Tuesday I had my consult with Kirk Morris about the results of the tests done on Friday. Tim arrived just in time after parking the car back at the unit and running back to the hospital. Kirk rubbed his hands together, frowned, cleared his throat and I thought that perhaps it was all bad news.
He began by showing us the original scan when I was first diagnosed and Friday’s scan to compare the difference. In the first one my larynx and trachea were almost crushed by Heffy and were tiny black dots on the screen. No wonder I could hardly breathe and why my voice is still shaky and horrid. The invasive cells surrounded the area completely, even though the outward lump indicated it was mainly on the right side of my neck, it was everywhere. Rather scary to see and we can understand why Kirk opted for the more powerful chemo treatment of Epoch over the R Chop which is the norm for this disease. Thank goodness he did, because it’s working wonders.
The masses of cells that were situated around my body in the stomach, lungs, and of course my neck have either diminished drastically or gone completely. The bone marrow biopsy showed the cells in my hip bone have gone and hopefully will not return. There are still a few cells here and there, especially in my neck, but by the 6th course of chemo (I’m on the 4th as I write this) it is hoped they will be gone also. If this is the case we will be able to return home at last with visits back to Brisbane for on-going checks. Kirk feels a 7th and 8th course probably won’t be needed and neither will the maintenance chemo be necessary as long as checks are done every fortnight at first, extending the time between checks and tests slowly over the next 2 – 3 years. This is the most likely time for relapse to occur he says. I still have PET scan to have done in the next few weeks. Maybe later in August. That will show a clearer picture of the neck area and whether Heffy has been sent packing totally or not.
My fourth course of chemo was hooked up after seeing Kirk. Firstly though the LP had to be done. This is going to be the procedure for every new course apparently. James has been moved to another area and this tiny thin Asian girl came in, called Annie saying she was the new registrar and would be attempting to do the LP. She hadn’t done many she said so she would need to feel my spine and draw on it for some time first. Her hands were like ice. After about 45 mins of the feeling, pressing and drawing, her hands warmed up from my back, she then decided to have a try. Sedation was administered thank goodness, but it didn’t last long enough because she couldn’t find the spot. When I groaned due a particularly painful digging in the area, she decided to give up and go get Sam.
Sam seems to be the ‘go-to’ doctor when it comes to young registrars not able to access the lumbar area for the serum required. He told me he didn’t want to become this go-to person as he thinks the registrars need to learn to get it right. I agree especially when it’s my bloody spine they are fooling around with. More sedation which meant a darned nice snooze, and finally it was all done.
I had to stay flat on my back for 2 hours….during this time I had to take 6 steroid tablets with my orange juice I brought with me, via a straw. Not an easy thing to do lying flat on your back believe me, but I did it. So proud of my efforts I decided to have a cup of tea the same way….I have not had hot tea through a straw before but it tasted good anyway!
Eric and Oscar are back with me for the week, and Oscar has to be refilled each day. Eric is the quiet achiever and just plugs away peacefully, whereas Oscar had to be the centre of attention yesterday and started beeping at me about air in the lines….of course he had air…there was nothing left in his bag because the nurses got the timing wrong ….again. They are excellent at everything else they do, but math does not seem to be there skill set. One nurse, Carmen gets it right though but she is not always available. Ingrid and Sinead are pretty savvy with the math too.
I’ve just been at the hospital for another top up of Oscar. Both boys finish on Saturday as usual, but I am hoping they get the timing right on Friday so we don’t have a repeat of the double trip like the end of the last course.
It is becoming later every day. Tomorrow for instance I have my blood test at 8.45am, then the consult with Kirk at 10.40am, then an appointment with the very disorganised accommodation person Robyn at 11.30am, then back for Oscar’s top up at 1.30pm. Crazy times. The 2 nurses today struggled to work out that time for him so I suggested a little cheekily that they get my favourite Irish nurse Sinead to check it out for them. She is clever at working out the math….as good as Carmen is who had a day off today.
To say Tim and I are happy with the current results is an understatement. We are deliriously happy and looking forward to a better time in the not too distant future. I just can’t wait to get back to my veranda where I would like to have a sun lounge or day bed to lie on with my dogs at my feet…they aren’t allowed to get too close for some time the doc says….so I can rest in fresh air and not in the bed all the time.
or perhaps something like this……
What do you think? There will be cushions….lots and lots of cushions the size of big pillows to rest my head on and support my back when I’m sitting up reading. I intend to catch up on my reading…surely I will be able to concentrate on a book by then.
Talking of books, I have finished my book on The Aviators which I thoroughly enjoyed. I felt a bit like this for a while….
then the mail arrived and in it were a few books….my daughter sent me a book about Kick Kennedy because I love anything about the Kennedy family. The new Liane Moriarty book arrived Big Little Lies, and Liz Bryski’s new book The Woman Next Door as well. I am spoiled for choice which would be a problem if I could concentrate on any of the pages at all. It will come eventually. I just have to be patient and wait for it to happen.
This week so far has been okay for me energy wise and appetite is good. By the time I inject myself on Sunday night, I will no doubt fall pretty flat again by Monday and won’t want to do anything much other than sleep and lay about like a big sloth. This will last again until the injections stop or they transfuse me on Thursday or Friday….whichever is done first Kirk says.
Today one of my nurses Bryden and I were discussing changes in patients’ looks, demeanour, moods etc when on chemo. I haven’t had a change in the latter two, but looks have drastically changed. My face is not my face. As I said to Tim this morning when I look in the mirror with my bald head, which I don’t mind by the way, I look like a shiny headed gnome with no eyebrows, very faint eyelashes and not much of my old character. Bryden asked if I had a photo of the old me so I showed her my profile photo (the most recent) on my author page. She could not disguise her amazement at the difference. This is why I refuse to have my photo taken right now….it’s not nice. Vain maybe, but I do have personal pride. One day I might look something like this again…..
The discussion turned to tatts and the case of the young girl refused a place with the Qantas and Emirate airlines because of her tatt the size of a 10 cent piece on her ankle of an anchor. Bryden is young …she hates them too which renewed my faith in the young to a degree.
She told me of a young patient who complained bitterly about her PICC line being inserted on her tattooed sleeve and of the various cannulas she had to have inserted on her arms for other requirements where she had a mish mash of tatts also. The insertion of the lines and needles apparently was messing with the ‘art work’s outlines’….the doctor attending her at the time with the nurses was sharp with her and told her to suck it up and be thankful the ink didn’t poison her. I like his style.
I must mention I caught up with Sharleen last week….she has been in hospital again for a short stay as she keeps getting fevers. Yesterday I saw her walking through the chemo ward alone which is unusual…she normally has her father or sister in law with her….and she was heading home. At least she was walking unaided this time, but still not looking great. She was too far away for me to call out to her and as her eyesight is not good because of the tumour they removed, she wouldn’t be able to see me even if she had heard me. I do hope she progresses in the positive way from now on.
Yesterday I learned a friend and former work colleague of mine has been diagnosed with a rare form of cancer…she is young with a child. From memory she is/was a smoker and this may have contributed…who knows? I wish her well and hope she can stay positive and upbeat through the ordeal she is about to experience on chemo and possibly radiation. It’s a hard journey…I call it a trek as it’s a bit like doing an internal Kokoda Trail every day! Please send out the good vibes to my friend Arleta….every little thought and vibe helps.
In the meantime, I shall persevere with my Eric and Oscar until Saturday, and will be more than prepared for my down week next week. Take care my good friends and thank you once again for being so loyal and supportive. I truly appreciate it and feel I would not be where I am today had I not had that love and encouragement from each of you all this time. As I said before every thought and vibe, every encouragement and message of support helps immensely. Thank you.
Much love and big hugs for each and every one of you. xxxxx