Riding The Emotional Rollercoaster

I was expecting to write this story with the title something like. “Well that’s not good news” or “Trial fails to meet expectations.” However, in a major unexpected twist it didn’t turn out like that at all. Call me paranoid or delusional but I had convinced myself that after what appeared to be initial success with the lump on my shoulder shrinking. That not only had it started to regrow but also that another lump had appeared behind it. Initially I wasn’t really sure but slowly over a couple of days I managed to do a good job of convincing myself.

Not wanting to appear paranoid but at the same time weary of holding back information from Sarah, it took me a couple of days to show her. The first day she agreed with me that there was something there. On the second day with another viewing she decided that it was my imagination and there was nothing there. We both knew that I was having a PET scan the following day with the results the following Monday so we would know for sure then. I also imagined that I could see a couple of other smaller lumps but I wasn’t 100% sure about these. These other smaller imaginary lumps I didn’t show Sarah or the doctor.

In the meantime it’s really hard when you think you have seen something not to unsee it. Over the last 19 months I have watched Fred/Frieda wax and wane then regrow during chemo so the thought of another lump appearing wasn’t a total surprise to me. I hate to admit it but I found myself checking my shoulder almost every time I was in front of a mirror. As if I expected it to either become more prominent or disappear altogether. Whichever it was by Monday of the doctors visit I was convinced that the PET scan results would show this new lump.

Sarah had come with me to see the Haematologist this time. Although she was still convinced there was no lump there she wanted to support me through the visit “just in case.” Our appointment was for 8.30am and since I had, had my PET scan Friday it was almost unsurprising when the first words from the Haematologist where that the scan hadn’t been reported yet. Apparently staffing shortages at the clinic where the scan was conducted had led to this situation. The Haematologist was hoping to get a verbal report but that hadn’t been done either by the time I saw her.

So the visit continued along the lines as it would had we not been expecting scan results. We discussed how things were progressing with the trial and my lumps and bumps. At this point I mentioned my concerns around the “new lump” a quick examination confirmed my fears with the Haematologist also convinced that this was a new lump. Since there wasn’t a scan to refer too the discussion moved onto the topic of the trial and where to from here.

I was really concerned that if the disease was shown to have progressed that: Firstly, it wasn’t working and Secondly that I would be removed from the trial. Since chemotherapy is no longer effective on my lymphoma there are very few plan C’s left. The Haematologist also appeared concerned that I would join the only other person in New Zealand to have been on this trial who also suffered disease progression and been removed from the trial. Following the visit with the Haematologist I went down to the cancer trial centre for blood tests in advance of the hoped for infusion the following day.

Around 10am I received a text from the Haematologist asking if I was still in the hospital to which I replied that I was back home at that point. It’s wonderful living so close when you visit so regularly. It to over 30 minutes for her to answer this text telling me she would phone around 12 noon. Probably one of the longest two hours I have ever had to endure waiting for her to call me. All sorts of terrible scenarios were playing out in my head so when the phone finally did ring around 12.30 I was almost too nervous to answer it.

So it was a major surprise when she started explaining that although she had only a verbal report, she had also looked at the PET scan pictures herself. These showed that the level of activity in my neck was basically down to zero. A monumental change from my previous PET scan where the standardised uptake value was around 25 with the normal being 2.5 to 3. She explained to me that the lumps that remain are in her words the scaffolding with the internal structure almost gone. This also explains why the lumps in my neck which were hard and sometimes painful where now soft and pain free.

The only real area of concern left in that scan was the osseous sclerosis (a bone tumour) in my upper left rib that has increased in size. Although the uptake score there has reduced from 9.4 to 4.6, still above normal but a good reduction. I am hopeful that the next few rounds of the trial will work their magic here.

So Monday will probably live in my memory for a very long time as one of the biggest emotional roller coaster rides I have been on in a while. Tuesday morning I was in for round three of the Glofitamab trial at the cancer trial centre with all the nurses congratulating me on the good news. I am scheduled to have another PET scan just before round six and certainly don’t want to go through this a second time.

Published by licencedtoretire

Retired, or at least for now

2 thoughts on “Riding The Emotional Rollercoaster

  1. Hi John, Plan C, by my reckoning you must be out to about Plan J. One hell of a rollercoaster for you for sure. As you say Numbers are great but they are certainly progressing in the correct direction.


  2. Hi John – this is the first blog I’ve seen that deals with the double expressor. I have recently been diagnosed with this as well. DLBCL with DE. Still waiting to get in to see my oncologist, and because of that delay, it’s hard not to do your own research. I would like to be able to correspond with you privately, if that’s OK with you.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: