Tangled Up in Tubes

[tangledupintubes]

The Last Time

This will be the last entry on Tangled Up in Tubes.  This is not the end of a chapter.  It’s the end of the book.

Volume One of the trilogy involves my childhood in Michigan.  I grew up in a big, comfortable house on a beautiful lake with a nice family.  My mom in particular was about as sweet and indulgent as they come.  My dad was not as warm and fuzzy, but he was a good provider and wise-cracker, and I appreciate that now more than I ever did back then.  They have both left me, and I miss them very much. We had a great time in the lake, but my rural environment had many other things to offer.  My brother, the neighbor boys and I played in the swamp behind our houses year round, and I liked to spend time alone contemplating my future as I lazed by the shores of the pond across the road, hidden among the tall grasses.  I used to follow my cats on their adventures, across the field, into the woods, until at last they would ditch me by skirting under a fallen tree. They would continue on unencumbered, always coming home for mealtime.  I rode my bike over to my grandmother’s house every afternoon in the summer and would read to her.   During the school year, my mom would be waiting at the white pillars that marked the entrance to our road, and we would drive the mile over to Grandma’s house. She always provided lots of sweets.  She enjoyed the different birds that flew by her window and would shuffle around the yard with me, showing off her tulips.  I wandered around the surrounding fields and woods there too, something I always took for granted. I left home to go to college and was pretty disappointed with it all.  High school was not a good time (at the time -- though looking back I had a lot of great moments and acquired a pretty decent vinyl collection, but the rural life seemed drab and decidedly unglamorous).  I had very high expectations of intellectual discovery and meeting fellow seekers at my institution of higher learning. Alas, for the most part, I searched in vain, and after a couple of years I fled to NYC. Volume Two begins there, when I was 20 years old, in January 1989. I started my new life on E. 10th Street, next to the Turkish Baths.  It was a glorious, pre-Guiliani time when there were great bars and music venues everywhere, and suburbanites were still terrified to go to the E. Village.  That was our playground. My friends and I went to school, worked crappy jobs and did naughty things.  It was the best of times and the worst of times.  We were always broke, and some of my roommates were junkies or drunks, but that’s all part of life in the big city isn’t it? I lived in 7 apartments in 3 boroughs, had lots of jobs, a few failed love affairs and 5 kitties. I experienced a lot of great food, conversation, music, art and theatre with some amazing people -- dear friends, acquaintances, work folk, strangers.  I’m glad I lived here.  I’m thrilled to leave. I’ve had it in my heart to leave for several years.  When Leukemia struck, it seemed like it had derailed my plans, but it merely delayed them.  I’m better now thanks to my docs and nurses at Sloan Kettering and Methodist Hospital. On Friday I thanked Drs. C, A, and H and bade them adieu. On Sunday, the movers came and took all of my things away.  I hopped into David’s car with a few immediate necessities and the monsters, I said good-bye to NYC as well. Now I’ve started Volume Three of my life’s opus, in a new city and new state. We made good time to Portland, ME and arrived just after 8.  I already visited what is sure to be my new neighborhood watering hole.  It’s walking distance. The movers are putting my bed back together, and the Time Warner guy just left.  It’s starting to come together already.  I’ll be getting a car after the blizzard passes this week.  And I’m starting over in a new town, with some wonderful old friends very close by.  It will be a glorious new adventure, and whenever I have a pang of missing NYC, I’ll just look out my window.

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[tangledupintubes]

The Final Procedure

On Monday I had the last intrathecal chemo procedure -- a lumbar puncture with chemo injected directly into my spine.  I admit, I have felt like holy hell all week as a result, but it is the end.  From here on out it’s blood tests and monitoring. I’ll eventually need some other tests to make sure I haven’t developed any side effects from the chemo and radiation, but I don’t need to do that immediately.

Today marks 11 months since my stem cell transplant.  My immune system is about half-way back.  Having the T-cells depleted has made progress slower than I would like, but after watching a documentary on cancer in which a little boy died from Graft vs. Host Disease, I’m happy enough with the decision made with Dr. G. to have the donor’s immunity removed.  GvHD can attack the skin, stomach (which it has done in my case in a very mild fashion) and the liver. I was not keen on having liver damage, or potential mortality for that matter.  So my vaccinations will have to wait.

I’ve come a long way from July 25, 2015 when I went first to urgent care, then to ER at NYM with this note:

47 yo female no sign pmhx recent with smoking this week.  p/w with heavy gum bleeding, petechia purpura rash, arms trunk axila, bruising to arms, severe pallor, heavy vaginal bleeding, pt near syncope and severe fatigue.  Pt also with severe occipital headache.  pt tachycardia to 125 in clinic, pt needs stat cbc for h and h and platelets.

Patient Instructions

GO TO ER

You have presented with a condition that needs evaluation in an Emergency Department as I’ve explained, you verbalized undestanding.  I feel there may be a condition occurring that can be life threatening to you and you will be best served in a specialized setting.  If you do not proceed to an Emergency Department, you risk serious morbidity and worse.

Worse meaning DEATH.  I may be vomiting a lot this week, but I am no longer in danger of dying.  That’s a plus.

I have transferred my care back to my original crew at New York Methodist hospital here in Brooklyn after Medicaid ran out.  I purchased a platinum health plan through Obamacare, and Sloan Kettering does not accept any plans from the exchange.  If I had the exact same plan through an employer, they would be happy to take it.  The fact I am paying 100% myself rules out any further care there. It’s one of the stupidest things I’ve ever heard (and believe me, I’ve heard a lot of stupid things).

I received a warm welcome from my original doctors when I returned in August. Dr. H. didn’t recognize me at first because I was wearing contact lenses and now have hair.  Not enough, but it’s coming along.  It was also burgundy at the time, so that probably threw him off as well.  All of the gang seemed genuinely excited to see me.  Dr. A. was always in contact while I was at Sloan, checking on my progress every month or so.  I guess a success story is a happy thing for the team.  Plus, who else went to such efforts to make them laugh?

Dr. C., who is a fine purveyor of sarcasm himself, even brought me food after my first intrathecal at the infusion center since he wanted me to stick around for a bit, and I was starving.  I ran into him at my buddy’s show and introduced him as “one of the doctors who saved my life.” Then I bought him a whisky.

Speaking of whisky, I am six days from departing for Scotland where I expect to be imbibing suitable quantities of single malt and probably lots of fish. Hopefully my stomach stops being a jerk soon and my taste buds too, since I would really like to have some steak while I’m there. Angus beef you know.  I like steak.

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[tangledupintubes]

The Difference a Year Makes

One year and nineteen days ago, I staggered into the ER at New York Methodist Hospital in Park Slope, Brooklyn, wondering what the hell was making me so exhausted.  As faithful readers will remember, I was running out of blood. Lymphoblasts were crowding my bone marrow and blocking production of the cells we all need to survive.  Leukemia.   It still doesn’t seem real. That first night in the ICU, I resolved that I would not die yet.  I still had to go to Scotland. Four days later, chemo started. A couple weeks after that I was bald.

In the midst of all of that, my dad had bronchitis, then broke his hip. and spent time in and out of the hospital, a senior care facility and as always, under the watchful care of my sister.  I wasn’t able to make it home to see him last year since my depleted immune system could not handle a plane trip.  I negotiated with Dr. G. for a trip this July, and she relented after she learned of his deteriorating condition (she never gave me clearance to ride the subway, but I disobeyed that order a few weeks ago).

My annual Fourth of July trip came off without a hitch this time, and I got to spend a whole week with my Dad.  He wasn’t doing well, declining daily.  He had four seizures one morning, and it was the first time I ever saw fear in his eyes.  It was heartbreaking to behold.  He was gone a week later.  

When I returned to NYC, I learned one of my dearest friends was also close to the end; a savagely quick pancreatic cancer was shutting down his organs. The day after my father died, I raced to Long Island to visit him in the hospital.  It was the last time I ever saw him.  He was gone two days later.

And other friends have been losing loved ones, and it seems like that’s going to be happening now.  “We’re getting to that age,” we say.  And we are.  I still have one more lumbar puncture to go, vaccinations to get, and blood to monitor.  I will never be free of doctors again, but that’s part of my life now.

So I try to take my losses and steel my resolve to do the things I want to do with my life.  And I booked a ticket to Scotland.

So Slainte and Mòran taing!  Good health to you all and many thanks for all of the support.  

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[tangledupintubes]

Progress Report

Today marks six months since I received stem cells from an unknown 21-year old woman and got a new lease on life.  The transplant replaced my bone marrow which had developed a life-threatening mutation, a mutation that caused Acute Lymphoblastic Leukemia.   Now all of that is in the past.

Next week I have my three month bone marrow biopsy (hurray, those are so FUN) plus I’m revisiting another delightful procedure.  Last Thursday I met with my Nurse Practitioner and doctor for a checkup.  NP casually mentioned something I found unintelligible.   After Googling what it is, I think she said “intrathecal”.  Weird I didn’t catch that.  It’s basically the worst.  They will inject some chemo poison directly into my spinal column, which will eventually travel up to the old brain.

Now I’m FINE WITH THAT really.  I didn’t know it was coming.  They had never mentioned I would ever have anything like this again, but of course Thursday they acted surprised I was surprised.  I think they THINK they have conversations with me that never take place (the mandatory caregiver talk that didn’t happen until a week before I was admitted springs to mind), and after IMAGINING it took place are confident I’m duly informed.  But I remember shit like that, and it never happened.  And that annoys the hell out of me.  They are great at medicine and not so great about basic communication at times.  But I am fine with getting this procedure, because it’s okay to be extra special sure I don’t get any cancer in my brain.  NO PROBLEM.

So this is an extra precaution.  But it won’t be as pleasant as the first time.  I told NP that at Methodist I was given dilaudid during this procedure.  She looked shocked.  Poor thing.  I told her I knew they wouldn’t do that since I was an outpatient, but to tap my spine and expecting to send me home with instructions to take Tylenol if my head hurt (and it will) was foolhardy.  I wanted Percocet.  I was very clear.  NP called in the prescription that afternoon.  I already picked it up.  

So that’s what on the horizon, but I’ve come pretty far.  I have an inch of hair, growing in all dark grey and mousy, so I dyed it magenta.  My toenails have nearly gotten back to normal after the molt (I think I’m all done with the molting now...is this just a gross transplant thing or do other cancer patients have this crap?), and my appetite and most of my taste is back.  Can’t have sushi yet, and carbonated drinks and spicy foods are still not working for the tum tum, just about everything else is ok.  My t-cells are at AIDS patient levels, but they’re growing back.   My blood count and electrolytes are totally normal. 

I’m going out to dinner with Tom to celebrate.  I’ll probably get a steak.  I don’t even have to eat it well done anymore (because burned steak is an abomination!!).  I will have three glasses of wine, minimum.  Because it’s Friday, I’m celebrating, and I can. 

T + 6 months!

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[tangledupintubes]

Lucky

Sometimes I take for granted how “easy” my treatment was because it was so successful and because I had few choices to make.  I was so sick that I had to start chemo immediately at Methodist, and I didn’t have time for a second opinion.  When I got one, the docs at MSK said, “yeah, that’s fine.  I mean WE would have given you different drugs, but those are standard and you’re in remission.  It worked. Now, let’s talk transplant.” Once I met with my transplant doctor, there was a choice to make, but it seemed like the best course of action.  Do a stem cell transplant and remove the T-cells or not?  I got a second opinion from the head HemOnc guy from Methodist (the one who was mean at first but turned out to be very supportive after our initial, horrible encounter). He thought it was fine. That decision primarily hinged on if I was healthy enough to have that type of transplant (which was Dr. G.’s call), and if I was comfortable having all immunity wiped out (the T-cell depletion).  I was because I didn’t want Graft vs. Host Disease.  

Yes, the chemo wasn’t pleasant, but I only had four rounds of it, from the end of July through mid-October.  Some people have chemo for YEARS.  

Yes, the transplant did all sort of weird shit to my body.  Examples include turning bright red for a few weeks, losing ALL of my hair (which has returned), not eating or drinking for two weeks, relying only on nutrition through an IV and the aftermath of trying to get my appetite back (only possible with three pills of Budesonide per day, a weird steroid) and the molting skin on my hands and feet. And that goddamn saliva from hell (which is known in leukemia land as “secretions”).  Well I don’t even want to go into that again.  It was worse than puking from chemo. It was worse than all of the rest of it, and it went on for way too long. But it’s gone now.

Still remaining? What is with the nails growing a layer under the old one and pushing the old layer up like a complete extra nail? Gross! Like really gross.  My fingernails have all shed the icky extra layer, but are they very short and prone to chipping if I think too hard about something.  Or use my hands.  My toes are undergoing the transition now.  My feet don’t feel the same since I lost that layer of skin, which now feels like it’s stretched too thin over my feet, resulting in a weird, tingly feeling all of the time.

My left index finger is still not right after Yusef ran into the nerve in my arm during PICC insertion number two. “It will be fine in a few hours,” he said, six months ago.  I hope the damage isn’t permanent. The rest of my fingers got better, but this one is still numb yet tingly.  I have heard that nerves are very slow to heal, so I haven’t given up hope.  

But my hair is growing back, my taste buds are back.  I am drinking wine again. I am not smoking.  I am walking more and feeling stronger every day.  My excretory system is nearly normal again too. You would be surprised how gratifying that is. 

I take for granted most days that this is the only way it could have turned out. But then I have days when I realize it isn’t.

This morning I read an article on immunotherapy trials that saved some terminally ill leukemia patients.  I read this with interest, wondering at first, as I always do, “I wonder why type of leukemia they had?”  Today’s article was about ALL patients.  Oh.  I had ALL.  Acute Lymphoblastic Leukemia. These are people who didn’t respond to the treatment that has served me so well.  They didn’t respond to any of the different treatment options that have saved so many of us. 

Then I have a little moment when I realize this could have been very different, and I could be writing a very different blog, if I were able to write at all.  And then I’m grateful.  And I feel very, very lucky.

So off I go to my bi-weekly appointment in two days, where I will try to be patient if I’m kept waiting by the people who ultimately saved my life and who are still trying to keep me healthy so I can accomplish some goals and enjoy my life and keep feeling lucky I’m still breathing.  And writing run-on sentences on occasion.

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[tangledupintubes]

Way Past Half-time Report

With Coldplay currently performing during Super Bowl half-time, rather than nod off (they always make me sleepy because they are excruciatingly boring), I thought I would pen a quick update on my progress.

I passed my 100 days post transplant mark a week ago.  An important milestone for leukemia and lymphoma patients, a lot of things start to be better after 100 days.  

I’m out of the danger zone for Graft vs. Host disease, so my new marrow won’t attack my skin cells.  I may have had a minor brush with it in regards to my stomach, but Dr. G. ordered some medication to counteract that.  As a result, I can eat more than a few tablespoons of food at a time.  In fact, I ate half a pizza for dinner and half a piece of chocolate cake.

My MSK visits this week were annoying as usual.  I had to have my blood redone and a bag of fluids was insisted upon since the labs got messed up and no one knew what my renal functions were like.  That was Tuesday, and when I got to the Brooklyn location, I had to wait for someone to open the gates while I waited out in the cold.  

Then Thursday it was back to Manhattan, with the car service picking me up 20 minutes late and an insane FDR traffic snarl that rendered us motionless for a half hour until we somehow snuck off the highway onto an entrance ramp and escaped.  When I was on my way back to Brooklyn 3 hours later, traffic was still a disaster.

I was an hour late to appointments, but I managed to get through most of them quickly.  I had PFTs (pulmonary function tests) to assess what, if any, damage the radiation might have done to my lungs.  They seemed to go about the same as the pre-transplant tests, so I suspect the lung protectors did their magic.  As bizarro as my radiation was, I kind of miss those tech guys.  They sort of made it fun.  It’s definitely the best time I had at my month at MSK.  Weird, but you take what you can get. 

After all the tests, I got in to see Dr. G. pretty quickly this time, and it was a good visit.  She said I can now eat steak that isn’t well done (thank goodness, because that is an abomination), and I can have two drinks a week. I celebrated this freedom with Tom later that night at Werkstatt where I managed to drink half a glass of red wine.  It was a bit overwhelming for my palate, but I’m sure with practice, I’ll be back where I was, enjoying my vino with joy in my heart and on my tastebuds.

Yesterday I pigged out on Spanish tortilla (potato and onion frittata) at Rosie’s and drank a whole glass of prosecco!

Best of all, I will now have bi-monthly visits.  Every two weeks.  Not every other day like it was a mere month ago.  And my hair is growing in.  It’s getting a lot better.  And that is a good thing!

Ok, the game is coming back on.  Gotta run.

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[tangledupintubes]

Will It Never End?

I passed a big milestone over the weekend.  One hundred days since transplant.  I’ve been cleared to go a restaurant and can eat many of the restricted foods from the low microbial diet I’ve been on since being diagnosed with leukemia in July.  Six damn months have passed since I was able to eat certain things, and I am so ready.  Still not sure when I can have wine, but that question will be asked this week.

But last week I had my 90 day bone marrow biopsy, which was fortunately NOT a disaster like the last one.  Though I waited 20 minutes past my appointment time, the procedure went smoothly and only took 15 minutes (still no dilaudid).

Then I was sent to another room to wait to be called to do my labs.  When that finally happened, they drew enough blood to fill about eight vials then I went back and waited for another team to call and do my vitals.

Once I got into THAT little room, I had to instruct the nurses that they were supposed to be doing orthostatic vitals rather than regular ones.   They had to check that out with my doctor’s office because no one had changed the orders in the computer.  I was right, of course, because I know what procedures I’ve been getting for the past month, but why would anyone bother to inform the staff in the communication system they use?

Then I was sent to yet another room to wait to see my doctor for my 11:30. Since patient’s time is not valuable, I waited two hours for my 20 minute visit.  I was very pissed off about this.  I did have a nice visit during my wait with an older lady who is a month and a half ahead of me on the recovery schedule, so we swapped stories.  She has a lot more hair growth than I do, but my nails are recovering faster.  She said she would see me at the big survivor party in October if not before.

The punchline to all of this is the phone call I received at the end of the day on Friday informing me all of my blood work got screwed up because of the new tubes they’re using and can I drop everything on Monday and have it redone.  I refused, citing other commitments (which I actually do have).

I just wonder why they can’t get their shit together.  Now I have to be there at 8 am tomorrow so they can check and see if anything is different from the week before and give me a bag of hydration I can’t possibly need if the three trips to the bathroom I take each night are any indication. 

I was promised once a week appointments.  I’m wondering if that’s ever going to happen.  Six months on, patience is at an end.  END.  Good thing I don’t have anything else seriously wrong me with me, huh?

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[tangledupintubes]

Turning Another Corner

Today is Day 90 post transplant.  It was the second time this week I went in for outpatient treatment and didn’t receive any fluids or electrolytes via IV.  Full disclosure, they poked me four times on Tuesday and the IV didn’t take, so I refused to let them try again.  Today I simply didn’t need it.  My orthostatic vitals were good enough for Dr. G. to email my nurse the all-clear, and I went home after an hour.  AN HOUR! These visits were a four hour minimum ordeal just two weeks ago.  I felt a momentary sense of confusion then elation when I was told I could leave.

There is the possibility that I can reduce some of my meds at the end of the month too.  Maybe I won’t need to take three anti-fungal pills each morning. Or that liver protector capsule twice a day.  If I start eating the right foods, maybe I can stop taking the sickly sweet powdered drink of potassium, which beats the pills though, which make me choke, and the IV version fucking BURNS.  Yes. BURNS.  Even chemo didn’t burn going through the tube, but potassium does if it’s not run with saline.  This is a true story.

After next week I might even go down to just a once a week visit for them to siphon my blood for examination.  That eliminates a lot of car service hassles too.  My god, the car services are incompetent. But they’re free (thanks Medicaid), so I put up with a lot of stupid.

I just have to get through next week, and there could be serious blue skies ahead.  Next week is another bone marrow biopsy.  The last one hurt like motherfucking hell, but I won’t let them bore into me for an hour before crying for a doctor.  If the Nurse Practitioner can’t get through my bone, I’m calling for for Dr. G after 20 minutes.  I’m tired of pain.

Now I just need some antibodies and T Cells.  Bring on the T cells!  Maybe then I can go out and mingle with other humans (officially -- not sneakily like I’ve been doing it).

Blue Skies, smilin’ at me....

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[tangledupintubes]

Stayin’ Alive

The end of last year and the beginning of this one have seen too many of my childhood music heroes passing, plus Alan Rickman, which is just as horrible.  I usually react to the passing of a celebrity with a thought like, “well that’s a shame.”  If I happened to be a big fan (James Coburn, Frank Zappa, Eli Wallach, Leonard Nimoy), I actually do cry.  When Freddie Mercury left us, my roommates and I listened to Queen all night with heavy yet joyful hearts that such an amazing performer existed and gave us such gifts.  Queen fucking ruled!

But that was before I had cancer.  The spate of recent departures (Lemmy, Bowie, Rickman and now Glenn Frey) is different.  All of them were 70 or younger, and as I approach 50 in a couple of years, and still healing from a bone marrow transplant, it all feels quite different.  I don’t feel immortal anymore, and I wonder what I’m going to do with the rest of my life so that I feel like I didn’t waste it.

I have been out of the hospital for two months now, and I spent the interim time with Tom, David and the dogs since I wasn’t medically cleared to go it alone.  The day of my discharge was a happy one until we got home and found out about the terrorist attack in Paris.  

I moved back home, finally, one week ago today, and that joy was tempered by the loss of Bowie, which was really, really hard for me.  The man’s music was a huge part of my adolescence, a huge part of me. In his final days he made a new album, put on a musical and made a video.  And he was dying. I’ve spent my recuperation time watching “Gilligan’s Island”.  It’s time to get my shit together.  After all, today is the first day of the rest of my life.

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[tangledupintubes]

The Year in Review

2015 started off with such promise.  I spent New Year’s Eve at my usual haunt, the Farm, with my dear, dear friends, Tom and David.  

Trey was behind the bar, looking dapper as always, pausing for a selfie here and there in between mixing cocktails. The next afternoon I went over to Dogwood Manor to hang out with the guys again along with all the pooches and had a great day.

I had a good freelance gig I was enjoying (and making some overtime money from) with people I liked working with.  All was well.

By spring I had moved on to an even more promising gig that might have turned into something permanent had my boss been able to convince the powers that be our busy department needed expansion (it did).  It looked like I was finally getting somewhere. 

Then, derailment.  

My battle with leukemia has been well documented here, so I have little to add except to be utterly amazed, again, that I had fucking leukemia! Even now it doesn’t seem possible.

I saw an ad for St. Jude’s hospital yesterday with an adorable little bald girl wearing earrings.  She said she had leukemia, “a disease kids get.”  EXACTLY. How the hell did I catch that thing?  Oh right, a genetic defect convinced two of my chromosomes to switch places for shits and giggles.  Very funny 4 and 11. You tried to kill me.

But, lo, you did not succeed.  

It was only after much time had passed that I realized I was pretty close to death though.  A few days or a couple more weeks (at most, it’s hard to say) without treatment, and that would have been that.  

But once I was in the hospital, diagnosed and getting treatment, there didn’t seem to be the possibility that I wouldn’t beat it. After all, I remember thinking that first night in the ICU, I can’t die.  I haven’t been to Scotland yet.

And my friends wouldn’t hear of it.  And everyone rallied to raise money for me for the long months ahead (still in progress) where this vagabond freelancer would be out of commission.  And they looked after my cats, and brought grilled cheese sandwiches, and other treats, good cheer and support.   Now I’m out of the hospital and out of the woods.  I’m recuperating at Dogwood Manor until my doctor says it’s okay to go home.  I’m hoping it’s soon, but I’m grateful for Tom and David’s continued hospitality.  I’ve gotten to know the dogs a lot better (Foxy is by far the smartest and Huckleberry is completely neurotic).  I love them. They are all wonderful animals who have reinforced why I’m a cat person.

My blood counts are normal.  NORMAL.  My immune system still has a long way to go (no antibodies or t/b cells and my immunizations were wiped out with the transplant so keep your kids away from me), but my red blood count was 11.1 last week (we started this tale with a count of 5.9).  There is no trace of cancer.  The donor’s marrow has taken over, and so far we don’t have any complications (knock wood, cross fingers, rub that rabbit’s foot).  Still waiting for final cytology results from my last biopsy, but there is every reason to believe the defect is gone along with my original bone marrow.

I still have outpatient treatments and am slowly rebuilding my strength and appetite.  Still very bald, but my eyebrows should be fully re-grown in another week.  I can wear my contacts again and not feel like I look like Uncle Fester. It’s hard for me to see progress, but everyone assures me it’s happening. “Baby steps,” my sister keeps telling me.  I try to believe.

Days before diagnosis I lay in bed one night feeling horrible and alone and thinking no one on earth gave a shit about me.  Then I had my Frank Capra revelation in the hospital and knew without a shadow of a doubt that the opposite was in fact true.  I watched It’s a Wonderful Life the other day and cried at the end, like I always do.  Clarence’s gift to George was his copy of Tom Sawyer, with the inscription “Remember, no man is a failure who has friends.”  

Well, ain’t that the truth! It’s really the only thing that matters.  Thank you all, friends and family, for keeping me alive in 2015.  See ya next year.  I’ll be pretty thirsty once I’m approved to resume drinking, so clear your calendars. 

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[tangledupintubes]

It Ain’t Over...

I’ve been out of the hospital for a week and a half, but it’s going to be a while before I even approach feeling normal.  

My biggest goals are to try to drink 2 liters of water (impossible), keep food down and drown the evil saliva that continues to plague me.  I’m weaker than I’ve ever been in my life and feel like I will never feel any other way.  

But today I feel pretty good, so I dusted off the laptop and decided to use my brain for a bit rather than watching more Gilligan’s Island.

Food:  This has been mostly a soup situation.  I’m eating applesauce right now, which is not really solid food, but it’s not soup or Ensure, so that’s something.  I’m not particularly enjoying it.  I hope that by Thanksgiving, only two days away, my still-healing tongue will be reading for stuffing, cornbread casserole and pie, at the very least.  Turkey would be ok too, but I’m not holding my breath either.

Drink:  Aforementioned Ensures are helping my pills go down.  I used to cry in the morning when David handed me my cup of pills, but subsequent outpatient visits have steadily reduced the number of the little beasts I need to take each day. Still too many but better.  I should be drinking lots more water but I really hate it, and it’s a struggle.

Activity:  Not a lot happening here, but I need to try harder to exercise.  That and more food will make me stronger, someday.  Too bad it’s so cold now.  I’ve dropped so much body weight that I am constantly cold.  I never used to be cold. I feel like a real wimp now.

Environment:  Tom and David take very good care of me, and are trying to push me on the food and drink in spite of myself.  There are four dogs here.  I love them all, but I’m often reminded of why I have cats (no barking, no walking).

Hospital:  I have 3 outpatient visits a week, one of which is going to be in Brooklyn at least.  I wish they would schedule them so I don’t always get out in the middle of rush hour.  They can’t seem to figure out that I am paying for car services most of the time, and that shit is expensive (and they KNOW I’m not working).  Also the insurance company is being stupid about a referral for services already underway before I had to chose my HMO.  God our healthcare system is idiotic.  But we all knew that, didn’t we? 

I had a terrible bone marrow biopsy yesterday.  A Nurse Practioner tried to get through my incredibly hard hip bone a few times before finally calling an actual doctor who managed to do it without too much effort.  My back fucking hurts today though.  I think MSK gives the NPs a little too much responsibility sometimes.

At least my doctor and most of the team are cool.  They keep encouraging me, telling me I will feel better.  I need cheerleaders.  My “great attitude” is gone. I’m just tired now and want this to be over.

Everyone keeps telling me someday I will be normal again, so I guess I’ll try a little faith.  Not my forte, but it’s good to try new things.

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A Word About Hair

Hair means many things to each of us personally, but I never fully appreciated the uses and nuances of my body hair until I lost most of it.  I also didn’t realize the body had such a twisted sense of humor about its growth and regrowth, but that was just naivete on my part. 

First of all I think it goes without saying that I would have preferred to never have lost the hair on my head, since we were doing just fine and knew how to work together.  Being bald makes me look like a stranger to myself, and though it’s a face I’m now accustomed to seeing in the mirror every day, it’s just not me.  Wigs and hats will tide me over, but naturally having some hair growing on my head will be comforting as we march toward winter.

We all know we have follicles in interesting places.  What I have found curious throughout this journey through chemo, radiation and eventually bone marrow engrafting is that Mother Nature is anything but methodical, logical or even kind about when She giveth or taketh away.

So this is my experience, in all its (increasingly less) hairy glory!

The story of the shaving of my head is already documented here: I don’t need to relive that right now, but if you want to, have yourself a time.

Facial hair - peach fuzz comes and goes seemingly at its own will.

Pubic Hair:  I for one will be eagerly awaiting its return because just everything overwhelms already sensitive skin covering at least SOME important spots. Not to mention that the side effects of KGFs (meds from hell) having been making it very sad as down there as well. Seriously why does this KGF crap hate skin so much? One amusing stage of hair loss last summer saw the eventually lack of anything but a ring around around the whole area, which Tom promptly dubbed “The Reverse Brazilian”.

Leg Hair: This made my sister howl with laughter.  It proves just how mean she is.  I have had to shave my legs periodically ever since I shaved my head. Chemo has slowed down the regrowth, but my leg hair will not waver!! The follicles on my hair had to go first, yet my legs feel stubbly every few weeks, seemingly at random. Since my immune system is regrowing now, I can’t shave as normal but will have to use the *gasp* electric razor that boys use.

Arm Hair:  Also NOT VERY FUNNY.  The one place you want to be perfectly hairless due to constant use of tape and bandages has only NOW, NEAR THE VERY END OF IT maybe lost a LITTLE hair.

Under Arm Hair:  Very little trouble.  Has been playing nice in the sandbox. Thank goodness. Can’t remember the last time I had to deal with it.  Thanks for being the only easy thing going on in my body, you hairless pit.

Nose Hair:  Trust me.  It’s more comfortable to have it.  Your nostrils being stuck together just feels weird.

Brows and Lashes:  They hung on for so very, very long, and I never fully appreciated them, I have nothing left on the left eye and one lash and one or two brow hairs on the right.  I hope they grow back first.  My hair can wait.  I want my face to look normal and for my eyes to be protected and all of that other good stuff.  

Of course you just know I’ll have to shave my legs well before more than two lashes get going, but a girl can dream.

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[tangledupintubes]

Turning Corners

I’m listening to a Brazilian song that lists all of the things the singer expects to have ready and waiting because she’s coming home soon.  I’ve been hearing that “the healing process will occur when your counts come up” and though we’re not quite there yet, all signs point to the fact that actually means something and isn’t bullshit being spewed by doctors so I don’t grab the suction tube next to me and use it as a weapon.

Now why would I want to hurt these nice people? I’m afraid if you want to learn any more we’ll end up firmly in TMI/TFN territory. Oh sure, I’ve ventured into Too Much Information, but have I really hit That’s Fucking Nasty yet?  Well if not, I’m about to.  Brace yourselves.

Cancer has taught me much about indignity.  Any serious medical condition likely would. Still it is hard to imagine another that requires weekly swabs of my nostrils and my ass crack.  At least they don’t use the same swab, right?

Then came the realization that I needed to start wearing Depends.  I’m wearing Depends right now and feel very secure, thank you.  When you’re coughing up untold globules of excessively thick and possibly bloody saliva, you tend to focus on choking prevention.  Losing control of another bodily function during such an episode is to be expected. And then in the heat of the moment, sharting happens.

I’ll give you a second to deal with that.  I’m well past it. It’s worse not knowing that it’s even happened until the next time to go to the bathroom and notice something is there that wasn’t before.  Those surprises occur during episodes of clearing saliva so thick it really could choke me,  And there is a lot of it, built up over hours.  I try to spit out and cough up as much as possible, but I wouldn’t be here writing this if not for the suction.  It’s just like the one at your dentist’s, and it sucks up lots of that precious bodily fluid I could do with a lot less of.  

The saliva is thick and the suction tube needs to be cleaned by thrusting it quickly into a bottle of saline water and handed back to me in time to get the next round.  I’ve done many of these alone, but now I always call a nurse in to help me with suction and remind me to breathe and stuff like that.

The final straw was in the wee hours of Halloween morning when, after a long day of sleeping and purging, I settled in for some respite from the freak show when I noticed the room was filling up with vapor.  I sat up, looking around the room for a possible culprit but seeing none.  I smelled nothing so I didn’t deem it to be fire. I hit the HELP button to ring the nurse’s station and told them I was afraid something had sprung a leak. 

After a quick investigation revealed no equipment failure, we started troubleshooting. The nurse remembered that one of my medications’ side effects could be visual hallucinations.

So after all that TBI, it turns out my superpower was not to be telekinesis, as I’d so fervently hoped for so long. No, it was to hallucinate making the room fill with vapor. Which you can only see when it's dark.  Oh, wait.  Only I can. OK, that’s great.  And counts are up. Swell.

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[tangledupintubes]

Day 0 to Infinity

Chemo wrapped up on Tuesday.   I spent most of the day in bed.  Wednesday was my “day of rest” so I spent most of that in bed as well.  They had been forcing me to urinate every two hours over the course of two days, that in addition to vitals, blood drawing for labs, doctor visits, Nurse Practitioners coming to call and many others. I’ll break it down Pro/Con style.

PRO: The nurses are very helpful and encouraging.  The way I’ve been feeling the last few days, I’ve needed it.

CON:  My saliva.  This hellish side effect has been mentioned before, and it’s back with a vengeance.  It’s basically taken over.  I have to spit it out constantly or try to suction it, or both.  Last night I woke about once an hour to do this.  I really am over it.  It’s not abating soon though.

PRO:  The transplant seems to be working as it should.  It took all of three minutes (on Day 0) and didn’t feel like anything.  Totally bizarre. The transplant doesn’t seem to be doing anything out of the ordinary so far, so hopefully the 21 year-old donor cells are working their magic and grafting away.

CON:  Other side effects. Whether it’s from radiation, chemo or some of the meds I’m taking, my skin has turned bright red, and feels a bit like a sunburn. Considering I haven’t been outside in 12 days, it’s definitely not from the sun. My skin is blotchy and puffy since I’m retaining fluids.  My weight went up 5 pounds one day just because of fluids.

PRO:  TPN is starting tonight.  Total Patient Nutrition means I will be getting “fed” through a tube so I don’t have to worry if I’m too nauseous to eat. Not being able to drink anything still sucks though.

CON:  These are normal side effects but very annoying.  I have been told to expect them for up to a week longer.

PRO:  The worst should be over.  The transplant seems to be fine, and I just need to be patient.  Not my biggest virtue, but it’s steadily improved in the past four months.

That’s it for now.  I may be radio silent if I get the morphine drip they keep talking about (not optimistic) or just don’t have anything but saliva to report (likely).  I am probably not getting of here before mid-November.  Gag.

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Good and Bad

Yesterday was the last day I had radiation.  That’s the new good news.  I admit I will miss visiting the techs down in Radiation Oncology.  They’re a great bunch of people, particularly Gerard who cheers me on each day with comments like “You’re totally rocking this thing” or “Doing great!  You got this!”  This morning he saw that Gordon Lightfoot had come up on his Pandora playlist, so he paused it so that I could listen too since yesterday I mentioned how much I love ole Gord.  Just a truly nice person, and he’s made the whole experience a zillion times better than I expected it would be.  

The bad news is the radiation is destroying my poor little neutrophils, as expected.  I won’t be able to leave the room much longer until they rebound. That won’t happen for weeks.  I will be trapped in here until then, with only the nurses, the MSK version of the Clown Car and my nausea to keep me company.  

The last round of chemo started today.  That’s good news.  The bad news is that it’s purportedly going to make me sicker than I’ve ever been. We’ll see. Doom and gloom is what they do best in hospitals.  I am tired of the nasty saliva that inexplicably returned last week.  It’s not improving here in the hospital where keeping drinks cold is extremely challenging.  Room temp water tastes and smells terrible to me, and I am not drinking enough of it.  I don’t have many other options since everything gets warm before I finish it.  Oh joy! And I have NO appetite at all.

Tomorrow I start some creepy medicine to protect my kidneys that is derived from rabbits.  No really.  They have to check my vitals every 15 minutes at first to make sure I don’t have an adverse reaction, then every hour for a while. Gotta love the poison and the stuff to counteract the poison.  

Almost done.  Almost done.  I keep telling myself that.  Almost done.

I’m ready to go home now! It’s Day -5.  I have over three weeks minimum to go.

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[tangledupintubes]

TBI

Since I have bones everywhere and they contain marrow, I am the lucky recipient of Total Body Irradiation.  

I had to come in a few days before admission to get fitted with some special lung protectors since they can’t handle the dosage the rest of my body is getting.  I got two tiny tattoos, essentially dots that make it look like I accidentally wrote on myself.  Each is right below my neck, front and back.  I never particularly wanted a tattoo, and if I had, it would have been much cooler than these.

They also took x-rays to get the size of my lungs so they could create a perfect shield.  Yesterday, Day -9 (Transplant Day is 0), they did more x-rays to make sure everything lined up correctly with the machine.  

I have to stand in a medieval looking contraption, straddling a bicycle seat and holding on to bars while I’m strapped in with a harness.  The lung protector is a glass shield that is screwed into place, basically locking my body into place as well.  The bicycle seat is there in case I have to sit and rest during the procedure (basically for emergencies -- I’m not supposed to move, clearly).  It’s quite uncomfortable.  Once I’m all strapped in, a large glass panel is placed between me and the radiation machine.  I think it focuses the radiation so it doesn’t scatter.

Here is a picture of the contraption, though it doesn’t do justice to the overall feeling of being (s)trapped inside it.

Once I’m in place, the techs leave, the door closes and a minute or so (maybe less, seems longer) goes by before the machine turns on.  It has a creepy whine, but otherwise you can’t tell anything else is happening, of course. Apparently, I’m being bombarded with photons. Cancer.org defines Photon Radiation as “A high-energy photon beam...by far the most common form of radiation used for cancer treatment. It is the same type of radiation that is used in x-ray machines, and comes from a radioactive source such as cobalt, cesium, or a machine called a linear accelerator (linac, for short). Photon beams of energy affect the cells along their path as they go through the body to get to the cancer, pass through the cancer, and then exit the body.”

Since my lung protector is covering up some bones, later today I get to have electron therapy too, so those pesky ribs don’t get off the hook after all.  I don’t have to stand in the contraption, but instead have to sit directly in front of the creepy radiation machine.  Not sure I’ll like that any better. 

The worst part about this, so far, is the waiting around to go in.  Transportation will pick me up and deposit me nearby, but I’ve waited over a half hour to get in the room.  It sometimes takes two hours to get there, wait, get nuked, wait and return.  I don’t have a lot of patience for sitting in a wheelchair, gloved and masked, staring at a hallway. I have three sessions a day until Friday, then I only have two. Then it’s back to chemo. Waiting for that is no biggie since I’m in my room and can sleep or write missives to you, dear readers.

The best part of radiation? The techs are awesome.  They are very cheerful and encouraging.  They always tell me I did a great job.  They let me know when I’m half way through the 6 and 1/2 minutes on each side that I’m getting zapped. So far I’ve had Gerard for each session, and he likes listening to oldies stations on Pandora.  We were both singing “Goodbye Yellow Brick Road” last night rather loudly. The other tech was shaking her head. I don’t have the best singing voice.

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[tangledupintubes]

The Main Event

The donor has been secured, the transplant date is set, and I’m off to MSK tomorrow to begin my month-long study in isolation.

My day will begin with a last minute scramble to pack all of the belongings I think I will need for my stay.  Comfy clothes, my favorite throw blanket, iPhone speaker and charger, laptop, notebooks, chemo caps, a package of Tates, eye masks and ear plugs FOR SURE.  

I didn’t think I’d make it through the first few weeks at Methodist when they told me I had to stay a month, but I did.  This time I really will be there at least a month, but Scarlett O’Hara as my witness, I will never be admitted for that long again.

So Monday I will get a Hickman catheter instead of a PICC.  This will go in my chest rather than my arm and will have three lumens (whoo hoo!). 

Full body irradiation starts Tuesday (with three visits to the creepy machine I’ve already seen the first three days then a mere two the final day).  That’s followed by four days intense intravenous biotoxins (i.e. chemo).  Then a day of rest!

D Day is October 22 when the cells kindly donated to me by an anonymous 21-year old woman out there, somewhere, are fed into one of the lumens of my catheter and begin their journey to my bones.  The grafting process should take a few weeks, then maybe, if I’m not suffering from a stupid infection, I will be discharged a month after I set foot in the door.

And then, hopefully, I am on my way to growing a new immune system.  

Oh, and I still have to get my taxes done before the extension deadline next week.  No stress.

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