Seasons

Hello everyone,

I need not tell you that there are four seasons every year: summer, autumn, winter & spring. What I have come to learn in that we also live through seasons in our personal lives, some which last longer than others & some which pass almost as soon as they have begun. Over the past few months, I have lived through all of these seasons.

Up until the middle of March, it was summer, physically, mentally & literally. The sun shone daily in my life. I was oblivious to what was going on inside my body. Autumn then arrived, the season which marks the transition from summer to winter. That time of the year when leaves start to fall off the trees, flowers die, days are still warm, but the freshness of winter shows subtle signs. It was in this season of my life when things started to fall apart, my soul was dying & very apparent signs of winter were setting in, rapidly. Winter came around not long after, a dark, wet & gloomy couple of months, which felt to be lasting a lifetime as I faced many disappointments, setbacks & tears. The sun however did shine on a number of days & spring had arrived.

I was back in the care of Dr Langenhoven. I had started my treatment & I felt like a whole new person for a short period & then winter returned bringing with it a period of prolonged side effects. As mentioned in my previous blog, the sun will always shine. The leaves & flowers will grow back. I found my "stolen" energy which enabled me to get back to my exercise routine, my bloods were tracking well  & people were commenting on how well I am looking. My leaves were growing back & my buds were starting to bloom.

For those of you living in Cape Town or the Northern hemisphere, we often experience multiple seasons in one day. It is always best to be prepared, or you could be caught off guard. One of those days was 19th August.

It was my 1st consult in two weeks & the day on which my PET scan results were shared.

I woke, it was summer. I was upbeat & positive & was not feeling anxious about my results at all. The waiting room was a hive of activity, almost all the chairs taken. We had a short wait. Dr Langenhoven looked well & in less discomfort than when I saw her last. It was pleasing to see.

As always, we started with small talk around how I was feeling & then proceeded to talk through my bloodworks. For the most part they looked good. My liver continues to be tracking well, now down to 210 from starting at 513. I am still a long way off from the level it should be, but on the decline, which is great.  For the first time in a while, my protein level was up. The expected levels of protein in the liver should be between 64 - 83 & whilst I just scraped in at 64, there was bright sunshine.  I need however to continue to focus on this to get closer to the 83.  An “A” was always considered a better grade than a “C” on your report card right?

My iron level remained lower than what is considered ideal, so I needed to go ahead with the iron infusion which was previously called off due to my liver readings.  I again settled into the Victorian looking room with it's floral wallpaper.  Setting up the infusion took some time & again my veins were playing a game of hide & seek, so it took a few attempts to ensure that the drip was properly inserted.  The iron was then slowly infused for 3 minutes, whilst my pulse was being permanently monitored to ensure no immediate spike in heart rate.  Thankfully I had no complications so the remainder of the infusion could proceed as normal, all the time under the very watchful eye of the nurse. I used the time to attend to emails and chats, a rather difficult task with only the use of my less dominant hand to type. Apparently, this iron infusion will make me feel 20 again, although I would much prefer to look 20 again.  The irony is that the infusion can make you feel incredibly fatigued before making you feel energised & up until now, I still feel my age, definitely not less than half of it, however as long as it increases my iron levels to where they need to be, I can manage the fatigue.

One of the tests that are analysed with each of my bloodworks is thyroid.  The staff at Pathcare have asked me previously if I have a thyroid problem to which I have always said "no, not sure why this gets marked for testing".  I now have the answer.  The latest bloodworks suggest that my thyroid is burning out.  The BRaf treatment is known to cause this, so my thyroid will become overactive & then underactive in the coming months & I will need to regulate this with medication.  This is not serious as many people have to treat thyroid on a daily basis.

It was then time to review my scans.  I might have been a bit too enthusiastic & expressed that I was keen to see the results.  Dr Langenhoven looked at me whilst getting them up on the monitor & said “are you sure, you might find them upsetting". At that very moment, summer ended. Having not had a previous PET scan, there was nothing to compare the images to, so I found it quite difficult to comprehend what was being shown to me, but I could see plenty of highlighted areas.  I am a results driven person, I find seeing progress easier to believe that just being told there is progress.

That being said, my brain, heart, pancreas & kidneys remain clear. My liver, lungs, neck gland & spleen remain impacted. There was nothing mentioned or looking untoward in my stomach, which is where the biopsies were originally performed, so will double check this at my next consult. From the images, voiced over with commentary from the oncologist as well as the written report, it was not a pretty picture for me. These are not pictures that you can just delete & replace there & then with another snap from your camera phone, nor are there fancy filters, which can turn any bad picture into a great one. They say that a picture says a thousand words, sometimes though, they are not words you want to hear. I suddenly found myself in the middle of winter.  Largest readings: liver (39mm, previously the largest nodule was 47mm), lung (10mm), neck (9mm). I cannot say what I expected they would show, as truthfully, I was not sure what to expect. 

One of the things that the PET scan also checks is your bones, so I was saddened to learn that two nodules were detected in my sternum bone & one in my spine, which would have apparently been there all along, they are not new. At this stage my oncologist must have sensed I was feeling anything but enthused, so casually reminded me “you do know you would not have survived this a few months ago, you do realise that?”. Nothing from that sentence lofted my spirits. My bloods are showing her that my treatment is working & in the absence of a previous PET scan, she tried to assure me that whilst I do not feel that things look great, they definitely look better to what they would have back in June when my treatment started. Every nine weeks I will have a scan, so this one will be regarded as the baseline.  I look forward to summer returning to my life.

Another season that people look forward to is the Festive Season, which has become synonymous with giving & receiving.  I continue to be immensely grateful by the thoughtfulness of people who have given me flowers, pyjamas, snuggle socks, slippers & treats over the past few weeks.  Giving does not always need to be tangible & sometimes the intangible things are everlasting. Friends of ours have just returned from visiting their family abroad & their 8-year-old granddaughter asked if I am still sick & if I still have my long hair, to which her Gran said yes.  She then let her Gran know that the teacher had asked for prayer requests & she told her about Aunty Caroline, so this young class, many of the kids whom I am sure have no idea what a metastatic disease even is, prayed for me.  I was very overwhelmed by this kindness.  

People have given, I have received. As mentioned in my initial blog, I hope that my health journey blogs provide an element of hope & courage to family, friends, colleagues & strangers who may also be in a less favourite season of their life. I shared a Facebook post earlier today which speaks to what I have tried to achieve thus far & what I continue to aim to achieve.  It reads:  One day you will tell your story of how you've overcome what you're going through now, and it will become part of someone else's survival guide."  These blogs are my story.  

The past two weeks have rattled me somewhat.  This illness is a mind game. My mind has been in overdrive.  Days can be tough; others can be tougher & some have been the toughest.  No day is easy, but the small wins that I was celebrating have become consistent wins. I am still eating at a minimum 3 meals a day, working 5 full days a week, exercising 4 to 5 times a week & consults have gone from weekly to every 3 weeks. I won't give up.

Until next time, thank you for the ongoing support.  Remember to:

💟Be kind
💟Be grateful for what you have

💟Celebrate wins, even if they seem insignificant
💟Stay in control of a situation

💟Be prepared for a change in season

💜 Caroline X