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!

It isn't always bad.

I thought it prudent to put a section in here letting you know that things aren't always awful going through immunotherapy.  Sure the side effects can be rough in the beginning, but your body does adjust to the treatment and things will calm down.  I know you'll read most of my posts of the awful times, but there are good things that come out of treatment as well.  Also it is easy to post the bad stuff.  That sticks in your memory longer. 

The first of which is getting to know your medical staff.  I have been fortunate enough to spent a significant portion of my time with my nurses the Medical College of Virginia Dalton Oncology Clinic.  These are the most compassionate women I have ever met.  Seriously, if you are having problems, speak with your chemo & oncology nurses.  These people can help.  They have seen enough people through treatment to have a good idea of what you are going through, and may recommend some ways to make it all less painful or traumatic.  A few of my nurses went through it as well, so they know first hand what is going on.

I hate IV's.  I have issues with getting them inserted.  I hate the way it feels, I get queasy just thinking about it.  So, in an effort to distract myself, I tell jokes to my nurses while they are working on me.  They have also started telling me jokes so that I can be a little more relaxed and the IV goes in a little easier.  Either way, they are really good at distracting me during this process.  These people wouldn't be there if they didn't really care about what they do. 

My Dr. is also great but I don't see him as often.  My oncology nurse, who is administering the program for me is amazing!  I have her cell number so I can text her if things go south in the middle of the night.  She may not get right back with me in an instant, but I know I've checked in and that she will get to me when she can.  If she doesn't have an answer for me right then, she checks with the Dr. and is back to me in a few minutes.

Always keep your nurse up to date on what is going on.  If your fever spikes after a treatment, call or send a text or e-mail.  Always follow instructions from your medical staff.  It amazes me how many people do not do this.  Many problems can be alleviated by following the medical staff's instructions.  When in doubt, ask.