Hospital – Day 4

Over the last few days, I’ve been put on some heavy drugs to manage the pain and although we think we’ve finally found a good combination of meds, plenty of the old stuff lingers in my system.  I’ve been in the hospital for four days, although I’m going home tonight, and it’s been a bit of a sleep-test-talk-canwegetyourvitalsignsagain whirlwind.

With a couple of wonderful moments.  Like crying with my mom blogger friends.  Like hugging my moms club friends goodnight.  Like relaxing and chatting late into the afternoon, and quiet hours with my husband as we waited for the next test – the next procedure – the time that it would take to see if the next meds to take effect.  Like listening to the earnest and sincere voices of the pain doctors spoken so highly (coincidentally) of in Susan McCorkindale’s new book, 500 Acres and No Place to Hide, and meeting oncology nurse after oncology nurse who really, sincerely, wanted to help.

At one point, I asked about the rules for visiting hours, as two friends were on their way to keep me company in the wait.  ”The hours are 9 to 9,” she said, “but they are not always enforced on this floor.”  Why? I asked, standing for the first time all morning, what floor is this?  Oncology, she said, with a sad smile, and she helped me unhook my IV for the short walk to the bathroom.

And so it was that I discovered that although I had been admitted to the hospital for serious pain in my left rib and back of my pelvis area, that I would stay longer for a more serious reason.

Oncology.  My PET/CT scan from Friday and the follow up x-ray on Monday did not show a broken rib.  They showed instead several dozen bad spots:  cancer in the spine, the ribs, the top of my legs, and other bones in my torso that could only be cancer eating away at my bones or areas of healing from cancer that had been there in the very recent past.  It was cancer, my oncologist said, and we would have to start treatment right away.

I didn’t understand at first, through my morphine-addled haze, but it was explained again to me later.  Cancer.  Several dozen spots, entwined through my spine and on my ribs and tops of my legs, that was causing me pain either directly (as in my neck and upper tush areas) or indirectly as the bones squashed the nerve roots coming out of the vertebrae, signaling a break that wasn’t there.  And the only treatment options were which kind of chemotherapy to start first.

There are 20 chemos to choose from, she said, and I was happy to hear that, but all of them require a port.

So yesterday, after a day and a half of waiting, I was taken to the interventional radiology room where they sliced open my upper chest with a 3 cm horizontal line, making a pocket in my soft tissue, and they inserted a port that could be used for future infusions instead of always poking me in the hand or wrist with an IV.  They laced the port’s tubing through my veins and dropped the end just inside or just above my heart, so that the chemical (the chemo-part of chemotherapy) would have a short, direct flight to my heart, where it would be pumped quickly throughout my body and sent on its mission to kill the cancer cells, in the tumors in my spine, in my ribs, in my back, and in other places to small to be seen on the PET/CT scan.

I will have chemo pumped into my port and thus, my body, every week for a while, with the third week off for good behaviour as long as it still works and I can tolerate the side effects.  I will have this chemo for as long as I can stand it and it makes a difference.  When it stops working – and it will – we will switch to another chemo, then another, then another.  Some will work and some will not. All of them are the product of nationally, federally funded research as well as research grants funded by private foundations or wealthy individuals.  All of them were discovered by men and women working hard to make a difference, and urged on in their work by the pink cheerleaders and thoughtful dissenters, all advocating for the end of cancer through more research, more learning, more clinical trials.  More light shed on this disease and its spread.  We must –

And you know that. You have heard this here and other places many times.

Earlier this year, it was Sarah who struggled on the changing chemos, who had to make the decisions and muddle through as they searched for an answer to her cancer.  Then, Judy.  Now it’s my turn for another go at it.  Every day, it’s mothers, wives, daughters, and friends fighting breast cancer and ever so many more types of cancer.  Cancer sucks.  Cancer kills.

Tonight I will be home, resting in my own bed, recovering from the chemo they gave me this morning through my lovely port as my husband and a friend kept me company in the tiny room, trying not to think about the many chemos to come, willing them to work even more than I dread their infusion.  I am as grateful for their existence as I hate the fact that they are needed.  But all of that is just talk.

What matters is that I get up and go to my chemotherapy each week, and that I show my family and friends and colleagues just how much I love and respect them in the meantime.  I think now’s the time for me to finish that book, too.  Procrastination just doesn’t make any sense anymore.

Hospital – Day 2

Is it only Day 2? It seems like Day 4 or 5 already, but my wristband does say yesterday, so it must be so.

After waiting all day without a drop to drink or bite to eat, as per presurgical instructions, I finally found out that they wouldn’t be able to take me for surgery today to insert my port after all.  A full day of scheduled procedures + an emergency added to the schedule at the last minute meant that they just woudn’t get to me today.  So at 3:15 I was able to eat breakfast and have my morning Diet Coke.

The nurses finally found me another room too – I woke at 6 a.m. to the sound of banging on the walls and power drills shortly thereafter, as the hospital pit crew deconstructed the room next to me. I don’t know what they were doing exactly, but the door was covered with layers of plastic sheeting and even the nurses weren’t to knock.  I’m happy to be moved down the hall, even if it did mean lying on the couch in the family waiting room most of the day, until they were able to find me a bed in another room.

Not much is happening around here.  I’ve spent hours curled up in terrible pain as the meds wear off, hours sleeping off the meds, and some not insignificant period of time just sitting here with my laptop, playing City of Wonder (an online multiplayer civilization building game – I’m in Cat guild if you’re a gamer looking to check it out) and trying to ignore the beeping IVs down the hall.  The one next to me is quiet, softly pumping saltwater into my hand, keeping me hydrated while I wait, again, for the port to be put in and the oncologist appointment that has been apparently moved to tomorrow.

The medications are diluting the pain and every 2 hours I feel pretty decent.  I have a pain team, working from pallative care, an oncology team ready to spring into action when the pain is managed, and a great set of nurses.

And friends. I see you here and on twitter, and thank you, as always, for your steadfast support and love.  I am trying to get back to normal, to write stories, to contribute again, and to make a poster for next week’s meeting of the Astronomical Society of the Pacific (about social media as e-mentoring!).  I haven’t worked in a week, though, and shan’t tomorrow.  Now is a time of rest.

Of rest.

- Susan

Hospital

Admitted to hospital for better pain management. Nurses couldn’t get an IV in (chemotherapy shrinks the veins) and my blood pressure rises to 181/110 when I stand. So tomorrow morning, they will place a port in my upper chest so that IV access is just a stick away.

They’ve upped my pain meds to oxycontin + dilauded. Tomorrow I’ll have x-rays to see if anything’s broken and meet with my oncologist to decide on a plan for what to do about the spots of cancer they saw in the scan. I don’t know how many or how much – there’s time for that tomorrow.

Tonight I rest and thank God for the friends and family who watched my kids today and those who surprised me with a visit already. Tomorrow morning I have the surgery I’ve dreaded for four years (probably needlessly) and emerge with essentially a small pincushion hooked into my artery. This will make treatments easier. It will make hydration and blood draws easier. But tonight, it doesn’t feel very easy at all.

Please pray with me for healing.

Susan

Pain control

They’ve put me on morphine round the clock for the pain.  It suppresses the pain but puts me straight to sleep. Which is fine. Lots and lots of sleep this weekend.

They doubled the morphine yesterday.  It helps but it’s not enough.  Particularly since it makes me vomit.  A lovely side effect.

My appointment is the end of the week and we’ll clearly change treatments based on what our oncologist recommends after she sees the results of the scan.  There’s so much pain in my ribs, it’s clearly not nothing.  It would be lovely if it were only a cracked rib, though, instead of effects of spreading cancer.

This week we are praying that my oncologist chooses the right treatment and that it is effective.  Quickly.