Wednesday, July 31, 2013

Haven't Forgotten

Haven't forgotten you guys! Taking a few days off from blogging and traveling to a wedding. Keep it cool and we shall chat soon... Have a few things brewin. Thanks for the support and being a part of my journey. 

Tuesday, July 30, 2013

The Next Step

Hey, all!!! No cancer! I wanted to drop in and write a quickie, just to say how grateful I am to each and every one of you who has been a part of our journey. Thank you for your support, prayers, thoughts, juju, cupcakes, cookies, hats, cards, letters, and most of all, love. I'm not big on praying but I know a lot of you are and have done so for my family and I. I know that has made a difference cause many of you are in good with the big guy and he clearly took a shine to me. Hugs!

Thank you especially to my family; Jim and Jack and Sandy and Mike, my brother and Dad. Tammy and Alexis, my sisters no matter where we are or who's blood is pumping through our veins. My aunts and uncles, checking in, especially Denelle and Annie. My sister in law, Christa, helping from afar with FaceTime, recipes and love. My sorority sisters, especially my big Hawk, and her sister and mommy for adopting me. Everyone who has rallied around me, and it means the world to us.

I type this from bed with tears in my eyes (again?!?!) because I am simply overwhelmed. I cannot wait for the next leg of my journey. I hope you are all along for the ride to see what happens next. 

There are no words right now, so I will say, simply this: thank you, and......

FUCK CANCER!!!!!!!!!!!!!!!

Ahem. Addendum to blog. In order to celebrate we had a little pancake party! 

First I made them for Jim. 

Then he made some for me! 

Jack supervised. 

Monday, July 29, 2013

Chemo Grumble Grumble

I am so scratchy today. I borrowed that term from my cousin, Tammy. It's British, apparently. It means cranky. I am at chemo right now, and they say I'm neutropenic. I'm ticked off because I need neupogen. The side effects suck. So at first I was like:

Then, I was like: 

But they said, girlfriend, you needs the neupogen. So I was like:

But, I still don't have a choice. Dr. Sehbai sent me a proxy hug from my nurse, I call her Syracuse, shes cool. So I gotta forgive the doc. He's trying to help me, you know, not get infections or something from my low white cells. 

So I was like. Ok. I'll take neupogen. 

Fine. Give it to me. Bring on the neups. 

My ALT is back down, so that's good news. Bring on the Tylenol! 

They sent my blood work already, and we are still hoping for the zero, but as long as I've fallen below five I'm in remission. So, 'cured.' I can't even imagine that. I have no words. 

Will update here when I get my number! 

So, this just happened: 

I just kicked cancers ass. So there! 

Sunday, July 28, 2013

Six to Zero

It's like zero to sixty in....
I'm hoping for the big zero tomorrow and wanted to share with you guys. Jack is hoping for it too, but he's busy teething so, we are both cranky tonight. 

Oh boy. 

Saturday, July 27, 2013

5K or NO WAY?

So, I visited the boardwalk the other day. I was watching all the joggers, and I'm sloughing along, just walking, enjoying the ocean. But the whole time I am thinking, OMG, I can never run. I will never be able to run again. I am so exhausted right now .... 

The next day, I felt so much better and had much more energy. I was thinking I could maybe make it to the gym sometime this century, once I am cleared to officially work out work out. As in jog and really sweat, etc. In fact, my back has been hurting and I think I need to do some yoga or light stretching because it is probably from being soooo lazy.

So, I am going to need my blog readers to go ahead and give me some motivation here! Maybe I should have thought about wanting to bitch out before I told my readers (and I keep track here, over 30,000 views can't lie....) I was going to run a 5k?

A lunch run? I hope so!

Call me out, people!

It's Sunday today. We have plans to have lunch with an AST sister of mine I actually met a long time ago at a sorority convention. Her name is Kat, too, and she's awesome. She has a lovely fiancé and an adorable little boy. I love mom friends! After lunch, I'm not sure what's on tap. Prob just chillin more with this guy, duh:

That's Jack with his new Sophie! 

I always feel a bit anxious on Sundays. I was saying to Jim yesterday, "tomorrow, chemo is tomorrow, I hate tomorrow." Then, I felt guilty. Who am I to hate, or forsake, or take for granted, even for a moment, any day of my life?! I am so lucky just to be on this earth ..... 

Oh, well. It does sum up how I feel. And it is what it is. Tomorrow is an EMA day. That means infusing methotrexate for 12 hours at home and very limited contact with baby boy. Y'all know how much I hate that. I'm so resentful of methotrexate now that I have been told its the only one excreted in urine and it could hurt my family. It causes mouth sores as well. And I'm angry, too. But what's the point of being mad, especially at a drug that's saving my life. ): 

Until then, I'm going to distract myself and have an amazing day! I hope all of my readers do the same. 

Thursday, July 25, 2013

Another Mail Call!

I had to add another gift/mail blog. I received more packages the last few days, and I have been seriously slacking on showing off the love. I know I have mentioned it before, but part of my problem is that my iPhone camera is perpetually full. I cannot, and I mean seriously cannot figure out how to get those pictures off of my phone! And I'm not 100% sure if the photos are in my iPhoto, and I love the photos. Ahhhhhhhhh. Can someone please come over to my house and troubleshoot this? Or send me a 64 GB iPhone? Hello? Steve Jobs had cancer...... maybe Apple will take pity on my poor ass and send me a bigger iPhone?

Anywhoo, I digress..... 

TIM HORTONS!!!! This comes from my high school BFF, Kristen. Xo baby. 

For those of you who don't know, Buffalonians (and Canadians,) love their Tim's. I just wish I were drinking with her!

Here is a package from my friend Kimmie. She is one of my Alpha Sigma Tau sisters. These ladies have been great at showin' the love. Check it out: 

Plus a hat for Jack which I am obsessing over

Say it with me: "awwwwwww!!!"
Thanks for the loving, Kim. Xoxo. 

Speaking of AST, I actuslly got a second package with this shirt in it. 

At first it was a mystery who sent it, because the name was missing on the card! But then I learned it came from another lovely AST lady, my sisTAU, Rachel. Thanks Rachel for the lovings!!! I adore the shirt. 

I got an amazing package from our cousin, Sal. It had a lot of amazing stuff in it not pictured, but we were most excited of course about the hat for Jack. It also had a gift card to Starbucks, iTunes, a coffee mug, picture frame, shirt for Jack, two DVDS, and ELVIS CD (*see pic, ha ha ha, it is a running joke with this kid because I like to listen to Schwayze,) TUMS (which amazed me that he somehow knew how obsessed I am with them....) My memory is doing a number on me here, so I hope I remembered everything here. If not, sorry, Sal. Love you anyways. Here's some pics of the love here:

Can this baby rock a hat or what? 

Here I am opening the gifts. Jack decided to fall asleep on my during.

I had a really good time, thanks Sal!

I also got a package chock fulla love from Olivia and Jamie. I took a lot more pics, because my phone actually died in the process. In this case, I am going to let the photos do the talking. They just picked the most amazing assortment of things, food, a pom pom, bracelets, a pendant.... all sorts of amazing things with letters on them detailing why they were chosen. Even a little doll to take to chemo to create a chemo warrior. Here goes:

Video of Sandy's Bday

I tried to add this to the blog about Sandy's birthday, but I can*t take the tech today. So, enjoy!


Here we are yesterday at Children's Hospital of Philadelphia, with Jack for his ultrasound...... 
Little Jackleberry was so good during the test, didn't cry or fuss at all. God, I love this little boy.....
After the test. This is before we saw the oncologist, and just moments before the tech came in the room and said "we got everything we need... The radiologist said to tell you everything looks good." Tears came to my eyes as I realized that this nightmare is finally starting to end.... Jack is ok! 

We had to wait to see the oncologist, and it was only 9:30 when our ultrasound was done, so we had a diaper change and headed to the cafeteria. On a side note, CHOP has one of the most amazing, clean, delicious cafeterias I've ever been to. It was bistro like but still had hospital food prices. Pretty sweet. Jack had a bottle after, and we sat in the waiting room where they had this really cool, interactive sculpture. Jack is a bit small to press buttons and turn knobs, but he had a fun time watching the sculpture twitter and twitch. I don't have a picture because my iPhone camera is full.

We finally saw the oncologist at 11. I was relieved to have the results from radiology but still anxious. What if there was something radiology missed? What if it was just a fluke and he's not ok the radiologist just read too fast? We saw the fellow first, and then the attending. They gave us the great news that, not only is Jack cancer free; the cancer he could have had, the same as mine, is so fast growing we would have known by now. So, no more tests, no more poking and prodding. And as far as the liver, its not even elevated enough to be a concern. 

Plus, the attending told me that he is familiar with all of my chemo agents, and to the best of his knowledge, they are all eliminated by my liver and other systems. The methotrexate is the only drug excreted in high amounts, and that's into my urine. What this means is I can go back to snuggling my baby, even after chemo. I can co-parent with my husband, instead of lying helplessly in bed at 3 am when Jack needs a change, a bottle, and a hug. I can be that hug. Sweet relief. I took that baby from Jim's arms when that doctor told me and just held him so tight. I'm surprised I let go long enough to blog. 

When we got to the car, I burst into tears. It was like the floodgates of the last week finally just opened up. I cried for Jack, and I cried for my husband and I. I cried for my father and father in law and mother in law, who have all been with us, watching, waiting, fearful for a week. I cried for all of you, waiting to hear about my precious baby. 

I had felt so strangely ever since I heard the liver results. It's like I was upset but not. I was worried why I was feeling so numb, unable to cry or react. I had an initial reaction of short lived anger and that was it. Call it mommy instinct, but I just knew my little baby was ok. But these tears surprised me. I think it was just relief. 

More than anything, and without warning, I began to cry for all the babies I saw in that waiting room with no hair, and not because it just hasn't grown yet. I'm crying for them now, if you must know.  To see those little tinies, hooked up to infusion and sitting in the waiting room just like I do .... Was gut wrenching. I've been on that situation and I wouldn't wish it on anyone, but I just can't imagine  it happening to a child. Or a parent of that child. It just.... Slayed me. Jim just held my hand. He reminded me that they are being treated at the best hospital in the world for this.

But that's not enough to know that. 

Let's take a moment to meditate, or pray, or send good juju. To honor our emotions and fully allow ourselves to feel whatever it is this horrible disease makes us (you!) feel. Let us collectively take a deep breath and spit it out: FUCK YOU CANCER and the horse you rode in on. There's no more room for you in my life, or Nitya's mom's. There's  no more room for those little babies to have it anymore. So go away

Tonight I'm praying, and I don't pray, ok? Tonight I'm just grateful cancer missed my son. But that will never ever be enough. Here's to a cure. For everyone touched by this illness I pray for a cure. You should, too. 

Tuesday, July 23, 2013

State Fair

Yesterday, we went to the state fair!
Goats! Baby goat was sooo cute. 
Yep, that's my deep fried twinkie. I had to try one and it was everything I thought it would be and more. I will never have one again, but damn. 
Jim was going to do the donut burger, but chickened out and got, yep, you guessed it, chicken and cheese fries. 

He won me a unicorn (hellooooo, we love all things Chemosabi-unicorn related!) at the dart game. I don't think he technically won it because I told the guy the story and he only popped one balloon...... But still, yay Jim!!! 

We hung out with our friends, the Jester family. I don't really have any good pics (Trista is a great photog,) but their daughters are adorable and were showing their sheep. They both placed, and won 2nd and 4th prizes plus extras. They are a great family and we love hanging with them. 
I cut out Maya in this pic. I'm sorry, sweetie! 


Anyways, a great time was had by all. We left Jack with his grandparents, and he had a great day, too. He's teething, so we have had some rough nights. 

Today, we are headed to Philly for follow up about his elevated ALT. At CHOP (Children's Hospital of Philly,) they decided to do an ultrasound instead of CT. This is great news for a lot of reasons- no sedation for one. It's also less radiation and there is no IV required. It's good news and after the test we have an appt, so hopefully we will have good news. I will update with a blog tomorrow or this evening. We are also picking up our cousin Anthony from the airport and probably eating our feelings with a cheesesteak. 

Fingers crossed, fans of Jack ! 

Monday, July 22, 2013

Zero is the Hero

So there's my blood!! Today might be the day I find out I'm at zero. I just got to chemo and in true Chemosabi fashion, will be live blogging it. 
Here's Jim saying "zero!!!" 

Technically, he could say 5. Five and less is considered undetectable and means my cancer is officially in remission, or gone. That will lead to two additional rounds of chemo. The other good thing is, on that timeline, if we are at zero today I can return to work and won't need to go on long term disability. Keeping my job and benefits would be a definite plus. 

This morning I cleaned out my pantry and found a ton of candy I brought for the nurses and other patients. But I saved this for myself and its making me happy:
Yeahhhhhh buddy! I also found the mother load of Cadbury Eggs and candy canes. STALE CANDY CANES ommmmmgahhhh! (I kept those. Sorry, nurses.)

Now, I'm waiting for them to take me to see Dr. Sehbai. It's been a month since I've seen him, so you know I'm stoked! I will continue to update and blog throughout the afternoon, and post to the book and Twits when I get my number! 

Using my Pom Pom Olivia and Jamie sent me to chant: "zero zero zero!!!"

Done with Dr. Sehbai now. My ALT is elevated (the same as what's elevated in my son, and is a liver enzyme,) which is a result of chemo. They are going to keep an eye on it for now and not make changes to my chemo regimen today. Dr. Sehbai is going to talk with Dr. Cowabunga about this, and come up with a plan of attack if the trend continues. Blood work-wise, the good news is that my ANC or all over neutrophil count is still good (around 2,800,) which means no neupogen. Neupogen is a white cell (neutrophil,) booster. It has terrible side effects, mainly bone pain, which was debilitating the first time I had the injections. We are talking the kind of pain that just makes you lose your mind. First I tried getting in the tub, that didn't work ... I got out and was just walking around the house, trying to get comfortable, sitting, standing, lying.... Crying and telling Jim I couldn't do chemo anymore, ever again, begging him not to "make me go back." At that point, I thought it was chemo side effects. Finally, Jim gave me five full milligrams of Valium, plus a dilaudid (painkiller, hydromorphone.) About an hour later, I was ok and resting. But, yeah. I'm good with not taking that stuff! The good news is, oddly, if you take Claritin, it helps. So if I know in advance I can do that. 

I'm still at chemo, its about 4:30. No labs yet. My stomach is churning!!! I've already had my vincristine, and am about to have my second infusion, cyclophosphamide. That's a 30 minute infusion so I should be good to go soon. 

5:30 PM: 
No labs at chemo!!! They are going to call me when they get them, though. Ugh!!! Hate waiting! 

In other news, I'm feeling pretty badly after this round. My stomach feels like I rode all the roller coasters, after funnel cakes and a slurpee plus popcorn. I'm also having some pain in my back and tummy. My nasal passages are burning and hurting and my nose won't stop running so I have a wicked sinus headache brewing. Can't wait to get home and crawl in bed .... In the car with Jim now. Mike and Sandy (my in laws,) are driving Jack back to our place which is really nice. We wouldn't be able to get through this without them, so, big ups Mike and Sandy! Love you! 

So the jury is in ..... Drumroll......

My number is 6. I'm not even going to get started on how I'm feeling but I spoke with Dr. Sehbai, and he said he thinks two more rounds is going to be good, so I can go back to work, which is a huge plus. Unfortunately, with my liver enzymes being elevated, my regimen might get changed, so cross your fingers and toes it gets better so I can go on course to get back on that day.

Thanks to everyone who has been watching and waiting to hear my number..... Love to you all. 

Saturday, July 20, 2013

Sweet Baby Boy

So, we have been thrown for a loop again. It seems just like when things start to be normal, we get our butts kicked again. We had Jack have some bloodwork, a follow up hcg, and full panel, liver function, etc. His ALT came back elevated at 70. The pediatrician did not call, but when I did two days after the blood test, she got on the phone fast. They said it could have been exposure to chemo, so for 24 hours I completely stopped touching him (even though I already had been since Monday.) The whole time I am just feeling so numb, can't cry, can't get angry.....

We came in the following day for an appointment to discuss our options and see what it meant.... it turns out it was elevated to ninety when it was drawn from the oncologist (the time when we had to wait two days for results.....) NO ONE TOLD US THIS. Apparently the oncology guy was not concerned with it, because when he called me he said "everything is perfect." Perfect. You can imagine my surprise when I found this out.

Jim and I asked the pediatrician why she had never mentioned to us that he was at 90 8 weeks ago, and her reply was, they never sent me the labs. The office had insisted that we have the labs drawn elsewhere, then did not even bother to follow up. All I have to say about that is that its completely negligent and ridiculous. We wound up storming out after Jim told the Doc he was going to "a real city with real doctors who went to medical school." It would have been comical if it weren't so sad.... In addition to this, our ped contacted the oncologist and spoke with someone I have never even met, whom Jack has never seen, who told them that they instructed us to follow up with CT. I was called personally by the medical director of the entire clinic, Dr. Kolb, and told that everything was fine, his labs were perfect, and all we needed was a follow up beta hcg test in one month. This other doctor is just lying about stuff...... Probably to cover their asses now. Throughout this entire process, not one person has apologized to my family.

So the next step is a sedated CT scan. Jack will have to fast for SIX HOURS (which is going to be torture for everyone involved....) he can have some pedialyte, but thats it. They said that I can be with him throughout the whole process. We are looking into weather we can do this at Children's Hospital of Philadelphia, or if we should just have the exam at DuPont and have it read later by CHOP. Please start up the juju or prayer chain. My little baby is just so innocent and sweet and did nothing to deserve this.....

I did talk to Dr. Sehbai, who told me he doesn't think it was my chemo which has caused it, and that often times, kids have irritated livers.. The condition could be something, but it could be nothing. And the drs didn't even order these liver tests, we were the ones insisting on them all along. So who knows how many babies may have this and appear healthy and it is just never found out? For now, just waiting.....

Tuesday, July 16, 2013

Amaze Balls Day

Had a pretty amaze balls day today. Sandy took me in her birthday present, a convertible...... (I know! some gift!) We went all around using coupons that she got for her birthday. We started at ihop, where she got a full breakfast FREE, and I shared her pancakes.... Which were blueberry. And delicious. 

They sang happy birthday and brought Sandy ice cream!

Then, we went to the Rehoboth Farmer's Market and walked that off a bit. We went to Buffalo Wild Wings for $5.99 lunch and got free cake and ice cream! 

She was stoked. 

Then, we got a free entree at Moe's, so we got a beef and cheese burrito for Mike. All we had to buy was a drink and you know I went with .....

We went to Friendly's and with the purchase of a burger, which we got for Jim; a free Sundae. We were about sundaed out so that went to Mike, too. Chocolate chip ice cream with strawberry. 

Then, I went to chemo with Jim. He had his burger and I was a real bad ass. I didn't take phenergan or Ativan and I did alright. It's almost ten and I'm still feeling ok so that's a good sign I think. Tonight, I'm going to bake a birthday cake for miss Sandra, then call it am early night. I will decorate tomorrow!

I want to take a second to share a donation page for a friend of mine, Crystal. She is having a hard time financing her medications. A lot of people ask if they can help us, but despite everything, for now, we are definitely getting by. This family has four kids and needs your help. She has the same cancer as me and her baby is a few weeks older than Jack. Here's the link:

Every little bit helps. 

Have a great night everybody! 

Monday, July 15, 2013

The Road to Zero

I just came out of the bathroom at the cancer center, and I'm standing in front of my husband, IV pole in one hand, IV line in the other. "It's 11," he keeps saying, but I don't get it. Finally, he clarifies and it clicks. My hcg. It's eleven. Then, I feel like someone kicked me in the gut. I should be happy, but all the air was just sucked out of my lungs. I feel bereft. I feel like I did the day they told me I had cancer. 

After the news has sunken in a bit, I'm still trying to grasp for comprehension. It should have been zero! My numbers were coming down so rapidly, even the nurses look disappointed. Single digits didn't even seem like a challenge. To be fair, I did have a visit with the nurse practitioner today; and she warned me I might not see zero. But I think even she would be disappointed by this. I had come so far. 

I just want it to be over, or see the light at the end, something. I just calculated the dates and if I hit zero next week, my last chemo will be six days before I need to return to work or I will lose my job. It is really good that I can still be gainfully employed, but I was hoping to take a celebratory vacation or something. Ohhhhh, #CancerGirlProblems. 
Here I am after leaving chemo today. It migjt not be zero, but I've got this! The thing you see taped to my chest is the needle in my port. You can't tell in the pic, but my infusion bag is hanging from my shoulder. For those of you who don't recall, I'll go ahead and infuse that methotrexate all night long. 12 hours to be exact. So I'll be blogging live around 5am. Check back for updates! 

For now, I'm grappling with the fact that I can even feel loss in this moment. It's not loss as much as it is anger. I'm fucking pissed off! 

Guess for now, all I can do is keep inching forwards. We are going out for Mexican foods. Nothing a margarita can't fix! 

Friday, July 12, 2013

Haven't Forgotten You

I have a good post a-brewin for y'all, but it's taking some time. It should be up sometime after my third cup of coffee today. If thats too long to wait, you gotta negotiate with the man in charge.... Jack, of course!!
In the meantime, here's a little snack to tide you over, a visual of my morning. Little guy slept 10-6!!!
Everything I love in this world is in this bed, right here, right now. Xoxo to my boys. 

Thursday, July 11, 2013

My Stomach

Let's just take a moment for narcisissm. Let's just, yeah. How often do you think about your stomach? For me, it never used to be that often. Eve Ensler wrote a whole book based on her stomach, and I didn't even bother to read it. And she's practically my idol! 

Sidebar: Did you know that I read her most recent book, chronicling her diagnosis and treatment of uterine cancer, during the time I was being diagnosed? Crazy. 

Anyways. Back to my stomach. I can't stop thinking about it. Obsessing over it. Every time I use the bathroom I stand up after and catch a glimpse in the mirror and the spiral starts all over again. It would help if strangers would stop asking me when I'm due. Literally. That is still happening to me. Even when I'm walking around with Jack. Who, to be fair, is a very small infant. So, it's crazy to me that people can be so oblivious. We are talking all kinds. Even a waiter at IHOP. I actually think my mother in law, Sandy, wanted to murder the guy. I have seriously never seen a look of death as good as the one she hurled at this guy. It was a combo of death state meets murderous rampage mixed with a dash of $1 tip and a splash of maternal protectiveness. And also, maybe, some pity. Cause what the fuck, man. But lets tip our hats to Sandy. I seriously would have curled up into a ball, given up and left myself for dead a month ago if it were not for the support and love I get from people like her, but especially her. She's amazing. Talk about a real mom. We won't go there on my mom. At least not today. 

On top of that, we have the volunteer at the cancer center, who was so sweet and felt so agonizingly bad I feel guilty even blogging about her. She actually rubbed my stomach as she asked. Horrifying. A few other randoms. I get the knowing stare. I'm so glad my fake pregnant belly makes strangers so happy. Oh, and the lady I buy my cupcakes from. 

But wait, wait, wait. Back it up!! Is it the cupcakes? Is that why I still look 5 months pregnant? HELL NAW, PEOPLE! I'm not allowed to exercise, save light, recreational walking (no treadmill which is driving me bonkers in this heat.) HOWEVER, I am not sitting around, eating 5,000 calories a day, creating this huge tummy. It's my ovaries and the remaining tissue in my uterus. You see, I have/had what my doctor refers to as a "very vascular," tumor. That means lots of blood and guts and crap. That means its large and takes up a lot of space. So my uterus is having a hard time shrinking back to its original size. Couple that with the fact that my ovaries are huge and covered in cysts from all the extra hormones, and I look like I'm just in the cute stages of bumpin' it. Which is, for the record, not cute 14 weeks postpartum. 

I said for me, it never used to be that often that I thought about my stomach but that was kind of a lie. Ok, big fat lie. Like most women, I am obsessed with my stomach! I used to be a skinny bitch, and even then I think I probably thought I was fat. Ever since I graduated from college and my metabolism took a perma vacay, since it was coupled with laziness and happiness... I've had a little more cushioning. For awhile it was ok. But then it grew into a problem. A nagging self hatred at the center of my being. I started to understand how Eve could write a whole book. I dedicated hours sitting at work, filled with self loathing; thinking about my stomach. 

So, this has been hard. Because my stomach was ok. And I would give anything right now, just to have my flabbiness (my fixable, jog-away-able stomach,) come back. 

Tuesday, July 9, 2013

3am, The Blogging Witching Hour

Update: 3:30 AM. 
This chemo got me a little worse than the last, although it may have been the cupcakes. I don't usually pay much attention to what I mangia (eat!) before bed, especially with all the antiemetics, but that frosting may have been too rich. What a way to go though, right? When I say it got me a little I mean some vomiting, and a whole lot of nausea. I woke up with my new requisite night sweats, despite the A/C at 69 degrees, just one sheet, and the fan on. Don't worry, I put Jack in warm jammies when it's cold like this. On top of that, I'm doing that nauseous thing, the kind where you can't get it to go back down and you do the "oh shit," shuffle between sitting and lying down, between the bathroom and bed. You don't want to be sick, but you kinda do? In this case, getting sick does not feel better. Just FYI. In case you're ever here. 

Sometime in there Jack woke up and as Jim went to make him a bottle he screamed and screamed of course. Nothing is a worse feeling than your child being in pain or discomfort, no matter how mild; especially when you can't fix it. I might bring a box of rubber gloves up here, just to help in situations like this. I could rub his belly or even change him with the gloves with no real contact. 

Last week, Jim told me he's afraid he's being poisoned by the chemo. Both him and the baby. This naturally made me feel petrified that its true (the medical staff make it seem like it isn't, but are also pretty vague, they don't seem to know much.) But it also made me feel like an awful mother for it not occurring to me sooner. It was during a day he wasn't feeling well, teething, throwing up a lot. I kept thinking to myself well why didn't I think of that? And, lets get this kid to the emergency room stat and run bloodwork and every test known to man and figure it out!!!! NOW!! 

Ever have a parental moment like that? I'm guessing its actually pretty common. Phew. So after all of those feelings subsided I'm left with what I'm feeling now, which is fear and sadness, and more confusion than before. So, about the same feelings. Coupled with guilt when I think "it's just not worth it to expose him by hugging or picking him up right now." 

So, I'll update this blog through a sheet of tears on my eyes. The toxic kind. Dripping onto the sheets with no one to wipe them away because they could kill you. Or at least hurt your liver, right? Who knows. God damn Vincristine. Stupid fucking cancer. You know what this is? It's a thief in the night that comes and tries to take away the things that matter the most to you. It pushes you completely to the edge of the Grand Canyon, then mocks at you from the other side, hands on hips, defiant: "nah nee nah nee boo boo, you can't get me! And even if you do, you're going to live the rest of your life in fear that I will be coming back. Even if you have a good day, just one good day, I will be there for the bad ones that inevitably slip in. I will be the stuff of nightmares that keeps you awake and nags at the corners of your deepest subconscious. I'm the one who tells you you're nothing, no good, weakling. I know the power of the words "what if you can't?" I'm the one who says, don't make plans, they might not work out. And ha ha ha to those fond fantasies about your son: his first words, steps, foods, dropping him off at kindergarten, college, toasting on his wedding day. I'm the reason you're lying on the bathroom floor at 4 am, with your cheeks pressed to the tile, thanking heaven and earth for the blessed coolness on your skin. I'm the one who brings sores to your mouth, bubbling and cracking at the surface, mocking that summer tomato harvest because who on earth would eat that much acid with mouth sores like that. Or heartburn from the steroids you have to take to counteract my toxic effects. I'm the one who causes the searing belly pain that 5mg of Valium and a healthy dose of hydromorphone barely takes the edge off of, the constant feeling of vague seasickness no matter where you are, even on dry land. I took your hair, ha ha, how does it feel? I made you ugly. I taught you things about taking life for granted, thinking you were safe, young, healthy. And I'm bigger than you." 

But the thing is, you know cancer? You're not bigger than me. You're tiny and wimpy and useless. You're talking smack and half the shit you're trying to take credit for belongs to the chemo and Lord knows, I need and love that chemo. You're impotent and unintelligent. You try to act like you went to finishing school and got all classy, but really you're just trailer park trash! A wolf in sheep's clothing. You're spineless and spiteful and not at all very nice. I wouldn't share a cupcake with you, even if I had a dozen or more. And I always share cupcakes. I wouldn't share anything with you, including the delusion that anything you try to make me believe about not beating this is true. Not today, not tomorrow, and not 30 years from now when I'm toasting Jack and his beautiful bride. Or groom. Whichever he wants. (Please, no cyborgs.)

That's all for tonight folks. I'm going to have a romantic moment with a bottle of tums, maybe a homeopathic sleep aid (sidebar, calms forte, really works, lets talk homeopathy another day mmmkay?.)  Then, hopefully sleep. Sleep well or have a great day, depending on which side of the globe you're on when you read this. And if you can spare the time, tell me which side. I am so curious about my readers. Anybody out there??


Monday, July 8, 2013

Monday Chemo

Well, it's Monday, I have chemo AND ITS NOT RAINING!!!! I'm taking this as a very, very good sign. Today we are going for a number of zero (like always,) and neutrophils at 1,700+  I'm learning on a neupogen free week that that stuff makes me feel preeeeetty bad. I'm seeing the medical staff today, too. 

We can do this, people! For now I'm sitting in my favorite chair, blogging from my phone. I'm drinking a blueberry iced tea and Jack is lounging on my chest. He's so warm and soft. We slept side by side most of the night last night, first on the couch. I was so tired I fell asleep at like 9 PM! I don't mind though. Snuggling time is golden in this house. After today, it's 48 hours to touching with no barriers. I get very depressed when I can't touch the baby. This week, I had such bad mouth sores (on the corners/outsides,) that I couldn't smooch the little guy. And you all know what a fan I am of smooching! 

Today Jim promised to take me I IHOP for red velvet pancakes. I hope they actually have them though. They did last time, but they also didn't once and what's the point of ihop without red velvet pancakes?! I will be sure to post a family pic from the restaurant, and of course, update on here around 5 PM (Eastern time,) with my updated hcg! 


Cannot believe I didn't snap a pic of the pancakes, I just devoured them. AND finished Jim's! I was a pig today. 

Here at TCC now. So, I am not seeing Dr. Sehbai today, but I do get to see the NP. They already took my blood and sent it off to the lab ... I'm waiting in the exam room with Jim. I got a new hat, too. 

I FORGOT TO BRING THE NURSES THEIR  COOKIES. I'm pretty much the worst ever. 

They were good cookies too. Ok, more fit us and I will bring some to them next week.  

I got my labs back and my ANC (all over neutrophil aka white blood cell, count,) is 2,800!! That's amazing. My hemoglobin and liver function and everything is ok, too. That means NO NEUPOGEN. That makes me a happy Kat. I'm sitting here alone right now since Jim is talking to Clare the social worker. I just love her. I might put my head back and have a little snooze while I infuse the chemo .... 
They gave me a hot blanket!!! 

They had to give me phenergan ... I'm feeling a bit nauseous. But, just got this number back: 


Cupcakes make everything better. These are from Cake Break! In Rehoboth Beach. (

I love it there.