No Hugs and Kisses Please.

I generally don't leave the house for anything but doctors appointments or treatments.  I hate the way I look. My hair gets thinner and thinner every day.  I've got that weird dry cancer skin, moon-face from all the steroids and a relatively unattractive PICC line in my left arm.

I am not interested in platitudes or lectures about how beauty is only skin deep.  This is MY cancer and I get to feel however the hell I want, thank you very much.


But today was bright and sunny and chilly so I felt inspired to go out.  I asked my husband to come with me to the supermarket and off we went.  I tried to fix my sunglasses on top of my head so that my hair wouldn't look so sparse and I might just be able to pull off "hip" if you saw me from a distance.

Well as hubby and I stood in the bread aisle discussing the merits of rolls versus croissants, a woman comes up and says hello to my husband and gives me a warm peck on the cheek and a very brief squeeze of the shoulders.  Her head is tilted in that way.  You know the way I'm talking about: the "I'm sorry to hear about your cancer" head tilt. The eyes are appropriately hooded and the half smile is modest.  Oh you poor thing. 

I don't need anyone to agree with me on this.  I know for a fact that this is what motivated a perfectly unnecessary (and unwanted) side kiss from this broad.  How can I be so sure?  Well perhaps because we never really got along.  I always thought she was a stuck up asshole and God only knows what she thought about me!  We remained cordial because our kids were in the same class but that was it.

I felt utterly exposed at that moment and no matter how I tried to push it away, I felt myself being lit, then consumed by gloomy sadness.  I asked my husband for the car keys and walked back to the car while he waited on line.  It felt like the longest walk.  I kept feeling like I might be accosted by a parade of neighbors, old friends and an assortment of assholes I would rather avoid.

Finally, safely hidden away in my car, I cried.

UPDATE TO: "Get a PICC line", they said. "You'll love it", they said.

Three days after my dressing change I ended up getting it wet in the shower.  I blow dried it immediately and didn't think it was a big deal but then I thought:  'Don't be an idiot....with your luck you'll contract the Bubonic Plague!'  So I called Sharon, my nurse who is new to the nursing game and shadows more experienced nurses.

She told me to text her a picture of the dressing, which I did, and she said she'd be right over with a senior nurse.  When they arrived the senior nurse looked at my dressing and asked me, "Do you think you accomplished anything by blow drying this?"  Ummm......

She turned out to be quite funny, quite snappy, and quite smart.  I mentioned that flushing was also pretty difficult and she looked at my PICC set up and said "This has got to go.  Did you see this huge kink here?"  Ummm....  She told me that's what I need to look for whenever I have problems flushing the line.

I told her about my heart palpitations and how I slept.  She explained that that can happen with some patients especially people like me who sleep with that arm tucked tightly beneath their head. 

I told her my arm hurts with all those hard plastic pieces digging into my skin and she said "No wonder!" Quickly and efficiently she removed one of my extenders (For some reason I had the 2 lines attached to 2 short extenders which were attached to 2 long extenders). The way she hooked it up, the extenders were not as long as they had been but still long enough to get the job done, and all that extra plastic, tubing, caps and clamps were suddenly gone.  She then added a padded bandage to the underside of my arm to prevent the remaining plastic pieces from digging into my skin.

   I instantly felt more comfortable; a lot less pain.

Wait--there's more!  Without my even telling this magical nurse that my arm band constantly slides down into the crook of my arm, she noticed the imprint of the netting there and said, "I see your PICC cover keeps sliding down.  Here, I'm gonna show you a better way to do this."  And she did!  My cover NEVER slips down now and overall the PICC line situation seems a lot more tolerable.  I still don't love having a PICC line but maybe I don't hate it anymore either.

  

Who knew?

"Get a PICC line", they said. "You'll love it", they said.

"Get a PICC line", they said.  "You'll love it", they said.  Well I got a PIC line and I don't love it.    I mean it's not like I had any real alternative given that most of my veins have collapsed but even still, it is not what I expected.

After waiting for over an hour I was brought into a room similar to that of an X-Ray room or the place where you'd have a CT scan; very cold and very sterile.  A bored older doctor came in and gave me the spiel about what they were gonna do, the risks involved etc. and then quickly left with an air of irritation.  They had me lay on one of those hard, cold hydraulic slabs, covered me with blankets and raised to me to the standing height of the doctor.

Above me there was a giant ultra sound machine and someone came in and strapped my arm to a board.  Here we go!  The "installation" was more like a mini surgery.  Every part of my arm was covered in blue cloth except for the square of flesh that they planned to use for the PICC line.  Next they inserted a painful needle and injected me with something that burned like hell!  Apparently, this was for pain.

Finally they inserted the PICC line and I was free to go.  I went straight to chemo from there so sure, it was easier than the usual hunt for a serviceable vein, but here's what I didn't know:

1. The PICC line has TWO separate lines coming out of the one port
2. The area where the line was inserted still hurts 2 days later
3. In order to flush the line I need extenders for each line.  The extended tubing reaches my wrist and needs to be wrapped around my arm and covered with an armband they provided, which is very uncomfortable
4. The PICC line may affect your heartbeat
5. Saran Wrap DOES NOT WORK to keep your dressing dry during a shower even if your arm is being held mostly held outside the shower.

So two lines means two flushings every morning with saline and heparin.  The extenders are long and supremely awkward to wrap all that tubing around your arm and with all of the hard plastic parts it's painful all the way around because you can't lean on your elbow or bend your arm fully without encountering some clip or hard part that digs into your skin (see photo above).  Finally, my heartbeat. The first day I had the PICC line installed I felt my heartbeat racing.  Turns out my blood pressure was high so I had to rest.  After resting, my blood pressure went down but my pulse was still racing. 30 minutes and an EKG later I was deemed fit to go home.

But my heart continues to race periodically and it is the worst feeling!!  When the nurse came out to change my dressing, she suggested deep breathing to bring more oxygen to the body so that my heart would not feel like it had to pump faster.   What?!  I mean damn, I feel like we should all be a little more concerned!

And I am supposed to do this for the next 6 months?!?!?

You Learn Something New Every Day

So today I began my second round of Vidaza.  My first round was last month and that's when my platelets dropped to 20 and I needed a transfusion.   I remembered all my MDS friends telling me this would happen during the first or second week so I was totally prepared.

Naturally, I had a MAJOR reaction to the platelets and broke out in hives which they couldn't control for over an hour!  Fine.  Whatever.  Honestly, nothing surprises me anymore.  Because of my reaction, they only gave me half a bag of platelets.

Half a bag of platelets turned out to be plenty because at my next check-up, my platelets were up to 38!

WOO-HOO, SOMEONE ALERT THE MEDIA!

Well.  You can imagine my surprise when this week my platelets were back down to 22 and my doctor asked me which day I'd like to do the platelet transfusion.  Seriously??!?!?  No day.  I would like to choose no day please!  I don't know if I've mentioned it before but transfusions gross me out to the point of nausea.  I can't even look at the bag-o-platelets or I start gagging.

I don't understand.  I thought your platelets drop only the first time you have chemo with Vidaza. You know, the very first time. Turns out that I misunderstood.  Your platelets DO drop the first week you start Vidaza, only it happens EVERY first week you start Vidaza!  That means transfusions once or twice a month!!! (Please Note: After I post this I'll be taking a Zofran!)

So tomorrow I get transfused again and I have resolved to consider violence if they don't give me some SERIOUS pre-meds to avoid another hive debacle like last time.  The only consolation is that my doctor has allowed me to keep my IV in all week because I really have no veins left so we won't have to go through the dreaded stick and poke and thread followed by a band-aid and a call for another nurse to try.

My doctor told me today that I need to get a pick line.  Yet another foreign thing going into my body which also grosses me out. And if you are wondering, yes, I did break from writing this post so I could take a friggin Zofran!  The reasoning behind this is that chemo destroys your veins.  Maybe everyone else knew this...did you?!

Well I didn't.  Guess you learn something new every day!

WIGGED OUT!

I've been watching YouTube videos for months trying to figure out how to "slay" my wig once I get one. My transplant isn't until September but my hair seems to be coming out faster and faster these days and looks so thin and flimsy, I thought why not? I would like to leave the house looking somewhat put together every now and again--is that so much to ask?

So today I figured, let me go out and see what I can see. It was over 75 degrees today which feels like 105 to me. I was alternating between my head being set aflame with a hot flash and just regular sweating. But I'd come this far and today was a "good day" and I never know when the next one is coming so I didn't want to waste it.

First thing the lady in the store says is, "Miss, do you have a wig cap?" I didn't, so I bought a package for $1.00. As I tug on the wig cap I'm trying to cooly wipe the sweat dripping down my neck and behind my ears as inconspicuously as possible. As I look around at the myriad of wigs I feel the wig cap creeping up. I tug it back down only to have it creep up yet again. I can't figure out if my head is too big or too small? I hustled the wig on quickly before the wig cap could roll off completely. I tried on a straight, black wig; human hair; nice. And the hair was curl-able so that was great too.

I feel the wig cap roll to the top of my head underneath the wig and I sigh inwardly. Sweat drips down my hair, my breasts, my armpits. I needed to get back in my car and blast the air conditioning before I melted into a puddle of hair and sweat! I quickly removed the wig and told her I'd take it, the price was great--$24.00! If I wasn't so hot I would have gotten another one! As I mop my forehead and shove the hated wig cap into my handbag I shake my head, "$24.00 is really a terrific price." The woman looks at me, "Um, I'm sorry Miss but the price is $240.00." She points to the price and I squint until I see it. Yup. $240 dollars.

Needless to say, I left the store empty handed. As I drove home, I thought to myself, why would someone spend so much money to be so damn miserable?!!! Are other women not hot wearing a wig? Does their wig cap and wig not ride up? If that's true....

WHAT'S THE MATTER WITH MY DAMN HEAD?!?

The weak

I learned today how truly weak I really am.  My MDS has advanced slightly and I am now scheduled for a transplant (God willing) later this year.  I was diagnosed in June 2015 and since then it has been nothing but one big cluster fuc*.  It's been one of those "whatever can go wrong, will" kinda deals and my husband has been there through all of it.

I'm one of those people who never cries.  I just don't like crying--and I don't like people who cry either.  Yet I have cried more in the last 7 months than I have in the past 45 years!  My husband has comforted me every time we got another piece of bad news or when I've simply erupted in a hail of lava tears that I just could not seem to stop.  There were times I've cried non-stop for 2 hours!  And I'm never ready for it, you know?  It just . . .happens.  And my strong husband is still right there, holding me, wiping my tears away.

My husband is a strong and gentle man.  Since I've known my husband he has lost his grandmother, both of his parents, his cousin (who may as well have been his brother since they grew up in the same household) and numerous aunts and uncles.  Yet, he never really cried about any of it--at least not that I know of.

Today we had to put our cat, Charlie, to sleep.  Me and my younger son were pretty much out of control crying.  Our 18 year old shed a modest tear or two and my husband held us all together...as usual.  Yet when we got in the car with our empty cat carrier, minus another member of our family, I saw the tears dropping as my husband continued driving and staring straight ahead.

My heart stumbled in my chest and my whole body hurt.  And my soul hurt too.  All I could think of was how to stop it.  Can I buy him something or give him something or somehow turn this shit off please?!!  That's when I realized my weakness.  I don't think I could ever hold him together the way he does with me.  Seeing my husband cry puts me in a panic; undoes me completely.  I am just not equipped to handle the feeling that come crashing down on me when I see my husband cry so I focus solely on how to make it stop.  I came up with all of us going to Coldstone.  Eating has always been my vice so it was a natural default for me.  And who can cry while eating ice cream?

So today my utter weakness became apparent, but what really mystifies me is how has my husband been able to endure so much loss and sadness and all of my tears without breaking?  God must had mapped out a plan in advance.  If someone had to get cancer in our family, who should it be?  The younger one already has Type1 diabetes so that would be sucky.  What about our 18-year old?  Well he already has multiple challenges and would not be able to manage it.  So it's down to me and my husband.  God knew I was the weak one (despite the fact that I've always worn the "strong one" t-shirt) He knew that if the tables were turned and my husband was the one with the cancer, I could never hold our family together.  Because my husband is my weakness.

--and my greatest source of strength.



RIP Charlie Simpson - 2016.