Lessons learned

My second vacation week is coming to an end with Round 2 of chemo awaiting me Tuesday and I am thinking back on the lessons I learned over these past 2 weeks.

Lesson 1:  no one knows my body better than I do.  I knew the infection was brewing, despite two physicians telling me otherwise.  And that leads me to...

Lesson 2:  be an insistent and persistent advocate for myself.  Had I been insistent with the first physician - a physician's assistant actually - I might have been given antibiotics early in the game.  Had I been insistent and persistent when I went to the ER due to the infection and high fever, I might have been given antibiotics and avoided the week in the hospital.  sigh.

Lesson 3:  BC + D is far more complicated than I imagined.  I went into this new kind of normal thinking that I had diabetes over here in its own space and multiple myeloma over there in its own space.  I've lived with diabetes for so long that I understand quite a bit about it and how to manage it, so I thought I could keep my diabetes in its own little compartment while I learned about multiple myeloma and put it in its own little compartment.  Well, not quite, it turns out.  I ended up in the hospital with an infection because neither my diabetes nor my myeloma could be compartmentalized and they came crashing together to let me know what the new kind of normal would really look like.

You see, I wear an insulin pump and the pump requires changing every 3 days.  To change my pump, I have to find a new site on my abdomen into which to insert a cannula - a thin plastic needle, if you will - that is attached to a thin flexible tubing that connects to my pump.  The pump is programmed to deliver a steady drip of insulin into me via the tubing and the cannula.  As hard as it is to believe, there is no pain at all associated with the pump, the tubing, or the cannula.  The pump can be cumbersome sometimes, like at the beach, but mostly it's just a part of my life 24/7 and doesn't cause me much notice.

The second part of my pump is optional and it's an option I've often chosen in the past.  It's called a continuous glucose monitor, otherwise known as a CGM or sensor.  The sensor is very small, about the size of a quarter, and sits on top of my skin.  It is connected to an electrode that is inserted in much the same way as the cannula for the pump, except insertion...hurts, stings, is not pleasant....did I mention it hurts?  (Yes, I am a big baby when it comes to inserting my sensor!)  But it stays in place for 6 days and it wirelessly sends a blood glucose reading to my pump every 5 minutes.  That means I have to prick my fingers less often to test my blood glucose.  The sensor also tells me if my blood glucose is rising, falling, or staying stable.  This in turns lets me know whether I need more insulin, more food, or nothing at all.  It is very, very helpful in keeping my diabetes in good control during daily life and particularly with exercising and hiking.  I insert my sensor in that nice fat area just at the bottom of my back, right where my pants sit.

And that became the site of the infection when I removed the sensor.  Though I swiped the sensor area with an alcohol wipe after I removed it, the myeloma had reduced my immune system to....well, I had no immune system to speak of.  I had few white blood cells before I started chemo and then chemo zapped what I had to leave me with just a smattering.  And because I hadn't learned Lesson 1 and Lesson 2, I found myself in the hospital, in an isolated room where everyone had to wear masks in my room, everything had to be sterilized and I couldn't have flowers or eat fresh fruit for several days.  I was - new term in my vocabulary - neutropenic, which is a condition characterized by an abnormally low number of neutrophils, the most important type of white blood cells for fighting infection.

So while last week was a terrible, horrible, no good, very bad week (see the children's book Alexander and the Terrible, Horrible, No Good, Very Bad Day) and I haven't quite figured out if and when I'll wear my sensor again, I did learned 3 very valuable lessons:  I know my body best; I must be an insistent and persistent advocate for myself; and BC + D, blood cancer and diabetes, is more complicated that I first thought and I have a lot to learn.  These lessons will be my cornerstones as I move forward.

May I not have to learn all future lessons the hard way!

Scenes from a hospital

I finally made it home from the hospital!  I thought I was going in for an overnight stay; next thing I know, I'm leaving 8 days later.  That was quite unexpected and quite depressing, as you probably gathered from my previous entry.  There were, though, a few humorous moments after I started to get better.  I thought I'd share them with you.

Scene 1
FF (family/friend):  Now the most important thing for you right now is to get a good night sleep so you'll feel strong tomorrow.
ME:  What are you - Marcus Welby?

Scene 2
ME:  Pass me the Dinamap.
FF:  What's the Dinamap?
ME:  The blue machine over there.
FF:  That's for the nurses.
ME:  I know, but I've been watching the nurses.  I know how to use it.  I want to take my temperature.
FF:  That's not right.  You can't do that.
ME:  Ok.

Scene 3
ME:  Pass me my pocketbook, please.
(it gets passed to me)
FF:  What are you doing?
ME:  I've got my own thermometer.

Scene 4
ME:  I think I'm getting feverish again.
NURSE:  Your temp is only 100.3.  I'm not treating that.
ME:  But that's been my pattern.  I hover at 100 then quickly shoot up to over 102, have the sweats and then the chills.  I don't want to go through that again.  My body has had enough!
NURSE:  I'll come back in an hour to check your temp again.
(exit Nurse)
ME:  Pass me my pocketbook, please.
FF:  What are you doing?
ME:  I have my own tylenol.

Scene 5
NURSE:  See, your temp is down to 99 now.
ME:  Why, yes, yes it is.  ;-)

Scene 6
ME:  Pass me my pocketbook, please.
FF:  What now???
ME:  I have an extra hot pack in there.
FF:  ??????????
ME:  The nurse brought me 2 and I only used 1, so I saved the other.  Just in case.  This is a 'just in case' moment.

Scene 7
Nurse enters at 11pm with my calcium pill, an acyclovir pill and a cup of water.
NURSE:  Here are your pills.  I'll be back in a few minutes with the IV med.
(exit Nurse)
ME:  Here you go (to FF).
FF:  What is this?
ME:  My calcium pill.  It's too late and too big.  I'm not taking it.
FF:  Have you not been taking your pills?  Are you hiding them??
ME:  No, of course not.  I'm just not taking this one.
FF:  Yes, you are.  Right now.
ME:  Pass me my pocketbook, please.
FF:  What are you doing???  You are not putting that pill in there!  Take it now!
(I dutifully take the pill).
FF:  Wait until I tell your family you're hiding pills.  You're in big trouble.

Scene 8
FF:  Don't get your hopes up.  You may not get to go home tomorrow.
ME:  I'm going home tomorrow.  Now start packing up my stuff.
FF:  You're going to be disappointed if you can't go home.
ME:  I'm going home tomorrow.  Are you going to help me pack?
FF:  I'll take a few things, but try not to get your hopes up.
ME:  I'm going home tomorrow.  One way or another, I'm going home tomorrow.  All I need is my pocketbook :-)

Rated R: for strong and foul language

(I apologize for the language but some things need to be said)

Fuck you, cancer. That's right - I said fuck you, cancer. You almost had me this week....almost.

You did a superb job of reducing me to a heaping mess of constant tears. You excelled at beating up my body and delivering mighty rounds of pain. You collapsed my veins so that I had to have a foreign object - a PICC line - inserted in my body. You dosed me with x-rays, you filled me with countless drugs, you spit on my way of living. You robbed me of my vacation week. You brought me to the point of wanting to stop all treatment and just go home. Even now I feel you swelling my ankles and knees.

Yes, you almost had me......but you missed. You failed because you suck.

Yeah, I know you can and will fight harder and meaner in the future. It's ok. Bring it on. You picked the wrong person to screw with.

Because underneath your nasty, poisonous, destructive cells is a strong and healthy body that I have nurtured all these 51 years. And joining that is a strong and healthy spirit that I have cared for all these years. And wrapping my body and spirit is a strong and healthy faith. This is me. This is who I am. And I've got a lot of people to support me when I stumble along the way.

So come on. You want to wake me several times a night bathed in sweat? Bring it on. You want to rouse me at any hour just to reduce me to tears? Bring it on. You want to bring me to my knees and force me to question my beliefs and way of living? Bring it on. You want to be my dance partner for a turn or two? Ok, let's go, the music is playing and now I'm ready. I have too much to do in my life to waste it dancing with you, so let's get it on now.

By the way, your taste in music sucks. Fuck you, cancer.

A week off is not necessarily a vacation

I was so looking forward to this week! A whole week without those drugs being poured into my system. I thought this would be a week to detox, get a little exercise, do a little work, clean the garden a bit.

I couldn't have been more wrong.

'Vacation' week started Tuesday and I was readmitted to the hospital on Tuesday, brewing a nasty infection. And here I remain, with a very slight possibility of going home tomorrow. Saturday looks better. So much for a vacation.

It's been a challenging week: I had a reaction to an antibiotic; my veins are completely shot from IV attempts (7 attempts for 2 IVs); one of the IVs went bad before its time and saline burned through my wrist; and both forearms are quite bruised. I've been poked and prodded at all hours of the night and day, and have had 'assessments' done by students from 4 different colleges. And I haven't had a shower since Tuesday. Now tonight I see I have the young twenty-something nurse who, at last visit, called me 'chickie' and told me not to cry. It's going to get ugly around here if I hear 'chickie' even once tonight.

Chemotherapy was easier, much easier.

Silver lining: my infection is clearing and.....life WILL get better. It's just been a very, very bad start.

Mostly, I just want to go home and sit outside in the sun with my cats.

A new kind of normal

I've had type 1 diabetes for 24 years.  I've had multiple myeloma for 19 days.

In 19 days, I've tried to absorb as much about multiple myeloma as my mind will hold and I've gone through my first round of treatment.  'Treatment.'  Chemotherapy.  It's a difficult word to swallow.  Much easier to say 'treatment' or a visit to the 'cocktail lounge.'  But in the end it's chemotherapy.  I still shudder in amazement.

In 19 days, I've gone from a person who takes few medications - just insulin, eye drops, and the occasional vitamins - to someone who has Dexamethasone, Zofran, and Velcade pumped into her 4 times in 2 weeks, takes the powerfully strong Revlimid for 14 days, has pills for gout, shingles, sleep, and 'digestive issues,' in addition to insulin, eye drops and the now very regular vitamins. And I've had 5 units of blood infused to boost my red blood cell counts.

Still, I count myself lucky.  It could have been a worse diagnoses.  Multiple myeloma may not at this time be curable, but it is very treatable and I live a short distance from Dana Farber and Massachusetts General Hospital, leaders in MM research.  I've got a great hematologist on my team, along with a fabulous diabetes team from Joslin  Diabetes Center.  I am optimistic!

Today my family and friends are joining me in accepting this new health challenge.  We've lived through the trials and tribulations of diabetes - the highs, the lows, the A1Cs, the injections, the pump - that's been our normal for 24 years.  Now we add chemo treatments for 2 week periods, understand there will be times of extreme tiredness and extreme activity, a flushed face and the occasional fever, and high blood sugars for 24 hours after a treatment.

There is also a house to maintain, a family to support, and work to be done.  There are parties to plan, mountains to hike, celebrations with family and friends.  Life goes on.  It's just a new kind of normal.