Steroid free me

I have been steroid free for 2 months now. Yay!!! The best part is all the water weight is gone so my face no longer hurts every time it moves. Such a wonderful thing!

My last chemo was on March 28th. My last dose of steroid was March 29th. For the next 5 days things were okay and then I get the official smackdown of steroid withdrawal. Not a pretty experience. My energy completely disappeared along with my appetite which was hit or miss to start with due to my dysfunctional taste buds. And then I started getting nausea so I was not a happy camper. I almost cracked on day 3 but I was so keen to get off the steroids I sucked it up. On day 4 there was a vague sense that the worst was over and by day 6 there was definite improvement.

To celebrate the end of chemo and our 10th wedding anniversary, Ian and I went down to Ixtapa, Mexico the last week of April. This was my view while I sat on the beach in the shade had some nice person bring me drinks…..

We did make it in to the nearby town, Zihuatanejo, on the Sunday evening for a small festival and it would be neat to visit the area again.

I have had some fun while flying this year. Between my trip to Winnipeg and my trip to Mexico I have been “randomly” selected 3 out of 4 times through security for further screening and swabbing for drugs or explosives. I figure it is because I have looked so obviously like a cancer patient security is hoping for a positive test for pot to get to their quotas. Too bad for them I’m negative.  And I always have a giggle at their looks off shock when I pull off my tuque and flash my bald head.  Gotta do what I can to entertain myself 😀

Since we have returned from Mexico my energy has been returning pretty quickly. I suspect my bone marrow has returned to full function and the red blood cells are back in circulation.  I have also been doing a little gardening. We have been over run with kale, which I normally love but my taste buds have completely rebelled against it. And we have been picking our own cucumbers for a couple weeks now.
I have so far failed at my attempts for cabbage and cauliflower but I will keep on trying. And there are tomatoes and watermelons that have started. And the potatoes and onions look super healthy. And there are carrots and lettuce but I don’t see much activity in the parsnips. I guess I will try those again too.
Oh, and zucchini, that may be out of control.

I was going to stop my post here but I realised I hadn’t actually covered any of the cancer stuff other than chemo ending and getting off the steroids. With the end of chemo the big question is whether I should back on the anti estrogen treatments I was on before. My oncologist discussed my case with the tumour group again and the end result was pretty much a 50/50 split on hormone treatment.
The original cancer was estrogen receptor positive but the cancer cells in my right axilla lymph nodes last year were estrogen receptor negative. The status of the tumour at the base of my skull and the lesion in my right rib aren’t known. The original ER+ tumours were knocked down by my first run through chemo plus the Herceptin and hormone therapy I had been on.  The indecision is based on whether the Herceptin and Pertuzumab I am now on is sufficient to continue to keep the ER+ tumours knocked down.  Not knowing the status of my skull and rib spots further complicates matters.
It turns out the Cancer Agency in Vancouver is currently running a study using a new form of PET scan. A regular PET uses a form of glucose attached to a radioactive tracer to identify any cancerous areas. The PET under study uses an estrogen molecule attached to a radioactive tracer. This PET, in theory, will identify ER+ spots.
I spent a few action packed days in Vancouver getting my scans done. First was the estrogen scan and 2 days later was the regular PET.
The 2 scans were then compared and it was determined that all of the currently active cancer is ER-. In theory that indicates that hormone therapy isn’t necessary but as a part of the study I have to go back on the hormone therapy anyway.
I was of mixed opinion about going back on the hormone therapy. I would have liked a break from all the hot flashes but I also wonder if the ER+ cancer needed the hormone therapy to stay away. Makes the decision easy when there is no decision and I just have to go back on the therapy.
The disturbing bit about regular the PET scan was that lymph nodes in both my neck and in the area under my sternum lit up. This was totally unexpected as a CT scan had been done only a month before and there was no sign of any new activity.  Based on the PET scan results I am going to be more closely monitored for the next little while. That means I have a brain MRI, abdominal CT, and repeat PET scans all scheduled for July.
I also had a repeat ultrasound on my right arm to check on the blood clot. Something good there, no sign of clot now so only 2 more weeks of anticoagulant injections and I am done. My abdomen is very excited to not be poked on a daily basis.
Now I think I have covered everything……

Well almost. The May long weekend turned out to be a different health adventure. Jasper stopped eating and then started showing signs of liver failure. On the Monday Ian  and I took him out to Whiffen Spit in Sooke for what we were thinking might be our last family adventure………

I called the vet 1st thing Tuesday morning and they got Jasper in right away. Talk of liver failure will do that. The vet was nice and calm and collected some blood and trimmed his nails. The plan was to get Jasper in for an abdominal ultrasound the next day to see if there was anything visibly wrong with his liver.
To prep for the ultrasound Jasper could have no food or water after midnight so at about 11:50 I made him drink some water and I thought I would try to give him a few kibbles even though he still wasn’t eating. Being a brat he immediately ate the kibble so I have him a few more and Jasper ate those so I gave him more and he ate that. So I gave him about half a cup more and he gobbled it down. Figures the night before the expensive test his appetite starts coming back.
The ultrasound diagnosed a sludgy gall bladder. It is unknown if that was a blockage that cleared and the blockage had caused a build up of sludge or if his gall bladder just isn’t draining properly but it means more pills to go with the ones he is already on for his Addison’s. And we are cutting some fat out of Jasper’s diet so no more butter to make the pills go down easier. Poor guy.

And now I am really done. Have a lovely weekend!!

3 thoughts on “Steroid free me

  1. Yay for you! But, more about you flashing and giggling at airport security: you're a bit vague about whether you flashed yourself before or after you were asked. Hmmm? You're so proactive, so before is imaginable!


  2. Thanks for the update! Sounds like you are as busy as ever, maybe you need a nice person to bring you a beverage while Ian is at work………especially after gardening…..well anytime really! xxoo Suz


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