Stopping chemo, kidney distress and nephrostomy tubes

5:30am Tuesday Aug 9, I sit drinking a glass of milk and my fingers are poised over my keyboard.  I am ready to share, to reach out.  It's been a long time coming, this moment of openness.  A lot has changed, a lot has happened.  For starters I am drinking milk instead of coffee :) My sister reminded me yesterday of the importance of writing, any kind of writing, of how good it is for the soul.  I have always loved writing in this blog, feeling as if I am sitting with a good friend, a friend who is listening with an open mind and heart, where I am safe to just let the words flow out.

The events of the last 3 months brought some firsts, this biggest being that for the first time I felt maybe this was the moment I needed to give up fighting, and let this disease run its final leg.  Doctors are honest, for which I am grateful, and this time they were not promising this would all get better. They were saying we would try.  But no promises of success could be given.  I suppose all of life is like that really - no sure odds of anything.  Aside from the physical challenges lately, I have also tread a path of much doubt, and at times much sadness and anger.  I am blessed though as my family stuck tight, supporting me but also having to tread their own paths in this cancer journey...that's it right there, we all have our own path but they are all in the same forest.  They never forced, they just walked beside me.  I now feel the hope burning brighter in me, a gratitude for the moment I am in right now, the peace of knowing who and what I can be now is enough.  There is much love, much grace and that makes it all okay.

I guess I should try to start at the beginning....this is going to be a long blog....get comfortable :)

I left off at trying a new course of chemo combo of Gemcitabine and Docetaxel.  After 2 cycles we did a CT scan and it showed continued progression of disease.  AKA not working, no sense taking it.  So we stopped.  Next step was to continue to fight for approval to use a newly FDA approved drug called Eribulin (also called Haloven) http://www.medscape.com/viewarticle/846261.  This drug is approved for protocol (meaning the hospital will pay for it) but only for breast cancer and not yet for Sarcoma, even though it has the FDA approval.  Applications were made to the drug maker Eisai for a compassionate use grant.  I also applied to Manulife, our work place benefits company, but they were awful - taking 6 weeks to even reply to the request and then stating no they would not cover the drug cost as it was considered "experimental" even though it has been through the required clinical trails, is FDA approved and being used already in countries such as the UK and USA (just a small side rant there).

While my medical team was advocating for the compassionate grant, my body got into some other problems.  I started running fevers (about 38) in the afternoon and the day in July that I realized the house was 85 and I was lying in bed under a down comforter I made a call to my doctors most amazing, awesome secretary Cat and she immediately tracked down a doctor to share my concern with.  The word back was go to emergency.  We have learned there is no sense going to Belleville emergency, they will leave me waiting for a minimum 6 hours without even giving me fluids or pain medication, then I will see a doctor, maybe do a test, they consult Kingston and end up sending me there.  So straight to Kingston emergency Mike and I went, July 5.  At this time I had a fever, felt cold despite the heat and had a lot of back pain.  It was late evening when we arrived, and after a hour in the waiting room (which I thought was pretty fair) I was taken into emergency and a doctor actually followed me into the exam room.  They were excellent.  I was assessed right away, given pain medication for the back pain which honestly was as painful as labour back pain (had me rocking back and forth, doing that low throat moan I do when something really hurts) and made comfortable.  Tests were run, fluids given and everything settled down.  About midnight emerg team said I could go and I was honestly feeling better.  We had an appointment in Ottawa Hospital that day so we left emerg and went on our way, and this seemed all okay.  The trip to Ottawa was fine, although I did keep taking Tylenol 1's for the back pain.  When I got home that evening about 7pm a call came from a doctor in Kingston emerg - my blood culture tests were showing bacteria growth and infection was suspected.  I needed to return to emerg for IV antibiotics, as soon as possible please.  Brenda volunteered to take me and off we went, arriving about 10pm to Kingston emerg, July 6.  After a reasonable wait time we were taking into the emerg treatment area, I got a bed and Brenda got an uncomfortable chair which I am sad to say she spent the entire night in :(  IV antibiotics were started and my pain was brought under control.  The urology team was called to look into my case, a CT scan was done and it was determined my kidneys were swollen and showing signs of acute distress, especially the right kidney.  Tumors are pressing on the ureter, which drains the kidneys to the bladder, so my kidney was basically backing up with waste.  I was admitted to hospital with the intention to have a drain tube put into the kidney - this is called a nephrostomy tube https://en.wikipedia.org/wiki/Nephrostomy.  The procedure went well, I was nervous it would be painful (as the last drain tubes I had were) but it was not difficult (it was quick, and the team in Kingston x-ray were excellent).  I stayed in hospital 2 nights, receiving antibiotics and fluids. I felt ready to go and was discharged.  I was home for about 24 hours before the pain, chills and fever returned.  Once again, back down the road in the evening to Kingston emergency, this time with Mike and Tanner.  Diagnosis - the left kidney was now swollen and in distress.  Treatment - needs a drain, a nephrostomy tube.  Again, admitted to hospital, the procedure done and I returned home the next day.  At this point I was wore out.  I slept a lot, found it very hard to eat and really felt done in.  I was discharged as I was stable in all my stats and really they had done all they could for me.  It was now up to my body to recover to whatever capacity it could.

I spent the next 8 days in recovery mode at home, resting and trying to eat and drink lots of fluids.  But every afternoon I would develop a fever, and I generally did not feel well.  By the weekend, I was getting dizzy and short of breath just trying to walk from the bedroom to bathroom.  I really did not want to return to emerg, but instead waiting til Monday morning so I could talk to the oncology team at KGH.  I called in the morning and by afternoon had been advised to return to oncology for fluids.  I arrived about 4pm, July 18 and actually was weak enough to request a wheelchair instead of walking myself around the hospital.  I had severe low blood pressure and a high heart rate.  Conculsion - I was severely dehydrated showing acute kidney injury.  IV hydration was started immediately and brought relief within an hour.  I was admitted to hospital again and further tests were run to check for any further complications in my abdomen.  I was grateful for the thoroughness of the medical team.  And ultrasound revealed left renal vein thrombus (blood clot in kidney) for which I was started on blood thinners (so now I give myself a needle each evening).   My the next day I was up and walking, feeling stronger and went home July 20.

The next 2 weeks were tough, maybe the toughest I have been through yet I think.  I was not just low energy, I was completely depleted feeling.  I really just spent my time lying down, even holding my head up seemed to hard.  I now have 2 drain tubes in my back, which lead to bags that hold my urine - pretty classy I must say.  Remember I also have an ostomy bag at the front.  It was at this point I started to feel unsure I would get back to anything more than being a lump on the couch.  My family stuck by, remaining patient and compassionate, did everything needed around me and for me, and we let time take it's course.  Besides feeling 100% exhausted I struggled to eat, I think my body struggled to adjust to the tubes in my back, and even a short walk left me breathless and feeling as if I would simple collapse.  I recall now that I read once someone say that in some moments, all you can do is focus on taking the next breath.  I hope I did that.  I hope I held onto the moment I was in, but it's kind of a hazy time now in my mind.

I do have a vivid memory of something that happened in that recovery time though.  It was the weekend, and Paula and Derek came over to make it an afternoon of our family hanging out here at the house.  I was not even able to hold baby Isla - I simply laid on the couch.  But what I saw brought such joy to my heart.  I watched my kids - Paula, Derek, Kaitlyn and Tanner sit together at the kitchen table and spend hours playing games - laughing, chatting and loving each other.  And I watched my husband sit in the rocking chair, a granddaughter in each arm, just basking in the moment.  Oh, such joy in my heart!  It made me feel their lives, all the most important things to me, were in such a good place.  They are a closely connected family, with so much love present.  Joy, peace, happiness were all feelings I soaked in that afternoon.

With time can come healing, and this morning an hour has passed since I started writing and my household will wake up. I can honestly tell you I feel so much different.  I feel strength returning to my body, heart and mind.  Physically I see improvements.  I know I have more time still, that despite all the things going on inside my body I have more time here still.  I am future dreaming again, planning the time when I put my horse in our barn and care for him every day.  I cooked a meal for my family Sunday.  I did the laundry yesterday.  Sure, there are new limits but today I feel I can live well within them.

The drug company has given approval for the compassionate use of Eribulin, and as soon as I feel ready, the doctors are ready to give me treatment.  I feel the time when I say yes to that is approaching soon.  Yes, I am nervous, nervous how my body will react but I also feel it is something I can do.  My sister, who is the person who took the steps needed to get me started on this blog (my sister is the best at pushing me outside my comfort zone) is watching I stick with writing (I do love it and it's amazing therapy for me) I am sure I will be more on time with a blog to let you know how Eribulin goes for me.

I think of the people who read my blog, thing of you as comrades and friends, all of us sharing our journeys.  I appreciate you.  You touch me and lift me up, you help to give this cancer journey purpose and I am grateful.  Thank you for walking with me.

There is a song I just love right now, it inspires me to keep going.  It is Move by Toby Mac.
lyrics can be found at http://www.azlyrics.com/lyrics/tobymac/movekeepwalkin.html
you tube is at https://www.youtube.com/watch?v=MX1G71WK-FA
my favourite part is......

I know your heart been broke again 
I know your prayers ain’t been answered yet 
it ain’t over yet, ain’t over yet so 

Move, keep walkin’ soldier keep movin’ on 
Move, keep walkin’ until the mornin’ comes 
Move, keep walkin’ soldier keep movin’ on 
And lift your head, it ain’t over yet, ain’t over yet..

with much love and Gods grace,
Teresa