You feel better mom.

Austin has 2 little blankies that he sleeps with...and would carry around all day long with his thumb in his mouth if we let him :) No other blankies will do. There's something about these 2 little softy ones that he LOVES. He likes to take them out and snuggles up with them before bedtime and of course to bed with him in his crib.

You can catch a little glimpse of him with his beloveds while he is telling me that he is not ready for naptime (the more he tells me he's not, the more you know he's ready)...for those of you not fluent in my kid's language...he's telling me, 'no right there keep trying to play with blankies right there on the couch...no read stories and no go night night with blankies on my back!' haha.

Tonight, Austin brought his beloved blankies to me on the bed and told me, 'You feel better mom. Take blankies when you go to the doctor and take your medicine.' Put them on me just like I put them on his back at bedtime and said, 'All better. Night night.' So sweet.

After aboout a minute, he came running back, yelled, 'No mom, that's MINE!' and snatched them back up :) He is awesomely and perfectly 2 years old ya know!

Share something you love with someone you love today (even if it's only for a minute!)
Love
Jenn

2 down...5 to go!

Darn. Miscalculation on my number of infusions...we have 5 more left after today. Dr. Jim caught it at our appointment today.

Treatments going well...will continue on with Abraxane for 5 more infusions for a total of 12 weekly Taxol doses as originally planned. Yay that I'm getting the max dose. Boo that we thought we only had 4 more after today. Haha. Not much else to share about the appointment, but some of you of course know to expect that Dr. Jim examined me and all checked out same as last time :)

So, will be heading back next Monday for another treatment!

Love
Jenn

Suprise!

I'm pretty wiped out this week...my blood counts were low already going into treatment on Monday and the drugs are whipping my bone marrow production again! To be expected. Nothing that's going to keep us from getting outside and enjoying the awesome weather in Austin right now...our kiddo has learned that he can outrun me at the park when I say it's time to go. haha. I'll be back full speeed in a few short weeks when he least expects it.

Hair update...SURPRISE...the hair on my head is growing back, but my eyebrows and eyelashes are falling out. haha. Go figure.

Check out the fuzz that appeared on the top of the old bald eagle head!! I have a feeling it might come back all gray :)

Love
Jenn

1 down...5 to go!

First round of Abraxane is in the books...went well...I'm kind of tired, but pumped up with steroids and benadryl, so makes for an interesting combo. Will be heading back to the center next Monday for round 2!

Happy belated Valentine's day! Hope you enjoyed your weekend. Austin felt a little duped by mom this year when he realized his special treat was filled with fruit and not more chocolate. haha.

Love
Jenn

Abraxane or BUST

Headed in tomorrow morning for my first of 6 weekly abraxane infusions...will keep you posted on how awesome things go :)

Love
Jenn

Updates...

Been back and forth with Dr. Jim's nurse on my new treatment plan...still a lot up in the air because we are at a standstill waiting for insurance approval for the new drug. This is what we know now:

1. I will take 6 weekly treatments of Abraxane (hopefully, starting Monday). Typically, this drug is given in fewer bigger doses, but we are being cautious because of my history of reaction to Taxol containing drugs
2. Abraxane is not a common drug given because there are much much cheaper options available that basically deliver the same chemo drug (Taxol) and are shown to have the same results as far as prognosis and survival rate goes, so that means even more wait time once insurance approves the drug to order the drug and get it shipped to the oncology center
3. Side effects of Abraxane are similar to those expected with the drug I've been taking...neuropathy, nausea, neutropenia...the neutropenia risks are extremely high with this drug. I am going to have to go back to being extra cautious about getting out and about and having people over again for the next 6 weeks to avoid infections.
4. I will be treated with a high dose of pre-meds including Benadryl and steroids that typically are not used with Abraxane just in case my reaction is truly related to the Taxol and not the additive found in the drug I've been taking (Abraxane is basically Taxol too, just bound to a protein not castor oil derivative). It very unlikely that this is the case, but happy nonetheless to have these precautions in place.
5. My sleep is JACKED UP. The physical and emotional stress that this little bump in the road has had on me have been a challenge. It's not a setback in anyway, I'm still getting the treatment I need, just unexpected and out of my...ahem...control...haha. Not to mention it's been kind of scary. I am feeling like I've been through some crazy trauma this last week (yeah, for some reason this last week in my mind is what my stress is over...not any other part of the past insane 4 months! Like the time my doctor called me and told me I had cancer or the time I almost had my booby cut off. haha.). I have total and complete faith that I am going to be okay and come out of this being a better me, but I think it's one of those things that hits you what really happened way after it's over. In the moment, you do what you gotta do and then you look back and remember that you were strapped to a chair having a drug pumped directly into your heart that can cause you to stop breathing...then do it again...and again...and even think maybe it would be worth it to try it one more time if it meant it could get rid of the damn cancer for good. Ugh. On repeat in my mind all day week is DO NOT BE AFRAID. DO NOT BE TERRIFIED. DO NOT BE AFRAID. DO NOT BE TERRIFIED...
6. I totally forgot to let yall know that my tastebuds are recovered! This happened several weeks ago. Yay!! As far as other side effects go, I haven't had any nausea or loss of appetite. Been able to keep my weight up with lots of help from so many of you by not only feeding my family, but also helping out in so many other ways that has reduced stress and allowed me to take the best care of myself possible. I've definitely loss muscle mass not being as active as I was before treatment, but that can be recovered once I get those kettlebells back out from under the bed :) I am dealing with mild neuropathy. Mostly can't feel the tips of my toes in my right foot. This will probably get worse as Abraxane continues, but typically the nerves heal themselves when treatment is complete. Other than that, I'm doing pretty darn well.
7. We are so fortunate to have a great private insurance policy that has reduced our stress over costs of this whole thing. Not to say that I don't have some major hangups with the system in general, but we are pretty darn lucky. I sat next to a woman last week who was sitting with the pharmacist going through her list of prescribed drugs having to choose which ones she could afford to fill. It was heart wrenching. She was in tears. We have been blessed with grants from various breast cancer foundations and other agencies that have provided our family with a lot of other supports as well. I am working on a list of some of these if any of you are looking for a worthy place to stick a few of your tax return dollars :)

Jonathon's probably going to kill me for sharing this, but caught my guys singing together on the baby monitor before night time. Can't see them on the video, but the sound byte is enough for me. Melt my heart.

So...will keep you posted when I hear back on the definite treatment plan and schedule.

Be BRAVE today!!
Love
Jenn

Amazing weekend and GOODBYE Taxol

I was pretty beat through the week this week, but was determined to enjoy the amazing weekend, so I pulled myself together (even a little eyeliner and mascara on my thinning eyelashes!) and headed out to a few short and sweet celebrations I was lucky to be a part of for some of my very best friends...congrats Apes and sweet patient Shelley on checking some much needed wedding planning off the list (now if I could only get her to go ahead and find me a bridesmaid's dress, I would be set...excited though that I can skip hair do planning! haha), happy 4th anniversary of my bestie Brenda's 29th birthday, Gina looked amazing in every single dang wedding dress she put on her tiny little body, and sooo excited for Jenn's newest family addition, Baby Bre! So many things to CELEBRATE and so many people to be thankful for in our lives!! Woohoo! I was feeling kind of tired and a little achey, but nothing was going to stop me from seeing my girls. Best medicine :)

One of my very favorite things to do is to spend time outside in our awesome city with our kiddo. Outside stuff is also great because I can avoid crowds of people and extra exposure to icky germs. Saturday and Sunday were both perfect days and I took advantage of having some energy to GET OUT AND PLAY!!

We made another attempt to visit the new Austin Aquarium...a total bust. The only reason we went back was because I have a season pass from our first visit in December. Don't rec it at all to my Austinite friends. All of the animals Austin wanted to see were pulled from their displays for maintenance. They've been under scrutiny for animal abuse and are attempting to rectify some of the charges, but honestly, even with those animals back on display, still not that much to do there. We spent more time on the bench eating a snack watching other kids run around from tank to tank. That's how my kid likes to roll. I was glad because I was feeling pretty tired that morning. It was an ambitious idea in the first place. Worked out awesome for both of us :)

Austin told me 'snacks were better than the bird cage.' He's pretty much right on the money :) I had thoughts of catching some weird strain of bird flu, so I was glad he didn't want to go in there. haha.

We also spent hours at the park Sunday morning getting into sticks and mud and chasing squirrels. So fun. The weather was beautiful. One of those amazing kind of days that we are lucky to have here in Austin right in the dead of winter. Found myself just smiling watching my kid play rough and tumbly around in the mud and running around like a wild looney toon. Sooo thankful for the day (and how cute is Austin's hat?! He calls it his horsey hat. haha).

Couldn't wait for Austin to get up from nap so we could hit up a patio and another playground for dinner Sunday night...topped off with an extra special trip to Lick ice cream shop. Austin's favorite is dark chocolate with olive oil and sea salt. Yummm. He wouldn't take his spoon out to 'cheese' for any pics. haha.

Sooo...now on to the Taxol update from today...

I've shared quite a bit about the inner control freak that I'm constantly working to chill the heck out, but when I'm anxious, I get kicked into overdrive. There's not much about this cancer business that I am in control of and I've been working on trusting God, my body and my doctor, but one thing I can do is pack a damn good snack bag for the infusion room. I made Chanel carry this huge cooler around all morning to my appointments. haha. Just give me a little bit of a break on this one...8 hours of food and drink necessary...for 2 people!! Not too shabby in my opinion. It really brings me back to my bag packing for the hospital when I was pregnant with Austin. I think J begged my doctor to induce me for fear that he would have to haul more luggage to the hospital when it was 'go time!' if I had any more time to sit and think of more things I might need just in case...

Top is chemo bags, bottom is baby bags. I know...out of control!

 Went in for my 6th infusion today. Had an appointment with Dr. Jim:
1. My reaction to the the first and second attempt of Taxol treatment #5 were expected and the 2nd attempt was promising in his eyes that I would be totally fine and reaction free for #6 treatment today. He assured me that we would follow the same plan from last week we did for my successful infusion. Extra meds, go super slow and stop it immediately with any changes I notice.
2. If I did have an unexpected reaction, although scary for me, was not untreatable. I responded well to stopping the drip, adding preventative medication and time quickly resolved the symptoms.
4. There is a plan in place for a different drug if something were to happen. Either way, I will receive the same dosage of the same drug, just in a different package!
5. Always one to focus on the really important things, while Dr. Jim was examining my heart, breast and armpits which are always my most anxious parts of appointments (like armpit dripping sweat nervous), he asked me if my eyebrows were thinner than last time he saw me. Why yes they are Dr. Jim, thanks for noticing. So attentive that Dr. Jim. He didn't comment on my dry skin though because I lubed my face up extra greasy for my visit with him. Was hoping to get a gold star in the moisturizing department or another 'congratulations, your tumor is gone,' but apparently, hairloss was the pop quiz for the day. Dangit.

So, counts were good. My white blood counts are low, but not too low for treatment. Just need to be careful to avoid sick people and large crowds. Dr. Jim sent me off for Taxol infusion #6.

Started my #6 infusion with some lovely Benedryl, pepcid and steroids. Went on to a very slow drip of Taxol. Not too far into it, you guessed it, chest tightening and heart palpitations. I tried to give myself a little wait time before getting Chanel to get the nurse to make sure it wasn't just anxiety. Nope, it was the real deal. Same reaction that I had last time. The nurse came over, shut off my drip, took vitals and monitored me for a while. It was scary, but not as scary as last time because I knew what the feeling was and I knew that there was a plan that worked to alleviate the discomfort. Symptoms stopped pretty quickly, but my pulse took a while to come down! haha. I sit normally at a cool as a cucumber rate of 90 beats per minute (which is on the highest end of normal), so when my pulse goes up, people really freak out. Got pretty high. And seeing people freak out about it and talking about my reaction wasn't  helping me to be successful use my meditative chill out breathing strategies. Some of it wasn't controllable, it was a reaction to the drug. Some was stress. Probably a lot of stress. haha. Either way, I'm ok now...might be at a 99...the very highest of the normal range :)

As soon as I was stable, my awesome chemo nurse marched over to Dr. Jim's office and told him
'Abraxane or BUST Buddy.'
She wasn't going for a ride on the Taxol train with me again and encouraged me to stay off those tracks for good too. Gave it my best shot. It's not for me. She moved the unused leftover bag of Taxol as far away from me as possible and told me not even to look at it again :)

So, no more of this old school Taxol for me. Dr. Jim has submitted all the necessary paperwork to my insurance to get me a new drug Abraxane. We should now have all of the info they need to prove that this is the best treatment option for me. This drug is basically the same drug I've been taking, but for people who have allergic reactions to Taxol, is preferred because it doesn't have the same binding agent (castor oil...which is super cheap!) that causes the reactions. There are also lots of other pluses for the new drug, but I won't go into details. No need to overthink it, it's our next step in this journey. We will wait for insurances response. The cost difference is huge. I'm going from a $500 drug to upwards of $5000 per dose...maybe more! So, provoking me to almost stop breathing twice is what the physical costs were to get to the good stuff. So frustrating. But that part's done...moving on...
No idea what the time line will be on that or when I will have my first treatment. Will keep you posted...

So now here I am again, pumped up on steroids and knocked down with Benedryl...in combo with chemo hot flashes...my body is so confused...I'm a big mess! Headed to try and relax in bed and hit the hay early tonight.

Thankful for each of your thoughts and prayers.
Love
Jenn

5 down 7 to go...take 2!

It was a looong day. But it was mostly an uneventful day. That's a good thing.

I'll keep it short and sweet. Because one thing today was NOT was short. Started my infusion at 8:30 am and did not finish until 4:50 pm. Longest infusion ever. This med typically takes 2-3 hours. Good thing, I went through the day with no reactions other than the tingling in my legs and feet that I've experienced before. Yay! Bad thing is, I'm pretty sure the plan now is going to be an 8 hour infusion day every time over the next 7 weeks. I'm willing to take it over a day like we had yesterday, so I'm considering it a win (not the capitalized kind of WIN, but a win nonetheless). Will get a chance to talk to Dr. Jim tomorrow and discuss the plan moving forward.

So, long day. Totally exhausted. Bout to hit the hay. This triple dose of steroids is going to have me up in a couple of hours stuffing my face.

Love
Jenn

5 down 7 to go...take 1!

We were hoping I wouldn't have anything to share with you about round 5 BUT apparently, I'm not the one calling the shots here!




Went in  for round 5 yesterday afternoon , started off pretty normal. They gave me my Benadryl and steroid first. Started dozing a bit and very shortly after I started the beloved unpredictable taxol, my chest started tightening and major heart palpitations came on...they immediately shut off my drip, took my vitals and the symptoms stopped pretty quickly. Got another big dose of Benadryl and steroids as a night cap just in case I was still reacting when my first dose wore off in middle of night. Dr. Uyeki came to check on me in the infusion room and we chatted about what happened and what are options were for next the next step.

1. For most people, taxol is the easy part of chemo...some annoying tingling/loss of sensation in hands and feet, joint, rashes, bone pain and lastly, challenges with keeping blood counts up (I've had a little of all of these!) There is also a percentage of people who have more severe rxns to this class of drugs. Some have a rxn initially and they gain tolerance to the meds as they go along with more infusions and they cruise thru. Some people have more severe rxns as infusions increase. It's one of those things that's different individual to individual. It's seeming that I may be one of hose people in lucky category #3! During infusions I've had some treatments w no pblms and some with more significant pblms. My very scientific dr. Jim reiterated that none of this is random, it's all expected and we know the cause :) Heehee. I'm pretty sure random is considered a bad word at his house.
2. For people with my rxn, most symptoms are alleviated and they can continue on with treatment by bumping up the steroid dose the day before treatment and both steroid and Benadryl on the day of treatment. That's what we decided to try today.
3. For some people, even these pre-treatments aren't enough and for whatever reason, they still have the same severe reactions. This might be me. We will find out today.  If this is the case, we will know by my response to the drug on a very very very slow rate of infusion rate.  If this happens, I cannot be treated with this drug anymore. Good news....there's actually another form of taxol. Won't go into too many details  on this drug, but basically it's the same drug, taxol, but treated in a super fancy way that the body metabolizes  differently and does not cause the same rxns. People who take this drug don't even need the premeds they give people who take taxol! So why not just throw in the towel on this old school taxol business that causes all this drama and switch to the Cadillac version that doesn't?! Yeah, that was my question... And you guessed the answer...money, money, money! The fancy drug comes with a very high price tag  and is shown to have the same outcomes for patients as far as prognosis goes when compared to the original form. Tacking on some $2 Benadryl to the bill to avoid  the awful symptoms of the cheap  original taxol drug is  what insurance companies are willing to pay for their lovely chemo patient clientele :)

So yesterday was NO FUN. No fun for me, but less fun for my mom. Actually today when we do it all over again might be worse for both of us, but still worse for my mom! Haha. The nurses and I joked that she keeps pretending to be reading her kindle, but really she's sitting right in the sweet spot where she can peek over it and stare at me and no one can tell. Mom's really do have the hardest job.

Let's focus on some WINS here...

Either way, I'm getting my drugs. Whether it's the cheap one that we power through and just deal with or the fancy expensive one that I'm sure will have it's own lovely things to deal with too. I will finish a very effective treatment that's going to kick my cancer's butt and have the best chance to keep me cancer free in the future!

I have many circumstances in my life that are on our side. There are many. These are at the top of my head now... I don't have a typical job out of the home to add to my plate, we've got the most amazing friends and family who really are our lifeline, Austin's preschool 2 mngs/wk has been the greatest blessing..love his teachers and know that they take the best care of him, financial issues are not  a worry for me, my kid is awesome in lots of ways, but one way I'm super grateful for is that he takes long afternoon naps that I partake in from time to time and he sleeps through the night in his own bed, I don't care about being bald (although, I don't want to talk about my thinning eyebrows and eyelashes!!), I know in my heart with all the faith that can possibly be mustered, that I'm going to be okay and more importantly, so is my kid, and so is my husband (in fact, Jonathon has been forced to pick up a few useful skills that make it less likely I'll smother him with a pillow in the middle of the night! Dishes, laundry, basic clean up around the house...haha. He might survive cancer too :)

Will keep you posted on round 5 take 2!!

Love
Jenn

Besties

 

So, I'm pretty sure besties is not the manly term for 2 guys that have the best time together, but these two did. Wish I caught some pics of them crawling around in their dinosaur gear. So much fun! Austin's favorite thing to say was, 'Uncle Mike, have a question for you...' haha. We really are blessed with some of the best friends ever.

Oh no, it's a goat!

Someone mentioned to me this week how much they wish they could send their kids off somewhere on the weekends and take a break (referring to Austin visiting my mom a couple of weeks ago). I know that this person knows that I'm hardly getting a break while I'm recovering from chemotherapy treatments and barely able to walk to the bathroom at times, let alone chase after a toddler, but nonetheless, it made me tear up a bit. Poor lady probably has never felt so awful making the cancer patient cry!! What she was saying was totally true for all moms and dads. Sometimes you just need a break! She has no clue that at this moment, I would love nothing else than to never have to send my kid off somewhere for the weekend again. And I know one day I'll regret saying this when I'm feeling better and ready for a break from my kid. haha.

So, of course I'm thankful that I can send him somewhere that he loves to be and that Jonathon and I feel 100% safe sending him to, but I hate every minute of it. First, it makes me feel like I'm sick (I know I'm kind of sick...I do have cancer and the drugs I'm taking are pretty much intended to kill my body just enough to kick the cancer and still keep me breathing...but keeping things as normal as possible really makes me feel better) and second, I don't want to miss a thing. Yes, I know, I'm a control freak, but I'm angry and can't help but think how unfair this all is for me and my family. I just want to have whatever kind of crazytown 'normal' is supposed to be for us and I'm not willing to accept that this is it for my Kinchen crew!

Before I had my first appointment with my oncologist, I had a discussion with my crew of 'experts' (bestie, Jonathon, mom and Chanel) and I made it clear that my biggest concerns were how bad all of this really might be (I didn't have all of my tumor biopsy results yet) and more importantly, how all of this was going to affect our kid. I let them know that I take my job as a mom very seriously (don't know many who don't!) and everyday, since the day Austin was born, my goal has been to make sure that he has the best day ever. I knew I was going to need help through all of this and I was thankful that each of them were there for us, but I made them promise that they wouldn't hate my guts when I became the biggest pain in their butts and seemed as if I wasn't grateful when I reamed them for something they did or didn't or might've thought about doing with my kid because that couldn't be farther from the truth. Of course, I'm grateful for each and every one of them and I trust them with my (and my kid's) life! The things I knew I was going to say to them are things only a bestie/daughter/sister can say to a bestie/mom/sister and they will still have to love you no matter what. haha. What I know now about my 2 biggest fears is:
1. I'm going to be okay
2. Austin hasn't skipped a beat :)

My crew has has been so kind to take the bags of things I send to their houses that they'll never use, lists of directions and schedules, and texts and calls to tell them that they are doing it all wrong. I've had crying fits and meltdowns. They do their very very best to follow my impossible rules, but no matter what, I just can't accept it. Yup, I'm pretty much the pain in their asses I promised to be. Good thing my kid's cute and they love him (oh yeah, and they love me too). I wish I could be more gracious, but honestly, I just can't be because I'm supposed to be the one doing what they are doing. It's my job. It's just not fair. Did I mention that I really do hate every minute of being away from my kid? It's been the hardest part of all of this for me.

BUT

today it's time to celebrate a big giant WIN for the Kinchens. These past 2 weeks Jonathon and I have been handling our business without too much extra help around the house. Honestly, I wouldn't let my mom or sister come near us for the past 2 weeks with a 10' pole. My mom has been taking me to and from treatments and when she brings me home, I pretty much kick her to the curb. Haha. I just am feeling ok enough to do it by myself (I know I sound like a 2 year old. Austin must be rubbing off on me!). Thank God. These past 2 weeks haven't been perfect. I've definitely needed help, but I've felt better than I have in a loong time and I've been enjoying every minute I can with just me and my guys.

Now, I also know that these visits from my mom and sister are not only about helping me. I can't imagine what it must feel like to have your daughter/sister going through breast cancer treatment and recovery. I know that them getting their eyes on me from time to time makes them feel better too. I really am as normal as I ever was (most of the time! and minus the ponytail. haha), so as long as I'm not super anemic and pale or have what Jonathon refers to as the 'chemo flushed look' right after treatments (isn't he sweet?), I think seeing me makes people feel better about what I'm going through. Hopefully they think I am doing okay and can do this :) Oh gosh, I hope this is true. I'm kind of oblivious to the way I look these days and only remember that I look like a cancer patient when I'm at a store and I catch someone giving me the 'I'm so sorry' look, or asking me why I don't have any hair or how I can have cancer when I'm so young...the list goes on...one day I'll make a post on the inappropriate questions and comments I've gotten since my diagnosis. Pretty entertaining.

This weekend was AMAZING for me. We had awesome weather and I was able to take Austin to the zoo ALL BY MYSELF. heehee. Sounds like a normal thing, but trust me, this is not something I've been able to pull off since October. It's huge. It was so fun. I was/am really tired from the excursion, but it was totally worth it.

Our train ride entertainment...if any of you have taken the Austin zoo train, you know what I mean when I say it's pretty darn boring. Haha. We recommend bringing a snack to kill some time!

Round 5 of Taxol scheduled for tomorrow. Hopefully nothing eventful to share with you about the day. Getting anxious about reaching the halfway point of this part of chemo. There's not much to do for the next couple of months except take the best care of ourselves we can as we get closer to a point when we will get more info about what our next move will be...

So, just a reminder for yall...I'm going to be okay, my family is going to be okay and we are WINNING THE DAY over here (minus the run in with the fierce Nigerian dwarf goat)!!

Love
Jenn