It's a creekmore world

‘We have to get Jodi to give us her beach house.  I have to get to the ocean.’  are Trish’s first words after finding out her cancer has spread internally.   It’s not what I expected her to say at all.

It annoys me for a moment.  But it has some context.  She has been asking to get to the ocean a lot recently.    The ocean comforts her.  And she needs comfort.

The ocean isn’t on my mind right now.  The report from the CT and bone scan is in our hands and it’s far from what we were hoping.  The results show that nickle sized nodules are now detectable in the pancreas (2) the left adrenal gland (2) and one on her sacrum/hip.  The fucker cancer is spreading again.

We aren’t even discussing treatment yet, except that we know it will include chemotherapy.  The oncologist is focusing on Trish’s massive hip and back pain, and the loss of sensation in her legs.

Dr. Hendricks goes out of the room to get insurance approval for new MRI scans of her back that she will need.  The risk is that cancer is putting pressure on Trish’s spinal cord and risking paralysis.

Trish stands up. Paces.  He back hurts so badly she can’t even sit down.  Her lip quivers and she moans a tear.  I get up to hold her and say ‘It’s okay.’ But it isn’t.  It isn’t okay.

I’ve written this a hundred times before, but never has it felt more scary to think about what is happening to my wife and mother of our daughters.  It’s spreading.  It’s not okay.

Hip Pain on Safari

I haven’t gotten all the trip reports out yet form Africa, but if you were following, you know that she was suffering from back pain on the trip.    Trish has a back with metal rods from an old car accident, and any kind of extended travel – walking, hiking, riding in a car, airplanes – aggrivate her back.

She has always put up with a lot of  back pain on the trip, so when she cried one day in Arusha, Tanzania as we were departing for the Serengeti week of safari, I knew something was really wrong.   They weren’t just tears of pain, there was anxiety and fear.  There was something different.

Being in a rumbly, bone rattling, jeep for 6-12 hours a day is not comfortable.  Despite the unusual tears, we both thought there was a  bad misalignment of her spine.  She sees a chiropractor regularly.

That wouldn’t explain the other weird symptoms though – constipation, dizziness, fatigue, numbness in her feet and legs and even some fever.   Strangest of all was an intense thirst.  She was drinking about 3-4 liters of fluid a day (and having the get out of the jeep to pee constantly, which we teased her about).

We hypothesized that the other symptoms were from an alergic reaction to the Malarone, an anti-malaria medicine we all took. (Probably unnecessarily but that’s another story) Malarone has a whole bunch of side effects and would neatly have explained the other symptoms except that she’s taken it before without those effects.

As the safari’s continued, the pain got worse and both Trish and I thought separately that it was possibly cancer related.  But we didn’t say anything to each other.  It was better to leave that unsaid on the trip.

Return from Safari

All that was even ‘tolerable’.  Trish got through it.  What happened on the 16 hour plane ride back from Johannesburg to the US we were unprepared for.  She didn’t sleep the entire way (except for an hour when she slept on the floor of the plane.) because of intense back pain.

Worse, there was something we’ve never seen before, she couldn’t walk properly because of her hips.  She began to hobble and shuffle like an arthritic babushka.  A few times she fell and had to grab onto something to prevent the fall.

The malarone course ended and a few trips to the chirppractor later, she didn’t see any (or much) improvement, especially in the hips.  She was reduced to lying on her back the entire day.    Luckily we had a lot of TV stored up on the Tivo.  She had it all watched in about a day or two.

Sunday – a vanished day

On the 4th day after we came back, I went to Poughkeepsie, NY with my girls to drop them off at my mom’s where they will stay for a week and relax.  After a hard adventure trip, the kids enjoy the down time.

It takes 17 hoursto get there an back  including 10 hours on Amtrak trains so I don’t even see Trish at all.  But the house looks exactly the same as I left.  The shower dry, refrigerator unopened and everything in exactly the same place.  I don’t think she had done anything that day except watch TV and lie on the couch.  I really began to worry.

Tuesday – Dilauded and tests

Monday Trish found some old Dilauded from the double mastectomy and started treating the pain. She had been taking 3200 mg of ibuprofin but it wasn’t doing anything.

Dilaudid is among the most powerful painkillers administered and a small 1mg dose only dulled the pain.

But it got her through till Tuesday, when we went to the medical center for the CT and bone scan that produced the report in my shaking hands.

Wednesday – the results come in

The report reads strangely but the gist is she has several new appearances of the breast cancer.  A few are in her abdomen:  adrenal gland, pancreas and some lymph nodes there.  But we aren’t even talking cancer treatment yet.

The largest is on her iliac-sacrum and has been causing the severe pain.  It is very common for breast cancer to travel to the bones, especially ribs, hips and spine.  In the bone the breast cancer tissue causes a lot of severe pain.

They will treat the pain today with more Dilaudid and a big dose of steroids (which she takes orally because of her severe needle phobia) for short-term pain management.  And she will get a course of radiation on the bone nodules to kill them and eliminate pain for the long-term.

Breast cancer on the bone also causes the bone cells to release calcium.  This weakens the bone structure and can even result in fractures.  The extra calcium in the blood causes a condition called hypercalcemia and results in a variety of symptoms including thirst, constipation, loss of appetite, memory loss and depression all of which Trish has had recently.  The thirst was the weirdest one to explain, but there is the explanation.

Trish pinpoints the source of the acute pain to Dr. Hendricks and it’s the exact spot where the scan shows the 2cm cancer nodule is located, which makes sense.  The concern is the numbness which might  indicate that there are very small cancer nodules pressing on the spine.  If they continue to grow, they can cause paralysis or death.    The MRI is primarily to look at the spinal column and look for these.

I let Trish go and she crumples in the examination chair, silently.  We sit a few more minutes until Dr. Hendricks comes back in.  “We got the authorization.  Go over to the other medical building and get the MRI in two hours.”

They put us in the private chemotherapy room with a couch on which Trish rests.  I turn off the light and shut the door.  Extreme stress and anxiety makes Trish want to withdraw and sleep for a while.

I’ll go downstairs to the food cart and get her a Bananna-Strawberry-Blueberry smoothie she likes so much from this particular cart.  We’ve been here so many times that I know exactly what she wants from the tiny food cart.  She hasn’t eaten all day.  Neither have I for that matter.

Breaking hearts

Outside the medical center, it’s hot.  We haven’t been bothered by the DC heat wave because we were in Africa’s winter most of the summer.   I find a spot in the shade under a maple tree and pull out my phone.

It’s time to start calls to Trish’s family, beginning with Becky.  She’s usually the easiest to get and our routine is that she relays the sad news first to other family.  When I can get back home tonight, I’ll do longer calls with each.

This is one of the hardest parts for me, having to talk to her family.  My heart has already been broken many times.  Do I have to break theirs again too?

But I know the drill.  No one is shocked but this.  We are all very surprised and extremely dissapointed, yes, but not shocked.  Since the diagnosis of metastasis in March, we have known that this report would come eventually.  That’s what stage IV cancer does eventually unless you get a total miracle.

Trish in May.

Because  she was clean in April except that  node in her neck, and by early June it couldn’t be felt to the touch anymore.  So it was not unreasonable to have expected a few more Chemotherapy-free months.  We know she has the disease for the rest of her life.  But chemo-free months are precious and we expected to get a few more.

It just didn’t go that way.  After calling, I cry again, sitting under the maple tree.  The tears drip down my nose.  My eyes don’t focus and I can only hear my heartbeat.  I’m barely aware of anything external.  Thoughts and images and fear and sadness race through my head.  My hands touch some sticky sap and then covered with dirt.  Fuck.

The spinal MRI

Trish doesn’t touch the smoothie even though it’s her favorite.  Her appetite is weak, another symptom of progressive cancer.

A huge thunder and lightning storm breaks out over Bethesda just as we arrive at the next building.  The MRI technician says the scans will only take 35 minutes.  “More if there is a power outage.”   Great.

It takes almost 2 hours  (with no power outage) to be on our way home.  The results of the test are still unknown.

The doctors could not connect before the end of the day.  We did get a prescription for dilauded before we left, which Trish takes more as soon as she gets home.  4mg does the trick, and she’s pain-free for the first time in a ahilw.

Even though the news wasn’t good, Trish seems like she is in better spirits. .Maybe she’s just really high.   More likely the anxiety of not knowing is worse than the bad news.  At least we know and have a plan.

She dozes on the couch watching reruns of ‘Portlandia’ I make the couple of hours of phone calls to family.

Thursday – the radio-oncologist

Trish smiles and laughs at one of my dumb jokes.  It’s the first time I’ve heard her laugh and it softens my heart.  When your loved one is really suffering from pain, they stop being the person you know.  Their personality changes.  After a while it can be hard to visualize them as a friend.  It’s like they’ve been possessed.  It makes it tough to remember you love them.

This happened both times Trish went through chemo.  Some of the chemo weeks were so bad that I felt like I was caring for a complete (angry) stranger.  I’ve had echos of those feelings since we came back from Africa and it’s nice to have her back, even a little bit.

Trish takes the call from Dr. Hendricks while I’m on an early phone call with work.  The cancer that is invading the bone of her hips and sacrum are not pressing on her spine anywhere that could cause paralysis or death.  It’s still not clear where the numbness is coming from, but maybe it will go away with the big dose of steroids Trish got yesterday.

I drive across the county to the imiging center to pick up her scans and bring them back to her radio-oncologist, Dr. Chan Chung.    He’s going to be radiating the area and killing the cancer on the bone that is canusing so much pain.  The MRI will tell him exactly where to administer the radiation.

After another long wait in the waiting room (at least they are honest when they call it that.)  he sits us down and explains that in addition to the nodule the CT scan found on the sacrum, there are two smaller ones on the hip bone revelaed by the MRI.   He prescribes about three weeks of radiation every day (starting Wed. 25th), which should kill the hip bone cancer and leave her pain free .

We know that she will do chemotherapy after that.  No idea yet which one or how long.  There are no definitive protocols for chemo treatment at this stage.   You try something, and if it works you keep doing it.  If not, you try something else.  That decision will come next week.

Dr. Chung, the radio onlcologist tells us in his deep accent “I don’t usually compare patients, but you are not the worst.  You look healthy.  Sometimes people are already tired and weak at this stage.”

Trish and I had to cancel the tutu party we were having on Friday.  It’s partly the emotional burden, partly that I lost almost 2 full days to hospital visits, and partly that she still has to lie flat and let the steroids do their job.  We’ll rebook that.

And we have to cancel the three-week California trip we had planned for August including Trish’s 30th High School reunion.

And so our week ended, with the major crisis averted – the spinal cord risk.  And the pain will be gone shortly. Next week we should learn more about the chemo options.

We will talk to the girls, for whom this will be hard but they know their mom is a fighter. And then we’ll figure out how the rest of the summer will go.  We’ll make a plan and go from there.

Somehow we’ll get to the ocean.