period of time alongside other tests.  I also read that a minor variation (less than 2) was not worrying (ooh good – my rise was 1.1) – but as long as it is within the normal range.  Oh.  Mine was not significantly raised but is above the normal range without a clear cause.  It was at the upper level of normal for a smoker.  The one nugget I got from Google was that dehydration can concentrate the CEA and raise the result.  I am hanging on to that a bit as I had fasted before the blood tests, and therefore was probably slightly dehydrated. 

So the day ended on a mixed note.  Relief that I am doing well and recovering, and of course that there was no obvious sign of any nasties.  Relief that I had got through the first review check and had some really encouraging words.  This was tempered however, by the trepidation of the port flushing in the morning, which I really dread.  Most of all, though, was the niggle of the CEA marker and the knowledge which has lodged in my brain that there is a slight possibility of something unwelcome going on.

I am a worrier by nature.  It is my best skill and I am an expert in the art of tormenting myself.  I managed to rationalise the whole thing before I slept, but when I woke in the night, my mind had turned it into a big scary beast. I usually get rid of these thoughts by focusing on the coming day – but with the prospect of the dreaded port flush I found myself between a rock and a hard place in terms of seeking reassuring thoughts.

Happily, the day arrived in bright and sunny form which helped to dispel negative thought and I focused on getting back to the hospital and getting the port flush over and done with.  I headed to the oncology ward on the 5th floor and had the magic numbing cream slathered over the port area.  After the usual hour to let it take effect I returned and let the wonderful oncology nurse get on with the dreaded task.  The needle was soon in and apparently my blood return was again good and the port was quickly cleaned and the needle could come out again.

So I was able to leave the hospital, and seal closure on my first 3 month check.  I am due to come back in November and know that I will be really stressed by the Big Check, the marker contributing significantly to that stress.  In the meantime, however, it’s time to continue with recovery, do all I can to heal – and to continue to see off Twang Arm!