Thursday, November 02, 2017

So, Yeah, I Think I'm So Smart - Part 2,457

So, like I said, there are lots of appointments.  Regular oncology stuff, the stuff with the dentist and catching up on regular "keep yourself healthy" check-ups.

There's a calendar app on the Android and my paper & ink notebook.  But somehow there is still lots of opportunity for me to fail!

During the most recent dentist appointment, we scheduled a follow-up on October 31st.  Then there was something on November 2nd.  I got a call asking if I could make November 7th.  Apparently I missed that this was a rescheduling of November 2nd.  Mind you, these are text messages.  I can read these....and read them again at my leisure.

Then I had to cancel October 31st.  Woke up sick, sore throat, cough, etc.  That was rescheduled for November 6th.

So the calendar reminds me to get up and go to the dentist.  Brush, floss, rinse.....and skip breakfast because I don't want to mess up the beautiful job I've done.

Everyday at 1pm there is a scrum in the lobby of Tufts Dental School because everyone is returning from lunch and afternoon appointments begin at 1pm.  So I sent a text letting my dentist know I was in the building, but because of the elevator situation, I might be a minute or two late.  She texts back "We have no appointment today?"

Lol! Of course not!

So I called my parents and told them to expect a visitor!

Saturday, October 14, 2017

So, Yeah, I Think I'm So Smart.....

I was diagnosed with Multiple Myeloma a little over nine years ago.  My prognosis was not awesome.  My MM sub-type was IgA, which at the time was known to be less responsive to the drug therapies for MM overall.  Most MM cases were IgG, only 20% or so were IgA.  The IgG patients got better and longer lasting results from chemo and transplants.  At first, I didn't really consider what that could mean.  I was much younger than the average patient.  I had no co-morbidities.  I had good health insurance.  I was in Boston, the center of the known universe!  So, I would take some pills, have a transplant and be on my way.

But of course, that's not what happened.  I am refractory.  That means it's harder to push me into remission and I don't stay as long.  There is no cure for anyone with MM.  Sure people might get long remissions, but no one is cured.  Eventually, if you don't die of something else along the way, it always comes back.  I had one remission after my 2011 stem cell transplant that lasted 21 months or so.  And I may be in one right now.  But the only way to confirm it is a long drawn out test and I have other things rolling.  This test is way down on my "To-Do" list.  Mostly because it's academic.  If I am in remission, Dr. Miller isn't going to let me stop chemo.  I'm already on the lowest possible dose of Pomalyst and it's not good to jump on and off.  And if I'm not in remission, this dose keeps my numbers in control.  So, I want to know, but I don't *need* to know.

So, why am I talking about all this stuff now?  Well, pretty much every decision I have made in the last nine years and three months has been based on this diagnosis, this treatment, doctor's appointments, etc.  And I am a reactionary person.  Some people see their future a few steps ahead.  I never really did.  Consequently, I am always reacting to stuff instead of getting ahead of *it*.  Cause I never see *it* coming.  As the logic goes elsewhere, I am always fighting the last war.

One of those decisions was about what I would spend on myself.  What was worth it, so to speak.  I was always really big on the dentist.  My parents raised me to think it was important.  I had frequent dental care, braces, retainers, etc.  As an adult I remember spending more than a thousand dollars for a root canal, crown and a few fillings in less than three months.  But you want to keep your teeth forever!  My Dad is 83 and has all his own teeth.  I wanted to be like that.  And preparation for the transplant meant a few dental visits.  Not the least of which was a visit where they tested my ability to make saliva, lol.  Chewing wax and drooling in a cup.  I was diagnosed as having "dry mouth" which makes you more susceptible to cavities.

Anyway, one of the bad habits I acquired after diagnosis was clenching my jaw and grinding my teeth in my sleep.  Then one broke.  Then another.  I didn't have dental coverage and I remembered how much I had spent on that root canal and crown.  So I put off doing anything.  There was always something or someone else to spend that money on.  How ridiculous would it be for someone with such a poor prognosis to pour good money into her teeth?  So I just rolled along.

Of course now I know that Dr. Miller and his team are so good, and God was going to let me stick around to meet my grandson.  So now I am way past the five year mark.

And because I was so smart not pouring that money into my mouth, I now have a mess on my hands!  If I had gone to a dentist when the first one broke, I would have learned what I found out a few months ago - I can't have root canals.  One of the elements of my treatment plan is a two hour (give or take) infusion of pamidronate every other month.  One of the risks of treating with pamidronate is osteonecrosis of the jaw.  That's where the bone dies and the treatment for that is removal of the bone.

They. Cut. Out. The. Diseased. Part. Of. The. Jaw. Like amputating a leg before the gangrene spreads.  Like William Holden had to in "The Horse Soldiers" while John Wayne lost his mind.

This risk increases if you have; cancer - check; treat with chemo - check; treat with steroids - check; and require removal of a tooth, you know....like in a root canal.

So, I learned all that right after my diagnosis when I was in "Research mode" studying everything about Multiple Myeloma.  And I dismissed it from my "here-in-the-moment" front part if my brain.  I tucked it away in a little box in my mind and put it in storage so to speak.

The only reason I finally went to the dentist was the thing that always gets me off my ass - pain.  One broken tooth became infected and I hustled on in to Tufts Dental School around the corner from all my other Tufts/NEMC peeps.  If something causes pain with all the other stuff I am popping, you better believe I am "on the run with a burger on a bun" as the saying goes.

Part of the reason so many decisions are driven by my diagnosis is because my diagnosis impacts so many parts of my life.  When I tell people I have Multiple Myeloma, they generally have one of two reactions - 1) "What's that?" or 2) "Oh." followed by looking at the floor.  But sometimes it's even better and "Oh" is followed by a hasty retreat.  That's what I got when I got my butt into the first chair on this dental journey I am on.  I sit down, fold up my glasses and say "By the way, I have Multiple Myeloma.  It's an auto-immune blood cancer.".  The dental student (Tuft's Dental School, so students, but that's who treated me before the transplant and it's all heavily supervised) says "Oh." and gets up and leaves.  She comes back with the supervising dentist who is clearly trying to calm the student.  The supervising dentist repeats my diagnosis back to me and asks "What about bisphosphonates?"  So I'm like "Yeah, at least every other month since December 31, 2008."  I remember that clearly because my first bisphosphonate was Zometa and I had a bad reaction and it was New Year's Eve.

And typing that just now makes me laugh and cry because it was Frankie who found me and helped me and made me laugh about it.

So, anyway, they leave and talk to people in the hall.  I could hear some of it.  Basically they decided they could do nothing for me.  I was already on anti-biotics from the oncologist and the infection was nearly gone.  The got me an appointment to have it pulled with "Oral Surgery" the next day.

I went back the next day and met the oral surgeon and basically replayed the previous day.  Once they found out about the Multiple Myeloma and the pamidronate they tell me that they can't pull my tooth.  Everyone is going to have to conference.  Who is my oncologist?  What kind of bisphosphonate?  Who is my primary?  Where?  How often?  And then they say the word that opens up a little box of information in my oh so smart brain....way down in the back.....and I freak the fuck out!  Osteonecrosis.  I know exactly what that is.  And how it's treated and I have seen pictures and they are exploding like fireworks in my brain.  Mind you I am not showing this or saying anything except - "Ok."  "Ok."  They are telling me that I will need to see endodontics.  "Ok."  They are going to call someone right now.  "Ok."  Meanwhile I am putting up the arm on the chair and getting my bag and my glasses because I have to get the hell out of there.

Eventually I calmed down.  It took days, lol.  But the one thing I am smart about is who my friends are - The other half of Team M and My Marine kept me from jumping off a cliff.  It's all being handled.  It's all going to be great and I am not going to have to wear a burqa to cover up the fact that I am missing part of my jaw.  Sometimes it's hard to have positive thoughts.  But I have friends.  And I have Little Frankie.  Nothing distracts like a three and half year old shouting "Look at me Grandma!" 50 times.  And Emma.  Nothing comforts like holding a one year old fresh out of her bath in her jammies.

And finally, if you are reading this - go to the dentist!

Tuesday, October 10, 2017

The Safety of the Nation's Blood Supply

Before people understood exactly what HIV & AIDS were, my son Tommy needed to undergo an operation to repair a heart defect.  He had been born with Patent Ductus Arteriosois.  I thought I was going to die.  My beautiful, perfect, blond, blue-eyed baby was going to be sliced open because a connection which nature should close when a child leaves the womb had failed to do so with Tommy  I was told that unless it caused problems, they would wait until he hit a certain age and weight.  So for a couple of years I blocked this news.  But then Tommy hit the zone.  He was the right weight to tolerate the operation, but too young to experience the danger of embolism.  Because you see the connection never grows and the older he got, the more blood was rushing through that small connection.

It was the early 80s and there was no Internet, no social media.  But Time & Newsweek and other things I read talked about a gay cancer.  No one was quite sure how it was transmitted.  The blood banks didn't know how to screen for it.  So I asked how much blood would possibly be used during the course of my son's operation,  It was explained that they weren't set up to have blood donated & earmarked for a particular patient.  I told them to figure it out.  Because any blood going into my son's body would be hand selected by me.  I insisted, they relented.  I'm sure they thought I was a little hysterical.  But my mother said I was right and that's really all I needed.  They said 3 pints, but set up five donors.  It wasn't as easy as I thought.  My Dad was on anti-biotics.  Jennifer was too young, etc.  So we ended up with his Dad John, his godfather Jim & me.  I had my brother Frank and cousin Danny in reserve.

They didn't end up needing any of it and it was donated to the blood bank.  Everything went really well and they were able to get by with a blood pharesis machine.  Coincidentally, my Dad was an executive at Haemonetics and a brand spanking new blood pheresis machine with a team of techs was present for the operation.  On the first anniversary visit, the doctor said they changed everything in the blood bank and now everyone who could came in donated their own blood to be used on themselves.

John and I donated blood regularly.  We were civic minded folks.  One of the first clues I had that something we wrong with me in 2007/2008 was the despite living the Atkins Dream diet, green veggies and red meat, I was rejected twice during community blood drives.  Both times my iron level was too low.  What?  How could that be possible?  But I let it slide until the summer of 2008 and the doctor said I was anemic.

I would never again try to donate blood.  When my Multiple Myeloma diagnosis was officially made, I was warned to never donate blood or blood products.  I remember thinking, "Duh"!

When I started on Revlimid and later on Pomalyst I had to/have to answer a survey every six months or so where I state repeatedly several different ways the I will not donate blood.  Every time I think "Who is the fucking jackass who is trying to donate blood?"

Over the course of my fight to beat back my MM, which can't be cured, I have received blood products.  I don't worry too much because I know that blood is being screened for HIV, -people exposed to Mad Cow, people traveling outside the country, yada, yada.

But lo and behold, just when you think some people have common sense, real life kicks you in the pants.

Gov Brown of California has signed  SB 239 allowing people who are HIV positive to donate blood and not notify the blood bank of their HIV+ status.

Because you see, these poor little HIV+ patients "felt they were being criminalized.''

What?  I can't donate blood and I don't feel criminalized.

Is donated blood some right in the Constitution I missed?

If you know you are HIV+ and you attempt to donate blood, you are the scum of the earth.  And I better never meet up with you.

If your feelings are worth risking someone else's life, you are subhuman and your feelings of inferiority are real.

Wednesday, May 03, 2017

TSA Comes For My Candy... It's War!

Ok, so I am moving from one hide-away to another today.  Flying from PVD to BWI.

I booked early.

I got a good deal.

I was packed and ready to go in time to walk through the apartment a few times to make sure I had everything.

I was here two hours before my flight.

I checked my luggage so I was unencumbered.

Now I fly somewhat frequently and almost always Southwest, so a lot of the time I get TSA Pre-check.  That would mean, my light sweatshirt and sneakers would stay on.  My liquids stay in my one bag (size of a small backpack).  But just in case, my liquids were in a baggie.  So it ends up being a regular check-in.  I take off my sneakers, my socks are pristine.  My sweatshirt is ready to throw in a bin.

Surprise!  New rule!  All candy and snacks must be out of my bag and in it's own bin.

What?

Rewind five hours, while grabbing a few things at Stop & Shop, I bought a dollar box of candy.  Then to save space, I took the box of individually wrapped "Chocolate Bit O'Honey" and dumped them in the bag.

So I had to step out of line, dump my overstuffed bag.  I don't check electronics or prescriptions.  There is no line to speak of, I waved two people around me.

Then someone asks why the candy/snack rule.  The TSA guy says that sometimes food gives a false positive for explosives because of it's proximity to wires (phone chargers, etc.)

Bullshit!

Did I mention it's steroid day?

Monday, May 01, 2017

May Day

Friday was chaos at the infusion center.  I didn't cause it, but I was suffering 2nd order effects. Normally when I have an infusion scheduled, I don't schedule anything else.  They can start late, run late, I can feel crappy, etc.  This past Friday I was scheduled for Pomidronate, a two hour infusion that takes anywhere from three to five hours​.

But just this once I scheduled a two o'clock appointment at the Eye Center in the same hospital complex.

Infusion room was backed up.  I was in the waiting room.  They decided to send me down the hall to have an IV inserted so my tests could get rolling. That seemed a smart move.  But my veins weren't cooperating.  They've been less co-operative as time moves on.  Dr. Miller told me that I need to work with a stress ball to build up the underlying muscle and believe me, I will!

It took several tries before they called in their big gun.  Between that and giving up me left arm they got the IV in place.  It try to keep all the nonsense on my right hand/arm because I am left handed.  Then there is a 30 minute wait for test results. I ran up to the other end of Washington and ran errands.

But sadly, despite their efforts - my actual infusion began moments after 12 noon.

There was just no way I was going to finish and haul ass to Biewend by 2pm.  So the eye doctor's scheduler offered me June or Monday.  So I picked Monday.  But it didn't work either.

And I'll be honest.  The last place I want to be on May Day is two blocks from the Common or in South Station.

I ended up with June.  Sigh.  Gotta get a stress ball.

Monday, March 20, 2017

March 20th

So, if you look back in this blog you'll see how much I love my birthday.  But it isn't always fabulous.  Like today.

Saturday was high energy and I was getting lots done.  Until as I was walking up to Tom's door from the sidewalk, I tripped. I put my hands out and landed on my right side.  The granite step hit right under my armpit and my side.  It took my breath away.

It's slowly getting better, but of course, it gets aggravated when I forget and move a certain way.....or hiccup.....or take a deep breath and heave a big sob because for the first time since 1988, no Frankie.

Saturday, January 28, 2017

Six Months

I've made it six months.  Not a happy milestone.

I am hiding out in Annapolis.  I wonder if that's fair to Tom?

Someone said the other day that now he would always stay young and handsome.  Please... he was always gonna be handsome!

Last Saturday, January 21st would have been Frank's 29th birthday.  I have to keep these things positive for his son.  So I gathered some of his friends and had a party. I know it sounds weird; but it went just as I had hoped.

But I can't be positive today.

Saturday, January 14, 2017

Saturday Afternoon

The holidays were tough.  Thank God for my grandson Frankie or I never would have gotten out of bed on Christmas Day.  But I am glad I did because then I spent New Year's with Frankie and Britt and beautiful, smiling Emma.  And it rocked.  I got bonked, spit up on, licked by a dog, fed & changed Emma, answered "Why?" 57 hundred times from Frankie and I loved it.

And January so far has been stressful chaos with the move out of Rockland.

But now I am in Staunton with Tom.  The most pressing questions are "What do you want for dinner?" and "Have you seen my phone?".

Speaking of my phone, last Friday before the snow storm, a small black circle appeared in the lower right hand corner of the glass display.  Everything still worked and I could use it, as long as I could see that part of the screen.  But slowly Saturday, the spot spread.  Sunday nothing was visible.  So Verizon said that it can't be repaired.  I can submit an insurance claim, pay a deductible and get a new phone.  But I will lose stuff.  To be honest, I don't want to lose any text messages or anything Frank might have sent me.  I know it's silly.  But to buy myself time I just had them switch over to an old, old flip phone that I unearthed while packing and moving.  But no contacts.  So if you are my contact, call or text and identify yourself, lol.

But I can live life without a smartphone.  I don't think I could in Boston.....no Uber app on my flip phone. Or "Next Bus" or "MBTA" or "Kindle".  But in Staunton I have Tommy as a driver and there is a nifty little trolley system here that picks me up two or three doors up the street.  In Boston, my dear friend Shema had to sign into my Uber for me and send them my way.  That would get old fast.  So I have time to think about what I want to do.

But for now, no thinking.

Sometimes I wake up and think "What time is it?  What do I have to do? Am I late?"

But the answer is "Who cares!" and I open a book or go back to sleep.