And So It Is…

Hi.  I’m Brandi.  I am the owner of this blog.

I have been putting off this post now for…5 months.  I know it’s not fair.  I had such a following.  So many people that read, because they cared - because they were concerned.  I had so many people that actually gave a damn.  While this was once my outlet, this because my prison.  Lymphoma became my prison.

I could no longer break free of it’s torment.  I could no longer prove that I was stronger than it.  I came to realize that I only had hope and the grace of God.  But that was only if “it was in his will”.  I became very bitter.  And I think I still am in a lot of ways.  I was positive for so long.  I fought - and I fought - and I fought.  But fight no longer I could.  I gave in, with only hoping I would make it through.

Well, luck (?) or God’s will was in my favor.  At least so far.  Here is the breakdown:

• November 7th.  Hospitalized for almost a week.  6 mos of chemo finally broke me down.  I required 2 units of blood and was in the hospital under neutropenic precautions because I had an infection.  To this day, we have never identified what infection I had.  I just had one.  The charge nurse had to fight for my life that night.  She thought I was crashing.  Thank you, Lois.  I owe you my life.  :)  I took my last dose of chemo 2 days before.  Thank God, there is no more prednisone.
• The beginning of Decemeber I started my 3 and a half week cycle of radiation.  Everyday, 5 days a week.  Over 3000 rads.  My last day was New Year’s Eve - I tried to celebrate.  I fell asleep before 11.  I still have the burnt skin to remind me of it, over 2 months later.
• My finances are in shambles.  My mental health is far from stable.  I don’t know how to truly appreciate life.  Should I be thankful for what I have now, or dismayed for what I’ve endured.  I flip back and forth.
• My onc says I’m addicted to pain pills.  Doesn’t want to give me more, but I hurt.  Badly.  Been over a month without them, and I’m not fiending - just hurting.  That doesn’t scream addiction to me.
• On the positive side, I have quit smoking.  Yes, I know.  You are disappointed in me - you never knew I smoked.  But I did.  But I have been tobacco free for 2 weeks 6 days 15 hrs and 13 minutes.  I am free.

I see Dr. Clark again next month.  This will be my first PET scan.  I had a CT about a month and a half ago.  He said no new growth - only the scarring that was already there from the tumors.  The PET will show if anything is active.  Right now I am officially in remission.  I think that is good.

I did have one night sweat, but I am hoping that it was only too hot in the house.  I am not losing weight.  That would be a blessing right now.  Everyone said I would lose the prednisone weight.  I’m still weighting for that to happed - 60 pounds heavier now, and nothing to wear.

So for now I am just bitter.  I stay to myself.  I really don’t chat much.  And I let no one inside.  I don’t know if it’s safe yet - or if that will only hurt people further if I have to leave.  Which, I pray I don’t.  Thank you for your continued support, prayers, empathy and thoughts.

I will update again soon.  I only owe it to you.  To the ones that care.

The true feat isn’t escaping death, rather, learning how to live.

This was originally a post over on the Hodge Board, but thought it a good enough post for here:

Well, hello!

Some of you know me a little, and some of you have no freaking clue who I am! That’s ok. I will still update you anyhow, lol.

I fell off the face of the earth this summer. The main contributing factor to that would be the prednisone. onc actually got me up to 70mg/day at one point. according to one of my nurses, that is a “very very very high dose”. I will tell you, those who don’t know, prednisone is a hell of a drug and wears you down like NOTHING!

I have had rage like a madman - screaming and screaming and screaming. i have gained 55 pounds. retained a LOT of water.

and that’s all just from the prednisone.

the chemo in general has created a lot of problems for me. constant state of, not what I would call chemobrain, but mental issues. Read more

My Day At The Zoo…Well, ER.

Oooh, what a fun day.  My daughter had a sleep over at the YMCA last night, and needed me to pick her up this morning.  I was glad to have her back, and also very anxious to get back home and get back to sleep as I have been up since 4 AM this morning.  Ugh.

Well, I’ve mentioned the neuropathy thing in the past.  Quite a few times I know.  I think I have also mentioned that has caused me to fall the past couple weeks.  It comes out of nowhere, and my legs just turn to jello.  They just melt beneath me.  Well, I guess my neuropathy decided to kick in again this morning.  Out of nowhere, was doing JUST DANDY, when my legs gave, then I fell off the curb, then down to the asphalt.  Bad thing is, the parking lot was not nice and clean, all pitted with rocks and gravel everywhere.  Was quite bad.  I couldn’t even get up for a couple minutes.  It hurt so badly.  I just layed there on the ground unable to get up.  The “adult lady” at the Y eventually helped me up and I cried hysterically all the way home.  Read more

Half-way normal.

Sooo.  Wow.  A post.  I promised one again soon and here it is.  I’m doing tons better.  Feeling mostly great.  Tired though.  Though, Brandon, that guy that came and saw me the one time at the cancer center - yes, the Hodgkin’s survivor, told me that I will be tired for about a year after all of this is said and done.  They call it post-cancer fatigue.  Not quite sure why it happens, but it does.  Sigh.  I will get my energy back one day.

Most of the chemo (which I think is mostly prednisone) effects have finally worn off.  I think by Saturday I was pretty much back to normal.  Lord, it took a week and a day.  Friday I was still feeling it, but by Saturday I was good to go.  Sunday I was able to go out and do some running around, and did ok.

But just think - I only have 4 days to go and I start it all over again. Read more

This is why I don’t sleep…

I just awoke from a dream.

I was given a couple days to live.  They were able to give me some sort of something that would keep me strong enough the last couple days to not “feel the effects” of dying, but ultimately regardless of what happened, taking this stuff would guarantee that I wouldn’t make it past these couple days, it would destroy my body beyond compare.

I made it around to see everyone, for some reason it was my quest to make sure everyone got to see me.  I felt like it was some sort of responsibility of mine.

I wore a simple pair of blue jeans and a white v-neck shirt.  I was skinny again. Read more

Chemo”therapy”? My Ass…

LOOK!  LOTS OF PICTURES!  Ok, so wow.  It’s been a long 12 days since I’ve posted.  Has it really been that long?  Yup.  Unfortunately, I won’t be able to make this an extremely long post, but I will cover as much as I can as fast as I can.  I still owe you all a few other posts - My 2nd opinion, some chemo chronicles something, and a few updates.  Well, here is one update.  So, let me stop rambling and get on with it.

Quick Notes (In absolutely NO particular order): Read more

Bigger, Better and Fatter Than Ever.

Wow, so it’s been awhile.  I have somewhat fallen out of touch with everything.  Real life and Internet life.  I spend most of my time in my room.  It’s rare I come out anymore.  I’m just so tired and worn out and feel like crap most of the time.  The chemo thing hasn’t been too bad for the most part, I guess.  But ugh.  It’s just getting hard.  Harder and harder.  But yet, I’m getting closer and closer.  Closer than all of you had been previously informed.  Will talk about that more in a bit.

So, updates:

• I got my 2nd opinion.  I will write about that on another post.
• I am on my 6th day of chemo this round.  I owe you two Chemo Chronicles now.
• I have gotten it in my head that I am going to make it rich on the Internet, and have my own Internet business.  Based on this plan, I aim to be able to quit my job within a year.  (I think it’s the chemobrain.  I can know this is stupid thinking, but somehow it makes sense…)

Read more

Pet Images. My Big Day!

Ok, so some of you know that I have been questioning for a couple months me being on the MOPP chemo regimen because I can’t be on ABVD because of bad PFTs (pulmonary function tests).  I have also been really concerned because I have not have a PET/CT since May 12th.  Well, today was the big day!  I had a PET.  Since I have a second opinion on Tuesday, they asked me to have them put it on disk.  And of course, since I had the disk I had to take a look.  Now, I have never seen a PET before, and I think what I THINK I am looking at looks effing awesome, but I can’t be sure.  The first image is my PET 5/12 and the second is today’s.  After the 1st PET I also listed the report that accompanied the scan.  The report isn’t ready yet for today’s scan.  Anyhow… So here they are: Read more

Not So ‘Berry Yum’

I’m sitting in this darkened room for an hour. You have to do that to prep for a PET Scan. They give you what’s called radioactive glucose, and after injected, it goes to anything active within your body. To make it not light anything up that shouldn’t be, you have to be fairly still and make little movement. I can’t even talk. The only movement I am making is with my thumbs (using my blackberry) - which they don’t scan my thumbs anyhow, so I’m okay with just that.

I had to start preparing for the PET last night. I was not allowed to have any carbs, no exercise, and nothing to eat or drink after midnight. Its after 11 am now and I am starving. I also had to take my first of three bottles of bairum last night at 10. I asked for the berry smoothie flavor this time, which led me to the clever name of not so berry yum. Get it? Barium/berry yum. Right. Anyhow. I also had to choke down a bottle at 9:10, an hour before my appt that was supposed to start at 10:10. Operative word being ’supposed’. Read more

Ants

So, I feel like I have completely abandoned everyone. I probably haven’t, it just seems like I have lost all contact with everything web. But the surprising thing is I have been on it nonstop. I have been trying to do a lot of maintenance to this site. Two months later, and I still don’t have it looking good or right. I have also building another website for myself and I built one for Terrence. I have also been spending all my time in bed, thank God for the laptop.

I almost wish I had Chemobrain again. When I had chemobrain I wasn’t feeling like I did this go around. I always feel like crap for complaining too, because I really do have it easier, I guess, then most people that endure cancer and chemo. But I still have side-effects and problems. But then I run into that mental moral dilemma about how I shouldn’t be complaining, or even thinking about anything I am feeling or going through because other people have it so much worse off. Sometimes I even feel guilty for tell all of you about what I’m going through here, because I shouldn’t be bringing attention to my “simple case”. Read more

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