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!