The following email was sent on 14 December 2008 and had the subject line "Lynn's Anatomy: Of polka dots and liver spots."Hey everyone!
It's been a good few weeks since I wrote and told you about our wonderful gift of a trip to Disneyworld. We left Cape Town full of anticipation and with lots of prayers for me to feel well while we were away. And it is amazing, I felt great the whole time!
The only way to describe the whole Disney experience is MAGICAL. We were whisked away on fairytales, adventures and "dreams come true" - the Disney theme for the year. And for us it really was like a dream come true. It was an amazing holiday and even though we were only in the States for a week, it felt like much longer - in fact the time was just right. (You can read more about the Disney trip on Lynn's blog.)
Back to reality
After we got back we were due for a doctor's appointment and ultrasound scan to check out the gall dudes. The gall dudes were MIA and the duct a little "sludgy" still, but nothing the surgeon was worried about.
But the ultrasound also picked up another tumour on my spleen. I'm really working my way through the organs, aren't I? We saw Doc Wilson who told us he was leaving for New Zealand (I told him it was really cold there - he shouldn't go), and that I should try to go on the Interferon again - the immune boosting stuff with which you inject yourself.
I had been on the Interferon before the gall event and didn't have any bad side effects - I just got grumpy. Turns out it is the Interferon that made my INR (blood clotting thing) go completely screwy, but anyway, I started taking it and the next day felt so sick I didn't know what to do with myself. I was nauseous and feverish, and I went for a nap at 9.30 and woke up at 2. I persevered with this for more than a week, thinking I just had to get used to it and it would get better, but it sooooo was not getting better.
I phoned the doc and he suggested trying a slightly smaller dose. I did, but it made no difference so I decided to stop the treatment. Interferon is apparently well known for these horrible side effects. Why I didn't get them the first time I don't know, but boy, were they hideous.
In bed most days
Unfortunately, stopping the Interferon did not stop the sick feelings. I didn't feel as sleepy, but I was still very nauseous and feverish and the anti-nausea tabs I had were doing zilch. So for the next three weeks I was been in bed most days feeling terrible because every time I lifted my head off the pillow I felt like throwing up. The safest place was with my head down. Once again, I thought this was the Interferon working its way out of me and that things would get better, but that was not to be.
On Monday just gone I had a routine check up and got to meet my new oncologist, a very nice lady called Dr Jill Harris. She was familiar with my file and with my case, listened to my woes, checked my blood results and did an exam and told me that she didn't think it was the drug, but rather progression of the disease in the liver.
She scheduled me for a CT scan of my abdomen the next day (Tues). At this meeting she told me that after the interferon she had no more tricks up her sleeve (which we kinda knew from Doc Wilson).
You must prepare yourself
For the first time since this journey began I asked her for a prognosis and she said "poor". When I asked what that meant she said "you must prepare yourself and your family".
So on Tuesday we went for the scan. The doc had given me different anti-nausea meds to try which seemed to do the trick in the morning, but which were no match for the hideous barium stuff you have to drink before the scan - a whole litre of it. It was so horrible. But we had the scan, they actually managed to find a vein in my arm for the IV first time (hallelujah!) and it was all over rather quickly. On Wed I got a call from the doc saying she wanted to see us. so off we trundled once again.
Jill was very sweet and said she'd been thinking about me a lot since seeing me, and that the scan results were not good, in fact pretty dire.
A polka dot factory
The disease in my liver has spread dramatically and I have more new tumours in my lungs, chest (or mediastinal region to be exact - one of which is so big it's pressing against my one trachea making me cough like crazy when I talk too much or sit funny), and another newby behind my pancreas. She showed us the scan and where there were only 3 spots on my liver when we came back from Disney, it now looks like a polka dot factory with dots just about everywhere.
So she wasn't lying when she said there was a dramatic spread! Anyway, Jill is recommending a second line chemo which is pretty toxic - hair and nails fall out, nausea, vomiting, high risk of infection (you know how good I am at that) etc, and the upside seems really limited.
In a study of patients with metastatic melanoma who were given the treatment after other chemo had failed (like me not a good bunch to start with I know), 47% showed some sort of improvement (tumours reduced or stablised), but of those 47% the average life span of the patient after starting treatment was 7 months and the longest 14 months.
I'm not so sure this is a good idea. What's the point of trying to "buy extra time" if the time you have you just feel awful and your quality of life goes down the tubes?
Weeks, maybe a month or two
So then we asked the next hard question - when you said the prognosis was poor, how poor it poor? And then came the clanger - weeks, maybe into a month or two. Oh yay! I mean what can you really say?
Andre and I have chatted about it and decided not to go the chemo route - I just don't think it's worth it - but we're exploring some other options. One of which is that I've ordered these things called Glyco nutrients which apparently work at a cellular level and cancer patients have had good results.
A dude I spoke to yesterday had stage iv cancer (like me) and had tumours in his kidneys, liver and some other bits and he was given 8 months. He started taking them and 2 years later all but one of the tumours has disappeared. May be a little too late but going to give it a try. And then there's always Mexico.
The Mexican Connection
A friend of mine gave me this book to read a few weeks ago called Dismantling Cancer written by a doctor who runs this alternative cancer treatment centre in Mexico called the Oasis of Hope which has been going for 40 years.
In the book he explains all about their various treatments and therapies, and the science behind them. They have a very integrated, holistic philosophy - and have had some excellent results over the last 40 years. They use treatments like ozone therapy, high dose vitamin C, ultra violet therapy etc. You also go for counselling and have spiritual input and even laughter therapy. Their view is that your treatment should not make you feel worse than your illness.
Anyway, I'd contacted the hospital to find out more info beforehand and they'd set up a telecom for me with one of their oncologists on Monday night. I chatted to the dude and told him my story (which was the "only 3 tumours on my liver" version). He asked me lots of questions and then said that there were never any guarantees, but he thought there was a 50% chance of having a positive result if I was treated by them - due to my age, the fact that I was previously in excellent health and that the disease wasn't too widely spread in my organs.
So after the scan results on Wednesday I wondered if he would be as optimistic. I've mailed them the radiologist report, and asked him to review and let me know.
The treatment would mean that Andre and I have to go to Mexico for 12 days, back home for 2 months and then to Mexico again for another 12 days In-hospital treatment. It's a big thing to think about - not least of which because Mexico is so terribly far away! So we wait to hear from them and also just pray for guidance. In the meantime, I need to start researching other alternative treatment centres closer to home - maybe Europe? I haven't heard of anything in SA.
Feelings oh oh oh Feelings
So, I'm sure you're wondering how all of this makes us feel.
Well, naturally we're sad and a little taken aback that the prognosis is so dire. But we are genuinely doing very well, all things considered.
Not many people get the chance I have this last year to really take stock and start doing things differently. In fact I think I've probably had one of the best years of my life this last year being able to reconnect with so many people, refocus my priorities, spend so much time with the girls, go to a bible study for the first time, really FEEL THE LOVE from so many and just do things differently. The way I should have been doing things.
Andre and I particularly have also had the chance over this last year, to really say what we wanted to say to each other, and do what we wanted to do. And we've talked a LOT - about so many different things. In a way, preparing ourselves for this eventuality.
He said to me the other day that he was almost relieved that it was happening this way rather than being suddenly taken away in an accident or something like good friends of ours have lost their partners. We've had time to extra-cherish one another and the girls, and lots of our other relationships - with my folks and my sister in particular.
Telling the girls
We spoke to the girls on Wednesday night. Our wonderful counselor had told us we didn't need to spell it out for them so all we said was that I'd been to the doctor and things weren't looking good and that I wasn't getting better. I also told them that even though we'd been praying to God for healing and I wasn't getting better, God was still working a miracle (or two) and that he had healed my heart as there were things that I was very sad about that I'd done and God had taken that sadness away from me.
Courtney just hugged me as I cried and Cassi asked Andre what would happen when I die (that's my child... the direct one!). So Andre goes into this long explanation about heaven and Jesus and she looks at him funny and says, "no man, what's going to happen to us?". So once he'd assured her that he would still be around and there was a plan in place she was happy.
Courtney told me to close my eyes and then I heard her get her guitar out and start tuning it (this takes a while) - I'm not sure if she thought I also couldn't hear with my eyes closed. Anyway, then she told me to open my eyes and played me a little song that she's learned that I love. So caring and sweet.
Since then the two of them have been their normal little selves so we'll just be open and watch for any warning signs, but please continue to keep them in your prayers.
The one odd thing
The one odd thing is that my darling husband keeps asking me if I want to sky dive! I'm like: "no, why would I want to throw myself out of a plane and terrify myself witless?" Send me to a spa - don't shove me out of a plane, for goodness sake! But the good news is that there are only two things I want to really do now - write a book about life for my girls, and take them to a spa (it's a long held dream of Courtney's).
So that's my news. A bit of a clanger, I know. As always, I just thank you all for your love and support and ask you to keep us all in your prayers - especially Andre, the girls and my family.
Mom and Dad are being amazing as usual - mom fussing about like a real mother hen and continuing to spoil me rotten. Dad even worse, or should that be better - I'm not sure. But it's really very hard on them too.
As for my sister
As for my skin (as I affectionately refer to my sister, skin and blister), from a health perspective she is doing really exceptionally well. She is continuing her Herceptin treatments which are going well and not giving her any nasty side-effects, her hair is growing back with a vengeance and quite dark (in fact in danger of looking like she's wearing a busby as it's come back so thick), and her recent CT scans gave her the all clear.
Her little Lolly-Pop is growing so big and started talking and singing (can't wait to hear it myself), and she's apparently quite adamant that everyone joins in the merriment, shouting your name if you're not singing! Naturally Pen is sad at my news, but she's planning to come out in the new year which is great.
Not sure that I'll write again before next year so let me take this opportunity to wish you all a very blessed Christmas and a 2009 that is filled with abundant blessings. I pray that you are as richly blessed as I have been this year - I give God all the Glory and thanks.
Lots and lots of love
- (Lynn Ferreira, 14 December, 2008)
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15