This is the first chemo round where I actually feel defeated.

Coming out of this round, I was knocked out from the start.  I was too tired to go to work.  I was too tired to focus on homework.  I was too fatigued to keep up with my freelance job.  I was almost too tired to just sit in my chair and knit or crochet.

I have great coworkers and managers that allow me to take as much time off as I need.  I am thankful for their knowledge of the situation and their understanding.  But I still feel guilty when I am not in my seat at work, doing my part.  Everyday I'm out, I feel like I let them down.  One day last week, I had to leave early when I began to feel feverish and weak.  I felt so guilty for leaving 'my post', and felt like I let myself down for not being strong enough to push through.

In school, my teachers have been a great support and have helped me continue with my classes without missing crucial deadlines and helping me stay in the program.  Several have granted me 'as needed' extensions on assignments when something comes up.  While most times I try to stick to the schedule, like every regular student, this week I took several days to turn in an assignment that I should have done first.  But every time I leaned over the keyboard to start typing, I pooped out and would just fall back into my recliner.  I felt like somewhat of a failure since I couldn't focus or stay on track.

Lastly, I tried to get back into the freelance work I used to do and feel like I'm making a contribution to our household again.  I was a risky worker before and often missed deadlines, so the owner took a chance and told me there were no more extensions, and she could cut me off.  But I didn't listen.  After chemo, I couldn't muster up the strength and energy to finish the assignment on time.  I ended up having to forfeit the project, and lost the pay for it.  Again, I feel like I've failed. I failed myself and I failed to not be useless.

I've never felt so beaten.  Like no matter what I do, I can't overcome how I feel.  Can't?  Or won't maybe?  Am I just making excuses?

I just feel sad.  Sad that I'm tired.  Sad that I'm fatigued.  And partially because my sugars are dancing around right now.  I think I need a taco.

Today is the day after chemo.  I woke up and and started my day by driving to hospital for my follow up visit with Dr. L.  As soon as I get to her office, the financial lady pulled me into her office and gave me some saddening news.  My insurance only covers 50% of my services at their hospital.  Now I've met my $750 deductible for the plan, but the tier that the hospital is on requires me to pay $5000 out of pocket before the insurance will begin covering the rest of my services.  So, I was required to sign up for a payment plan with the office, since my balance has reached over $1000, not including the port surgery I had in March.  I had to put down $70 today and am required to pay $100 a month.  If I miss 3 payments at any time, they can send my account to collections and Dr. L. can refuse to keep seeing me until I pay the balance.  Needless to say, I broke down crying in the office - not like anyone cared. 

An hour after my appointment time, I finally got to see Dr. L.  She did a quick check of my port site and asked if I had any problems with it.  She examined my lump and said she couldn't note any differences without a sonogram, which I'll come back for in 6 weeks (and pay another $70), after my next chemo treatment.  The only good and productive thing to come from this visit is that she said she will continue my hormone replacement therapy, which my other DRs had stopped 2 years ago and have been squabbling with each other as to why/why not I can't be on it.  She said she'd contact a DR she knows and finally get me some relief.

After we left Dr. L's office, a man approached Jeremy and I in the hallway and asked us about Dr. L.  Apparently, his wife has just been diagnosed and, of course, he is frantic and unsure if they chose the right DR.  I told him some of my story and told him I think Dr. L. will be a great DR  for her and help her find the right oncologist.  His wife was there for her consultation, so he said they were just getting started.  When we finished talking, he actually hugged me and Jeremy.  After we left, I felt bad I hadn't given him our number or email to stay in touch.  I got a feeling we'll still see him and his wife in the office sometime.

After Dr. L., I went back to the infusion center to get my WBC booster shot.  Last time it really worked to shoot up my WBC count, which will help protect my immunity and help protect against infections.  We'll see how it works this time.

On the way home, we made a stop at the Russell Stover's outlet.  We splurged a little - Jeremy bought me some chocolate to make me feel better.  Although I don't feel much like eating it now, I know in a few days to a week I'll be craving it.

How I feel when I go to the doctor now....

Monday was my second round of chemo.  It still hurt like hell when they stuck my port today, even with the numbing cream on.  Ugh  It went a lot faster than last time, even after getting a late start.  I spent about 5 hours in the infusion room, watching cartoons and knitting in a recliner.

I was very good at watching my sugars and made sure to stay on top of it with the Humalog.  While they are still high, they are no where near what they were the last time I had chemo.  I had a high protein tuna sandwich for lunch and drank lots of juice and water from the clinic.

After chemo, I headed over to my cousin's house and took a long, well needed nap.  I didn't expect this round to make me so tired, so fast.  Within a few hours of infusion, I was already exhausted.  I ate a little bit of dinner and snacked on other things, but actually ended up going to bed early.

My hair is falling out faster, and it saddens me to find it on my pillow, or in the car, or on my recliner.  I feel like a dog shedding all over the furniture.  I want it gone - but I want to hold onto it for as long as I can.  I feel so torn.  I never know what I want anymore.

My hair started falling out today.

It's not a lot,but it is coming out in chunks.  I noticed it while taking a shower this morning, so I'm sure the drain is partially clogged by now.

This is like part of the final frontier for me.  I could kid myself into thinking maybe this wasn't real or maybe I wasn't that sick.  Or maybe I would handle things better than I did last time.  But I was wrong.  Losing my hair and losing my breasts will be the final kick in the butt that tells me I'm not ok.  I've hit the first milestone.  It will be a while before I have to face the next one.

I'm going to have to start wearing caps so I don't shed everywhere like a dog.

When I was younger, my cousins used to call me Mrs Clean when I finally went bald.  It was funny then and we all laughed.  I don't know if my sense of humor is as sharp as it used to be.  I don't know if I can handle that kind of funny.

It has been a whirlwind of these past few days...I'm not even sure where I landed at this point.

Monday was my one week check up from chemo to see how I'm doing and make sure I'm alright.  I had to drive all the way back to Dallas for the DR to draw blood and check me over (and another $70 visit!).  The good news is that my blood counts look very good and the chemo hasn't knocked them down very much, so my body is still in there fighting.  The bad news is that my nausea and gastric problems are all par for the course, and may only get worse from here.  They called me in some different types of meds this time to see if that works better.  The doctor seemed very pleased with my progress so far, and said that I didn't have to return next Monday for another check up - I just have to get some more blood work done here in Tyler.  So I won't return to their office until my next chemo visit on the 20th.  Whoo.

Monday also marked 17 years since I was diagnosed with leukemia.  I was able to walk down the hall to my pediatric oncologist's office and say hello to the team that once took care of me.  I won't say it was surreal seeing them on the day I was coming for another cancer check-up, but it was definitely some kind of weird.  It's hard to believe they met me 17 years ago when I was just a little girl.  They got to see me grow up over the years!  I love these men very much and, without sounding to dramatic, I owe my life to them.  I'm grateful that they referred me to such great specialists when I needed help again. 

And April 6th was also my 7 year wedding anniversary to my wonderful husband.  We weren't sure how to celebrate - since we had my DR appt and I was too sick to eat anywhere.  We wondered around one of the Dallas malls and decided to eat at a local restaurant (which I paid dearly for later). But I'm still so happy to have Jeremy by my side through all these years and going into this whole ordeal.  I'm glad he doesn't tell me to be sane, or be cheerful or even be upbeat.  He just lets me feel how I want and is there for comfort when I want it.  I love him so much.

Then, Tuesday came.  As I said before, my husband and I decided to go out to eat for our anniversary, even though it seemed risky.  I ordered a plain dish, and brought most of it home in a to-go box, so I hadn't thought I had over-done it.  But I was wrong.  I was woken up out of a dead sleep around 4am with severe nausea and cramping and spent the next several hours in and out of the bathroom.  I had to call into work, again, which made me feel worse.  I spent another day laying around the house, eating crackers and sipping juice or water and feeling totally useless.  The highlight of my day was when Jeremy cooked me a small steak for dinner, which I was able to slowly eat and so far have had no incidents....

I've come to realize that sleep helps subdue the urges and cramps, so I'm hoping tonight I can sleep all the way through until the alarm goes off - without any interruptions. 

On a totally random note - the swelling has finally gone down from my port surgery and I can now see and feel the port sitting under my skin.  It's so weird!  Like a tiny alien trying to escape or something!

Apparently day 4 and 5 is when the sh*t really hits the fan....

Day 2 went nuts over glucose and sugars, and Day 3 went better with just a little bit of foginess and fatigue.  But Day 4, OMG! 

Day 4 I woke up with severe nausea, stomach cramps, zero appetite and severe fatigue.  I had to call into work and spent the entire day laying in my chair and lurking back and forth to the kitchen and bathroom.  I had no energy to even knit/crochet, put away laundry, or even watch Netflix.  I don't remember the last time I felt so low and crappy.  Although my sugars were regular, I still felt too sick to eat, so I think I managed one meal the whole day.  My last attempt at food was some Malt-o-Meal around midnight - which only made things worse before finally trying to go to sleep.

Day 5 was just as bad - except I made myself go to work.  I felt like I couldn't stay home again, so I gathered my strength and drove myself to work.  But the nausea and fatigue followed me there.  I have nausea medicine they sent home with me, but I can only take it once a day.  Ugh  I didn't move very fast, but with each piece of paper shuffled and filed I had the overwhelming urge to barf on everything.  I think it's just sad when my biggest accomplishment is eating and apple with some peanut butter without wanting to throw it back up.  Whoo!

Today is Day 6, and I actually woke up not nauseous!  I have somewhat of an appetite today, but I'm worried about spooking it away.  So far a bowl of cereal has triumphed!

I knew chemo would be hard and I knew it would make me feel like crap - although I have no idea for how long or how strong it will be.  I can handle feeling like poop and handle feeling weak and useless at times.  But I don't know if I can handle losing my love of food.  If I can't eat and can't enjoy eating some of my favorite foods, I may just fall apart.

I feel like Kendra on The Cleveland Show when Donn threatened to slap the taste out of her mouth:

"Not the Taste!"

Talk about hitting the ground running nd not stopping until your legs give out from under you...

After staying at my cousin's house in Dallas, I woke up late for my first appointment on what I'm calling 'after chemo day'.  The day after usually includes a follow up shot to boost my immunity, but today I was also going to follow up with Dr. L. and have her check on my port after surgery next week.  So I wake up late and hit a HUGE pile up on the highway.  I took my regular insulin the night before, so I did my routine morning blood sugar check in the car.  It was almost 600!  As soon as I got to the hospital, my first stop was to stop by Dr. S office and let his nurse know.  She said it had to be from the massive amounts of steroids I received the day before, and that my endocrinologist, Dr. B. would need to make some adjustments.

My next stop is to go downstairs and get my booster shot.  On my way to see Dr. L., I stopped by Dr. B's office and tried to leave a message for the nurse as to what was going on.  But, the nurse said Dr. B. wanted to see me right now before I did anything else.  Dr. B. is nice, but he can be pretty stern, so he was somewhat upset with me that I had not notified him of starting chemo and the drugs I had.  I explained everything to him that I knew, so he was able to put me on additional, fast acting insulin for the weeks I am on chemo (many of you know this as a sliding scale).  He explained that I would use this insulin only during the week I am on chemo, and the steroids should stop effecting my sugars so much by the end of chemo week.  He gave me some insulin right in the office and told me to wait an hour to check it again.

But during this hour, I ran over to Dr. L's office, who said my port incision and biopsy sites were looking great.  I will do another sonogram with her after my next chemo treatment to see if there is any early improvement.

Then I went back to Dr. B's where we found that my sugars were down, but not enough, so he gave me another dose of insulin and had me wait another hour to test it.  An hour later my sugars had gone down again,but were on borderline as to where he wanted it.  He said I could go home, but had to keep a close eye on it.

Several hours later, my sugars had jumped back up to over 500.  I panicked!  But luckily Dr. B. told me to call him if I had this problem.  I called the after-hours line, who got me in touch with him.  I told him everything I'd done since I left his office, so he adjusted the insulin to a higher dose and told me to eat some protein and recheck in 2 hours.  I was a nervous wreck and was so upset that nothing had been working all day.  By 1am, I re-checked my insulin and had brought it down to 302! (I know everyone is thinking this is still a bad number, but the goal for tonight was to just get under 400 and stay there).  I called him back and told him the 'good' news.  He seemed pleased, and sleepy, and told me to take one last, small dose of the new insulin before taking my now increased dose of regular, nightly insulin.

So, here I am at 3am, so relieved that my sugars are actually responding to medicine and so sleepy from the turmoil of today.  My belly feels like a pin cushion and I seem to have a collection of pin holes surrounding my belly button - there has to be over 10 puncture wounds from the different does of insulin I had to take today.  I'm running out of good places for future shots...

Dr. B. told me that during the week I have chemo, I need to increase my protein and cut back on carbs, just to help stay ahead of things along with the insulin.  This week was my first dose, and it feels pretty hard getting my sugars back under control without a heads up, but he seems to think it will level out by the weekend.  It's a good thing too - I was dying to come home and celebrate my first round of chemo with a pint of Ben and Jerry's.  But I guess that can wait until next week.