Still in the hospital, but otherwise great

Published on by ekhb

Perhaps you are wondering how this latest day stuck in the hospital went.  Here’s the report!

First night in the private room
First night in the private room

Yesterday’s final CT scan showed the bleed beginning to resolve.  Yay! So all was set for surgery today.  I was NPO–no food or drink–from midnight on, but got permission to skip the all-night IV fluid drip because of my previous horrible hospital-acquired edema  that pretty much disabled me for 3 weeks.  Then they kinda had to let me have ice chips this morning.

Surgery went well around midday and now—after 10 pm—Eric and I are in my observation alcove for the night (no more private room) and are enjoying ice cream after a delicious and long-awaited Panera soup, salad, and bread-and-butter dinner.  I think I ate enough to make up for all day’s no-food order!

We’re going for a walk around the floor soon, before Eric leaves for the night.  We walked 0.6 miles this morning before it was suddenly time to go to surgery.  I am feeling stronger in the legs every day, even in the hospital,

After he goes…New Yorker or Netflix w/ headphones until the dexamethasone I took late at 6 will let me fall asleep.  Patients in the neighboring alcoves seem to want the TVs on, even this late, so I will need the earplugs I received a few nights ago in an earlier loud alcove room down the hall.

We expect discharge tomorrow, whether early or late in the day.  Eric will be back in the morning to wait it out with me. Normally someone post-op with a brain bleed might be kept an extra day or two for Heparin and observation…but my neurosurgeon said he and my oncologist agreed they could only push me so far.

hidden toes
hidden toes
badass selfie!
badass selfie!

Another evening update from the hospital

Published on by ekhb

I am still in the hospital, but in a private room now so things are better.  Last night we–five of us–had a Thai food picnic along with cranberry-orange granita made by my friend Isa, and then Jesse and I watched our TV show together while snuggling and Eric did a bit of work in the family waiting room.

I did not get to go home, but surgery is scheduled for tomorrow. Morning, we hope.  Today I had vein studies (ultrasounds) to assess clot risk and another CT scan that the neurosurgeon will use like a GPS map tomorrow.  Other than that, it has been walking the halls, meeting new nurses, and doing a few bits of business with Eric, who arrived around 10 AM.

Right now we are waiting for Jens, Spee, and Jesse to arrive for dinner and hanging out. This is one of Jesse’s two weekly nights at home, because they are boarding five days right now at Bard Academy. So I want to see as much of Jesse as possible even if I’m not home.

After an extra weekend spent at home instead of at Buxton–which ended up being spent largely here at the hospital or back-and-forth in the car–Will took one of our VW’s back to school with him yesterday so he can come back and visit when he needs to.

Spirits are good even though I miss my bed and my sofa and my fire.  I have my people.

Quick evening update–good news

Published on by ekhb

Just heard from my new nurse that my CT scan at 1 PM showed stable bleeding–so that is excellent news, no spread of bleeding to be seen today and no need to check my neurological all the time tonight. Woo hoo!

Still hoping to go home sometime tomorrow to await the Ommaya surgery when the neurosurgeon decides it’s time.  Discharge will depend on both the Neurology and Neurosurgery services setting me free; then the Medicine service will cut me loose as well.

Even later and less greater happenings

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Yesterday I got admitted to Albany Med for a little cerebellum bleed discovered when doing pre-admission CT scan for the Ommaya reservoir surgery Tuesday.  So now it’s the next day and I am at AMC being checked every hour for neurological status, which is fine so far, despite a couple medium headaches.  Tylenol worked! I will be here most likely until tomorrow. Eric will be home this afternoon from his California work trip. My mom is here too until tomorrow.

First I heard no surgery Tuesday because of this. Then I heard surgery Tuesday anyway. My oncologist stopped by this morning to visit and said it would be up to the neurosurgeon, which is fine with me.  If the bleed is all over, I guess I could see surgery going forward. I had a repeat CT scan midday that should tell us whether the bleed is over or continuing. If over, I am likely to go home tomorrow and maybe even have the surgery Tuesday. In the meantime, I have been visiting with Will and Spee, taking walks around the halls with my cherry cane, and hoping to watch a movie one of these evenings, or read The New Yorker.

It looks like the bleeding came from a new metastatic lesion in my cerebellum–a very small one, but one that wanted to build some veins in a hurry.  I don’t think I will be able to take blood thinners after this, so the question will be is there anything to prevent anymore clots or emboli.  Because my clot and previous emboli came from my upper arm area, there’s not much to be done.

But right now I am going for a walk in the halls and to try a teeny bit of Qi Gong with Spee in my curtained alcove.

Latest not-at-all greatest developments

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The results of my recent MRIs were not good.  The pelvic MRI to see what might be causing left leg pain showed “patchy areas” in the cauda equina (nerves just below the end of the spinal cord). That worried everyone and triggered a quick repeat brain MRI and a cervical spine MRI to look for more deposits or “thickening” in various places.  Both showed evidence of more cancer-cell deposits on the lining of the spinal column and brain, which can cause swelling that impinges on nerves and do other damage to the nervous system and the brain.  Cancer in the cerebro-spinal fluid, which is called leptomeningeal carcinomatosis or leptomeningeal disease (LD), is just about the worst development in metastatic cancer.*  

Eric and I talked with my oncologist for half an hour Saturday morning (he gets called at home with bad results). We discussed treatment options and the option of no treatment–because the one standard treatment for LD only works half the time and has nasty side effects.  “Works” means you maintain the function you have–people don’t (usually) get better from this.  Life expectancy with no treatment is only 4-6 weeks.  Life expectancy with standard treatment, according to one study, was a median of 7 months for LD from breast cancer, and shorter for LD from other common cancers. 

So that’s sobering.  We had lots of questions and called him back that night to discuss them.  But basically I just don’t think…or feel…that it’s time to give up yet. 4-6 weeks?  I will try for those extra months as long as my quality of life is still decent despite side effects–headache, nausea, vomiting.  And more trips to Albany; twice-weekly chemo delivered–here’s the cyborg part–directly into my brain via a “reservoir” under my scalp, connected to a tube that reaches into one of my large ventricles.  That way the drug can be infused directly into my cerebro-spinal fluid (CSF).  It’s called an Ommaya reservoir but I just call it the brain port.

I’m also planning to try taking penfluridol, an old oral antipsychotic drug that seems to kill triple-negative breast-cancer cells…apparently in people (retrospective study) and definitely in mice (randomized controlled trial). Would that I were a mouse. But at this point I’ll try it anyway if I can.  The exciting thing about this drug is that it acts in the brain perhaps even more strongly then in the rest of the body. Most chemotherapy drugs, by contrast, do not cross the blood-brain barrier at all.  So for someone with cancer in the body and worse cancer In the brain, it seems worth it to start acting psychotic right away.

There don’t seem to be cutting-edge or novel ways to treat leptomeningeal disease that are being done at bigger cancer centers; the standard of care is methotrexate everywhere, It seems. Eric and I were exploring the idea of going somewhere bigger and busier to deal with this complication because a place like Dana-Farber would probably have more experience with LD than our one oncologist here in Albany. But that introduces the need to drive long distances for treatment, which decreases quality-of-life quite a bit. We also asked about and looked into clinical trials but have yet to find anything that fits.

We are still draining my left lung every three days and the amount of liquid is going down, Which may mean that the chemo I’m on now is working to kill off little cancer cells. Cross your fingers!

I am now back on high-dose steroids to decrease brain and spinal-cord swelling, Which could mess with my nerves or cause a seizure. No one will ever see my cheekbones again. I am very sad about this. And a lot of me does not quite believe how this is going–that is, about as badly as it could go. But on the other hand my foot edema is gone and my daily headaches went away and although I have LD, it does not seem to be kicking my butt with its patchy deposits at the moment.

More later on all the thoughts this makes us all think…

*LD is more common now that more women are surviving longer with metastatic disease–the cancer has more time to find its way into the CSF.

Palliative care

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What comes out of my pleural space
What comes out of my pleural space

This morning we had our first visit from a palliative care nurse.  We got set up with the Visiting Nurse Association for oversight of the lung-draining process, which continues every other day for now.  Then we found out that the VNA also has a palliative care program so we signed up for it. Now we have someone who can help us investigate various pain-relief options and also set me up with a visiting occupational or physical therapist who can help with my left hand. As part of this they offer something called anodyne therapy which I had never heard of, but which looks like it might help my hand pain. Anybody ever had any experience with this kind of treatment? It seems to work by increasing circulation.

She also gave me yet another end-of-life document to fill out: a MOLST or Medical Orders for Life-Sustaining Treatment. I thought all my work on the Five Wishes document was all I needed to do, but apparently not.  So I will tackle that eventually.

The foot and leg edema that was an unfortunate gift of my last hospital stay is getting better slowly. My right leg and foot are pretty much all better and that leg feels stronger lately too.  My left leg is no longer swollen but my left foot is still kind of a puffy mess.  Yesterday when we went to the office of the compression-garment expert, I not only got a compression glove for my left-hand–to address the edema in my fingers as well as protect that hand from accidental touching–but we also asked her advice on the foot edema. We have been getting different stories from different semi-experts about what might help besides elevation and eating lots of protein. She suggested a compression stocking and explained why there’s no such thing as a compression sock. She had some samples, so now I have a pair of nice black light-compression knee-high socks and I think wearing one is already helping the foot a little bit.

Eric goes to California on Sunday for a week and my mom comes Sunday night for the duration. I am lucky to have so many retired and self-employed people in my family who can come visit when it’s needed!

I didn’t sign up for this.

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I think I have made my peace, or as much peace as I can right now, with the fact that I most likely will die much sooner than everyone else I know.  Of course this sucks, but I don’t find in myself a lot of feeling that it’s unfair. I don’t ask, “Why is this happening to me?” This–the likelihood of dying soon–is kind of what I’m signed up for at this point.  So I’ll try to make something good come out of it too.

What I have not made peace with is the amount of pain I am experiencing along the way, or the disability that comes from my peripheral neuropathy: the numbness, tingling, shooting zapping feelings in my feet and the numbness, constant cold sensation, weakness, and clumsiness in my hands–plus pain with most contacts of the left hand, which I keep tucked away in a mitten for protection.  I am basically one-handed right now and that one hand ain’t so great.

The back pain that was my daily torture for months has subsided substantially, and my daily headaches have pretty much gone away. Those are good developments.  But the extreme edema left over from my December hospital stay has caused a lot of foot and leg pain and made it even harder for me to walk.  Before the hospital it was hard for me to walk any distance, but since then I have a lot more weakness and pain in my legs–maybe due to something called steroid myopathy.  (Still working on getting off steroids.)  It is painful and hard to stand up and I am unsteady as I shuffle around.  And my knee still mysteriously hurts.  And my neck muscles spasm some mornings for an hour or so.  Why? Who knows.  (I am taking various drugs to address the pain with varying results.)

So when it comes to the daily pain burden and the increasing disability, I do wonder, “Why does my journey have to include all this? It’s not fair.  It’s too much.”  It’s harder for me to handle than the underlying fact of incurable cancer.  If there is a way I can keep on living despite this disease, does that mean years ahead of hurting this much every day? Of needing this much help with daily basics like getting dressed?  Wow.  I sure did not sign up for that.

 

Phase Two: Definitely the “one damn thing after another” zone now

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Friday 12/18 after chemo I was feeling pretty good overall–the Zofran was working to keep nausea away and I didn’t feel too bad. But then Saturday I woke up feeling totally knocked down. I couldn’t walk to the bathroom without help.  Not only were my major muscles weak, I felt sort of like sludge was in my blood vessels instead of blood. Sunday afternoon we talked to my oncologist and decided to go to he ER to find out what was going on–most likely the pleural effusion had built up again and would need a more aggressive solution than the one-time drainage of the previous Wednesday.

In the ER they use an ultrasound to confirm that the pleural effusion was back and was interfering with my breathing and oxygenation. But as an early Christmas present, they also followed some clues from the EKG they did to find out that I had fluid around my heart as well. That was not an emergency, but needed to be dealt with pretty soon before it became dangerous. So I was admitted to Albany Medical Center yet again to have two procedures done the next day: a drainage catheter put in to the space around my heart for a couple of days and a more permanent catheter installed to drain the space around the left lung.

Glimpse of oncologist using his wiles to get me moved to the oncology area, a better neighborhood of the hospital
Glimpse of oncologist using his wiles to get me moved to the oncology area, a better neighborhood of the hospital

I spent Sunday night in the hospital, had the two procedures both done on Monday afternoon, and was discharged on Thursday, Christmas Eve. Since then I have been home sitting on the couch or in the bed waiting to feel better and having Eric drain fluid out of my lung every afternoon. How romantic!

We went to NYOH yesterday to see about chemo, which was on the schedule, but I didn’t really feel well enough yet. My feet and legs are really swollen from the IV fluids I got in the hospital and it’s painful to walk. I guess I am less out of breath now. So that’s the short story of the latest bumps in the road. There may be more to do with the heart, depending on whether the fluid is building up again. Both buildups are caused by tiny cancer cells blocking the drainage of normal fluid, so killing the cells off is really the only solid solution.

In other news, both kids are home from school and my mom is visiting so there are lots of people around to help this invalid get through the day.

In other bad news, the reason I need so much help is that the neuropathy in my hands got worse enough during my time in the hospital that I can’t touch-type anymore, and can’t do a lot of other things, like buttons and opening jars, requiring reasonably working hands. Besides them being clumsy and numb, one hand also hurts when touched by almost anything, or used, or lowered below the waist.

Had to add a few more equally obvious Don'ts.
Had to add a few more equally obvious Don’ts.

In the plus column I’ve gotten the lymphedema in my left arm under control so I can wear the lighter and more comfortable compression sleeve and gauntlet during the day and only wrap my arm in the graduated-compression bandages at night.  In the hospital, though, it was bandages 24/7 and the nursing staff put up a sign–which seemed so obvious given the big bulky bandages that we felt compelled to add to it:

“No BP Left Arm”

“(No SpO2, no IV, no lifejacket storage)”