Fresh new hell

You've already heard me complain about my nails - the ridges, the brittleness, the discoloration, and growing in weird shapes......but now there is fun, new stuff with my nails.

A few days ago, I thought I had banged my fingernail on something because it really hurt.  By yesterday, all my fingernails hurt incredibly bad and now many of them are turning dark purple.  So, of course, I Google.  Turns out that the weeks AFTER chemo with Taxol, your nails shit the bed.

So, every time I touch my nails - which is every minute of every damn day! - they hurt like hell.  Just typing hurts.....and getting dressed, and making a cup of coffee, and brushing my teeth.  Sweet.   And according to Google, I can just hang out and wait for them all to fall off.  Why is this more upsetting than my hair coming out?  No idea.  Oh, and Google also says it will be months - MONTHS! - until my hair follicles decide my body is not a hostile environment and graces me with some weird, gray hairs on my head.  It says not to expect your hair to return to it's former glory.....and since my former hair had no glory, I can only imagine what it's going to look like.

Chemo - the gift that keeps on giving!

I went for an routine check-up at my regular doctor's the other day.  My heart rate is 113.  So, now I have to go back in 6 months to check if I'm still alive.  Hydrating!  That is the answer to everything on this journey.

Today is my usual chemo day.  I miss my nurse and Doritos.  :)

LAST CHEMO #16!!!!!!!!!!!!!!!!!!!!!!!

LAST ONE!!!!!!  So relieved!

And I'm breaking out like a teenager....

A new side effect - Red, bumpy skin all over

Kelly in her haz-mat suit getting my Taxol ready

My foot massage :)

I have kept this with me the whole time - from a school friend who's mother battled cancer

I got to RING THE BELL!!!!  And a gift of DORITOS and a certificate!!

Chemo #15

This port has saved me a lot of grief and pain.

Blood labs are drawn through the port too.

Oh boy, where do I start on this week?

We moved from Bergen to Brighton this weekend.   I had been slowly packing throughout the month, but none of the kitchen, books, cabinets, drawers, etc. had been packed.  I have been so tired.  I saved it all for Thursday and Friday.  I got some done on Thursday, but not nearly enough.  On Friday, my last day to pack, Dave went to Rochester to work all day.  Evan was working too.  I had the boys. It was 85 degrees.  We do not have air-conditioning.  I was beat, but I could not stop packing because the moving crew was arriving Saturday at 8am.  Six guys and 2 trucks - I knew it would move pretty fast.  It was physically a bit too much for me.  I would try to sit for 10 minutes to cool down every couple of hours.  My heart was definitely racing and I was overheating.  At one point I texted Dave and whined about it.  Then I left my phone on the couch and went back to packing.  Apparently he freaked out - trying to call me and couldn't reach me.  My Dad came zipping into the driveway and came into the house asking if I was okay. Dave had called a damn ambulance when he couldn't reach me!!!  O M G.  I called him and forced him to cancel it.  My Dad and Virginia stayed and helped me pack all the books. That was a big help.  They also stayed and visited for an hour, which forced me to sit still.  That was a big help, as well.

Saturday was a long and tough day that started at 8am and ended after 9pm.  Two trucks and they still have to send another truck back on Thursday because they underestimated the job.  Those guys worked their asses off and it was hot!  I am in total love with the new house and neighborhood.  Unpacking is a bit easier than packing and it is moving along nicely.  The air-conditioning is a blessing for me!

During the week, I got my 2 Neupogen shots.  I was having a lot more numbness in my left foot, which has spread to the ball of my foot and through all my toes.  It is much worse at night and early in the morning.  I still haven't had any falls or trips, but I am unable to walk barefoot because I cannot sense the floor very good.  I had blood labs done early this morning and my ANC was at a 5, normal range.  The oncologist is leery about my numbness.  She does not want to go too far and cause permanent neuropathy.  She says if I can get through 90% of the chemos, I should be good.  So, with today's chemo, I've completed 90% - 4/4 of the AC and 11/12 of the Taxol.  She told me if the numbness gets any worse this week, that today was my LAST CHEMO.  If things stay okay, I'll complete number 12 of the Taxol and that will be my last one.  Things went well today.  The Benadryl really kicked in.  I fell asleep during treatment, in the car, and again when we got home. The steroids will probably keep me up throughout the night, but I'm hoping for the best.

My heart rate was a "low" 97 today.  I thought it would be higher with the move and because Dave and I have a different opinion on how to do damn near everything.  I'm such an OCD person and he is not.  We arrived 15 minutes late to the appointment today because.....well.....Dave.  So, I was pretty amazed my heart rate wasn't like 289!!! Haha!  If Dave and the move don't kill me, there's no way cancer will!!! :D

Chemo #14

I had my ANC levels checked first thing in the morning and it was 12!  I didn't expect it to jump that high overnight.  The doc says that she wants me back on the 2 Neupogen shots in between chemos.  No issues with chemo today.  She administered the Benadryl a bit slower today and it didn't feel like I got hit with a tranquilizer dart!

My side effects have definitely been ramping up since June.  I'm exhausted all the time now.  My left foot numbness happens daily and has spread to the bottom of my foot a bit.  I'm getting bloody noses.  I think I have my first mouth sore.  I'm not sleeping well, even with my Unisom.  My skin is getting incredibly dry and if I touch plants/trees, I get rashes.  I used to lose my sense of taste for just a few days and now I never regain it back in between treatments.  It doesn't just make things taste funny, it makes things taste extremely foul - especially things with sugar. My tongue is dry and my teeth have been hurting.  My weight dropped another pound this week - 157 lbs now....almost back to where I want to be at 155.  My heart rate was at a new, alarming high: 116 - eeeek!

We move this weekend and I haven't really started packing.  I'm almost too tired to care and if you know me, you know that this means I'm extremely beat down.

JUST TWO MORE!!!!!!!  It doesn't seem possible!!!

Rrrrrrrr! :(

During my last chemo, I met with the physician's assistant and the oncologist and they both insisted that my ANC (white blood count) was so incredibly high (30, with a normal range being 4 - 11) that there was no way it would go low enough to need Neupogen shots in between.  Dave and my nurse insisted that I should get my blood checked in between just in CASE it went low.....because I really don't want to have to miss a treatment and have this take longer.  If my ANC is higher than 1.5, I can receive chemo.  There  was some pushback by the physician's assistant when Dave and my nurse asked if I could have my blood checked today (Tuesday) prior to chemo.  They were thinking, just in case it goes low, I could get a Neupogen shot and maybe have a chance at chemo the next day.  They let us schedule it, but still insisted it wasn't needed because there was no way it would go low after being that high.

So, guess what?  I went in for a blood draw and waited while the results came back.  It was ZERO (0.8).  I should have guessed because I have been beyond exhausted and I always start losing my voice when I go low.  I got a Neupogen shot and chemo is supposed to be first thing in the morning.  I will start with a blood draw in the morning and see if my ANC can get up over 1.5 overnight.

Trying not to stress.....because I just want to stay on track!

Chemo lucky #13

I cannot lie, I was scared to death to head into chemo today after that last allergic reaction.  Feeling your breath get restricted is frightening as hell.

I met with my regular oncologist (who had been away on a 2 week vacation).  She is really the best and I'm so thankful I ended up in Brockport with her.  She feels that the allergic reaction is usually a one-time deal, but is going to double up my steroids and benadryl for the remainder of the times.  My weight was down 2 lbs.  Yay, but the increased steroids will power through that weight loss.  My ANC (white blood cells) was THIRTY!!!!  So, a normal level is around 4-11.  An elevated level usually means that your white blood cells are kicked into gear fighting an infection. I don't have an infection, so the Neupogen shots plus the steroids are probably causing the huge increase.  So, it looks like I may not need the 2 Neupogen shots this week, but I have to have a blood draw in the middle, just to make sure the number is staying high.  My anemia is slowly getting better.  It's at 33 now.  I still have to check and see what a normal number is for that.

My latest symptoms are extreme exhaustion, to the point that I can't lift my arms and my legs feel like they are made of stone.  This is a new level on the tired scale for me.  And unfortunately, it is happening right when I need to keep the house clean for showings and I have less than 10 more days to pack us up.  I do a little work and then lay flat on my back for a good hour at a time.  The kids are watching a lot of tv and iPad and there's nothing I can do about it.  I am still getting a little numbness in my left foot, but it comes and goes so they aren't too worried about it.  It hasn't made me stumble or fall yet.  Two newish symptoms are bloody noses and my finger nails are growing funky - splitting and weirdly bumpy. Some people lose their finger and toe nails during chemo.  I hope I avoid that.

When I got the clearance to go back to the chemo room for treatment, my heart was racing.  My heart rate was 105.  It has been hovering at 98-105 in the past few weeks.  I have to seriously breath and force myself to calm down.  I have the stress from the move on top of worrying about another allergic reaction to the Taxol.  I got the anti-nausea meds, the anti-heartburn meds, a double steroid, and then a double benadryl.  When they were giving me the Benadryl, I was feeling incredibly drugged up.  The room was spinning when I was moving my eyes and I felt like I was moving through Jell-O.  It was hard to stay awake.  When the Taxol was started, my favorite nurse stuck by me and made sure I was not going to have a reacion.  I didn't and then after about 10 minutes of knowing today wasn't the day I was going to die, I relaxed.  Dave gave me one of his amazing foot massages.  Due to the increased Benadryl, driving myself to and from chemo on my own cannot happen anymore.

THREE MORE!!!!!!!!

I miss my eyebrows

I cannot believe that I've been going through chemo since March.  I'm on the home stretch and if nothing stalls me, I will finish the first week of August.  A lot has happened during these 5 months and sometimes I wonder if it's all for real.  I've had my head shaved.  I've been too sick to get off the couch for full weeks at a time.  I barely made it through the end of the school year.  I am finding out that "chemo brain" is a real and evil thing.  I have been exhausted and the exhaustion just compounds week after week.  We found and purchased a new house all within this terrible time.  I have lost my eyelashes.  I have gained weight and look puffy.  And I have lost my eyebrows.  I don't even look like myself anymore.  I take my glasses off before I undress for the shower for fear of seeing myself in the mirror.  It still takes my breath away.  My mastectomy looks like a Frankenstein horror show.  I have no feeling in any part of my stomach and the hip to hip scar is ugly and purple.  I have a huge lump where my port sticks freakishly out.  I will never get used to seeing myself without hair.

I try to tell myself that this is not permanent.  My hair will regrow - but it will takes years.  I will have another surgery to make the mastectomy match my other side - but I will never have feeling there.  My eyelashes will regrow - but the jury is still out on the eyebrows.  I have had two people tell me that theirs never grew back.  My fear of cancer will never go away.  There is no way to know if the chemo did its job other than if I am still alive in 10 years.  I will start taking Tamoxifen in August.  The side effects of this drug are awful, as well.  I will be on that for 10 years.  None of this is going away.  But, I have gotten through the last 10 months of this ordeal by force-feeding the message that this is just a chapter, not the whole story.  I'm not really sure if this is true.  I am definitely changed - physically and emotionally.

So, as I face the last four treatments, weird thoughts run through my head.  I will miss going to the damn chemo appointments.  Miss them!  How can that even be?  The people there are amazing.  My nurse makes me laugh and I enjoy her company so much.  It has been the only social outlet where people really understand what I'm going through.  They see bald and eyebrowless women there all the time.  I can close my eyes and drift off and nobody judges.  They truly care about all my weekly symptoms - and actually ask me about them.  I am in that office three times a week!  And there is nothing like a smile and a laugh with another woman wearing a headscarf.  We know.  We just know without speaking.

I miss having the energy to do things with my family....with my friends.  I miss feeling like I can be attractive and feminine.  I miss being able to think clearly.  I miss being able to socialize and laugh without it taking so much effort. I miss the taste of food.  I miss the clear, refreshing taste of water.  I miss being able to plan anything ahead of time.  I miss not taking medications every day for every single symptom I have.  I miss getting through an hour without a horrible hot flash.  I miss having the stamina to do things I love, like gardening and cooking.  And I miss my eyebrows.