More Side Effects

In most ways, I'm lucky with the side effects I've had with chemo.  I read and heard horror stories.  I thought I would be tied to the toilet or a bucket, puking my brains out.  I haven't been sick once.  The meds they give me for anti-nausea are great and work. 

My oncologist had told me in the beginning, there is no reason for me to be sick.  Not with all the meds they have available.  That made me feel better. 

My chemo is Tuesday.  That night I start on Claridin-D 12 hour.  I take that to prevent the bone aches that can be severe with the shot I get on Wednesday's to boost my immune system.  I heard those bone aches and be incredibly painful.  Luckily, I've been fine.  I start Claridin-D on Tuesday night, then am/pm for Wednesday, Thursday and Friday.

Then my anti-nausea meds.  I take 2, one is a steroid.  Those start on Wednesday morning and I take those am/pm for Wednesday/Thursday/Friday.  Add in my other am med, 2 other pm meds, plus the daily gummy multi-vitamin I take.  I feel like I'm popping pills every day.

But, it keeps me from being sick.

I have one other med for anti-nausea.  That is one I can take as needed.  I seem to take a couple of those in the days after chemo treatment.  Last night I wasn't feeling great so I took one.  Same thing on Tuesday night. 

Otherwise, I haven't felt sick, at all, so that's REALLY good!!

Three side effects, bone aches, vomiting, & nausea... I have lucked out.  That's good. 

Fatigue?  OH MY GOD!  I get bursts of energy, then I'm toast.  I have a busy evening tonight, so I've been trying to take it easy today.  After 12:30 and still in my pj's, thinking about a nap pretty seriously. 

Yesterday I was really slow in the morning, which seems to be pretty typical now.  Just dragging and really slow to wake up and get moving.  Some days it is just hard to get the energy to get off the sofa.  But once I did yesterday, I felt good.  I met a friend of mine from work for lunch.  And surprisingly, I ate!  Then I had to stop at CVS for four different prescription refills. (the box of receipts for taxes next year is already NUTS!  I try to organize it now and again, but OMG!) 

After CVS I headed off to Dana Farber for my shot.  I needed to pop into the store there to ask a question and waited and chatted for a minute with Debbie from the Patient Resources room.  She is amazing.  I absolutely love taking to her.  She always has wonderful things to say and I just feel better after being around her.  I love people like that.  Such incredible energy, so positive and always supportive.  (whenever I hear of nice tid-bits or other resources I come across, I like to pass them along to her, if she isn't already aware.)

I could feel myself starting to crash while I was at Dana Farber.  On my way home, I had CNN on Sirius, listening and waiting after the white smoke came out with a new pope chosen.  When I got home, I put on TV, watched him come out and be introduced, and listened to his blessing.

Then I put on Coffee House on Sirius and crashed.  That was about 3:30pm.  Jim briefly woke me up when he got home from work, I'm guessing around 4:30-5pm.  Then I was immediately back out.  I woke up at 6:45 last night.  Um, 3+ hour NAP?  WOW!  I was just drained... from a couple of hours out!

Yup, that's fatigue.  I didn't eat dinner, no appetite.  I had a protein shake to get some fluid, calories and protein.  Whatever works when its chemo week. 

I was back in bed around 10:30 and out cold.  The alarm for Jim went off around 6:30 this morning.  I feel like chemo week, all I want to do is sleep.  My blood count numbers are higher, but I have very limited energy and its so hard! 

When I had some energy today, I did a few things around the house.  I got ready for a meeting I have tomorrow morning because I know I won't have time later.  Needed to print several things I had saved for it.  I think I'm as ready as I can be for the meeting, we'll see. 

Other side effects?  My hair, that's a given.  This morning Jim shaved it closer.  He used the shortest blade 2 weeks ago, but so much of that has fallen out, my head had spots.  It looked stupid and made me feel worse.  If I'm bald, I'm bald. 

So he used the clippers without any extra length blade. Close to a Bic shave but I can't use a real razor at all... not allowed for risk of infection.  Now, VERY close.  As I'm laying back on the leather recliner, my bald head is now sticking to the back.  Kind of like your legs sticking when you sit.  Not exactly comfortable.  Oh well. 

Now I'm going to have to wear hats more often while I'm out.  The cold.  No more little pieces of hair to do any protecting on my head.  Just completely bald now.  I've noticed I'm more cold at home today too.  So my hat that's fleece lined has been on most of the day.  I just got up now to grab that... not sticking to the sofa anymore. 

With losing my hair as a side effect, right now its weird.  My head came out in pieces, spots.  Not even.  That's why I wanted it shaved.  I still have my eyebrows and eyelashes, but eventually those will all be gone too.  I have thinning hair on my arms right now. 

If there is any advice I can pass along to any women having a mastectomy then chemo... WAX!!! 

After surgery, I was not allowed to use even an electric razor.  I couldn't raise my arms and it was all too close to the incisions, including the incision under my right arm where they took the lymph nodes from.  That's a 2+ inch scar now.

But eventually I got the okay that I could shave my left underarm and use an electric razor under my right.  Wonderful, I am no longer a hairy beast!  It was getting pretty bad there for a bit.  I think I went close to a month without being allowed to shave. 

Then I started chemo. And here is wish I again, WAXED!!!  Everything.  My oncologist said I am not able to use a razor anymore.  It can cut and then cause infection.  With my immune system so suppressed during chemo, NOT recommended to shave with anything other then an electric razor. 

Hair does not all fall out evenly.  I still have some hair I have to use the not wonderful electric razor on for my underarms, legs and bikini area.  Um, electric razors?  They suck.  I shaved my legs with my real razor every damn day.  Now I always have stubby legs.  I hate it. 

So now, I'm bald on the top of my head.  I have a 2+ inch scar on my right stubby underarm.  I have four inch scars across each breast that I don't have feeling in and everything else is stubby!

Can you say, "MAN I FEEL SEXY!"  Um, NO!  Not at all. 

SO yeah, WAX!  If you know anyone going through anything like this... just one little thing to help, not have to worry about hairy legs or armpits.  My GOD that would be a difference.  On top of everything else. 

I don't like that I've lost a lot of my confidence and self esteem.  I used to have it.  Now I don't.  Between not working out pretty much at all for 5 months, hormone changes, chemo, menopausal symptoms, and steroids?  Oh yeah... easy to gain 12 pounds and lose muscle!  On top of the sexy goddess I was already feeling like, add in weight gain to it all. 

But through it all, I'm still lucky.  I haven't been sick once.  The only other side effect I've had is chemo brain, which I think I mentioned already, but with chemo brain, who the hell knows.  I never remember a damn thing anymore, unless I write it down.  That is SO frustrating. 

Just still trying to take things day by day.  Its all I can do. 

With the mess of the weekend, I realized that I do have good people in my corner.  Its confusing to me still, because I have had people tell me "please let me know if there is anything I can do" when I was told I was too demanding for doing just that. 

I've had people tell me "thank you for telling me what you need, because it gives me a way to help.  I wouldn't know what you needed otherwise."

I guess its all just a matter of perspective.  Funny part, these are people who read the same damn email I sent out! 

During this time, and especially with the way this past weekend effected me, to the extent it effected me, I know that I really need to be more careful with what I am allowing into my life.  I have the control as to who and what I allow in.  And I need to protect that right now.

Limiting stress and remaining as positive as I can will make a difference in how the chemo side effects hit me and how I recover.  Having negative energy in my life will NOT help me right now.  Not at all.  Stress, put downs, negative energy... not things I can have around me.

With recovery and chemo, I need positive and supportive energy in my life.  I am going to focus on that, who has that and who around me will continue to support me through this journey. 

cancer has already made me realize that I need to re-evaluate my life. What do I want to do with the rest of my life? What direction do I want to do in?  And now I'm adding to that, who will be in life going forward?  What relations will continue and what relationships are no longer healthy for me? 

This weekend helped me.  It reminded me that I NEED to control the relationship and influences I allow in my life.  And that I have the power to control that. 

The Saturday morning email will remain a very difficult thing for me.  It is still too close and too raw to not bring tears to my eyes reading it, or even thinking about it.  It was hurtful and nothing will change my mind that this very smart woman did not very carefully choose her words as she did.  It was not written from a good place.  As smart as she is, it came from a place of lashing out.  Nothing will change my mind of that. 

At some point, and only for myself, I hope to be able to find a way to find the ability to forgive her for that.  I'm not there yet.  And that is only for me, not for her.  I don't want to hold onto those feelings.  I need to let it go.  Again, still too close and too raw to get there.  I'm not at a place where I can wish her well.  More at the place of "karma is a bitch and you'll get what you get.  Thanks for being a great friend." 

I know someday I will be able to let it go and have forgiveness.  That's different than forgetting.  I will never forget it.  I will never be friends with her again.  But I will, at some point, release my anger against her for her cruelty towards me with her spiteful and hurtful words.

URGH!  This wasn't supposed to be about that!  Obviously I'm not over it yet.  It will take time to get there.  Lots of time, I think.  The closer someone is to you, the more they are able to hurt you.  She was close.  Very close.  So that hurt is that much more. 

Hmm... side effects....

I guess that's all I wanted to say on that! 

I still haven't mentioned my fall birthday!  That's for another day and another blog post.... but I'm not doing a big 40th in 2014.  I'm not waiting.  Being 38 has sucked.  Wrist surgery within a couple of weeks after my birthday then the wonderful world of cancer since. 

NOPE!  I'm doing a big ass 39th birthday!  The whole 9 yards!  Renting a hall, and everything!  No gifts will be allowed, but people can fell free to make donations to breast cancer organizations  instead.  Hmm... maybe I can put that on the invite.  Lots to plan for, but I have 6 months.  :) 

So wait, early September... big ASS 39th birthday bash for me!