“I cannot tell you not to be worried…”

I was watching the fourth season of Downton Abbey with my hubby tonight as we have this long standing tradition of watching a show every day at bedtime. We’ve gone through a good few series so let me know if you need any recommendations, but I digress. The phrase I’ve used above resonated with me during the episode tonight and I thought it would make for a good title for this post.

My ‘eventful’ few days started on Easter Sunday with a CT scan. Monday was a home visit from a nurse to drain some of the pleural fluid and I also had a routine dental appointment thrown in for ‘fun’. Tuesday was an Echo/ECG appointment with a slightly unprofessional/super chatty tech who felt the need to feel every silence with the scariest unconfirmed information he could come up with. I won’t even bore you with the details but thank God my cousin and friend were with me as they did a great job allaying my fears, I think I would have been a wreck otherwise – Thanks for being lifesavers ‘B’ and ‘J’ :). The afternoon involved another dental visit (hopefully the last for a while) and I got a blood work done ahead of my appointment with the oncologist. Wednesday entailed another home visit with more fluid drained and an impromptu trip to the dyspnea clinic as I needed to have a few stitches at the chest tube site due to hyper granulation of some tissue at the site. Painful much? You bet!. Thursday was the appointment with the oncologist and that deserves its own paragraph or two or three or more. And the week rounded off (kinda) with an appointment with my family doctor to discuss the issue of pain control control further. That was roughly my last week in summary, this health business looks like a full job to me if you’d ask me. I wouldn’t be so sad with the use of my time if my appointment on Thursday turned out differently.

Don’t get me wrong, I had an indication of what was to come at my appointment as I had been on the new treatment for 8 weeks and one thing was clear, the fluid that was been drained weekly wasn’t reducing. If anything, I felt like it was increasing and I was getting symptomatic a lot quicker than I used even though I was been drained almost 2.5L a week up from between 500cc and 750cc. I wasn’t sure if the perceived increase was due to the fact that we were only taking a couple of cups out of a big tank and the increased quantity was because we swapped the cup for a much bigger jug. That would suggest the quantity in the tank hadn’t changed significantly just the quantity and frequency of drainage had changed. Either way, I felt 8 weeks was a good enough time to feel some indication as to whether the treatment was working or not and all that fluid was filling me with a lot of confidence.

The other thing I really struggled with was pain, I won’t bore you again with the details but I’ve included the link to the page in case anyone missed the initial post. Understandably, I was worried regarding the way forward because even if the treatment was working great, I wasn’t sure how much longer I could live with the amount of pain I was dealing with. I hoped that if the treatment was working to a REASONABLE extent then maybe I could focus more of my energy on achieving a tolerable pain level where I could maintain some at least a decent quality of life moving forward.

What I did not expect to hear where actually all the things I heard except a million times worse:

  1. Treatment wasn’t working – AGAIN!!! That means no treatment has worked in more than 6 months. And 6 months in the life of a stage IV patient is way too much for cancer cells to be running riots and not conforming to treatment. My oncologist was concerned the cancer cells have become a lot more aggressive and I will be repeating a biopsy this week to check if anything has changed in the make-up of the cells as this has been known to happen. If anything has changed then he would assess if that opens more treatment options to us.
  2. As is to be expected with any aggressive disease, because treatment hasn’t been working there’s been a lot of progression. The pleural fluid is the most it has been and my left lung is completely collapsed. I learnt that this is likely to be irreversible and I have to get used to living with one lung. That is pretty depressing for an otherwise healthy 33 year who has never smoked a stick of cigarette in a life, but I digress again. With all that fluid on the left side, my organs are under a lot of pressure and my heart has been displaced to the middle of my chest somewhere or something along those lines; a point the chatty tech made over and over again about how he wasn’t sure I’ve got a heart – yeah, told you he was borderline unprofessional, he managed to locate the missing heart about 10-15 minutes into the appointment though so yay me! With the pressure from the fluid and the amount of pain I’ve been in, my resting heart rate is now at about 120 on average which officially makes me tachycardic, you can do a bit of reading up on it but it’s a scary condition to throw into the already muddled mix!
  3. The two pleural mets that were measuring 2cm each have now more than doubled to 5cm each. The oncologist thinks the increase in size contributed to some of the pain I’ve been having as the tumours were probably rubbing off against each other and against the inflammation on the edges of the lung.
  4. And to the scariest and hardest to take of all the news I received on Thursday. The cancer has progressed so much that it has made its way into a new organ – my poor liver has gone from been cancer free at my scan on January 15th to now housing a 7*8cm lesion. There’s no nice way to put this than to say this is pretty bad, the amount of growth in that short time is beyond scary and the liver is not a great place for breast cancer to metastasize to. Actually no organ is a great place for breast cancer to but the bone for instance is considerably more manageable than the liver. With every organ involvement, the prognosis goes from the statistical estimate of 33 months to even less.
  5. Talking about bone mets, my bone mets were stable. If only the cancer was concerned to my bones, I will be taking this as good news and would probably be on yacht celebrating – okay maybe not exactly but you get my drift. I am hoping for that day though, when the liver, pleural mets and pleural fluid all disappear and I only have to worry about my bones. I will go out on a limb here and pray for the day they ALL disappear but first things first, my liver and the pleural fluid and tumours dying off are my immediate concerns.

In terms of next steps, we obviously had to stop the Xeloda immediately and I started a new treatment the next day. I am on another chemo called “paclitaxel“, I’ve included a link for more info. This would be administered intravenously every Friday for the next 6 weeks. It’s usually a 3 week on/1 week off cycle but as you can agree, desperate times call for desperate measures so my oncologist suggested we go for 2*3 weeks back to back cycles and the CT scan in 6 weeks and hope to God that the treatment works!!!

I have been desperate for some good news or some sort of break for at least the last 6 months and I think I am at the point where I am demanding the break! I am exhausted, I am scared, I feel deflated, I have cried my eyes out but I could start again at the drop of a hat, I am worried, terrified and feeling a million emotions I can’t even put into words. I have never wanted to be alive so much; I have the best husband, daughter, family and friends which makes for an amazing life; why would I want to walk away from all that?!

Truth is, I feel like I still have so much in me to give, don’t get me started on how very little my daughter is. I need her to form her memories of me by growing up with me not by hearing from people about who I was and what I would have said in certain situations if I had been there. I want to be there, I want to be there for everything and the best chance I have, the only chance I have at getting my wish is for this treatment to work and for this cancer to be curtailed and curtailed fast! The last thing I have is the luxury of time, I thought I didn’t even it 6 months ago but I am even me constrained now 😦

The sentence that jumped out at me whilst watching Downton Abbey tonight was “I cannot tell you not to be worried, I can only pray you hang on to a bit of hope”. I know everyone means well but please don’t tell me how to feel. I love the acceptance and understanding summed up in that sentence and that would work just fine for me :).

If you are the praying type, please say a prayer for me that Paclitaxel (Taxol) is the ‘miracle’ drug that zaps all these crazy cancer cells. I am probably going to lose my hair (Oh and I forbid comments such as “it’s just hair and it will grow back”! Remember, it’s not my choice and I am unlikely to be loving it or embracing it anytime soon). I will probably also have a couple of not so fun side effects and I will be miserable with them but I will feel slightly better if the treatment works and if it means I get to spend more time with the people I love – that to me would make it all worth it.

Closing with a quote from Elizabeth Taylor, who would have thought?! 🙂



2 thoughts on ““I cannot tell you not to be worried…”

  1. I love the quote from Elizabeth Taylor! That’s just it. One day at a time one step at a time. We pray for great news in a couple of weeks. I haven’t and will not stop praying for this. I still believe in miracles!

    Liked by 1 person

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