2nd Cancerversary

2cancerversary

Before you go any further, this ended up being a seriously long and somewhat whiney post!

Yep.  It’s my cancerversary.

Cancer folks have all sorts of ways of figuring out this date:  date of last treatment, date of first treatment, date of surgery, etc…   I decided that it was the date I was formally diagnosed.  The day I met with my doctors and heard the news out loud and in person.

August 21, 2013.

It’s a strange day.  I’m happy because it means I’m still here.  Prior to getting cancer I always thought that it would be the worst thing to happen because I didn’t think there was any real treatment options available to me and that I would probably die quickly.  On the other hand, it kind of sucks because, you know…cancer.

Fuck Cancer.

I don’t consider myself a survivor.  The medications I’m on continue to make me feel like crap and I still don’t have full movement or feeling in my left arm/side.  Every new pain brings about a bit of a panic attack – is it back?  You can’t rest easy ever and there’s enough physical side effects that you can’t forget about it.  I try not to dwell but everytime I get comfortable, something stupid happens.  So I consider myself a warrior. I may not have cancer in my system right now but it has certainly marked me.

FYI: Breast cancer is NOT cute and pink.

As far as I know, I’m cancer free.  I see my oncologist next week to go over some test results.  I have a scan and visit with my surgeon in early October.  Usual yearly stuff.  Although this is the first year for scanxiety.  Last two years I knew I had cancer when I did my tests – this year, I’m hoping that I don’t have cancer again.  I don’t think so.  Staying positive.

Everyone is still really happy with how the surgery went and my recovery.  I swear by my doctors so if anyone needs a Los Angeles recommendation, get in touch with me.  I started my post-surgery medicine about 5 months ago.  I get a shot once a month of Eligard – this puts me into medical menopause.  After the first month of that I started on an AI :  Exemestane.  This stuff shuts down all the extra estrogen – the kind that keeps your bones and muscles strong.  California summers are NO FUN combined with hot flashes.

So the cancer is stable as far as I know.  With the heat my arm and side are a little puffy and sore which contributes to the increase in whining.

Plus its F-ING hot here in So Cal!!!  I hate it here.  I could totally do Alaska 9 months a year and come back to So Cal for January through March.  Although I would miss my family and friends.  And Taco Tuesdays.

The most recent thing I’m dealing with is a hospital stay all of last week (Sunday 8/9, late in the evening through Friday, 8/14 in the morning).

It started on Sunday 7/19.  I started two new medications; both were liquids that I had previously taken but the companies had made these medications into tablets.  Much easier to take.  I started them both on that Sunday but by that Wednesday I felt like hell and had a low grade fever.  I called my doctor and they prescribed some antibiotics to try to get rid of the fever and keep whatever thing I had from getting worse.  The following Monday (27th), I was feeling worse, still had a low grade fever and had gained 10lbs (in 8 days!).  I happened to have an appointment with my endocrinologist and she looked at my swollen stomach and immediately detected that my gut bacteria was all out of whack and it was probably the antibiotic.

I don’t know why I thought of it but one of the new medicines was an anti-fungal to keep all the bad bacteria from growing in my lungs (it’s usual for someone with my anemia to take these drugs to make up for the fact that our immune systems are super bad).  Anyway, after some research, it turns out that the dose for this drug on the first day you take it is 600mg for both the tablet and liquid; BUT the dose for day 2 through x is 300mg for the tablet and 600mg for the liquid.   I was prescribed 600mg for every day with the tablet.  My side effects were listed in the overdose side effects list.  Both my doctor and the pharmacy missed the dosage change.  Luckily I have an excellent doctor who knows I research the shit out of things so she took me completely off the drug as soon as I emailed her. (That was monday the 27th)

It had done a number on me already and on Weds the 29th, I went in for my labs and my hemoglobin had nosedived to 5.5 which is a scary low.  Like, don’t get out of bed or get stressed or you could have a heart attack/stroke level.  So I was scheduled for 4 units of blood (two on Thursday, two on Friday).  My blood pressure was super high, but my fever went away after the first day of blood.  I did ask to have another lab test done the following wednesday (5th) to make sure that my counts were okay.

I didn’t bounce back from the transfusion like normal but I felt a little better.  By end of the weekend my fever had come back.  On Wednesday the 5th, I got my labs done and my blood counts were ok but my potassium was super low.  Back I went to the hospital on Thursday the 6th for a 4 hour infusion of potassium.

BTW:  do you know that potassium hurts while it goes in?  Like someone is slicing through your veins with a fire hot razor.  I had a major panic attack so they gave me some ativan and put more saline in the potassium so that I could stand it.

I started to feel better again but the next day I went to lunch with some friends that my mom used to work with and I started to not feel well (like when the flu is coming on).  The next day (Saturday the 8th), I woke up with a super sore throat, swollen painful glands and a low grade fever.  I stayed in, hoping that it would go away but the next day I woke up feeling worse.  My fever got too high (102.6) and, after talking to the doc on call, away we went (Thank you Joyce for driving to/from and keeping my mom company!) to Norris for me to be admitted.

View of my floor

View of my floor while on a walk.

I stayed from Sunday night through Friday morning.  I had a fever that didn’t go away until late Tuesday.  I got a chest xray, cat scan of neck/chest, doses of super antibiotics every 8 hours, and three units of blood.  My blood pressure averaged 180/88 so I was put on an ACE inhibitor and some other heart medicine.  I was also started on an anti-viral medicine.   Now I have a few more pills in my at home drugstore!  My fever stayed down.

Another thing happened while I was there.  With Aplastic Anemia, you don’t make white cells.  This is a huge problem because, well, you need those to fight off any infections.  There are two lab results that we are concerned with:

WBC:  Actual White Blood cell count  (Normal is 4.5 – 10k)

ANC:  Neutrophil count (Neutrophils make WBCs work)  (Normal is 1 – 1.8)

My counts are usually severely low.  My WBC is usually between 0.8 – 1k.  My ANC is usually 0.1 to 0.3.  On my Sunday night admission blood test, my WBC had plummeted to 0.34 and my ANC was 0.00.  Basically, I had no working white cells in my system.  So everyone had to wear masks in my room and I had to go on a low-microbial diet.   When I was discharged on Friday, my WBC had risen to 0.5 but my ANC was only 0.02.

Circus Monkey always comes to the hospital with me.

Circus Monkey always comes to the hospital with me.

So, I really shouldn’t have been discharged but it’s a fine line between risking infection at home and staying in the hospital too long and picking something up there.  So my discharge instructions are basically:  don’t go anywhere, don’t have any visitors and don’t eat anything not made in your house.

I’m doing ok with this.  I did go to Target to pick up a few things but I wore a mask and gloves.   My daily getting out of the house is driving through Del Taco for an iced tea.  I’ve lost all the weight gain plus 5 more lbs.  I’m going crazy!!!

No fever though – so YAY!  Gigantic headache.

I get my labs done next Wednesday the 26th and hopefully I’ll be cleared to go out more.  Eating out at restaurants or food made by other people is probably out for a while.  I had to cancel plans with a friend today and another friend is in town from out of country and I can’t see her. Luckily I saw her a month ago.  Totally bummed.  I also missed my friend’s birthday.  The hardest part of all of this is all the plans I make have to be pencilled in.  I feel like I”m constantly disappointing people. SUCK!

There is a ton more to say, including a funny story about a urinalysis, but this is already way too long.  If you’ve gotten this far, thanks!!!   Thank you everyone for your understanding and constant support!!!  I couldn’t do this without you!!!

FIGHT ON!

Advertisements

11 Comments on “2nd Cancerversary”

  1. Donna Standlea says:

    You are a warrior, Pam, and someone to admire for your tenacity and spirit. Thinking positive thoughts for you. Hugs, Donna

    Like

  2. elizabeth lamar says:

    Oh, Pam, I am so sorry for all you have to go through. And I admire your Fight On attitude. Sending best thoughts your way, Elizabeth

    Like

  3. Penny Korn says:

    Fight On Pam!! Pain in the ass, but with your determination and attitude, you will beat the crap out of this thing 🙂 I right there with you kiddo! You are one brave lady who has been through the mill, and I don’t just mean just the cancer. You are so strong Pam!! I root for you every day, and send my love and prayers. I have so much admiration for you. Keep it up girl!! Hug and kisses, Penny

    Like

  4. Barbara DiCarlo says:

    Pam thanks for the update. I know this has been very hard on you. Being house bound could drive anyone crazy. I continue to pray and hope your days will soon be better. I miss our little chats. Fight on girl and I am here for you! Ciao Barbara

    Like

  5. Lori says:

    You’re never disappointing anyone Pam! And you ARE most certainly a warrior (here’s a potential battle / theme song btw if you like it: https://www.youtube.com/watch?v=39p_9iUos7I)

    I’m sorry this has been such a horribly tough road. You’re amazing in your strength & spirit and beyond inspirational. LOVE YOU – keep on fighting on, Trojan.

    xoxoxoxoxoxoxoxoxoxo

    Like

  6. Karen Stember says:

    Finally sat down and read every word of this latest blog post. You do have every right to whine a little as yes cancer AND your blood disease both suck big time for you. What a tough way to lose weight and by the way I found what you lost! Want it back?!
    Keep hangin in there Pam and I think it’s less than two weeks now before you get to hear that Trojan fight song again….(I however am looking forward to the game on Nov. 28th 🙂
    Hope you can come soon to Taco Tuesday even if you can’t eat the tacos….it’s not really about the food you know 😉 Xoxo, Karen

    Like

  7. Sue says:

    Jesus Pam, this is scary shit. I’m curious though about no visitors. Would it be possible to meet on opposite sides of a piece of glass? Like through a closed glass/screen door? If I were in town, I’d totally sit on the opposite side of a glass door, and watch some tv with you.

    Also, isn’t potassium what they give to put inmates to death? I thought that was why they sedated them first, cause it hurts.

    Like

    • Pam says:

      Yeah, it’s been a fun couple of weeks.

      I appreciate the glass wall offer. I think it’s more that having people in the house could bring in bacteria so we could sit on opposite sides of glass but my mom would have to follow you around with Clorox wipes. My mom is exempt because we live together and I’m used to her germs. I think the ban might be lifted soon. I will know more after labs on weds.

      Yes, potassium is what they give death row people. For someone who is deficient, it has to be given super slow- 10mg/hour. If they run it in fast, it will stop your heart. They also dilute it for patients. It still hurts like a beeyotch!!!!

      Pamela Muzyka Sent from my iPad

      >

      Like

  8. Diana says:

    Love you lots, Pam! I think of you often and include you in my prayers. I remember taking potassium when I was at Cedars for my ruptured appendix. It was a MASSIVE pill and tasted horrible. I can’t imagine your experience with it.

    Thankfully, the season is about to start and you can start sending some frustration that way. 🙂 Fight On, my Trojan sister!

    Like


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s