Frustrated....

I'm sure you picked up on my previous post how frustrated I was last weekend with the crap on my face and the crazy arm pain.  And I hate feeling this way, and hate even more posting about it, cause I feel like a whiner when I do.  I'm tough, and I can do this, get through this, but doing it with a smile on my face is getting to be tougher than I really am. 

I started my new chemo drug, Taxol, on Tuesday, and will get it every other week with my last one being July 13th.  Woo-hoo, an end in sight!  So, as I am asking my fabulous NP, Jennifer, what comes after that?  Follow up when/how/bloodwork/scans/how often?  And she proceeds to say
"well, after your radiation treatments......"
Ummm, no.  I stop her.  I was told NO radiation.  By three docs-one surgeon and two oncologists. 
She was shocked, to say the least, that I was told I wasn't getting radiation.  She said they always to radiation on node positive patients.  Especially since my nodes were macrometastatic. 
Aha!  That's where that word 'macrometastatic' has come back to haunt me from my pathology report. 
When the surgeon and the first oncologist we met said I wouldn't need radiation we didn't have my path back yet.  BUT when Dr Sheehan talked to me about my treatment plan, she said I wouldn't need it either, and she had my path report in front of her!  Ugh!!  Double frustation!!

So Jennifer dug through my chart to see if she could find any notes about yes/no/maybe on rad therapy, but couldn't find anything.  She is going to chat with Dr Sheehan and find out for sure for me this week.  If I do have to do radiation treatments, it could add 6 more weeks onto my treatment plan, putting me into September before I'm done.  This is where I really feel like a whiny person, but somedays I don't think I can get through  the day, let alone think about adding 6 more weeks.  And I'm lucky-there are many, many people out there who wish and pray their cancer treatments were done and over in the (roughly) 7 months of treatment I will endure, and here I am complaining.   Complaining about the treatments that will help me actually put this in the past, and cure me! 

AND, it appears that the rashy ick on my face indeed was shingles, and the arm pain is directly related to the shingles irritating the nerves that run down my arm. 
Good news?  My face is darn near all cleared up.  
Bad news?  My arm still hurts like hell.
Badder news?  My arm pain will likely not get any better through the rest of my chemo treatment, because a common side effect of the Taxol is peripheral neuropathy and joint/muscle pain.   They gave me a script for some Neurontin to help with the nerve pain in the meantime. 

The biggest suck about this is how well I have been feeling lately.  Until the arm pain and the shingles, I had been feeling great.  Been taking evening walks with Hailey-about a mile and a half-not too much, but some good outdoor exercise.  Eating way better-even though I have no appetite for anything in particlar-been making chicken and salads for dinner, drinking more water, limiting my soda intake to 1 a day if any!  I even dropped 4 pounds!   Brian got all of us a family membership at a new gym opening up near us, and I was looking forward to starting up a regular exercise regimen. That way when my chemo is done, I could start up with some hard core training again, so I can get ready for my reconstruction surgery in the fall. 
I feel like I get a couple steps forward, but then something happens and I fall back five!  It's times like this where my good attitude is something I really have to work on.  Besides that, I know if I start crying about it, I won't stop.  Maybe not ever.  And I'm sure that's not good in helping clear up my stress induced shingles outbreak either!  So, if for no other reason than vanity, I will suck it up and trudge through.   I have so many positive things in my life, I'm going to make the most of those and stop worrying and fretting about when I'm done.  It is what it is, and when they tell me I'm done, I will be done.

So, back to my new chemo drug-Taxol.  I mentioned above that I will have peripheral neuropathy, which is numb, tingly, cold feeling in my hands/feet.
I should have less nausea, so much so that I am not even going to be taking the Emend this time around-they say I should be ok with the Zofran and Compazine.  The Taxol will affect my white blood cells, and they do expect those to drop, but I will also be getting the Neulasta shot to help counteract that.  This drug will affect my hemoglobin, so they will watch that closely and if it drops too much, they can fix it with a blood transfusion.  It seems the worst side effect is flu-like, achy pains all over my body which they say hit on days 3 or 4 after chemo.  Tomorrow will be day 3, so if I can't get out of bed tomorrow....
Another downfall is that it takes about 3 hours to infuse the Taxol, and that is after vitals. wait. port access. wait.  labs drawn.  wait.  meet with NP.  wait.  pre-meds.  wait.  Then finally the three hour infusion.  I spent 7 hours at the cancer center Tuesday, and that is darn near exhausting and draining in itself!  My wonderful Dad went with me this time, and he even got a little snooze in while I finished my Fifty Shades of Grey Series! 

Enough with me.  Brian has a follow up appointment with Dr Saterlee tomorrow which should be his last appointment with him if all goes well, and he's pleased with his progress.
Parker leaves for Canada tomorrow with the Williams for his fishing trip.
Hailey has a babysitting job tomorrow and Friday, then volleyball camp and conditioning next week.
Ethan had a follow up in Allergy/Immunology today-all is well with him, just has to get some lab work tomorrow to check his Igg, albumin, liver function tests and complete blood count.  Nothing out of the ordinary-just yearly labs because of the immunoglobulin he takes. 
Great news is that Friday we have a social worker visiting us to do an intake interview to see if he would be eligible for the Lopez Waiver.  If he does qualify, we go on a waiting list, but once his spot comes open, he receives benefits through this private waiver which would pay for his formula, diapers and the other out-of-pocket expenses we have for him-up to $20,000 per year!  Once accepted, it usually  takes 2-3 years on the waiting list.  But once he is on the waiver, he is on it until he is 18, or passes away if that were to happen before he turned 18.  That would be a huge relief for us, as right now we spend about $23,000 per year out of pocket for his needs!

Then Saturday is RIDE DAY!  Yeah, can't wait!  It looks like good weather for the day too!  We are so appreciative of everyone riding that day in support of us and the Fire family in need!  Another reason I hate to complain about any of what I'm going through, when people have been so kind and generous to us! 

And of course my awesome co-workers!  I stopped by the NKCH today to say goodbye to Mary Beth, one of the CT techs I work with who is retiring tomorrow-she will be greatly missed!   And my supervisor Cheryl who is going to be out most of the summer with a huge back surgery she is having tomorrow.  My love and best wishes to them both!  And I can't put in words how fortunate I am to have the job I have, especially after having to tell them I may need 6 more weeks of someone working my shift in case I do have Radiation, and them just waving their hands in the air and telling me not to worry about it-whatever I need to do!  A huge thanks to those who are volunteering to work my night shift all this time, and now even more!   And the cards and gift cards from everyone sure are helpful when my paycheck only has 8.25 hours on it!  I love you all! 

No more Debby Downer post-gonna shake this off and slap a smile on my face and get through this.  I said I was doing this one time only and everything it took to ensure my greatest chance at a cure, and I meant it.

So really, what other choice do I have???

:)