Our little redneck

I'm still feeling good! Just in total isolation at home to prevent infection...hoping the shots have kicked in and I have some level of defense building up by now, but we are being extra careful until Monday. One of my besties pulled a jedi ninja grocery drop off at the house yesterday. Haha. Poor girl was stuck talking through my front door to a crazy bored lonely cancer patient for at least 15 minutes after she told me she really needed to run some more errands. I didn't want to let her go!! I totally reminded myself of all of the people I used to deliver meals on wheels to...haha.

Stinks because I'm stuck in the house now that I'm finally feeling good. Wishing I could just grab my little guy and run around town to do some fun Austinite hippie dippy things. Waaah. He's having a blast by the way. We just chatted and he couldn't have cared less about me. In other circumstances it might make me feel bad that he doesn't ever really seem to care when I'm not around, but honestly, it makes me happy that he's happy because there's nothing I could do to get to him any faster if he weren't!

Get out and do something today! And talk to someone (the kind of talking where you can look at another person face to face). Haha.

Love
Jenn

2 down...10 to go! (No, this is not a typo!)

Had a great appointment with Dr. Jim first thing this morning. Lots of good stuff from that meeting...

1.  Dr. Jim says that despite what feels like some upsets this past couple of weeks, I am actually handling treatment well (keep in mind that my tumor and the lump in my armpit are GONE!)

2. My energy levels are up! Yay! I actually even ventured out yesterday to grocery shop with our little crazy monkey (I've been staying home mostly to avoid germs and honestly, because I wasn't 100% sure I could keep up with Austin!) He loooved pushing his own cart and picking out things to buy...'Mom, Austin needs those apples.' We had a lot of fun.

 3. Like I do every appointment, I reminded Dr. Jim that my armpit is still sore. It's something that really bothers me because I had a similar feeling in my breast when I was diagnosed. Now it's gone. I had this feeling in my armpit shortly after I was diagnosed. It's not gone. There are all kinds of worries that flood if I allow myself to worry, so I just try and stop myself from stressing, get to the root of why it's really bothering me. And the only thing I can do to alleviate this stress is to ask the same question to poor Dr. Jim. Over and over. Dr. Jim expects me to ask it every time. And every time he has an answer for me that makes me feel better (at least until the next appointment when my armpit is still sore). haha. He assures me that the aches and pains in my armpit are normal and in response to treatment. I've had a lot of trauma in a very sensitive area (biopsies, port surgery on the same side, cancer cells dying, nodes shrinking, etc.) these things themselves cause discomfort and as the area heals it's constantly 'reconstructing itself' which also causes discomfort. He always tells me that this feeling is going to continue throughout this process and it does not mean that my treatment is not working. So WIN! My armpit is sore because it's reconstructing and rebuilding into a newer and better cancer free armpit :)

4. Reminded me to moisturize. He's hilarious. The actual very first thing he said to me after I told him that I was feeling much better was that my face looked dry. Haha. Then his exact words were to 'keep on top of that.' Taxol has dried my skin out sooo much!! I have been smearing jojoba oil on my face all day long and it just soaks it up. We left my meeting with him sending us off to the infusion room for my 3rd round of Taxol thinking that taking care of my dry skin was the biggest of our worries.

BUT...we were WRONG!

While we were waiting, my chemo nurse came out and with the biggest smile and so sweetly told me that my labs were awful and I wasn't going to get treatment today, but we were still waiting to hear back from Dr. Jim on the plan for the day. My mom and I laughed. We thought she was joking. I was feeling great and Dr. Jim had just sent me to get treatment. He didn't even schedule me for another appointment until 3 weeks later from today because things were looking great! Nope. He hadn't received me blood results from the morning yet. The nurse was right. They came back awful.

My red blood counts (the counts that would indicate energy levels) are up, not back to a normal range, but not low enough to delay treatment. But the whites (the counts that indicate your body's ability to fight infection) are pretty much down to nothing. Not an exaggeration. I basically have nothing in my body that can fight off infection. Nada. Zip. So, although I feel ok, I'm not sitting in a pretty spot if I picked up a bug. My body can't fight off a thing. Remember the word 'Neutropenic?' Yup, me again.

So...I was approved (after 3 hours of waiting!) for a shot similar to the Nuelasta shot I received with A/C treatment to boost my white count, but this shot works much much faster and is not as long acting as that drug. I go back again tomorrow for another dose. I was also prescribed a heavy duty antibiotic to give my body some type of defense against any bacteria that I might be exposed to between now and when my levels come back up.

The game plan is to keep me infection free over the next couple of days. At home. WIN!! If I can stay fever free, I can stay at home. Everyone expects that I should be back up to a safe range later this weekend. Between the timing and the shots, should be good to go! I will go back into the oncologist office on Monday to check my levels. If all comes back ok, I will get my third dose of Taxol then. If not, we will try again for Thursday. I may or may not need more of the Neopterin as we move forward. We will see!

So, is what it is. All things that are expected to happen with the drugs I'm taking. Dr. Jim just called me at home to check in on me and make sure that I wasn't too bummed out about today and also to put my worries to rest that just because I'm delaying treatment a few days does not mean that cancer is going to start growing again (does this guy know me or what??!).

Our little monkey has been (very happily might I add) shipped off to Granny's for the night as today was a school day for him and I can't risk being exposed to any other little kiddos germies that he might have picked up there. He was thrilled to go see Aunt Boog and Paw Paw Gene. Check out the fun they were having today fishing. 

I know that my mom's house looks like a sweet relaxing vacation spot, but I have one word for you:  Rooster. And for you city folk, they really do crow at the crack of dawn.

P.S. Notice Austin is totally obsessed with wearing that funny doggy hat lately. At school this week he didn't want to take it off. Haha.

So, if you made it to the end of this, we are still WINNING over here. A little frustrated, yes. But we have a lot to be grateful for tonight. A whole lot.

Love
Jenn

Slowly but surely...

Feeling much much much better. I have even gotten my butt in gear to do 10 minutes of yoga 2 days in a row. That's huge. Trust me. I'm struggling with how to balance getting myself back active now that I have a bit more energy and not totally burning myself out. My body needs a little warming up as I have been pretty lame lately!

Aunt Stinky took Austin out for a fun weekend including a trip to the toy store, Cabela's, bbq and of course, chocolate.

For a little laugh...check out how foolish this mom and dad look sometimes over here. Have I mentioned before that we are really into our kid? Hahaha. Auntie Maaya caught us fawning over Austin while he was just doing something totally ordinary. Poor kid has no chance on his first day of kindergarten :) Please ignore the laundry and my bright white bald head. Well now you're looking. Should've just kept quiet.

I have a dr's appointment before my next infusion on Thursday morning and I have a feeling that my levels will be up enough that I won't need the red blood cell boosting shot. That's a good thing :) Hopefully, slowly but surely my body will get itself back up and running to whatever 'normal' is these days. Will keep you posted!

Love
Jenn

Sorry Ladies...he's taken :)

Check out how handsome Jonathon's Uncle Bernie looks with his new haircut in honor of Yours Truly. I told him that he looks way better bald then I do. I also told him that I think Austin would call him a golden eagle instead of a bald eagle like he relates my shockingly white dome to. Haha.

Love
Jenn

2 down...10 to go!

Been a while without posting. This will be a long one!

Had a few pity parties for myself this past week because I am totally worn down! I just have no energy. I started gradually feeling better Monday evening and a little more and more back to myself until today's infusion. Now I'm back in the dumps again. I read that chemo treatment is like body surfing. You have a little bit of calm between the waves of meds...just enough time to barely catch your breath and then BOOM, hit again with another wave of craziness that knocks you back down...looking forward to another calm time asap :) I actually feel fine (no nausea or headaches or any of the other icky stuff that came along w A/C drugs), but a few aches and pains and fatigued like I've never felt before in my life! It's totally frustrating to feel ok and want to get up and participate in life and have legs that feel like they weigh 800 lbs and eyelids that won't open. My brain wants me to get out there, but my body won't cooperate!

Austin caught me tearing up this week during a pity party and he said, 'Mom's okay, just frustrated!' Haha. Then he told me to 'Relax. Relax means to calm down' and started doing this really cute yoga pose he likes to practice and says, 'I am strong, I am bold, my own balance I can hold!' I can't take any credit for that one. It's another Sesame Street gem :) But I do have to say his timing couldn't be more impeccable.

Of course anytime I try to snap a pic of him doing yoga, A says 'No phone!' and collapses his pose :)

Thanks to my besties Brenda and Maaya for getting me out for a few minutes on Saturday for Kerbey queso and a trip to Lick ice cream shop. The weather was really nice. Cancer gets you all kinds of perks like free kid entertainment, but apparently does not get you any special dibs on queso. Haha. Again, I'm a pretty lucky girl to have such amazing friends.

Auntie Brenda was stuck in the playdough creation zone for most of her visit...and I enjoyed every minute of it while lying in bed. Haha. Austin saved the snakes she made for him in a plastic baggie :)

No wonder Auntie Maaya is one of Austin's favorite main ladies!? Their love for queso is strong...he never shares w me either!! At least most of the time Auntie Maaya holds back from licking the bowl, but I wouldn't put it past her

 Updates...

Saw the same dr. I saw last week (not my oncologist, but she was able to collaborate with him to make decisions). Let's start with some WINs and I'll sneak in some other stuff so you're in the know in here somewhere...

1. Got all of my labs completed that are required for billing insurance for the red blood cell boosting shot! And they all came back showing that I qualify for the med. Basically, lots of tests are needed to prove that my anemia is chemo-induced and not a result of any other issue. So, should hear back tomorrow about how that is moving forward. Unfortunately, although it is a pretty cool drug, it's not that fast-acting, so if I am able to get the med, it's going to take a while before I feel the effects.

First item found from results...my iron studies came back great. This means I have all of the iron I need in reserves and in each red blood cell that I have (all of the drs. and nurses were super impressed. One lady even said they were 'fantastic!' and had another nurse come over and look at them with her). I'd like to take some credit for this one as I do make conscious daily decisions to treat my body well with the food I eat. Thank you thank you thank you to Grandma G and Aunt Chris for the lifetime supply of daily green juices, sweet Celeste for the yummy roasted beets (she really should start a catering delivery service...her food is sooo good!) and Aunt Stinky and Uncle John for the tasty grass-fed sheep's liver. Haha. Doesn't all of that sound delish?! Well, it would if you felt like your legs weighed 800 lbs and it's one of the few things you were in control of to try and make a difference! (Plus, having no taste buds makes it a lot easier to slop up some liver!!)

Second, test results were all negative for any internal bleeding. Let's count that as a WIN too. Ha. Take 'em where we can get 'em!

Third, kidneys are alive and kicking.

2. Although I have all of the iron I need, I just don't have enough blood cells to carry it around my body! The chemo drugs have made my bone marrow production sluggish and it's just not able to keep up. My counts have dropped to a level that I qualify for the bone marrow boosting med, but not quite low enough that I need a blood transfusion...but I'm pretty darn close to needing that too!

3. We are hoping that I can continue to ride the numbers right where I am until I can get the new drug and boost numbers up. I really am not that into getting a blood transfusion. My oncologist is also hopeful that my body is still responding to the A/C left in my system and last week's dose of Taxol on top of that was just too much. The dr. I saw today actually said, 'This is totally kicking your butt.' Sometimes it's nice when a dr. speaks a language that you understand. And I did. My butt is feeling very kicked lately! haha. So, as the A/C lessens, Taxol shouldn't take as harsh of a toll on my body in future infusions. We are trusting that they know what they are talking about on this one!

3. My white counts have dropped again too meaning that I am at risk again for neutropenia (that's when white blood counts drop dangerously low and I'm at serious risk for infection). My counts in this category were so low that I actually was not in a position where my doctor would typically approve a patient to receive the dose of Taxol I got...most people would either be put on a delayed schedule of treatment or a lessened dosage of the drug...I was approved because...who knows?! I didn't ask questions. Just happy to get my butt-kicking drugs. haha. Maybe Dr. Jim approved my treatment because he's been keeping up with our blog and knows me and my crew can pull through :) Will be laying low and keeping away from pretty much any new bodies in our house for at least the next week. Sorry, our house is on lockdown friends! I'm just a few little cells away from being back in the South Austin hospital, so we are going to be extra careful this round!

4. Remember I told you about Taxol causing strange reactions. I didn't experience any breathing problems today. Thank God!! But I did have an awful reaction of sudden onset pain that started in my lower back and started creeping up my lower ribs. It wasn't unbearable, just kind of scary because it happened so fast. The nurses immediately shut off my drip, checked my vitals, popped me some Tylenol and then went back to dripping it super slow after the pain subsided. No more problems after that! (I honestly was more worried that my mom might have a heart attack than anything that could go wrong withe me! Haha. She is pushing 50 and I had to get some of those crazy lady anxious ways from somewhere?!) The nurse explained that infusion rates can cause different reactions, so for me, we now know that we have to start this drug super slow and gradually increase the drip to tolerance rather than just cranking it up.

So...Kinchens are winning over here?! Haha. It sounds rocky, and it's definitely not all rainbows and butterflies, but we are feeling pretty darn blessed. Still on track to take the max dose of Taxol proven to keep me cancer free in the future, still able to hangout at home with my crazy crew and, as always, still working daily on the lesson in control. Loving this sent today from another one of our favorite mommy friends 'Cia'


"Much, much stress results from your wanting to make things happen before their times have come. One of the main ways I assert My sovereignty is in the timing of events. If you want to stay close to Me and do things My way, ask Me to show you the path forward moment by moment. Instead of dashing headlong toward your goal, let Me set the pace. Slow down, and enjoy the journey in My Presence.'

How cute is Cia's little angel, Pia, in her 'Win the Day' sweatshirt Grma and Gmpa sent for her (they call her Austin's girlfriend...I think they are hopeful he will one day bring home a pretty smart Mexican girl who speaks Spanish!) Haha.

WIN THE DAY (or moment!!!)
Lots of Love!
Jenn

P.S. We are soooo far behind in our thank you's lately...sorry if I haven't gotten to you for all of the love you've shown us...lifting a finger to write has been just as hard as getting my legs to walk to the bathroom...and right now being bald and peeing my pants is just not an option. I'm putting my energy toward winning that moment first, then getting some stamps to mail out thank you notes. hahaha.

No cheese!'

Austin's becoming more and more opinionated (or at least now he has A LOT more to say about things!). Yesterday morning when I put his breakfast on the table he said, 'I'm sorry mom. Blueberries plate please.' So told him that was nice way to ask and I went to the fridge and got out the blueberries. Then he said, 'Mom, other door please. Frozen blueberries. Yogurt too.' Now that's getting a little too specific for my liking!

When we try and take his picture these days he will say 'No phone!' and we also get the occasional 'No cheese!' which is hilarious. I don't think I've ever even said 'Say cheese' it's something he learned from an episode our beloved Sesame Street :)

An example of all of my 'No cheese!' pics

I miss the days when he would just lay there and stare and smile as long as I was attached to the camera staring into his googly eyes...like this little guy!! Check out our newest baby addition...not really mine, but a girl can dream :) My bestie Tricia and her sweet husband Scotty welcomed Baby Brody to their family on NYE. I'm in love with his little lips. He's just perfect.

"When someone else's happiness is your happiness, that is love.' -Lana Del Rey

 I was thinking back to when we took Austin home from the hospital and my mom finally left us at home to head back to her house. I walked her out to her car and then stood on the curb while holding Austin and watching her drive away I was hysterically crying thinking there was no way in hell I should be left alone with this thing. I looked at Austin looking back at me and I just thought to myself, one of us weren't going to make it to the next morning. I had no freaking clue what I was doing. Somehow, we all survived and now every night when I tuck the little opinionated monster into the bed I thank God for him and then thank God that I made it through the day. Those little boogers are resilient. They will pull through no matter what. Haha. Sometimes it's the moms and dads hanging on by a thread. Actually, since I've been diagnosed with cancer my night time prayers are less of thank you for making it through the day and more of just a thank you for the day. Moms and dads are pretty resilient too if they can let go of some of the extra worries that they aren't much in control of anyway...and let's be honest, once a baby enters, they call all of the shots, so why stress about what and when you're going to do xy&z. Those rotten stinkers will let you know :)

I look back and am not sure how things would have turned out if I wouldn't have been such a crazy detail-oriented mom with crazy lady ways. I am thankful for time to reflect back and for the countless lessons that mommyhood has taught me.

Be thankful for your day!
Love
Jenn

P.S. My first night on Taxol was MUCH better than any first night home from A/C treatment. Some minor aches aches, but much better sleep and nausea or 2 am meals! Let's hope we can work on my red blood cell count to get my energy back up and that I can keep the feeling in my fingers and toes :) (haha. that's one of the most common side effects of Taxol).

First Round of Taxol

Didn't mention too much about how nervous we were about my first round of Taxol. There are people who have extreme allergic reactions to this medication, so there are a lot of precautions that are taken when administering the med. They give you tons of preventative meds to reduce any allergic reactions and they drip the med super slow to assess for any reactions. Most of yall know that I have a shellfish allergy and the feeling of not being able to breathe because your tongue and airway are swelling is a scary one. Was not looking forward to taking a med that they anticipate people having this reaction. I heard a lady behind me in the infusion room having a reaction like this in her chest and airway. They are so used to handling things like this there, it was like no big deal at all! Just dripped some extra benadryl and kept moving on...with these drugs, the risks of not breathing at 100% are sometimes not as bad as not taking the med at all! Crazy.

Thank goodness I am in the clear in this department. All went well today with my infusion (but honestly, I wouldn't have known if I was good or not because one of the preventative meds they gave me was benadryl by IV, so I was KNOCKED OUT!!) haha. Mom came with me today for treatment (I opened my eyes a couple of times when they started the Taxol and I think she was trying to pretend that she wasn't staring at me checking my breathing the same way you do with a baby when you bring one home). Haha. Some things about being a mom just don't change no matter how old your baby gets :)

My oncologist was out of town, so I saw a different physician today. My blood counts have been slowly dropping for the past month or so and today my red counts were extremely low. Makes sense that I've been so fatigued...the anemia is wearing on me! Unfortunately, there's not enough liver or greens in the world that would make much of a difference for me (believe me, I've been pushing all of the iron-rich foods I can find!), it's a side effect of the drug that I don't have much control over. My counts are low enough that I am a candidate for screening for a shot that will boost my red cell productions in a similar way that the Neulasta shot I took with the A/C chemo boosted my white count productions, but of course, this is not just a question of need, there's a financial process that has to be completed. Blech. The dr. hopes that Taxol won't be as hard on my system as A/C drugs and they will come up a bit after a week. If not, will have some more tests run next week to apply me for the red blood cell boosting shot.

I'm kind of scared to find out how much this baby costs because she noted that it's significantly more than the Neulasta shot I took the last 4 rounds which had a price tag of around $11k each!! Yes! For 1 shot!! and I had 4 of them!! J and I are feeling so very lucky for our situation. We have awesome insurance and tons of grants we qualified for which have covered most of our expenses and if we had to, we could pay it. It would suck, but we could pull it off. God is good. Financial stress is one burden that has been lifted from our family.

So, with me being so exhausted from the benadryl and anemia, we have the little perfect visitor and toddler entertainer for a couple of days at the house...Aunt Boog!!

I can hear her right now in the backyard with Austin chasing him around while he screams like a crazy little monkey. They are so cute together. I was listening to her tell Austin to 'dry it up because I know you're faking it, I was a little kid once.' Haha. I love her so much.


So, I'm not feeling full of much of anything this evening. Just WORN OUT!! But I know that today was a big WIN for us because being able to continue on with the original plan of treatment of 12 rounds of Taxol is the best proven ticket to being cancer free in the future. This is kind of how I'm feeling tonight...

Love
Jenn