Blessings, silver linings & some pain to go along with

Merry Christmas Everyone!  I hope this missive finds you all happy & healthy.  Did Santa bring you new toys? 

 

This has been a tough year for me, but I still have more than my share of things for which to feel thankful.

 

My Oncologist, Dr. Pok, & the nurses at MCV have been a Godsend.  I miss my nurse, Maria, who moved to work at another hospital.  Not only are these people truly compassionate, but they are funny, quirky & delightfully sarcastic.  I will miss them once this treatment is done.  After a year of immunotherapy I consider them more than friends.  I consider them family.  Don’t think for a moment that I’ll ever forget you!  The women in the chemo lab are amazing.  I’ll be stopping in to visit periodically so you won’t forget me.  Also I’ve expanded my joke repertoire & my knitting has greatly improved over the last year as well.  I’ll get everyone’s hats done eventually.

 

My oncologist also hooked me up with a fabulous PT, Andy.  He is working to break up the scar tissue in my right arm & arm pit from the various surgeries.  Needless to say I am mostly happy to have him working me over.  There are times when I want to smack him when he hits a bit of unhappy tissue near the bone.  I have not yet cried but I have issued a few choice words in his general direction.  Jill, I am quite sure you know what I’m talking about as you’ve had your share of scar tissue to work on.

 

I could not have done this without each and every one of my friends & family.  Your kind words & support have been wonderful.  I feel truly loved for the first time.  Even those of you who are far away make me feel loved.  The support I’ve received via Face Book has been spectacular.  I will never be able to adequately express just how thankful I am to have you all in my life. 

 

The treatment has taught me just how strong a person I am.  Isn’t it funny that it takes something really difficult to explore yourself and come out thinking, “Hey, I’m pretty awesome and stronger than I ever thought possible.”  Going into the treatment, I had no idea what it would entail.  I didn’t lose my hair so I shaved my head instead, and I liked it.  I can honestly say this is the hardest thing I have ever done.  I’ve never felt this sick in my life, nor have I ever felt so much support from friends & family.  This is when you really find out who your friends are.  I know I haven’t been up for much visiting, but that will change in February or March.  As I get my strength back, I’ll be making my rounds to see everyone.

 

This is also when you find out the quality of your co-workers.  I have to say that H&A has the best quality of people with which to work.  Even though my chemo brain makes me have to ask the same question multiple times, everyone has been spectacular & patient with me.  I would like to take a moment to say, “Thank You for your compassion & understanding.”

 

Now that the nice stuff is done I’ll fill you in on what happens when you have a guy working to reduce scar tissue.  Fucking Ow!  Seriously that sentiment doesn’t do justice.  This guy thoroughly enjoys what he does.  He smiles every time I flinch in pain.  Wednesday he tried to scratch behind my left eye by way of my right armpit.  It didn’t just fucking hurt for a little while either.  I could still feel it this morning when I was trying to stretch out my shoulders.  Holy crap on toast!  I may have come close to levitation during that treatment, I can't be sure as I was in pain.  I’m pretty sure he is working to increase my pain threshold by at least triple.  Fine by me, but damn!  Thankfully he almost went easy on my today, no poking around in my armpit.  It still feels like there is a steel ball stuck up in there.

 

Only 14 treatments left!

 

After everything is over next year, I think I’ll move on to taking over the world.

 

I love you all!

Hugs,

blk

Whining

Right then, I’m just not feeling myself today.  After some crazy number of weeks, (44 I think,) of treatment I am feeling somewhat defeated.  How craptastically insane is that?  I have 9ish weeks left.  The fucking light is at the end of the longest damn tunnel in the world.  All I want to do is curl up with my favorite blanket, my dog, & cry.  Only problem with that is that my sweet girl isn’t here anymore to help me feel better.  I’m tired of feeling sick & tired.  My stomach aches constantly, I have absolutely no endurance & I just want to feel normal again.  I want to be able to climb the stairs without being so out of breath by the time I get to the top that I can’t open the damn door.  I am so over feeling weak.  I want food & water to taste like it is supposed to again. 

I know, I was out of the Lexapro for almost a week, & damn!  This really sucks stinky socks.  Now I know why they put me on an antidepressant in the first place.  I picked it up today btw, so I hope to be back to my normal, “FUCK CANCER,” self in a day or three.  In the mean time I am battling the desire to curl up & cry.  It sucks that we don’t have a wellness room at work where I can go release the pressure behind my eyes.  I can’t stop them from leaking, but I can’t totally break down here either.  I work with mostly men, and you know they can’t handle crying of any sort.  They can barely handle half of the shit that gets thrown our way.

They don’t need to see me like this.  Hell, I don’t need to see me like this.  Yuck!  Still, I know the end is near, I just have to buck up for another 2.5 months.  I can do this, I can.  I need to finish this so I never have to go through any of it again.  In the mean time, I’m going to cry for awhile, and maybe whine a little more. 

Side Effects Update

Thursday:

Have I told you lately that I really don’t like IV’s?  Well, I’ve had two this week so far, (not as bad as the 3+/week in January.)  My ride in the MRI machine was nothing if not loud and shaky.  Thank heaven they gave me a free pair of earplugs.  Hmmm, they might be included when I get the bill.  Dang, oh well, earplugs are cheap right?  Right then, the ride.  So, I suspect I was in the machine for about 20 minutes total with the ka-chunk-ka-chunk-ka-chunking and the shake-shake-shaking.  The darn thing would pause for a minute and start up again and I’d twitch again.  It was a bit uncomfortable in that tube, but I closed my eyes and tried to imagine relaxing in a lovely meadow.  It didn’t work, but I kept trying..  The contrast for my second ride was friggen cold, I think they had just taken it out of the refrigerator.  I am happy to report that I got a pre-warmed blanket for the ride.  That was the best part of any MRI as that room has to be kept really cold to keep the machine from overheating.

After my ride in the very loud & shaky machine the nurse removed my IV, (Yay!) and the room didn’t completely spin when I stood up.  I’m taking that as a very good sign.  Getting up too quickly still makes me woozy so I try to move slowly while the earth evens out beneath my feet.  It is getting better and there is no headache today.  Woo-Hooo! 

Not a long missive, but there you go.  More info will be forthcoming when I get the news from the Medical College of VA this afternoon.

Friday after work, but before treatment, I went to a barber to have my head shaved, like a real shave.  I had no idea how luxurious getting shaved was.  I got to pick out the shaving cream by scent.  The gentleman warmed it and applied it to my head.  Man that felt luscious, then he applied a hot towel, again wow!  Then after a few minutes to let my head soak in the goodness he put on some more shaving cream and shaved my head.  Talk about sexy!  I have a beautiful cranium.  Now I know how my brother’s feel, and it is good!

This was the best weekend I’ve had in months!  I felt so good I grabbed my camera and went out into the world.  I didn’t manage to take any pictures, but I did have some fun.  I had breakfast Saturday morning – Bacon waffles = yum!  Then I went shopping with my very good friend Mary Bergman.  She has an eye for jewelry in pawn shops.  I splurged and got myself a ruby necklace.  I probably spent too much money, but I love it!  Now I just need a bracelet to match.  Next time.

Saturday I went and saw my friend Karen & have a beer.  God I’ve missed her!  I even managed to get some puppy loving in.  What a joy to be out in the world.  Then I went home and relaxed in a nice warm tub with some salts & heavenly scents before bed. 

I hope your weekend was as nice as mine.  I am going to savor it as I'll probably be back on treatment tonight.  It'll be tough, but nothing worthwhile is ever easy.

love and hugs to all!

blk

More side effects? I Decline, thankyouverymuch.

A short update for your Wednesday.  I know I’ve been remiss in my updates.  I hope to get on that again soon, like now actually.  My brain isn’t firing on all cylinders today so I thought I’d ramble on e-mail for a bit.  Maybe I can get it to wake up and fire up a few cylinders in the process.

I do love my Dr. & his sense of humor.  We had a lovely exchange Monday morning.  His sense of humor only goes so far though.  I am scheduled for an MRI of my brain tomorrow morning.  I had a whopper of a headache yesterday, it kept me home from work.  That got them worrying along with the dizzy spells, hence the MRI.  I’ll have yet more proof that I do in fact have a brain – Yay!  Though it has been confirmed in several scans thus far, it is always nice to have confirmed again, and again. 

I had a few really good weeks, meaning low side effects.  Then over the weekend I started having dizzy spells.  This isn’t normal for me unless I have some kind of inner ear thing going on, so I mentioned it to my Dr.  They say laughter is the best medicine, I tend to agree with that notion, thankfully so do my medical providers.  We try to joke when we meet.  Monday they said I looked pale so they gave me a Liter of fluids while I waited for my treatment.  I tried to drink water yesterday, I probably still didn’t drink enough.  Hell, I was in the bathroom half of the day so maybe I did get enough. 

Monday’s treatment was a little rough.  I hadn’t had the full gambit of side effects since May so it was a bit of a surprise when the chills started.  The fever hit around 11:30 or so but it only went as high as 101.4^oF.  I texted in my temp anyway.  My nurse likes to get texts from me when exciting things happen.

Work has been incredibly supportive of my treatment thus far, thank heaven!  They are working to make sure I don’t do overtime.  Honestly I don’t think I’ve put in a full 40 in months.  I try to work extra on Tuesday & Thursdays to make up some of the time, but my energy hasn’t been up enough to do so.  I imagine I’ll be using the rest of my vacation time to finish out treatment.  It’ll suck, but that’s life.  Here’s hoping I won’t have any more crazy side effects showing up for the next 5.5 months.  I’m going to take my lesson in all of this as: don’t get cancer – again!

Other than that, I think I’m doing pretty well.  I’m still sporting no hair, though it needs trimmed.  I’ve spent the last few weeks feeling incredibly lazy and it is about 3/16” long.  I still look foxy fine!  Yeah, that might be a bit of an over statement, but I feel pretty good about my lack of hair.  I managed to find a nice & inexpensive pair of big gold hoop earrings to go with my lack of hair.  Andrea sent me the best soft fuzzy brown hat on the planet.  It kind of makes me look like I have hair.  Maybe I’ll get a photo to include in this missive so you can see how awesome I look.  Feel free to give a good chuckle. 

First time bald @ Irish festival with the Bergman family.  You know you have an awesome best friend when she shave’s her head with you.  I think we look fabulous!

I love this photo & think it needs to go on my wall.  Mary – Thoughts?  That was an awesome day! 

This is with a smidgen of hair.  I’m not usually photogenic so forgive the face.  Yes, I do need to trim my hair back down to the scalp.  I really like the no hair look & it is so freakin easy.  A small bottle of shampoo lasts & lasts.  Yes, I need a trim.

Further updates since I wrote the above missive..  I was denied treatment today as they are concerned about toxicity.  They want to see what is up with the MRI tomorrow, then we will resume treatment Friday, I hope.  This means Friday’s treatment will be full of SUCK!  Having 3 days off can be painful.  I’m hoping it won’t be as painful as the 5 days off I had in May or the 5 days I'll have off for Labor Day.  I tried to convince them to continue, but they said no.  The dizzy thing was worrisome.  My other nurse, Jane, said she would call me tomorrow, or have Dr. Pok call me tomorrow.  Someone will call me tomorrow.

Ah well!  Such is life I suppose.  Now for a nap!

Be well my friends,
blk

Grief

I don’t use my front door often.  Sometimes packages will sit there for a few days without my  noticing them.  I should really check daily, but life intervenes and I am easily distracted.  I managed to notice it, brought it in, and wondered what I had ordered from Amazon, I hadn’t ordered anything, had I?  It was a package from a former high school classmate who read on FaceBook that I had just put down my dog, Abby.  Abby was my best girl.  Anyone who has beloved pets knows that there is a special bond between a dog & his person.  No one shows love like a dog.  They are happy to see you every day, no matter what.  They openly show their love for us, they hold nothing back.  They don’t judge, they only love.  Animals are so much more loyal than fickle humans.  We are flawed in that respect.  Animals are honest to a fault.

Anyway, Shaye sent me the most amazing book, “The last will & testament of an extremely distinguished dog, by Eugene O’Niell.”  It took me time to read it as it makes me really miss my big girl.  I read a bit & cry a little.  I am sure you already know that I am a long time sap.  This book says so eloquently what animals continually show us.  We have much to learn about unconditional love and we should take the time to learn these very important things in life from them.  Things are just things.  What is important is your relationships we have with one another.  They are patient teachers, even with those of us who are stubborn, or a little slow.  Anyone who has lost a beloved pet needs to read this book.  We need to spread love & faith in the world.

I so miss my girl, but hesitate to get another dog any time soon.  It would be unfair of me to replace my girl when I am still grieving her absence.  Also, while undergoing treatment it would be unfair to get a dog when I am so tired I can’t walk him or her.  It wouldn’t be fair of me to adopt another dog at this time.  I’ll wait until my heart doesn’t hurt so much.  I’d also hate to compare a new pup to my wonderful girl.

I brought my girl home Monday last week.  In the book there is a page that says; “Whenever you visit my grave, say to yourselves with regret but also with happiness in your hearts at the remembrance of my long, happy life with you; ‘Here lies one who loved us and whom we loved.”  When I finally find that final resting place for her, I will remember this book.  Some day I'll adopt another dog.  I am sure, much like Abby, he or she will find me.  It will take time, but I will adopt again.

Thank you Shaye!  I will never realize the depth of your grief for your daughter.  I can't pretend to know what that is like.  I would never presume to try.  You gave me a comfort in my grief with your kindness.  For that I am grateful.  Please let me know if I can do the same for you.  I miss my girl every day.

When we grieve those we love, we carry them with us always.  We bring the love they gave us into our hearts, it is right that we should spread that love to others.

Love & many, many Hugs,

blk

Memorial Day

First off I’d like to apologize for not updating anyone for a long while.  I’ve been battling nausea quite a bit.  I have yet to lose the contents of my stomach, so that is good.  Zofran dulls it a bit and the Compazine helps me get to sleep when it is keeping me up, but nothing completely kills it, & they have their side effects as well.  Unfortunately there are days when it is pretty bad and neither drug really touches it.  Sundays are usually the best day as I’ve been off of the treatment for an extra day, but I am hoping today is great too.   No Treatment on Memorial Day, the clinic is closed.  This of course means that Wednesday’s treatment is going to be hard on me. 

In February I took a 2 week break from treatment.  When the maintenance phase started up, it started with a vengeance.  On the up side, I lost about 3 pounds overnight shivering, but I’d prefer not to have a repeat of that horrible night.  I haven’t had a full 5 days off since February.  I am hopeful that it isn’t as bad as I fear, but I’ll still prepare for it being awful. 

I forgot that I haven’t had coffee since Friday = no caffeine.  It took me a bit to remember why I had a headache.  I finally brewed a pot of tea and it is finally starting to go away.  My head is cold so I need to go put on my hat.  Today’s hat is a gorgeous mottled brown from my friend Andrea.  It is lovely & soft and actually fits my little head.  I also kind of look like I have hair when wearing it.  I’ll have to switch to a sun hat as I’ll be outside this afternoon. 

So, today I’m heading off to a friend’s house for some grilling goodness.  I’m in charge of salad & watermelon.  I will try to select a good one.  Watermelon picking is not high on my list of talents though.  Wish me luck.  I am going to try something different with the salad.  In November I put up jars of fire cider.  Today I am going to strain them, they should have been strained and sealed in January, to try in vinaigrette. 

For those who do not know what fire cider is; you take an onion, chop it up & put it in a mason jar, to this you’ll add an entire head of chopped garlic, 3 tablespoons ground turmeric, the zest & juice of an orange, ¼ C. chopped fresh horseradish and a few chili peppers chopped.  Top it all off with cider vinegar, put a lid on & put it in a cabinet to age.  You’ll want to pull it out once a week & shake it up just a bit, no need to go crazy.  You just want to mix it a little so all of the flavor & healthy goodness comes out of the ingredients.  After 8 weeks or so, strain off the solids and put it back in your jar.  Not only is this yummy if you are a spicy individual, but it is really good for you too!  Who says healthy has to be tasteless?

I’ll do a simple vinaigrette with Olive Oil, salt & Pepper.  I am confident this will be loved by the adults and reviled by the children.  They’ll get their own boring salad dressing.  Ah well, I can’t please everyone.  Though in supplication, I did make hibiscus tea which they love.  They especially love it with a strawberry cut up to make it festive.  I’m calling it kid friendly sangria!

Well, I should get going, much to do!  I hope everyone has a happy Memorial Day.  Don't forget to hug a soldier and thank them for protecting our way of life.  If you are driving far, please drive safely.  I love you and would miss you if you were gone.

Love & Hugs for everyone!
blk

I got a negative score - Woo-Hooo!

Sometimes a negative result is awesome.

It has been awhile since I updated my blog.  My biopsy blissfully came back negative.  It was merely a reactive node.  Hooray! 

I tried to trim my yard today, I only got about 20% done before I ran out of steam.  I think the worst part about treatment is losing my endurance.  I used to be able to do the whole front & side yards in about an hour.  Now I run out of energy 20 minutes in.  That sucks!  I miss being able to dig a whole garden with a digging fork and not run out of team.  I did manage to get the eggplant & about half of the tomato’s potted, but I have a long way to go before I’m done.  I might end up calling a lawn service for the summer. 

Cancer sucks!

Biopsy Day

My dear friend Ruth picked me up early & we first stopped in to the Dalton Clinic for my treatment which takes about an hour.  Then we took off for the gateway building.  After a few false leads, we finally got there.  That place is like a maze.  Every time I need something else done it is in a different part of the maze.  I’m getting better, but I doubt I’ll ever really learn my way around.  They keep renovating and I keep forgetting to bring a bag of bread crumbs.

We finally got to the right place and checked in.  Apparently they didn’t really have many beds available in the radiology unit so I got to go up to a private room on another floor.  Go me! 

I got undressed and put on the  oh so fashionable hospital wear designed to flash the world your hiney. The nurse came in and gave me an IV, my favorite thing in the whole world!  Then they wheeled me down to a very big room with cabinets lining one wall and a sonogram machine in the middle.  Sorry Brian, the cabinets were locked and I was on a table.  Maybe next time.

I should probably describe where this naughty lymph node is located.  It is just inside of the left leg where it attaches to the torso, you know where I’m talking about, the left side of my privates.  This is the most action that area has seen well, ever.  There were 2 doctors, 2 nurses & a resident staring at my privates.  It was unnerving.

The nurses were really nice and we got started and I got prepped.  Carol gave me a lovely cocktail so I wouldn’t feel anything but I was awake the whole time.  Your eyes go wonky for about 30 seconds then everything evened out.  My nurses used the sonogram machine to find the right lymph node.  That took a few minutes as the machine had clarity issues.  They got that ironed out and took a few pictures.  Then the doctors came in and I got to see the gargantuan needle they were going to use.  This needle was significantly larger than the one Daddy uses to inoculate the cattle.  They actually had to slice a little to get the needle in as this was just a guide for the needle that they would use to take the tissue.  They used the sonogram machine so they could see where they were aiming.  It was kind of cool to watch.  Thank heaven I couldn’t feel anything!  It took a few tries to get it aimed properly.  I'm pretty sure the bruise is going to be impressive.  Then they pulled out the needle which would take the tissue, it wasn’t small either.  Damn it took a long time for that needle to go in.  They said there would be a pop as it got through the lymph node.  Apparently the little buggers are kind of tough, they really had to push.  I thought they would come out my leg.

They pulled the needle out, & put the tissue on a slide for the pathology Doctor to check.  She gave them the thumbs up and we were done.  This was easy, I’d be home soon – Not!

Apparently you are not allowed to stand up for 4 hours after this kind of procedure because it takes that long for things to start healing properly.  They want you to have a nice start before you leave the hospital.  They didn’t tell me this until I ate the lovely lunch and drank the fluids they gave me.  Then I needed to use the toilet.  They brought a bed pan.  Oh the humiliation.  It isn’t easy trying to relax enough to urinate in a bowl while sitting on a bed.  I spent my life thinking urinating in a bed just wasn’t acceptable.  Now they were asking me to pee in a bowl, in a bed.  It just wasn’t natural!  This goes against everything I’ve been taught.  It was creepy.  I apologized profusely to the nurse who took the bed pan.  She laughed and said this was nothing.  Well, I still thought it was humiliating.  But then, what do I know?

As soon as I was allowed to get up and dressed, I excused myself to the restroom.  Ah the relief!

Thank heaven for Ruth and her patience.  She sat with her kindle and waited all day for me.  She is a wonderful friend.

Today is my day to recover.  I’m not allowed to lift anything heavy.  I thought a little lounging with a book, then some light cleaning and then to finish packing for my girls weekend in DC.  I do need to go fill a scrip this afternoon, but first a nap.

CT Scan Update

I got a call from my nurse yesterday afternoon.  Apparently someone played where's Waldo with my scan.  They found 1 lymph node which is marginally larger than my scan from January.  Since it was noted, I will need to have a biopsy.  I'm not sure when this proceedure will be, which node it is, or what will be involved.  I thought I'd get a call today, but they are busy folks and will get to me when they can, I hope.

I can only assume that since all of the trees in the Richmond area are procreating like rabbits, that this is due to one of the maryiad of allergens I react to.  If I were a betting woman, I'd say it was the slippery elm tree.  I have, however learned that betting is best left to those with money to lose.  It could also be related to the sore throat I've been battling for a week.  Either way, it is still better to be safe than sorry so I can't complain over much.

On a delightful note, I got to eat the first asparagus from my garden for breakfast this morning.  I don't think I have ever had better!  I hope to have a bumper crop to enjoy.  The peas & spinach are also up.  I planted garlic last year and it is beautiful.  I love having a garden!

Drizzling Shit

So, I had a delightful weekend reading an entire book, and watching a rugby match with my best dog, Abby. Sunday I got to hang with my best buddy, Mary, for a small early birthday celebration. We got our girls weekend planned & train tickets purchased.  Yay!

Work today was productive after a rough start - I did not want to drag my sorry butt out of bed. After hitting the snooze button more times than I can remember, I finally got up to go to work. Abby was also moving somewhat slowly this morning. Yeah, we were rebels this weekend & feeling it this morning. 

I made it in for treatment, have I said I love my nurses yet? Yeah, they are awesome.  No new jokes to report however. 

After treatment, I trekked across the hospital to get my CT scan.  I even managed to not get too lost.  After checking in, I drank 2 jugs of a really nasty barium solution & worked on knitting my hat while I waited.

Have you ever had a CT scan? No? Well, it is a trip! You can't eat for 4 hours prior to your scan. You can drink clear fluids though so it isn't all bad.  Vodka is a clear fluid btw.  

I got to sit in the waiting room listening to some guy belittle the woman who checked us in about how he had already had to cancel an appointment because he isn't supposed to have to pay anything for his scan & that they screwed it up, again.  What a douche!  He claimed that he spoke with someone about his scan and they said it was free.  When in hell is a scan ever free? After droning on and on for about 15 minutes, he finally walked out. I small part of me wanted to go up and let him know that he was being rude, but I just sat there, like a lump, in horror.  It was like watching a train wreck.  I did go up to her later and apologized for his rudeness.  I really didn't think she deserved that kind of treatment.  I thought she was really nice.

After drinking my bottles of yucky stuff, they called me back, & gave me an IV. Then I got to ride the CT machine. This is so much fun! If you've never ridden one, you have to do it soon.  When they tell you to hold your breath, or hold your breath & not swallow, then forget to let you know when you can breathe again, that is so awesome. It gets even better when they push the contrast which makes you feel like you've just urinated in your panties. Now, how awesome does that sound?  Makes you want to go schedule a scan for tomorrow, doesn’t it?

Then after your scan, you are making the trek across the hospital only to find that some of your breadcrumbs have been eaten by very hungry birds. You get lost & you are beginning to feel a little gassy, but it isn't really gas & you have to go find a bathroom so you can clean up & toss your panties in the trash because they are not going in your bag. Sounds great, right?

After you get all cleaned up, you find out that the valet parking guys are gone.  Well, you'll have to walk back to another building to get the car back.  In the mean time you have to stop at the ladies room, again.  

Is there a Silver Lining?  Well, I got a lot of steps in & I’m pretty sure my bowels are now clean as a whistle.

I know you want one now, don't you?

Update:
After getting home and spending the better part of the night in the bathroom I've decided that the only way to adequately describe these occurrances is, "Shit Happens!"  All you can do is roll with the punches & hope there isn't too big a mess to clean up. 

Another possible side effect to add to my list: TMJ!  Oh boy! 

St. Baldrick's Foundation @ the Church Hill Irish Festival

A very cheerful update today.  I got to go to the Church Hill Irish Festival with friends today.  My best friend, Mary, & I decided to join in the shaving fun.  We managed to raise almost $300 in about an hour, not bad for a last minute entry.  Then we let them shave our heads.  I have to say, it felt wonderful.  I think I'd like to start earlier next year and see if we can't raise some real money for St. Baldrick's Foundation. 

I even got to talk about my cancer & treatment a little. 

My best friend & I before, during, and after our shearing.  Photo courtesy of my friend Molly Blanton.

We had a wonderful time and I really want to do it again next year.  I think we look amazing!  We were cheered on by the crowd and even got a few hugs from complete strangers. 

This was the best Saturday I've had in 3 months!  The nausea was still present but managable.  I was sore, but didn't let that slow me down - too much.  It was so nice to get out of the house and have some fun on a beautiful day. 

Bonus: I won't have to worry about greasy hair, or buying shampoo, & it dries instantly.  Maybe I'll keep this style for a little longer than I had initially planned.

 

After a long and wonderful day, I'm off to bed.  May you dream of rainbows & unicorns!

 

Nameste!





A few thoughts on life, death, and regrets.

I have been thinking a lot about death of late.  There seem to be a large number of people crossing over.  I've also been asked to get my will put together.  Honestly if you want something, let me know.  I don't have much but I certainly can't take it with me.  I am not afraid to die.  I don’t want to die, but I am not afraid should that runaway bus with my name on it come at me.  When it does come, I hope it is mercifully quick and a long, long time from now.  I wish I had done more with my life of course.  I spent too much time in school.  I didn’t get wild or crazy while there.  I pretty much always played it safe.  I said no too often because I didn’t have the money, or I didn’t feel it was right.  I wish I had said yes more often.  Isn’t it funny that regrets run toward the ‘what you didn’t do’ more often than what you did do?

There was a guy I dated in college while he was deployed in Germany; he was gone for 3 years.  I should have broken up with him when he left and gone out with other people.  He cheated on me while he was gone & broke my heart.   There were people who asked me out and I always said no because of Joe.  I regret saying no.  I might have found that right person to love, who would love me.  We might have had a family.  I wanted a family but now it is too late.  I do feel like I have missed out on the love and family experiences in this life.  That bums me out quite a bit actually.  I am more at peace with it now that I was say 5 or 7 years ago.  I’m also still mildly annoyed at a former friend who will never allow herself to be without a man and really find out who she is.  She had the audacity to get angry with me that she wasn’t enough for me to just be happy alone.  I’m not sure I understand it either, but we aren’t friends anymore for much more than just that.  I am glad I knew her.  Her lesson to me was in setting boundaries.  I am better for having learned that lesson and I thank her for it.  It is o.k. to help people, but not at the expense of self.  I am still learning to take care of myself first.  I am worthy of happiness – yeah, still working on that bit.
Now I live alone and my parents worry, since I’m in treatment, that I’ll fall down and no one will be here to find me before I expire.  I don’t want them to worry about me – another regret.  I know I’ll be fine, but there isn’t anything I can say that will make them worry less.  Cancer is like a four letter word that scares the hell out of people.  It is the whisper in corners that suddenly gets quiet when you walk by.  I don’t want this disease to be quiet.  I want it to be loud, obnoxious, & in-your-face.  I hate my scar, but part of me wants everyone to see the ugliness in it so that they will consider protecting themselves, their family members, and spread the word to their friends.  Don’t use tanning services!  Protect yourself in the sun!  I want to yell it in public.  Sadly I’m not a yell it in public kind of person, so I mention it in the check-out line at the store.  I tell people to apply sunscreen, to protect their skin.  They probably think I’m nuts, but I feel compelled to warn them.  The sun is powerful and we have depleted our protective ozone layer too much, it isn’t coming back.  We are no longer protected, now we need to protect ourselves and each other.  I must be nuts to talk to strangers in the elevator about it.  I just want people to be aware.  There isn’t an organization like the Komen foundation for melanoma.  Apparently our numbers are still too small, or we are too quiet.  No one seems to understand why I want to stand up and yell.  Since my second diagnosis, I want to scream at people who tan.  It may look healthy, but it isn’t, later you will regret it.  I was never big into tanning, I usually used sunscreen.  I now don’t go out without putting sunscreen on.  I still got the disease.

I haven’t traveled like I wanted.  I have always worried about money instead.  Just once I’d like to say yes to a trip somewhere fun and not worry about the cost.  I am pledging to save up for a vacation.  I’ll go alone if I need to.  I can’t really count on anyone to go with me, so why not go by myself?  I do have a huge list of places I’d love to go.  Sadly it won’t be this year.  I will stay here and finish out my treatment so that I will have a long time to go experience new people & places.  I do dream about going to Wales one day.  I’d like to do a walking tour.  That sounds like great fun to me.  I’d also like to spend some time in Argentina learning the tango.  I’d also like to go to New Zealand.  I want to spend 2 weeks in Tuscany taking cooking & wine classes.  I think it would also be fun to go to Greece and do the same thing.  Hell, I’d love to take time to go everywhere and learn the regional cuisine.  A few weeks on a boat sailing the Mediterranean learning to fish, clean & cook.  That would also be nice.  I would just have to keep a parasol & sunscreen with me. 

I wonder there aren't more autumnal or spring vacation advertisements?  Why do we think of vacations as being either summer beachy or winter ski activities?  I would love to go see the spring flowers somewhere new.  Oh dear, that is a whole blog topic isn't it?

I seem to have digressed a bit here, oh well.  It happens.  I forgive me.

What is the Moral of this incredibly long rambling?  You are worthy of happiness, you are worthy of being a priority in your own life!  Love, accept & respect yourself.  I'm still working on all of the above.

 

 

Maintenance phase begins

25 February 2013

So the first treatment side effects yesterday were awful.  I got my shots around 12ish and went to work.  I made it until 3:45 before I had to head home.  Somehow I thought this time around things wouldn’t be as bad.  Yeah, about that, I WAS WRONG!  The aches started first at around 3, I thought I could make it to the end of the day.  They proceeded to get worse so I headed home.  I made it in time to crawl in bed and fall asleep.  The freezing shivers started around 4:30 or 5, I really can’t remember.  All I know is that they seemed to last for-fucking-ever.  As soon as I would start to warm up, I’d have to get up and let Abby out or have to go to the bathroom.  I was actually looking forward to the fever to come in and save the day.  I have no idea when it started but when I finally took my temp, and wasn’t freezing anymore, it was 102.8.  Damn, that was at 7:08 last night?  It felt like midnight.  I texted my temp to my nurse, she said to ride it out with Tylinol. 

It should be said that this part of the side effects should only last a week or two, I hope.  I only had this for a week during the infusion phase so I hope the maintenance phase follows suit. Next up, rash?  God, I hope not!

The only good thing about this phase it that it takes a few hours for the side effects to hit.  I have more time to get stuff done before I’m down for the count.

Dr. Poklepovic reiterated, again, the importance of not suffering in silence.  I am to let him know if I start to feel down in the dumps and he will prescribe me happy drugs.  Hell, I already have 6 drugs sitting on the counter at home to counteract the side effects that can be controlled, how many am I supposed to ingest?  Yeesh!  Not to worry, I promised I’d let them know.  It isn’t as if the whole world can tell how I’m feeling by looking at me.  I do not have a poker face.

So I’m better this morning, but still feel achy.  Don’t worry all, I will get through this.  I will probably sleep through the first month or so before things start to settle down a bit.  Pray for Abby to get through this.  This can’t be fun for her.  I just keep telling myself, it is better than getting cancer again. 

27 February
Wednesday was better than Monday.  I didn't shiver for hours and the fever barely broke 100.  I was still achy but it was bearable.


01 March
Things are looking up!  I think being off of treatment for 2 weeks fooled my body into thinking I was done.  What a shock for me to start back up again.  Today was better than Wednesday.  Only minimal chills, no fever and very slight aches & pains.  I hope things continue in the same vein.


04 March
More of the same.  Chills & aches hit first, then eventually the fever came in to save the day.  Isn't it interesting that I look forward to the fever to hit so I'm not cold anymore? 


06 March
Thunder Snow!  Driving in to work this morning was weird.  My neighborhood had rain, 4 blocks later it was sleet, then before I got to the highway it was fat flakes of snow.  It snowed all day until I got the call to go in early for my shot.  Also got news that the staff at the hospital is looking for funding for me to do the shots at home.  That would be nice.  I could do the shots myself instead of going into the hospital every other day.  I could even take a vacation!  What a thought. 

Got some bad news when I went in for my shot today.  4 people in the high dose Ipilimumab arm have died on the treatment.  This makes me incredibly sad.  I had to read about what happened and sign a form indicating that I understood what happened and that I was still interested in continuing with treatment.  My heart goes out to the families of those patients.  While we all  understand the risks associated with a study, it still scares the shit out of me when I think back to the beginning and I was hoping for one of the Ipilimumab arms.  Someone is watching out for me!

Thinking healing thoughts...


A few photos from the end of my induction phase.  One o fmy nurses made me the sign.  I love these nurses.  They are amazing!

Beginning Treatment

So how does a Melanoma patient start of the new year?  With Immunotherapy of course!

Drug of choice: Interferon alpha-2b
Induction phase: Infusions 5 days/week for 4 weeks

Jan 13^th

Immunotherapy begins tomorrow. I'm a little wigged about it but I am sure all will be fine. I'm counting on no side effects.

January 14th  Immunotherapy Day 1

So, it has been described as having the flu times 10. This is the hormone that brings a fever to fight infection. I may also experience fatigue and aching muscles. It sucks, but it is my best chance to reduce the risk of a recurrence.
Happy thoughts.

So, I checked in at 8:45 this morning, gave 22 vials of blood & a cup of urine, (apparently my word and a blood test isn't enough to prove I'm not pregnant,) then waited to see my Dr. & Nurse, & signed another form giving permission to start chemo therapy on me.  Yay?  A little wig-age as they finally got me in the chair.  I was in a room with 8 other people. It took a few tries to get the IV in.  Have I mentioned that I hate IV’s?  No?  I hate IV’s.  Now I get to keep it 3 days, then get another for the rest of the week.

What went through my mind as they were inserting an IV you might ask?  Holy Shit, what have I gotten myself into? Don't freak out. I’m going to have an IV inserted so they can pump chemicals in my veins. There are 8 of us in a room getting various chemicals administered. We are going to try to make this IV last resulting in less damage to the veins. What have I gotten myself into? This is me not freaking out by the way.

I got home at a little after 5 and froze wrapped up in a blanket until I went to bed under a pile of 8 blankets in my flannel PJ's. Woke up at 9 with a temp of 100.4. Still under the threshold so it is all good. This means the drug is doing its work. Now to go back to bed and sleep the sleep of the healthy happy cancer free patient.

I can't wait to do it again tomorrow!

Nameste friends, Nameste.

17 Jan 2013 otherwise known as Day 3 of immunotherapy

One of my nurses gave me a shawl tonight. How awesome was that?!? It is pink but I don't care, I love it anyway.

I realized when I was half way home they had forgotten to put hep in my IV line so I had to go back.

Now I am home in my Betty Boop footed PJ's, thank you Bergman family, wrapped in my shawl, and the most comfortable blanket I own, thanks to Kim Stockwell Steen. My fingers are so stiff they hardly move. On the shopping list are gloves with the fingertips cut out.

Ooh, here come the achey muscles and shivering.  Honestly, if this is the worst of the side effects, I count myself lucky. Now this is only day 3, but I'm usually feeling better by lunch time the next day. Can I justifiably say usually if this is only day 3 of treatment? Time will tell.

More to come!

Day 3 side effect update:

I woke up around 9:00 last night with a temp of 101.6, a full degree above the threshold I'm allowed to reach. So I sent a text to my nurse, who spoke with the on call Dr. who ordered me to the ER to make sure I didn't have the flu. After 3 vials of blood, a container of urine, a nose swab, 2 chest x-rays, and almost 5 agonizing hours staring into approximately 10 - 4 lamp, 32WT8 lensed troffer glare bombs, (no I did not count them,) there is no infection, none, nada, zilch. My eyes still feel like they are bleeding.  All this while being fashionable in zebra striped Betty Boop PJ’s. 

The architect who designed that ER needs a porcupine enema. Now you may think I'm exaggerating, but they aligned the gurney pretty closely with the door which also lined up with the corridor lights. They can't shut the door on the off chance that they might forget about you. There is no way to not stare into the damn fixtures. My eye's still hurt.

In the future, I am tempted to not notify my medical professional of fever spikes. Sadly, it is still better to be safe than sorry. Damn my desire to live!

18 January

On an up note, here is a list of things that are great this year.  I thought it might be nice to enter something cheerful for a change.
 1. I got into a clinical study for Melanoma which will increase my chances of avoiding yet another reoccurrence of cancer.
 2. I have met the most amazing people at the Medical College of Virginia Dalton Oncology Clinic. As soon as I can remember all of their names, I’ll tell you all about them.
 3. The study has the lovely side effect of being a terrific diet plan. After a treatment the mere thought of food becomes repugnant. When I do eat it is easily half of a serving and I am stuffed. Thus far I’m down 5 pounds down in 4 days. Silver lining? I'd say yes!
 4. After a treatment I generally go to bed really early due to exhaustion. Fortunately this means I wake up refreshed and feeling good.
 5. This weekend I will spend cleaning my house and it will feel wonderful!
 6. The office is closed today due to a power outage giving us another 4 day weekend. Yay!
 7. It snowed last night!
 8. The sun is out today!

Day 10 ( I don't remember the date, sorry.)

10 days of high dose infusions down and only 10 more to go! Woo-Hoooo!

25 Jan 2013

Spectacular! My nurses tell me dirty jokes when they are hooking me up to my IV.  I have the best nurses Ever!

30 Jan 2013

Am now on anti-nausea meds. My limit is one side effect at a time, thanks.  Oh yeah, I forgot to let you all know I got a lovely, itchy rash as my side effect du jour last week.  1 anti- itch cream + 1 anti-itch pill.  Nothing works all of the time.

31 January 2013

Only 7 more infusions!!! I can see the light at the end of the tunnel. Woot-Woot! Tonight it'll be only 6 more infusions, tomorrow night it'll be 5. I can't wait to be done with this phase!! Of course then I'll have to learn to give myself shots, but I won't be living with an IV anymore. Hooray!

Apparently a fire alarm went off as I was waiting for my car last night. The building was evacuated so the valet guys were unable to go get cars.  The lot is in the basement of the building that had the alarm. They wanted to go home early as there were only 3 of us left in the deck. I have to say that the Valet parking folks are really super nice.

04 Feb 2012

Waiting on labs again. Also waiting to see if my white count is high enough to be treated.
Is off to bed for awhile. Infusions kick my ass.  Woof!

(You’ll notice there are periods in here where I don’t have much to say.  Interferon makes you really, really tired.  I pretty much slept through my induction phase.  I would get home from an infusion Friday evening and crawl in bed and stay there until I went to work Monday morning.  I hope my dog will forgive me for this.  I would get up long enough to feed, water and let her out to do her doggie business.  The rest of the time I just slept.  There were a few hours of reading in there, but nothing substantial.)

11 Feb 2013

I've been given a week long reprieve due to my white count being down again.  Oops!  My regular nurse was out last week.  She’s a little upset.  Apparently they were supposed to give me a break last week, due to my white count being so incredibly low, but they treated me anyway and made me wear a mask to work.  So, my white count is down the tube and there will be no shots this week. Maybe I'll stop being so damn tired for a change and things can get back to normal until they dose me up again next week. Yay, for a rest from treatment.

I am hoping that this will also help me be rid of some of those Oh-so-lovely side effects. It would be nice to have the energy to clean my house and it would be really, really nice to get rid of the rashfromhell. The nausea could go away too.

Here's hoping I can catch a break and be rid of some side effects!

14 Feb 2013

So I took an ativan, aka.lorazepam, this morning along with the rest of my meds to combat the various side effects and went to work.  There comes with that stuff, an element of loopy, & a definite loss of balance.  I think I'll save that one for when I get home.  I feel like I'm walking on the walls with this stuff.

18 Feb 2013

Right-O!  This could be an unpleasant post for many folks to read, so feel free to skip over this one.  I include it for educational purposes only.  I was bleeding from my hiney the 15^th.  This is a problem because immunotherapy can occasionally push you over into autoimmune disease.  One early sign of this is colitis, which can get really bad.  So, my nurse freaked when I texted her.  Then I had to call her, because she insisted this was not a discussion to be texted, she needed to hear my voice.  She had me scheduled for a colonoscopy within 25 minutes.  I was down for Monday afternoon.  Note: go for a morning appointment.  There is a better chance you’ll get in on time and you won’t have to go all damn day without food or water.

Now, I don’t know how many of you have experienced this level of hell before, but the prep is worse than the procedure.  Keep that in mind as I describe what went on in a little detail as possible.  The afternoon before your procedure you take 4 Bisacodyl EC, 5mg, tablets.  You had better be near a bathroom is all I will say to that stage.  Then you have a gigantic jug with a powder sitting in the bottom.  You will have to add water up to the fill line.  It doesn’t look like the gigantic jug you will see later on as you have been drinking this vile concoction.  Be aware there is no possible way to make this shit taste good.  Well, maybe booze would help, but I doubt it.  Beginning at 6 pm Sunday night, I had to drink 8 ounces every 15 minutes until half of the jug was gone.  Then at 6 am I had to repeat that scenario.  Again I will say, you had better just drink that damn jug in the bathroom because you won’t be leaving there any time soon.  Hell, you had better just sleep in the bathroom too!

O.K. I think I have given you enough gory details on that prep.  Moving on!  I go to the hospital for my regular Monday morning appointment thinking I would have the normal labs that I do every Monday.  Hooray, no labs today!  Woo-Hooo!  I speak with my nurse for a bit, she is distressed about the bleeding thing and worried they’ve pushed me into the autoimmune area.  I tell her not to worry, I’ll be fine.  So she tells me that I’ll get some great drugs I’ll go to sleep, and I won’t remember a thing, then sends me off to the endoscopy/colonoscopy suite in hopes they’d be able to get me in early.  Yeah, no such luck.  Apparently not everyone is as anal retentive, pun intended, about following instructions as I am.  Several of the folks in front of me have not been so diligent, and there were complications, which means they were almost 3 hours late getting me in for my procedure. 

Now, the grumpies are setting in as by this time it has been slightly more than 24 hours since I’ve had food, and I had only had ½ liter of water that morning, other than the afore mentioned vile concoction.  So I apologize to the nurse for any I say that might not be the most polite, but could I Please go to the restroom again.  At this point I can’t stop going.  Ugh, just nasty! 

At this time I have the IV in, am in a gown with my rear exposed to the wind, and have been sitting on a gurney bored to death.  They have the guard rails up so I can’t get out.  I press the buzzer again feeling incredibly guilty because I need to go – again!  The nurse apologizes and says that there have been some complications with patients ahead of me and that they’ll get to me eventually.  I hold up my hand and say, ”I’m sorry but I really need to go again.”  She chuckles, I apologize again.  We walk down the hall, butt potentially exposed to the populace.  Coming back I take the opportunity to break out my kindle.  If I’m just going to sit and wait, I may as well read something.  Yay, Books!  Sigh, I can manage, right?  Nope.  As soon as I’m settled and into a really good book, they decide to come get me.  Really?  This was just getting good!  Ugh, I hate having to put my book away when it is just getting good.  I love a good mystery, or Sci-Fi thriller, or pretty much anything that isn’t a harlequin romance = blecht!

Now, everyone I have spoken to, to date, has told me that I would be knocked out and wouldn’t have any idea what happened in that room.  Be aware that all of these people lied to me.  They did not knock me out.  I didn’t feel anything, but I was awake the entire time, watching the monitor and asking questions.  It was weird.  Oh the humiliation!

Results:  They didn't find anything showstopping so I will start back on the maintenance phase next week, Feb. 25th.

This is what infusions look like.

Wearing an IV was not fun.

I love my friends!  Gabi made this for me for Christmas!