A Litte Break

I finally caught a little break in my blood work.  Here's the skinny:  My white blood cell count, the one that is usually low, the one I have to stay away from germs, the one I take a shot for came in today at 3.7. The average range is 4.0-10.  This is without the Nuelasta shot kicking in yet, so I should get a boost around Monday or Tuesday from that.  That is really good for me.  It got down to 1.1 and that was scary.  My hemoglobin, the red blood cells, the reason for the body juice smoothie, is at 12.6!  Average is 11.2-15.7.  Historically I have been hanging out in the 10's so this is really good for me also.  My platelet count and baby red cell count are also in the safe zone.  Thank You!!! Thank every power and being for catching me a break!  This just means I should feel good for the next two weeks, should-you never know.  I am pretty happy really, it is one less thing to worry about.

I am blogging early because we are going off the grid for the weekend. We all need a good dose of away from here.  Can't say I am looking forward to the car ride though, my stomach isn't totally iron clad yet.  Today, when the nurse was doing the heparin, the cleaning drug in my port, I sucked on a hard candy and held my nose.  I waited for about a good 15 seconds afterwards too.  It worked. I did not taste or smell it, which then of course did not make me sick.  Now I know. I was dreading the gag reflex it gives me.  She said women who have had motion sickness or rough pregnancies are very sensitive to the odor/taste.  That's me.

I waked the kids to school, and wore my friar halo under a hat. So far I am getting pretty positive reviews about it.  I think it looks like I threw a hat on and have regular hair.  It is a pretty good disguise.  That may be my fall back for going in public places and not wanting to be looked at with pity.  I would just be ignored, and that is fine right now.  It actually gives me a little more security and confidence.  Anything helps right now.  I am really fighting the self loathing pity party right now.  I will deal with the help of my friends and family!  I really couldn't do this without you!  I will miss you for Saturday night, but will return rejuvenated and rested.  Have a fantastic weekend. Big Hugs!

I Need a Little More Umpf!

I chickened out with the sleep meds.  I have a hard time putting junk into my body, even though I am willingly being poisoned on a regular basis.  I PROMISE, that I am taking an Ativan tonight, at 10:00 p.m., no ifs, ands or butts about it.  I took a stupid Benadryl, and it just doesn't work.  Done with those unless I have an allergic reaction to something.  I can't tell if I am beat because I am not sleeping, the chemo still has me worn down, or the blood transfusion failed.  Maybe I got lazy red blood cells from a slacker who gave blood for a Target gift card or a quart of ice cream. Or worse, a hobo. I am still creeped out by the transfusion.  In a discussion tonight, a friend referred to it as "body juices".  Okay, that is totally disgusting... barf!  Too late now, what's done is done.  Hobo juice. Slacker juice. Or..Chris Cornell juice...yeah baby... Anyway, it is the lazies I am suffering from, with the random stomach ache. Overall better than the weekend for sure, but not good enough to go to yoga. I am done with trying until the AC is over.  Just not even going to care.  Battle ended, chemo won, yoga lost.

Tomorrow I go for blood-work and I know the drill.  I will be really, really low on the white blood cell count because the Nuelasta hasn't kicked in.  I got it on Sunday so we are only on day 5 and I am the late bloomer.  Which means I will be on lockdown for the weekend.  We are thinking of going to the cabin anyway. No baseball, no softball, no people or stores to avoid, just the four of us and fresh air.  I think we should go-nothing stopping us and my gut feeling is to get out of dodge while I can.  I am hoping that all the other counts are good and that I will be on the up and up for the next two weeks. I will be gearing up for the last and final AC.  Maybe I will get a few things done that I started and couldn't finish, like Marley's room.  I can't wait to post that picture when done.. I can't wait for it to be done because the whole upstairs is full of her junk and she needs to be in her room.  Brad is actually putting the second coat of paint on right now.  Then clean up and build furniture. Yeah!!

Today I skyped with my class and it was crazy.  I wore my fake monk hair and a baseball cap.  I figured that I would keep things as normal as possible. The funniest thing was that all they wanted to do was talk about random stuff.  They asked me if I could guess what they had for snack, showing me paper towels, random stuff....kids never fail.  One girl asked how my treatments were, that was the only thing they asked about me!  Nobody asked how I was doing, or feeling or what I do all day...it was really quite funny.  I had to generate a few questions to keep them somewhat focused.  Either way it was a fun experience and I am glad I had a chance to do it.  I am hoping that I have hair before the next school year, but if I don't, I don't think I can wear a wig each day.  They are hot and itchy. Who wants to work like that. I think I may go bandana, and the kids will have the opportunity to watch me change. Not sure, hoping I have a crew cut by then, just always thinking.

Playing around with the wigs is fun, but at the end of the night I still have to face myself.  The other night, Tuesday it was, I had the oddest thing ever happen to me in a mirror. I was washing up for bed, I had this yellow shirt that has a swoopy, cowl neck (the style that works for my new body, so keep an eye out and let me know where you see cute ones) and I looked in the mirror and I looked like the Dalai Lama.  Or another monk.  I did.  It was weird. Then... I started washing my face and I looked up and my mascara was all under my eyes and I looked just like Uncle Fester, minus the lightbulb.  True. Frightening. Especially when you are a woman.  I washed fast and shook it off.  I will have to say that it takes a lot each day to try to put yourself together enough to face the world. When I had hair and my normal body I would go all crunchy and not care about makeup or my hair and be me. Now I have to have makeup and earrings to make sure I still resemble a woman.  This is hard stuff.  I have ridiculously great friends and family, I don't know how women without the support I have do it.  If you know anyone out there going through this kind of crap, reach out and give them a hug. Even if you don't know them well, an uplifting card or treat goes a long way. We may act and look like we are all good, but there are things you would never understand unless you personally traveled the same road. The physical stuff heals but the mental stuff is an ongoing battle.  I have never been good at deception, and now I am playing that game with my body and looks everyday.  Whoa. Weird.

ZZZZ's in Order

I don't know about you, but there is something bittersweet about sleeping with a little person.  You love the coziness and love, but can do without all the elbows and knees.  Marley wouldn't go to bed because of the lightening, so we let her stay. Fools.  That little person took over.  Around 2 a.m., after I wasn't already sleeping, I left and went to the guest bedroom where she was supposed to be sleeping.  I don't know if I got any sleep, but I had room. Once the birds thoroughly woke me up,  I felt good enough to get kids off to school, but I was barely awake. My eyes, literally (Dane's favorite word) were closing.  As soon as Marley headed for the bus, I headed back to bed.  I put on the eye mask and zonked.  I was out.  I woke up at 10:45.  I guess I needed the zzz's.  I wasn't feeling the best when I woke up, so I took a Zofran.  I showered, dressed and heard a knock on the door.  I have this jumpy feeling when I hear someone knock or come in. I have to make sure I am decent and have something covering my head.  I don't like all this high maintenance kind of stuff, makes me paranoid.  It was Angie, so all was good.  We sat outside for awhile and talked about plants and chickens, it was a nice way to start my day, at almost noon.

The rest of my day was mediocre.  I didn't do much of anything. I wrote letters to my students and rested.  I wasn't ambitious and didn't feel as good as I did even yesterday. I think the lack of sleep pushed me over. Tonight I am going to take something a little stronger for sleep, something left over from my insomnia days last October.  I need a solid 8 hours, I bet it would feel better than a blood transfusion.... who knows.... oh, maybe me.... 

Marley had a game tonight and Dane had a cast party for The Hobbit.  They announced that next year's play is going to be Willy Wonka, so Dane says he is "in".  I am really impressed by his interest in theater.  That will be a fun play to see.

I also signed Dane up for Camp Kasem.  Katie told me about this camp for kids who have parents who have or had cancer.  It is totally free and is a week long sleep away camp, with all college counselors.  It provides kids a week away from all they have to endure, or have endured. There are several locations, but the time and availability took us to Augustana College.  That is where I will have to take him.  Then they bus off to Boone, IA. Which I mapped is another 3 hours!  Dane is going to be 6 hours away from his momma!!!  He totally doesn't care and is excited, me...now I am nervous.. my baby..... Guess they grow up.  He loved 4H camp last year, is going again this year and now Camp Kasem.  It looks like his summer fun is picking up speed.

My agenda for tomorrow is try to go to yoga at Living Well.  Get up and get moving. Being sick to your stomach makes you a lazy ass.  I hate it.  I feel fat and weak, two things that don't sit well with me.  I just don't do well with the lack of energy and all those low counts and junk.  So I hope to do that.  Somehow, in my head, I still believe I am Donnanne prior to this mess.  I can and should be able to do what I want, when I want...no restrictions. Restrictions are for the weak and feeble... Man, I want to back to ME!!!!!!!!!!!!  Just struggling with this again.... too many changes.. and when I feel good, I want to be back to exactly the way I was. No complaints...

Then later on I have to figure out how to Skype.  I am going to Skype my class tomorrow afternoon.  I want to talk to them and wish them a safe and happy summer.  I want them to see me and know things are okay.  I may wear my little friar wig under a hat, not sure yet.   I hope it all works out and goes well, I will have Renee on the other end helping me out.  Friday they go on a field trip and Monday is their last day of school, this will be my good bye, besides my letters.

Well, off to bed soon. I hope you enjoy today's picture as much as I do.  I was cracking myself up.  When Dane got off the bus I asked in my sexiest, raspy voice if he had any cigarettes and told him he was handsome.  He told me his usual, "I threw up in my mouth a little mom," and then kissed me on the cheek and walked in the house.... Can't faze this boy!!!!  Gotta love it...

Oooh, That Smell....

Somehow, I caught a break today.  I don't know if it was all of your good karma and prayers, my positive mental outlook or just dumb luck.  But whatever it was, I felt way better today than the last three days...for sure!  I am not at 100% at all, but I am not flat on the couch and sicker than a dog.  I am still medicating regularly for the nausea.  The newest lovely is that I am becoming more sensitive to odors and smells... I am defining odors as unpleasant, and smells could be good.  For instance, I can smell the horrid taste of the saline they use to clean my port. In fact, that made me throw up this morning.  I didn't actually smell it, I don't have it here, but I conjured it up in my head and smelled it... Okay, now you think I am losing my marbles...not so.  Brad made bratwurst and I almost hurled. Eggs...barf... Remember how I said this is very much like being pregnant and hung over at the same time...well....  Now I am fighting real smells and the ones I have memories of...once more...fun times...

I went so see the surgeon for a check up.  She said that once chemo is done, the AC big guns, my scars will heal faster.  She also clipped my spit stitch and told me that if I wanted physical therapy, she suggested that I wait until after chemo and that I will not regain my arm strength to pull my bow until I am done.  She said I need to be patient.   She also talked to us about new ideas in reconstructive surgery and radiation. She said she just went to a conference where the big debate was about  putting the spacers in after chemo and before radiation. This way the spacers will be there holding the space of the skin before it gets damaged from the radiation.  This would of course, push back radiation, I don't know by how many weeks, but would get the party started.  I will meet with her in July and we will talk about it more. I will have to talk to the oncologist, radiologist and plastic-man too.  It kind of makes sense, I would hate to have my skin all leathery and nasty when they are making my super model boobies, I want them as supple as a babies butt..... he he.....

The evening was a normal drive kid here and there kind of night... which I was lucky enough to be able to do.  I am kind of pooped now. Tired. Not sick at this point.  I know my blood count is low, due to my past history.  I am going to stay home and be careful for the next week until the Nuelasta kicks in, and my new red blood cells adapt to their home.  I hope I don't have a relapse, I think I did last round. I should be looking at my notes, but I forgot to write them while I was sick.  Go figure.  

Only a few more days of school.  I find this hard to believe as a mom and a teacher who didn't get to finish her year.  Soon the kids will be wanting to do everything they are used to this summer and I will do my best.  Marley was a little upset the other day and I asked her if it had anything to do with me, and she said, "kind of."  After a talk I found out that she is worried her summer won't be as much fun because I won't be able to taker her places and do all the fun things she is used to...Gotta love the self-centered world of an 8 year old.... I wish I was 8!

Trudging Along....

Marley just asked me if I just blog about how I am feeling, and I said yes. She said, "Well then you only need one word. Blah. Is that a word?"  I told her it is the exact word that sums up how I feel.  Today was another day on the couch, not much else I could do but rest.  I took naps and hung out with Dane. We actually had some nice mom and son time and just chatted, he was good company on a gloomy weathered and tummy day. The nausea is still here, but I have avoided vomiting for the afternoon.  Bright side!

When I am in these first 72 hours after chemo, my world is rather bleak.  I let myself get weak and wander down some dark paths. It takes all I have to pull me out. I know I am strong enough to do so, but when your internal organs are having a war, sometimes you want to surrender.   Mainly talking out my weak points, fears or pity party topics usually helps. Especially when I am reminded that I it is because I feel crappy and it too will pass...  If I find my rational self, which I usually can, because believe it or not,  I am a rational person.... I can realize that the last two rounds of chemo, the crud lasted a week.  Which means, I have a few more days, with them progressively getting better to endure.  Then if I am lucky, I will have two good weeks. I suspect that the first week I will have low wbc again, because the Nuelasta kicks in late and we took it a day late.  Which means next week I will be homebound to be safe. Then if the pattern repeats, the shot kicks in and raises the wbc, giving me the one final week to maybe get out a bit. I have not felt the transfusion difference, maybe I won't. who knows!  Then Round 4.  I am telling you that it will be a tough one to do, but knowing it is the last one to do, it may be welcomed.   Doubtful.

Planning on going to bed early, like now...even though I have pretty much been in bed for three days in one way or another.  I am hoping I will be on the upswing tomorrow. I have a doctor appointment check up with the surgeon tomorrow.  Hoping she may be able to write me a prescription for physical therapy to build strength back in my arms.  I would like to shoot my bow soon.  All of my scabs are gone and my scars are starting to fade...well, that's kind of funny, there is NO way they could fade, but let's just say they look better than they did weeks ago....and I will take anything on that front.

Thank you for the good karma and prayers to get me through these days...  I sometimes think I am like the Little Engine that Could....I think I can, I think I can.... chugga, chugga....

Round 3 Chemo is Winning....

If I don't attempt to do this now, I won't have a blog at all.  I am down for the count. I feel like shit. This round of chemo is kicking my ass hard.  I don't think a 9 hour blood transfusion day helps either.  Poor me is how I feel!  I can't even make it from one couch to another without throwing up.  Since I am empty, it is just that painful dry heaves and stomach goo.  Fun times.

Let's back up to yesterday... The hospital called me at about 8 a.m and said they had a room ready for my transfusion.  We got there about 9:30 and they started the process.  It was fairly slow getting the blood called in and ready, even though they knew I was coming.  I didn't actually get hooked up until 11:00.  They gave me the blood through my port, but watching it go into me was a little disturbing.  It wasn't a big bag of blood, with all the stuff, just the red blood cells.  It looked thick.  It was kind of gross.  I tried not to look.  My nurse was very sweet and was with me all day.  Once I got going I sent Brad home to take care of the kids.  It was already later than expected.  I then took a little nap.

Come afternoon I had visitors. First Patty came by for a visit, and then Debby and Kristin.  Here are the craziest most loyal friends...on their way to coming to hang with me getting a transfusion, they stopped at the Heartland Blood Center to give blood!  Debby some how convinced Kristin to go.  Ironically, after they tapped Kristin,  Deb found out they wouldn't take her blood because her blood pressure was too low!  Nice bait and switch Deb! How about that for supportive friends? I am not sure I would have even thought of that, or have gone...I am not a fan of needles and K had a big old hole in her arm.

Anyway they stayed with me until the end.  I was done at 6 p.m. and so tired. The red blood cells are supposed to give me energy, maybe if I just wasn't dosed with chemo the day before.  I got home and crawled in bed.  I crawled out of bed today at 1:30.  Took a super fast shower and hit the couch.  Problem is my stomach is so raw I can't even sit up.  This is awful.  I was on the couch all afternoon, and now I am back in bed and it is 6 p.m.  Threw up from room to room.  I am trying hard to ride this wave, but it is a monster.  I am sending the family to the neighbors for dinner and fun, and I am not moving.  I am not eating or drinking, which I know is bad, but it won't stay down.  I am trying.  I am not whining or complaining, I am merely stating the facts...this sucks.  

Quick update.

Hi this is Dane, I am blogging for mom tonight. It was a long day, 9:30 to 6:00 at the hospital. She is home now but is exausted and in bed.She got by with the help of her friends today. She said she will blog tomorrow when she feels better and is awake. I love my mom and hope with all the might in the world that she feels as good as me tomorrow. I love my mom. Thank you for reading this and wish with all your might that she gets better. Dane Marvin

HOPE

Adventures in Chemoland

Instincts.  Women's intuition.  Gut feelings...whatever you call it, listen to it.   That is what kept me from planning on going to Wisconsin this weekend and I was correct.  I also didn't want to go to chemo today, and rightfully so... Get this... I will be spending all day tomorrow at the hospital getting a blood transfusion.  Yep, you heard it right... 2 units of red blood cells.  Yep, not the white blood cells, the shots are working for those.  My hemoglobin is low enough for me to need blood....Needless to say I was upset.  I cried.  I was and am grossed out about the whole thing.  I can't believe it.  I just want to take my poison like a good girl and move on.  But no.  It has to be more challenging....

The good news is that I was able to get the treatments today. They went off without a hitch, just my normal apprehension of sitting there and doing it.  After we were done there, we left the port accessed.  We drove to Rush-Copley and registered for  the transfusion.  I also had to have them draw more blood to type and cross for a match.  I had the option of leaving the port in overnight, or redone in the morning.  Hello!  Who wants to worry about that all night, not me...plus it would make me lose sleep thinking I was going to rip it out accidentally....

The plan.  RC is going to call me in the morning when a bed is available. The transfusions are usually done in the outpatient area, but they are closed on the weekends. Instead, they will be giving me a room for the day.  Once they call, I go straight to that room and tell the nurse that I am here.  Then they access my port again, and hook me up to the bag of red blood cells.  Here is the kicker... I need to plan to be there 6-7 hours!  Holy Crap!  That was quite a shocker.  I was thinking like 2 hours, kind of like chemo, and they give me like 6 drip bags of stuff.  Tomorrow is going to be a long day.  The plan is for Brad to take me and get me settled.  Then he is going to need to come home and take care of the kids and work on Marley's room.  I am going to have a couple friends help me out with company and a ride home. I don't want to ruin anyone's weekend. Man, this sucks.  What can I do?  Roll with it baby, get some new blood.  Since I am a vampirate, I should be more excited.  Maybe I can find me a gold doubloon while I am there.

I am blogging early because I am fading.  My eyes are getting heavy and I think because I am not thrilled with this transfusion nonsense, I am ready to crash.  I needed a good lunch but we were running around and soon I will be on the not eating week.  Oh well, I gain on the good weeks, so we know that part of me is working....of course it is!

Missed the wig today.  Not home for Dane and super unfun mood for Marley.  I think they will understand.  I need to stay positive because I am down in the dumps right now.  Maybe a nap will help.
Just another adventure in chemoland.

Being a Baby

I broke down with another mini pity party today. I kind of wanted to throw a tantrum and stomp my feet, but chose not to.  Why the pity party?  Because I am having a hard time getting excited about going to chemo tomorrow.  I know it is helping me and I appreciate it, but I have felt so good and normal for the last week or so and it is hard to give that up.  I know it is temporary, I keep hearing that word...it seems to be the buzz word...  In the words of Kristin, "Suck it".... I will, but it is really damn hard giving up my feeling good...especially when I know what I am in for... being a nauseated zombie for the next week.  A mom unable to be a mom.  A person who can barely sit upright for days or eat...Why do you think I eat what I want for two weeks, I drop it this next week...Blah...

This is the first Memorial Day Weekend that I can remember where we will not be camping, or at the cabin.  Makes me sad.  I ruined it for my family.  I know they don't care, but I do.  I know Brad needs to get out of this house. Brad is in the office all the time working here and I think he needs a change of scenery too. I robbed them of spring break and now this weekend.  Boo me.  I suck.  I know...it's temporary!  The decision was really mine, and I am going with my gut instinct.  The magic couch on my sanctuary porch has my name all over it! I will wrap myself in cozy blankets and my beautiful quilt and call it a week.  I have decided I want a cryogenic chamber to put me in a deep sleep freeze for a week and then let me out when I am ready to feel better....Beam me up Scotty....

Tomorrow I will wake up, get ready for the day and hopefully walk Marley to school.  Then we will head to Osco for a boatload of medication.  I am low on all the anti-nausea stuff and I need to get the Nuelasta shot that Brad will give me on Saturday. I am hoping I can continue to fend off the horrid side effects of bone pain.  Please, please I beg!  Then off to chemo...I cannot tell you the pit in my stomach that I have right now thinking about it.  I think the one drug they give me that make my hands and feet itch, is creeping me out.  I am being a baby, a big wuss.  I don't like when I have weak moment like this... I must push through...keep pushing....be strong....take the bull by the horns....I can do it...breathe.

As you can see, I have a new persona...I kind of like her. Lady Raven.  The funny thing about this whole wig thing is Brad was laughing and said, "I am so confused-there are all these women!"  Keeps things interesting around here...

Final thought of the night before Round 3-I hope I can wiggle into all of your thoughts and prayers tonight for a smooth chemo sailing tomorrow and a manageable week.  Good night and Hugs!  Thank all of you for your support and love.  I am a very lucky person!

Wasted Day

I don't know what happened to me today, but I was wiped out.  I am not sure if I overdid it yesterday or if it was another night of poor sleep. Either way, today was a bust.  I struggled first with some weird blurry vision.  It was like having floaters, I tried my reading glasses, but that only magnified the blurry spots... go figure.  I was worried about having a migraine. I have only had one ocular migraine, and that was at school in October, when everyone was concerned I was having a stroke. Never happened again.  The blurs didn't last long but I did get a headache and got very tired.  Wait.  Did I have a migraine then? Don't those have to be super painful and debilitating?  Mine was just an annoying headache and I did lay down. Hmm.. I just put all those together now...kinda slow tonight. duh. Maybe it was.... I took some Tylenol, didn't help much and mustered through. I was very unproductive and angry about that.  I have my two days and one of them I have to have a headache? C'mon, that's totally uncool!

I did drag my butt up and do the wig thing, but look at my eyes in that pic.  I look half in the bag, but no...that is from being so damn tired today.

Marley's game was cancelled so we went to Dane's game. It got chilly, but I am a fan of cloudy, cool days...being a vampirate and all.  I was so glad I went to his game, the last inning was so exciting!  They were down by 6 and the other team was cheating by not pitching a younger kid and got caught. So instead of us winning by default, Brad said they would play the extra inning for us to bat.  We scored 7 runs on them and the kids were cracking the ball and on fire. It was the most fun at a game in a long time. That was the highlight of my day.

I have to tell you, I am really not looking forward to Friday. Every time I think of having to go get chemo, I get really sad and almost cry.  I have felt good for two weeks and just knowing that I am going to feel like shit soon really makes me unhappy.  We have decided not to go to Wisconsin, even though many of you have reached out to me and said GO!   I have a gut feeling that we shouldn't go. I told Brad to take the kids and I will be fine, he still won't do it.  I have to trust my instincts, I am usually pretty good at listening to myself. I don't want to be really sick and far away from home and the doctor, with no cell service or internet to contact anyone.  The cabin will be there on a good weekend and I will be able to enjoy it if I wait.  Tomorrow is my last day of feeling good.  I am hoping to try the yoga at Living Well, it will be the first time I could go since I signed up. I was either on a bad week or low wbc.  I will get one session in. Better than nothing.  Even though chemo isn't really painful or anything, I have this premonition that I will be sad and it will be hard for me to joke around like my usual self.  I know this is all for my benefit, and it WILL work,  but it is hard to set yourself up when you know the next several days following will be tough.  I will do what I need to of course, maybe it is just because I am having a droopy day and will feel better about going on Friday tomorrow.  Yeah, let's go with that....

Change of View

A little sleep goes a long way for this weary insomniac.   Brad never came to bed last night, Marley was my snuggy buddy.  He slept on the porch with Bosco.  He knew Bosco would pace all night and keep me up, so he took the hit and wrangled the beast on the porch and zonked out. What a guy!  This morning I walked Marley to school. I enjoy being able to do little things like that, which I can't do when working.  I am trying to do the little things I usually cannot do, and won't be able to next week.  Then I headed out.  I stopped at Ikea to get a few things for her room, I was running late so I had only 30 minutes in there, which is a challenge in itself.  I stuck to the list, and made it in and out of there on time to head to Winnetka.

Today I met Katie in person.  Katie and I have been email and texting buddies since I was introduced to her in round about way when all my mess started.  Meeting, having lunch and just chatting with someone whom you would never know already did this, was really inspiring.  When you think of us bc club members, you often don't think of how it is when you are done with treatment, when you are back to normal. Katie had cute short hair and showed no signs of ever having bc, but she has her story and her strength which makes her a survivor. A hero to her three boys. We also ran into her friend whom also had bc, she was jogging and looked fantastic.  I was so relieved, or energized...just thinking when I am done with treatment I can look great, healthy and go back to my life.... I can't wait. There is a light t the end of the tunnel, going back to me.  It was great to see the "after".  Thanks Katie!  Katie, her sister Kendra and friend are the one's connecting women with bc through their website called The Licorice Project. Check it out.  Good things can come from terrible situations....when life  you gives you lemons...ask someone for vodka...that is my motto!  I have already made new friends from this journey, and friendships are pretty invaluable.  Katie also took me to her favorite walking place, the beach.  It was like being on vacation, just a beautiful, peaceful stroll... an change of view, even for a short time.   Thanks for the great afternoon!

After two hours of sitting in traffic, I made it home.  My kitchen is clean, Marty brought by dinner, Brad is baking bread and an extra Mother's Day cake... the day couldn't get much better.  I missed the bus today, and Brad wouldn't sport the wig, he told me that was "my thing".  Yeah, yeah...  Tomorrow.

* I had a doctor appointment tomorrow with the surgeon for a check up but she had to change it.  I have one concern, and I plan to shoot her an email about it tomorrow.  I think I have "thrown" another stitch in my port  There is a little poky, plastic like stitch near the edge of my scar.  She said this happens sometimes and I have had her cut one already.  Now, because I am me, am paranoid that it will get dirty and my body will then absorb it back and get an infection.  I didn't feel a thing until I verbalized it to Brad.  Man am I nuts.... mind/body connection for sure...  Either way I will email and see what she suggests.  Last thing I need is any infections or weird set backs.  Stay on track!!!  I have two more days...Oh how I am dreading Friday.  I just want to feel like this all the time... aw shucks...   Hoping for  good night's sleep...

And Lamo Was Her Namo.....L A M O....

What a stinky kind of day.  I didn't sleep at all! First of all Brad told me that there was tornado watch all night so I didn't want to take a Benadryl in case there were sirens.  It was hotter than Hell in our room and we were too stupid to turn the air on.  I finally cracked and left. I tried the couch, then the front porch...and my dumb ass dog kept panting and whimpering at me because he hates the wind.  OMG! Around 2 a.m. I found myself back upstairs, locked the dog out of the room and couldn't get my head to stop spinning.  Next thing I knew Dane was getting ready for school and I was a wreck.  I helped Marley and then hit the magic couch on the front porch with an eye mask. Nada. Zip. Epic Fail. Brad was out for the morning came home and told me to either take a Benadryl now, which would have potentially knocked me out, or get up and drink some coffee.  I chose coffee.  What a wastoid I was.  I have four, just four days left of feeling good and I was throwing one away.   Not intentionally, boy was I mad.  I drank my joe, showered, tried to find clothes that looked decent (I hate everything) and decided to run a few errands.  I went to Home Depot to get paint and some flowers. It was so damn hot outside and sunny I couldn't do it.  It was only making me angrier and sadder. I can't even get my own flowers. Lamo.  So I left with a few herbs, feeling pathetic.  Then I went to Trader Joe's for the first time since before the surgery.  I was hungry too, filled a cart with goodies.  If I don't eat them in the next 3 days I won't for awhile...smart thinking... not.

Returned home, feeling like a loser.  So exhausted.  I couldn't even put my herbs in the containers until after 6 p.m. tonight when the sun wasn't cooking me.  Brad has renamed me now.  I am not just the pirate wife, I am a Vampirate.... clever.  yah.

The evening continued to be stinky, lots of things went wrong, lots of messes and spills and arguing. Doesn't help when tired. Everything is escalated.  I know it and I get it, I hate being tired.  My plan of action is this: End blog, eat something small, take Benadryl, go to bed by 9... if I make it that long...my eyelids are heavy already.  Three days left, and today stunk.  Looking to a better tomorrow.

Weekend Edition

I felt so good this weekend that I almost forgot that I was under treatment.  When you snap yourself back into reality it is a big letdown.  :(  Yesterday was a busy day with each kid having a game.  Dane's game was so hot and sunny I almost left.  Then a mom suggested I watch the game from inside the concession stand.  It was a great view, cool and shady.  I got to finish the game.  It is going to be hard this summer with avoiding the sun.  I wore light pants and a light long sleeve shirt and a giant hat.  I actually looked like I should have been going yachting.  After the games we went to my brother's house for my niece's birthday.  Didn't get home until after 9 and Marley had done a mud course at my brother's house and was caked in mud and had to be bathed.  Mom work never ends.  Overall I felt so good, I really wanted this to be not real.

Today was also a good day.  Less productive and a little slower.  Once again, avoided the sun, which makes me a vampire.  So really I am the vampire pirate wife.  Argh! I vant to suck yer blood, mate.  All day I wore a skirt and my daily cami and my bandana.  It is my house and I wanted to be comfortable and cool.  I figured if anyone was coming to visit me, they are my friends and know the deal. I wasn't embarrassed of my flatness.  This is who I am.  I will not be a slave to conformity in my home.  It is the one safe place for me to be...me.  I did have a few visitors, and I just didn't care.  They are my friends and they love me for who I am.  It is kind of empowering to just not care. I cannot do the bald thing, I don't think I ever will be that comfortable. We all have our limits.  Crew cut, yes.....

I am hoping that I will feel good for the next four days.  I almost feel like I only have four days left ever of feeling good. Friday is chemo and then that next week is bad.  I am hoping that whole, chemo is cumulative, idea is all mumbo jumbo.  I don't want to feel sick longer.  One week is enough.  I know this may be crazy, but we are considering going up to the cabin for Memorial Day weekend.  Friday I get chemo...so do I go up there and just be sick there?  I am not sure. I am torn.  I want my family to go up there, it is a tradition, and have fun.  On the other hand, I am worried that it will just really be a bad idea for me to go.  But knowing me, I will go.  My family will not go without me.  All or none.  I will end up pushing myself and going there, I know it.  Maybe a change of scenery, we all know I need it, will do me good.  I guess I can lay in bed there as well as I can lay on the couch here.  I think the one thing I worry about most is lack of proper bathroom. I asked about that.  I asked if my urine would be dangerous to my family if it was in the porta potty.  The nurse said it doesn't leave a toxic cloud or anything and as long as the kids aren't playing in there, (that would be a whole other issue, eww) it would be fine.  I just don't know!  What if it is awful?  What about coming home in the car Monday night? What if that is 3.5 hours of sickness in the car?  Oh Hell, I can't do all those what ifs... I should just plan to go.  At least I will feel good this week to get ready to go.  You just witnessed the crazy!

Final thought.  I find it hard to believe that Friday will be round 3 of the big chemo.  That is amazing. I feel like I just had surgery yesterday, but also feel like this has been forever. The time thing is all messed up.  I will have only one more of the big guns after this.  That is June 14th I believe. Then after that, 3 weeks after I think, I start the Taxol and my hair can grow!  It is still growing and I am patchy.  I am hoping it will stay. Brad thinks it will all fall out too.  What does he know!! One can dream of little things, since my dream of winning the PowerBall was crushed.  Who needs 600 million dollars? Not me I guess.   Money doesn't buy you health and happiness....  I shall quit rambling and move on...g'nite!

Ooops

Forgot to blog last night. A very busy day.  All is fine on the home front and will do an update tonight.

I Passed!

Yippie!  I passed!  I passed!  My blood counts are all in the normal range...not the normal chemo range, the normal regular person range!  I am so happy!  We had the same nurse as last week and she knew I was stir crazy and jonzing to get out of the house. When she returned to give me the news, she had printed the Target logo out for me and gave me my "Target Pass."  Who-hoo!!!  I thought that was pretty sweet of her, they are very nice and treat me well.

I hit a few stores and felt human again.  I now have a bit of freedom to roam.  I will still play it smart and stay away from crowded stores on the weekends and restaurants at prime time. I shall take no chances.  I am going to do this right and stay on schedule.... my master plan has a time line.

I have been struggling with two things this week. One is the mirror. Again. I had a mini pity party last night because when I look in the mirror I do not see myself, unless I look into my eyes.  I feel very unattractive and that can be tough. Brad reassured me it wasn't so, but it is hard to believe. You can hear it from people, but unless you see it personally, it is just plain difficult to believe.  Kristin told me tonight that I don't look all that different, she said she doesn't notice my lack of hair when I am wearing a hat.  Maybe I a master of disguise, which right now is a skill. But it is a skill I am not all that used to. I am a low maintenance gal... Getting "presentable" is hard!  Mainly, it is the going to bed, and getting ready in the morning.. What do I wear? What fits? Do I put the fakies on? What bandana or hat should I wear? Put eye make up on to draw away from your egghead....  I covet Marley's hair... I want mine back... I know, deal with it... I am...but just imagine yourself in my shoes.  Not so pretty eh?

This brings me to the next thing that has bothered me this week. As you know I have urged all of you to make sure you are up on your mammograms.  I know I was taking one for the team, but needed you all to be on your game and get checked out. I have been getting many reports from friends. Most are checking out, some have gone for follow up procedures and unfortunately now, one of my friends has joined the club. The sucky ass cancer club. WTF!  I cannot explain the feelings I have had about this.  I am shocked, saddened and happy at the same time. Not happy for her to have breast cancer, but happy that it was found. What if she didn't go? What if she was one of you that is in denial or say that you will do it later?  She wasn't. And now she has to go through the mess I did and possibly I am in. Please don't email or text me and ask who it is, because it isn't my news to share. Don't worry, I did get permission to share that this has been weighing heavily on my mind and heart.  The thing is, this makes me stronger. I feel that I have, and want to be a role model for my friend. Like Jane and Katie are for me. Women Pioneers.  Problem is that I am not even close to being done and don't have all the answers. However, everything is stinking fresh and I feel that I can help her through the upcoming tests and what not.  I can possibly take a little of the anxiety and mystery away, or at least I hope I can.  I just hate it. I hate that I have to do it and I hate that a friend has to do it too.  I don't understand.  I keep telling her, We Can Do It.  I say that because I believe that.  I didn't know it was going to be more than me. It really sucks.


With all that is going on in my head, with my friends, I still will keep a positive attitude and laugh my way through this mess.  I was at Dane's game tonight and there is this depressing woman who always complains about everything and mopes around and has a dark cloud over her head.  She makes me depressed being in her presence. To me, she is the kind of person who brings the unhealthiness to her, she is unhappy, emanates misery and just is sad.  Here I am, all goofy and goofy looking and I can find a way to laugh. I can find the bright side of just about anything.  It is that mind and body connection.  So, yeah, I feel physically awkward, but inside I am still me and when this me is all refurbished, and tripped out... Pimp my mom style, Look Out World...No Debby Downer for  me...... Live, Laugh, Love....as cheesy and over printed as that is, it is a  great motto to live by.

Thoughts and Love to all!

Cramming

I am planning to study all night for my blood test tomorrow!  I will also wear my glasses!  Man, I have to pass!!!! ;)  Last Friday when I was not given the Target pass, I was pretty upset and the nurse said she has never seen anyone not react to the Nuelasta... in fact she guaranteed it.. Nobody should guarantee anything in this game.   I am so ridiculously good about not going anywhere and being safe around kids and germs, that as you know, I am stir crazy.  I cracked today.  I did get out.  I walked Marley to school, it is a mile each way, so it was perfect.  I also went to lunch.  I met Kristin at the new gelato place in town because they have outdoor seating and I didn't think it would be crowded.  It worked out and I was happy to get away from the house.  But I still feel the need to shop!  I need to stop a the store-there is an emptiness.  I want to pick out groceries and other stuff I want... or need... or just buy because I am at the store!!! I would probably run to the auto supply store if needed just to go shopping.  Soon...anywhere...out of my house stimulation.....

I am still feeling good.  A bit of dryness on my face and hands, and my head itches.  I think it is because there is a constant falling out and growing back of hair going on... and I am wearing a bandana most of the time.  What I can't figure out is why I still have hairy legs.  This would have been the first summer with smooth legs, because I am not a fan of shaving.  Hello....we are mammals.....whatever woman started that nonsense I would like to slap.  Fool.  I can deal with these minor issues as long as I stay feeling as good as I do now until next Friday, round 3.

Fairly uneventful on the chemo front, and that is good news to me.  Fingers and toes crossed again... for raised wbc count tomorrow!  Free me!  I need Freedom!

My kids are starting to become unfazed by my daily hairdos...but I am having fun.  Karen dropped off at least 6 more, I should totally make it to the end of the year.... If they don't clean their rooms this weekend I will be adding a costume and standing at the bus stop instead of the porch. What do I have to lose?

Mind & Body

So far so good. I am still feeling up in mind and body.  This week 2 has been nice.  Last round this was the weird skin reaction time, less this time around because I know what to expect.  I started a new book today, called Mind Over Medicine by Dr. Lissa Rankin.  She is working on the proof that our minds can heal our bodies. Our bodies are built to heal themselves and our minds can work either for or against us.  We have all heard about people making themselves sick, by believing they are sick or unhealthy the body responds in that way. That is the nocebo effect.  In the same way, our bodies can react to healing as form of believing we are being treated or have a positive attitude, a placebo effect.  I just started the book but it is interesting so far, and she is a medical doctor who believes in scientific proof to base her work.   I thought I would read it help me focus on any areas that I am not strong on in the mind/body healing relationship.   I was thumbing through some of the other pages, and went through the checklists on relationships and believe I am right on track.  I love and am loved. That is huge.  I am not a big fan of self help books, and I am not even sure if this is one. What drew me to it was a TED talk that I saw of her explaining her intrigue and research on the correlation between mind and body.  I do believe in mind/body relationship and the powers that we have yet to tap.  I thought I would give this a whirl.  I will keep you informed.

The rest of the day was like yesterday.  I did the exact same thing.  It is still boring and lonely.  I am productive, which is good, and I am working at my own pace.  I guess it is just weird. All of my adult life I have been working.  Yes, I am a teacher and I have summer time off, but for the most of my career I have had children to care for during that time.  So when I have this luxury time, (being a feel good day) it is hard for me to not waste it away now. If I ever have a day off of work in regular life, I am usually filling it to the brim with activities or appointments.  I think now on those cherished days, I will slow down.  I will have my coffee at a leisurely pace. I will work on a puzzle or take a nap.  I think as much as I am bored, this may slow my pace down for my future.  I need to stop and smell the java.  I guess I am learning to chill. I know, I know... It has taken me 43 years and cancer to slow me down...hmm.  I wonder if it will stick... or will I go back to being on hyperdrive all the time?  Guess that is to be determined.  I am not going to stop doing....I just may add a few more leisurely "doing" activities to my life.

Okay, today was Day 3 in my "torture my kids" project.  Today I greeted each kid, respectively, at the front porch in an afro as they came home from school.   Dane wouldn't look.  The other kids were dancing disco, and he was shielding his face!  Perfect!  When it was Marley's turn.  She stopped, had a smirk, and ignored me.  This is really fun.  Those wigs are itchy and I can stand then for the 5 minutes each kid gets.... Not sure what tomorrow brings... I have 12 more days to go.

Bored Stiff

Day 10.  Last round my face started getting all dry and weird, so I have been slathering lotion to prevent it from happening this round.  So far so good.  Today is also the day that the Nuelasta should kick in if I am a "late bloomer."  Let's hope. Otherwise I am just plain bored.  I am stir crazy. I barely talk to anyone all day.  I just want decent enough counts to let me run an errand to a store. Look at stuff, groceries...I don't care.  I am sick of being here.  I am bored and lonely all day.  Sure Brad is here, but he is working all day and barely stops for lunch. I am pretty much here trying to figure out what to do all day.  I know it sounds like a terrible problem...and when working we covet the few days we get to just be at home.  Here is the thing.  I like freedom.  If I want to do a project, let's say bake.  I go to the pantry and see I am missing a key ingredient I get in my car and go to the store. Now I have to wait until Brad can go or a friend calls and says they are at Target, do I need anything... YES I DO...pick me up some white blood cells and cream of tartar!!!

I think a lot, and I do what I can.  I am working on Marley's room slow and steady.  I think about the next steps, I think about going back to work, I want to plan, I think about friends and other issues... but besides a thinker I am a doer.  I just want to get out.... Waaaaaaay.

Although being lonely and bored today.  I was a bit productive.  I stripped wallpaper (XRT today, too many commercials), did some puzzle (whoo-hoo), strung my tags, came up with a great idea to help others through bc, completed another book on Blurb and made smoothies for the kids.  My life is so full. Poop.

I have nothing to complain about today really, just being a whiner. I felt good, the sun was out (even though I prefer overcast days now) and got a few things done.  I hope I am not overdoing it and will regret it in the next day or so.

I greeted the kids with another fabulous look today.  Dane wouldn't look, but the kids he walks with were like, What's tomorrow? Pink? Rainbow?  I said, "You just never know."  Which is true about life, that's for sure.

Productive

When I went to bed last night I had a strong overwhelming sadness sweep over me.  I miss my mom.  It was Mother's Day and I really wanted her.  I have wanted, and needed my mom from day one of this ordeal and it just hit me hard last night.  I talked to her.  I believe, or hope, she could hear me.   I have asked her to help me through this, to protect me and send me strength.  I know she already has.  Most of all, I told her I loved her and missed her.  Nothing replaces a mom. That is always a lingering thought with this mess, I want my kids to have me, their mom. Sometimes I calculate in my head how old they would be if I only had 5, 10, 15 years... I know. Morbid. I am pretty sure you would too.  I don't like it, I try not to.  I want to see my babies grow up.  I want to and WILL.  Not an option.

I woke today feeling really great.  I have one little canker sore still, but not bad.  I religiously brush my teeth several times a day, or rinse with baking soda to help keep my mouth sparkly clean.  My hair still growing. The peach fuzz continues my false hope of my new head of hair half way through my chemo... pipe dream.   I am not going for a recheck tomorrow on day 10 of the Nuelasta, I don't want bad news, I will wait until Friday.  She said it will work. It better.  I am being good, staying out of public places.  I started Marley's room redecoration.  I spent 6 hours stripping wallpaper listening to the Loop.  Jealous?  When was the last time you got to listen to Whitesnake, or 8 Pink Flyod songs followed by the Stones?  It was a productive day.  It was followed by a baseball game, outside and away from people.  Late dinner sponsored by Kerrie and now winding down. Kind of felt like a normal day.  Hoping for a repeat tomorrow.

When Kerrie stopped by at lunch, I asked her what look she preferred, and she asked for Cleopatra. I dont' have her, so I opted for blonde.   It got some giggles.  Giggles are good.  I waited on the front porch for Dane to get off the bus and he was mortified. Perfect.  I told him if he didn't get his homework up or acted up, I would be waiting at the bus stop each day in a different look.   I might just do that anyway....Just a bald mom trying to have fun....

Happy Mother's Day!'

Happy Mother's Day!  I hope everyone had a great day!  It was beautifully sunny but a tad bit crisp.  Good for me so I can wear a nice warm hat! We had a nice breakfast and enjoyed my tasty special cake...mmm... Marley made me a piece of toast, gave me a card and a little potted flower.  I got a card and a couple of coupons from Dane.  He is so 12. His coupons were for Love, A hug, and a kiss.... he told me he didn't feel like doing chores... Nice!

After breakfast Brad and I decided we HAD to get out of the house. Both of us are stir crazy. I said I wanted to go for a ride and suggested Silver Springs State Park.  I knew they had an archery range so we packed the bows.  The ride was so pretty, never have been in that area before. We scoped out the hiking, the lake, the boat rentals, nice place.  Then we went to the range. We were the only ones there, which is good when you have kids.  I helped Marley shoot, she is getting better but has the attention span of a gnat.  Dane was doing well and shooting from a lookout.  Brad was shooting 50 yards, so far you couldn't even see the block.  Me.  I couldn't shoot. :( I couldn't even draw Danes bow, I could draw Marleys, but that is nothing.  I am going to start working on strength. Maybe ask for some physical therapy so I can get more out of the exercises, and back to the things I enjoy.

The ride was great, the cake was great, but I have to say, my sweet little angel Marley was a piece of work.  She was so whiney and obnoxious I considered leaving her at home!  I don't know what got into her because she started out the day so nicely.  She drove me nuts.  She apologized and asked if I accepted it. I said of course, but asked if she had to pick Mother's Day to act out?  She said she had no idea why she was a brat. We hugged it out... but man, she was terrible. We read our book and all is good in the world... Hallmark holidays are overrated....

As for me... I felt great all day.  I had no stomach ache, no side effects that were new, I slept a little better last night with the Benadryl. So for me, that was my Mother's Day gift...just feeling good enough to take a ride, enjoy nature and be with my, ahem...wonderful children...

Hope your day was as good as you expected or better. For all of you that let your family skate by on this holiday, which was me until a few years ago when I threw a raging fit... find one thing and make it a mandatory tradition... I get the cake.  My once a year, Brown Sugar and Chocolate Chip Pound Cake with Maple Espresso Glaze. I even remind..."Don't forget the cake, or dig yourself a grave in the backyard", screw subtlety!  :)

 I am looking forward... to two weeks of feeling good and no new side effects.  That would be awesome, and it could be a far fetched dream...House arrest this week will get Marley's room stripped of paper and maybe even painted.... fingers crossed.  I always have my fingers crosses.....    Hugs!

4:20

Ha, peaked your interest right? Well it isn't the 4:20 some of you are familiar with...and if you have no clue what I am referring to, ask someone... so let's say you have grown children, ask them...if you have teenagers..don't ask them, you won't be happy.... Plus I have only heard of this 4:20 nonsense anyway....  Anyway, the 4:20 I am talking about is the time I finally left bed last night because I hadn't fallen asleep and lying there any longer listening to Brad snore was just about to drive me batty.  I got up, which I never do, and went to the porch couch.  I had my eye mask on and probably an hour later I fell asleep for about an hour.  One would think I would be exhausted, but all day I was fine. Brad called me manic, said all day I was talking 100 miles a minute.  Maybe I have hit a new side effect...crazy!  My theory is that I was so blucky all week that as soon as I was okay I had catching up to do.  Last night all I did was think, think, think... I was thinking about friends, getting a vintage camper and going on little overnights with Mars, things I want to do, etc... just couldn't stop..... Phew... I should be tired, but oddly so... it is 10:00 and I am still going..

It is safe to say that I am going to take Benadryl tonight to sleep.  Otherwise, tomorrow I am sure I will crash and I don't want to.  Speaking of tomorrow, Mother's Day, has historically been a bust.  But in the last couple of years, with threats of digging holes for their graves...things have been better. A few years ago there was this cake on the front of Bon Appetite, the most delicious looking thing, complicated too....I wanted it.   I have now had it the last two years and I am currently watching Brad put the maple espresso glaze on it.... tomorrow is redeemed by that cake alone...and Benadryl.... 

The highlight of the day was going to see Dane in his first play.  I wore my fake boobies and felt a little more confident.  I wore the hat that I got as a gift last night and felt okay about my public appearance.  I asked Dane how I looked and he said great, didn't even notice the boobies.  Natural enough eh... I fooled a 12 year old... Not Mars though...she came right up and poked...dink, dink, dink...

I am really proud of Dane for doing the play.  His part wasn't huge but he was a king and sat on a throne like royalty.  He had a cool mask and a well executed fight scene... he died well too....  He had three performances, and I chose the right one during the day, a lot less folks.  We had friends and family at each show and he is sad it is over.  That means he enjoyed it, and it kept his mind off of the yuckier things in life...

Kinda feel like I could ramble and write forever, and be the crazy lady, but I will put you all out of your  misery and hit the Benadryl.

Below is the first posted picture of me without hair in public... May we all have a good night's sleep!  No 4:20 for me....

Goblin King, Goblin Mom, and Mini Monster....

1.1 = no fun!

Here we go again... low wbc count!  Dang nappit!  I went in there all confident that I was to get the go ahead to shop...all I wanted was the okay to go to Target and Trader Joe's.  I miss you guys!  When the counts came back I was at a 1.1!  That was the low score I had before they gave me the Nuepogen. My other count, the one with the name I can't remember, the one for the making of the new cells is at .8.  The nurse said I am not in the danger zone, but the stay away from public, kids and all that again.  She also said most likely I am one of the late bloomers for Nuelasta- that it often takes people 10 days for it to kick in, since it is a longer lasting medicine. Today would have been day 6.  So.... I did not get the go ahead to go to Target.  Boo. ....(Thank goodness for the call from Renee about a TJ's run, I was jonzing for some goodies) I guess this means more house arrest for me.   I was told to take a Pepcid to help my stomach. Today was better.

My plan for next week-chemo wise, if the same... my face is going to feel like it is falling off... I am preemptive lotioning up to counter act some of that.  Then I will continue to feel better and my hair will fall out.. Oh, wait... that can't happen again... Well, actually it can because my entire head is peach fuzz.... So...in my mind, my hair is growing back already!  See, I told you side effects, schmide effects.... I will have long luxurious hair.... right Susan? :)

My mental plan for being on lockdown is to work on Marley's room. I have wanted to but have only started packing up her books.  If I feel good and am stuck here, I am going to have to have a project.  Once I get the go ahead to roam about, I want to go to the booby store and use my prescriptions and get a good set of prosthesis.  Here's the thing.  I have the softies, and a wig...both prosthesis, and haven't even used them once.  I don't know when or what occasion I would need them. However, I have also been on lockdown just about forever and haven't gone anywhere really.  Brad said going to a baseball game or to the doctor's office is public. Well, then I guess I just don't care that much.  I don't know.  I am still going to have them for work and those special occasions, "Honey, crack out the good boobs, where having company!"

Dane is in the play, The Hobbit, right now.  Brad and Marley are there along with a bunch of friends.  I chose to stay home because I thought the afternoon show tomorrow would have less people. Let's hope. I am going to sit far away from everyone, but I have to go.  I asked Dane what he would like me to wear to his play, my wig, a hat...he said, "Wear the bandana Mom, people understand."  Last night Marley wanted to sleep with me and she said don't wear a hat, and I reminded her that she told me that she preferred me to always have something on.  She couldn't remember saying that, looked at me, shrugged her shoulders and said, "Hair? No Hair? Your still my mom"... and then rubbed my peach fuzz and told me I was the best baldy.  Kids are great.  They love you no matter what... unless you ground them from their ipads or say no to a popsicle at 8 a.m.  Just so mean...us moms.. unfair!

Tomorrow is Saturday and believe it or not no games... but Dane has two plays.  I am hoping to do a little something around the house to make me feel somewhat of a productive being-as long as the stomach issues continue to wane.  I hope everyone has a great weekend!  You know where to find me.. I am always home... sad but true... 

Relapse

My tummy hurts, and has all day.  I feel like a little kid and want someone to make it all better.  I slept pretty good last night, which is nice, but awoke with the tummy ache.  I spent some time emailing this morning and then felt the sandman knocking at my door. It was about 10:15 and I sunk into my magic couch and was out...I woke up at 2:15.  Holy Moly, now that is a nap.  I can't recall a nap that long since I was a kid and came back from camp and fell asleep while unpacking.  Problem is that the fire in my belly still hasn't gone away.  I have done NOTHING today, I am a loser... I know, not a loser, but a bum... kind of a good dreary day to be a bum.  My only goal today was Target. Didn't make it.

A teacher friend came by and brought over dinner, thank you so much Jackie, and I am ready to pop it in the oven.  Men folk are out being dumb and playing baseball in the rain.  At least I will have a hot meal for them when they return.  Proof that women are smarter....

Tomorrow is blood work and hope that the Nuelasta shot is working.  I also hope I can be more mobile tomorrow. I have things I want to do! Places to go, People to see....

Mixed Bag

Busy day, mostly all in a good way, but I had to fend off a raw tummy all afternoon.  The morning was alright, got Mars off to school, Ride Your Bike to School Day, and had my yogurt.  Hung out playing Words with Friends-against myself....until my pal Susan came for a welcomed visit.  We laughed and caught up and just had a nice time chatting.  Just about lunch time, my stomach started taking a turn.  I made a bland, kid lunch of peanut butter and jelly and laid down.  I am exhausted by now.  I didn't sleep last night and I could feel the slumber crawling in...however, I had a doctor appointment to go to.  Figures.  Up I got.

Still fighting the cramps, we went to see the surgeon.  The appointment itself went well, I am healing nicely, she scrubbed my wounds down...yowza and treated a few of the scabs that are just about done.  She said I looked great and gave me the prescription for real prosthetics.  She also said that the port is just uncomfortable and that after the first big treatments, it may get better. Before seeing her, we were in the waiting room with pregnant ladies, shares with an OB, and other women
for whatever.  You know who I was?  I was the scary lady in the waiting room! I was the black sheep.  I was the one nobody wanted to make eye contact with or worst of all....become.  That holds a lot of power.  As much as I wish I could have made my head rotate 360 degrees to freak people out, I knew I had a responsibility.  That responsibility was to act normal.  I was joking around with Brad, talking like I wasn't nervous or to be pitied (both of which I wasn't).  I had only my bandana on and nothing else to hide my head.  I was the young, normal lady with her husband who must have been dealt a bad hand.  Way better than the pitied, poor thing without any hair.

The tummy ache saga continued.... I had Shelley visiting on my front porch when we got home.  We had a nice visit and she gave me a fun Movie Night In Kit for me and the family.  It was put together by several teachers that I used to work with, wonderful, caring ladies!  Whom I miss!  Thank you!  As soon as Shelley left, it got worse. :(  I felt like I did on Sunday. Uh oh.  I wanted to go to Marley's first softball game.  I did, but had to sit and not really move. Came home, hit the couch.  Just not right.  I am still not feeling well. I wanted to order a pizza, not sure why.  I wanted a thin crust pizza.  Instead Brad made me some pasta-which hit the spot. I think I wanted red sauce.  When I was pregnant, I ordered pizza without sauce. However, this is still the mixed bag of the flu and pregnancy.  I still feel crappy, probably going to take a nausea pill and go to bed.

Great visits-just a touch and go kind of feeling day...Tomorrow is a new day......no more belly aches!!

Mirror, Mirror

I woke up feeling pretty good today, which made me happy.  Then I had a cleaning lady come and that made me even happier.... so far an upswing of a day.  In fact, most of the day I felt pretty darn good.  I got hungry, kept food down and didn't stay horizontal all day.  Improvement.  I can't say that I feel awesome right now, but it could be the end of the day winding down in my gut.  The thing that is bothering me the most is my port.  I really don't like it.  I mean, I like it for blood draw and chemo, but I  HATE it otherwise. I always feel it, it rubs on other parts of me, I feel twinges in my chest and arm. It creeps me out totally. There is a constant feeling of uncomfortableness.  I am going to the surgeon tomorrow, I will tell her my hatred of this thing protruding from my clavicle.  Yucky.

My second issue is the hair. If I lived up north on our land, I would care less.  If I lived solely around my friends, I would care somewhat less, but I don't. I live in a society where women are seen as attractive via physical features like body shape and hair.  I have neither.  I just don't recognize myself and it is a little foreign to me.  I feel very much like Sigourney Weaver in Aliens, all butch and sci fi.   I just look soooooo different.  I have been working on photo albums when Brad frees up the computer, and I cannot believe that I am that same person.  I was that person my whole life and now I am someone I can't connect with in the mirror.  I know, temporary.  I get that and it keeps me going. But as for the daily thing, of course I think I look awful. Of course I think that I scream, "sick person". Of course I think I look like guy. Of course I think everyone is looking at me. Of course I wish I looked like I did, only a couple of months ago.  It is easy to say deal with it- and of course I am, but this is a difficult thing for a woman. This is a difficult thing for me.  I feel like there is nothing womanly about me, and even a grungy girl like me cares about that.

No worries, I am not depressed.  I shower quickly so that nightmare is over quickly.  I am sporting the bandana look.  My family's favorite look.  I am not unhappy, I am not even mad anymore. I am harnessing all the good energy I need to heal myself and move on.  Next year I will be a new woman, with lots of crazy red hair and super model boobies.  Until then I will be the one hiding on my porch, for a few more days at least, visiting with wonderful friends, reading to my kids, and finding other ways to make my body heal faster.

Slight Improvement

Today was definitely better than yesterday.  I had a little food and could be vertical for short bits of time.  When I am really sick, I can't even read, but today I finished my book.  Other than reading, I did nothing much.  I felt bored again, which is another good sign of feeling better.  Problem is that I am not done being tummy-ill, and if I feel okay for a few minutes, and say...go do laundry, it gets worse again. Baby steps.  Not much to report.  Continual hope for a brighter day tomorrow.  And a new book.

Ring the Bell, She's Out.

This will be short.  Chemo round 2 has officially kicked my ass.   I have been down and out all day. I have been vertical for approximately 4 minutes the entire day, and half of that was getting sick.  I am wiped, beat and done. My stomach hurts constantly and the taste in my mouth is gross.  I haven't cried, but I just want today to be over.  I have been on the porch couch all day and now in bed.  I can't do much more of this day.  I have been diligent with the meds, I can only imagine what it would be without them.  I couldn't eat, barely pushed some water down.  I am hoping for a better day tomorrow.

All gone

After I blogged last night I found myself in the kitchen with my head on the counter and Brad with clippers in his hand.  Marley gave me her teddy and held my hand.  Off it went. It was strangely invigorating. The patchy chemo hair needed to go and this was the next step in this wicked journey.  They left a dork patch in front, like we did with Dane, but I couldn't bear a picture. No way, take it all off.  So now I am officially bald.  I don't have a smooth head because all of my hair wasn't out, so I am a leopard.  I didn't cry.  I have a nice shaped head, so at least I don't have to deal with a goofy shaped noggin.  I am ready for the marines.   I put on the hat Kristin knit, it is my new nighttime sleepy hat, keeps my head warm.  Hair keeps you warm, burr....

Didn't sleep well, lots of shifting to be comfy for the nausea.  It feels like having the flu.  Stomach ache, tired, not hungry, nasty taste in mouth.  The whole family woke early, not sure why that happens on a weekend.... My first shower as a new me was a little freaky.  I look so different. I almost had to laugh.  Who was I looking at?  That is something I need to get used to.  My showers are faster now and I will save millions on shampoo and conditioner.

Today I did okay.  I am keeping the nausea at bay. If I lay down it is better. Not a lot of appetite, but made a smoothie and had that.  Lots of rest on the porch.  Brad gave me the Nuelasta shot, so far so good.  I am wiped out, although I rested all day.  I need real sleep, deep sleep.  Kids were busy all day so they were happy and kept the house fairly low key.

Tomorrow is a new day....

Round 2

Round 2 successfully given.  Strange to be excited about something like that, but I can stay on schedule for now.  The wbc count went from 1.1 to 5.5 and the normal range starts at 6.0.  Everything else looked on track also.  Went through my first weeks with doc, got a little check up and off to treatment.  We had a new nurse today.  She came in and said my name and asked me what I would like to be called.  I responded, "Your Highness".  Cracked myself up. The best part is she called me that the whole time. "Your Highness can I get you a warm blanket?"  "How are you doing Your HIghness?"  It works for me..  I had the Benadryl drip prior, I got the itchy feet, hands and scalp, then they gave me a little steroid for that and it knocked it out.  That Benadryl makes me higher than a kite and sleepy. Too bad there wasn't a burrito joint around the corner.  Otherwise, treatment went well. I did not lose weight, added two pounds. They were so happy, yeah pounds.... she also said you retain water during chemo. Either way she wants me to stay the same and eat normal when I can.  Okay, if normal is cheeseburgers, fries and chocolate, I am good. I have had 3 burgers since first chemo. Prior to that I had given up red meat for about a year.  Why burgers? Iron?  I don't know. Fries? Not sure, but I am doing a highly scientific inquiry about it. I have asked 3 other about cravings and 3 of 4 had potatoes on the list.  Hmmmm.

I am on the porch couch feeling pretty crappy.  I am doing this now because I am hoping to fall asleep soon. Debby came by for a visit and tried to give me a comb over for fun, but it looked so bad we didn't want to document it.  It is pathetic.  Brad is busy making kids dinner and he will shave my head later if i don't fall asleep.  Kids are in kitchen laughing and goofing around and my balding head is nothing to them, it is so odd.  They freaked when I got the bob, and nothing for the short spike and upcoming baldness.  Kids are resilient.  Friends want to see a pic of bald me, but I am pretty sure I don't have that self esteem ability tonight.  I just don't.  I was talking to Jessica and Karen this morning about hats and hair and when I came back from chemo a beautiful, wide brimmed hat was waiting for me, thank you Jess, it is adorable.  I am sure I miss thanking people on a regular basis, but please understand my mind is dead.  I went to Osco to pick up shots and couldn't remember my pin number to pay.  I haven't shopped in a long time and couldn't do it  I had to have the guy run it as a charge.  I hope I don't get stoopider... that would be bad....

I have to say another special thank you even though I am pretty sure I don't have any readers from my class, (Oh, Mrs. Marvin uses bad words).  Steve, my friend and sub, helped my room mom organize a class gift because they wanted to do something.  They got me a Vitamix.  Brad met Steve at Costco and picked it up earlier.  I am so happy.  It is way easier to drink a healthy meal when nauseated than eat it.  This is going to be a HUGE help in my recovery. Thank you to everyone involved.  So many nice people out there.

Dane and Marley have invaded my recovery haven, they are both on ipads and being dorks.  There isn't any time to be a "patient"  I am always Mom!   I'm glad they just want to be with me, I like that.
Not looking forward to tonight or the next few days.  I will hold tight and, take meds and rest.  I will get through it.  For now, I am going to close my eyes and try to sleep or get my head shaved.  Maybe they can all shave my head while I am sleeping... Now there is a good idea....

Cross 'Em All!

I have been good all week, so I am banking on my diligence of staying home and away from all kids and other germy situations that I will be able to get Round 2 of chemo tomorrow. I feel really good and would have loved to have this week to go out to lunch, go shopping and have a bit of normalcy back in my life.  But I listened and stayed home. My wbc better be ready to go, I would be devastated if I got pushed back a week.  I would be very, very upset. That would mean I would be stuck at home, feeling good-it may even make me clean and sort more, and who wants to do that?  I just want to stick to the plan and calendar and go on the scheduled times.  I am aware that whenever you think you have something mapped out, it goes in a different direction.  I just hope not.  That is why they invented mapquest.

I am prepared for the weekend.  I have been mentally preparing for a zombie apocalypse for years, and  now I have to prepare for post chemo wipe out.  Killing the undead is a lot more glamorous, I must say. Carrying my bow, wearing leather pants and a sleeveless shirt, with perfectly toned arms.  I have boobs in my dream, and they are perky.  Long, red braided pigtails, and ass kicking black knee high boots....  That's right walkers, come to mama.... Anyway, I cleaned out my front enclosed porch and have turned it into my healing sanctuary. Or clean porch.  I am blogging from there now, as Brad is crashed on MY comfy couch...and it's not 8 yet... (I just need a 10 minute nap)  I have 12 windows and a French door to look out a the world from my couch. Nice. There is plenty of room for my kids to read or hang out with me.  Jane brought me another great chemo kit for tomorrow and it has a healing cd, I will have that in here to sooth me to a slumber...  It is one of those  places that is comforting, and awesome in the rain.... which I hear we may get a shower or two....it's just been so dry, we need the rain...  I have saltines and ginger ale.  I have Luna bars if I get an appetite.  I am as ready as I can be....Oh, I should make sure my comfy sweats are clean...  I can do it, yes I can!  My zombie outfit is much sexier, damn.

The hair is still on my head, thinning by the minute.  The worst thought is how I may be feeling all crappy this weekend and I will sleep through the rest of my fun hairdo and I will wake up bald. Or worse, super patchy.  Like a chemo patient... Nooooooo!  I shall have the clippers at the ready.  It is inevitable, yet not like the saying, I shall prolong it....

Overall a fine day. Did some texting, emailing and Kristin brought us lunch. We worked on a puzzle that I started a couple of weeks ago, but am not working on it too hard.  I also met one of my email buddies that I accidentally connected with, who has come out the other side of this same kind of crazy.  Tammy only lives a few blocks away, it is nice to have supportive friends close by.  It helps fill in the void of being alone on this journey.  When I see healthy, happy women who have done this, it is really good for the soul.  I still have a great attitude.  If you can make yourself sick, why can't you heal yourself too....

Fingers and toes, even eyes....cross them all and click your heels... I never thought I would utter these words,  "I want chemo tomorrow."  That would be 2 down, 2 to go of the first batch..... Half way through....

Afternoon Delight...No, not like that...

Summer showed up today!  Wow...this makes me rethink the mid length wig choice.  I wanted to take a walk today so I started after Marley got on the bus.  I wanted to do a couple of miles in the neighborhood, but after about 10 minutes I realized that I did not put sunblock on my legs.  I did my face and arms and totally missed my legs-and it was hot.  I didn't want to take a chance with the sun so I headed home and quit. I made it only a tad over a mile, which is pretty lame.  Next time I will wear pants or remember sunblock on all exposed skin.  I am learning that I need to think like a vampire...no sun, dark glasses...

The new hair is great.  It is making the thinning process much easier.  I rolled over this morning to a face full of short hair, but I knew that would happen.  I showered, wet my hair and barely touched it with a towel and put a little mouse in it, and bam!  All done.  Hair was wild and ready to go... I have greatly underestimated the power of  short hair for years.... Now that I like my shorty spike, I am losing it quicker.  I am sure by the end of the weekend, I will be as bald as a baby.  For now it is fun, easy and I like it...

The rest of the day I worked on projects around the house. When Brad left for the office for awhile I worked on my photo books. I was looking at photos from last year when Brad and I went to Aruba.  There were a few pics on the beach with wild red hair blowing in the wind and filing out a swimsuit.  Now a year later, I look totally different.  I shed a few tears.  I have transformed.  I feel like I look old and completely not me.  I don't feel that I look old in those pictures just a year ago.  Sniff. Sniff.  Move on... When he came back I went back to work on my enclosed porch. I found some really cool things of my grandparents.  I found a photo book of Chicago from 1905, and a scrapbook that my grandma made of her double wedding, all the cards she got, and when she had her children. The pages are like dust but the cards are all intact and very cool.  I found my great grandparents marriage license from 1912.  They were married on April 3, then my grandparents were married on April 3, and that is also Brad's birthday.  I wish my mom would have done that day also, then I would have had to do it too...

My afternoon was the highlight of the day. I had Kerrie come by for a visit, then Renee came by with a beautiful quilt that Diane from work made me, and all my colleagues signed. Gorgeous.  Then Theresa came by with all these adorable "tags" made by everyone at work with well wishes, quotes and funnies.  It was a real pick me up afternoon.  It is boring being stuck at home going through old papers and cleaning.  I miss my friends and camaraderie of work and socializing.   I am hoping that the shot I believe they will give me for wbc will keep my counts up and I will be able to have a few good weeks between chemo where I can leave my home.  I am like on house arrest without the exhilaration of  doing the crime.  I was talking with Kerrie and I am thinking of taking on a life of crime. I have a bunch of hats and wigs, and can go in disguise and nobody will know who I am.   I need to first figure out the crime spree I want to go on, and then I need to come up with a clever name.... Hmm.  Guess I know how I will be spending tomorrow....Oh, my days are filled with so much to do!!!!