Thursday, June 19, 2014

Paging Dr. Brain Surgeon

I had my result's appointment today. My recent scan showed progression of the cancer. It had not spread but the activity in the current places was growing busier and so that meant it was time to jump ship because my current medication had stopped working. So, we need to move and a great new option for me is a clinical trial that uses medicinal treatments. It only took me a few moments to determine that this was right for me and the next step would be to meet with a clinical research nurse to get the ball rolling on my enrollemt. I left my appointment today disappointed but glad to have a plan.

Then, I went home and got on with my life. My parents are my strongest supporters that I have and they were with me today. After the appointment, they left and they even took Avery with them for the night, in order to give me a chance to run errands, relax, and unwind from the day's news. 

I was laying on my couch when I suddenly started to experience severe muscle spasms that were leaving my arm numb. Initially, I tried to take an anti-anxiety pill to see if it would relax me. I also chugged a bottle of water hoping it would hydrate me and relax my muscles, and then finally grabbed a snack hoping it would helps blood sugar. But to no avail, the numbness had moved into my right hand now. I lost mobility in my right hand and could not use it. In fact, if I picked up, it would simple fall back into my lap, lifeless. At this point, I was starting to realize that I needed to to be seen by a doctor, so I decided to head to convenient care. When I stood up I realized it was beginning in my foot too, so I called my friend Angie and asked her to come drive me to the hospital. I had trouble walking, but I made it down the stairs where I sat down. I had lost all feeling on my right side at this point and was beginning to panic. I was crying and just kept saying over and over, 'I don't know what is happening to me,' as I had so begun to violently shake. At this point my neighbors had begun to gather and and when the ambulance showed up, I was taken away immediately for fear of a stroke.

At my local hospital, I was given a CAT Scan immediately and steroids to help with numbness and shaking. After being assessed it was decided by my Oncologist, other the phone, that I needed to be transferred to RUSH for more tests. About four hours after I arrived at the ER, I was whisked away in another ambulance to make the trek to Chicago. But luckily, I had regained feeling and the majority of my body motion at this point.

When I arrived at Rush, I was admitted at 1am. At 5am I was taken to for an MRI of my brain which confirmed that there was a tumor and swelling on my left frontal lobe. That area of the brain controls sensation and strength for your body and explains why I had, what they are now referring to, as a seizure.

The size of the tumor is medium/large but it is right under my skull and considered very operable. SO, at 10am.... TODAY... I will be having brain surgery.

I will let that sink in for you, bc I know I needed it to as well at first....

Once the tumor is removed, they will do radiation to the area around it it insure that the removal was successful. From there, I will be transported to the ICU for one night and then a regular room after that, but hopefully won't exceed 3 more days in the hospital.

Going forward, I will be monitored with an MRI in addition to my scans. I actually  knew something was wrong this time. I had felt a shift in myself, in my intuition,
And how I felt physically. But- I hadn't anticipated it to be this. Not at all. But this is considered, catching it early and so that's a good thing!! I'm very at peace with the decision to have surgery and I'm extremely confident in the surgeon who is caring for me.

I'm asking for your prayers and positive thoughts. It is a bump in the road, but I'm still going to be fine. So, please don't worry--- only send your good thoughts, your love, good juju, and lots of prayers!!!

 Xoxo

Tuesday, June 17, 2014

It's That Time Again...

Surprised to see me again? Yesterday was a scan day, so I thought that I would take you along with me for that ride this time.

I get PET Scans every 3 months to check the progress, good or bad, of my cancer. It can be a mix of emotions because I have had some really good scans and I have also had some not so good scans. Sometimes, I think that it is going to be a long life to live in the unknown for three months at a time. But then, I turn the thought around and think to myself that I will do whatever I have to do in order to have that long life.

Scans can be unpleasant because there are needles involved, but I'm very used to them now and they don't really bother me. Its just a stepping stone to the results day so  that I can soon be on my merry way for the next 90 days.

When I arrive for my appointment, I am ushered back into a small private room with a sterile hospital-style recliner. They always confirm (more like, rub it in) that I haven't eaten in at least four hours, and then add an additional laundry list of questions. I'm not allowed to wear anything that has metal on or in it, which includes a bra clasp, zipper, bobby pins, or jewelry; otherwise, I have to change. And since I don't like to make this process any more complicated than it already is, I carefully plan an appropriate outfit the night before, just as though I'm preparing for my first day of school. These apparel stipulations can be a bit challenging; but, then again, no girl ever complained about having to wear yoga pants. After the initial interrogation, they start the poking. In the past, my veins have attempted to outsmart phlebotomists, techs, nurses, and the like. They roll, they jump, they hide, and they slide similar to some of Jackie Chan's greatest stunts (The veins, not the vampires). The PET Center at RUSH has three men on their team and I've scanned with each of them several times now and they are super nice and they all have stellar aim with a needle into my roly poly veins, which goes along way with me in regard to patient satisfaction.

There is a syringe attached to the needle which is two-sided and first takes blood to test my blood sugar; it isn't that big and scary looking, in fact, it is rather unassuming considering what it is capable of. Once my blood sugar is determined to be good, a flow of saline is released into the line to flush out the blood so the radioactive sugars can be injected. The saline flush is actually my least favorite part of the process because it leaves a less than desirable metallic taste and smell that corrupts my senses. Before the injection begins, the scanner is required to bring in a steel blockade on rollers, that he has to stand behind to administer the medicine so that he is not subjected to the radioactive affects more than he needs to be. <<insert humming of the Imagine Dragon's "Radioactive" here>> After this point, I'm left alone for 40 minutes with a stash of trashy news magazines and Facebook via my cellular device to pass the time. I'm required to hide under a couple of blankets because my body temperature needs to stay warm, otherwise it messes up the scan. So, I cozy up under the heated blanket that eventually becomes my cape as I morph into a superhero while the injected material processes and courses through my body before eventually making the cancer glow so it can be identified in all the nooks and crannies in which it resides.



When it is time for the actual scan, I leave my little room of solitude and head into the hallways full of chatter, zings, swooshes, beeps, and beds whizzing by with patients as passengers to solve their own body's mysteries. The PET Scan requires me to lay on a table that is about 6 inches wide (that might be a slight exaggeration, but I'm leaving it that way so you get the idea of how uncomfortable it is) and I'm slid in and out of a huge ring that does amazingly high tech things while I use the next 13 minutes to take a snooze. Despite what is becoming vast experience with these scans, I'm still reminded -profusely- that I'm not allowed to move. What. So. Ever. Otherwise, we will have to start over. Of course, this triggers every itch, twitch, sneeze, and spasm humanly possible, so I giggle for the first few seconds before I'm actually ready to begin.



The duration of the scan is less than 15 minutes, so I catnap and then I'm sent on my way with well-wishes exchanged between my scanner and myself for our children and families. This last time, I even scored a pair of New Balance gym shoes for Avery as my parting gift. No, it's not a friendly gesture from RUSH, in fact, they charge me an arm and a leg to buzz through their giant donut every three months. Well, actually, I'm not sure that my arm and leg are actually even worth the bill that I get in the mail... But since the PET team and I are buddies now (and one of their wives works for NB), the sneakers were an added bonus for my baby.



So, now, I just wait. The results will process through a computer and be read by some medical professional to whom I am a faceless chart and eventually it will end up in my doctor's hands and translated to me. From start to finish it will be four days until I know the results. But, really, I already know.

And, so do you.

I'm fine.


Wednesday, June 11, 2014

Kaitlin

I've really been slacking in the blogging department lately. My intentions are good, but my follow-through leaves something to be desired at times. I write blogs in my head all the time, whether I'm driving in the car or drifting off to sleep, but lately it seems like I reach my desired destination or cash in my ticket to dreamland before my pen can actually hit the paper or my fingers can meet the keyboard. But, I'm here now, and hoping that my followers haven't given up on me yet so that I have to round you all back up.

I know that cancer can be a devastating disease, and I know that because I have been on both sides of it. Sometimes though, I think that my diagnosis has been harder on the people that I love than it has been on me. I know that my nonchalant outlook can be inspiring but it can also probably be confusing at times. I don't minimize the gravity of the situation, but I choose not to dwell on it either. I know that perspective isn't always the easiest to adopt at first, so I was curious as to how it affected those who are closest to me. I asked some close friends and family to write about my diagnosis from their point of view. (I'm also hoping that it catches on enough to have my guest-bloggers become a small feature in between my own blogs so I don't disappear with life for so long at a time.)

Kaitlin has been one of my best friends since college. We were roommates at NIU for two years and in the same sorority. I've had some of the best nights of my life with Kaitlin, some of which are blog appropriate, and some of which are drenched in a keg of beer and have been locked in the secret vault of college debauchery. Anyway.. we have remained close since our memorable college days, now enjoying being moms together. In fact, we are keeping our fingers crossed for a future marriage for Avery and her son Trace, thus handing down our friendship to a second generation. 

When I asked Kaitlin if she would be willing to write about my diagnosis from her perspective, she seemed incredibly willing and enthusiastic. She said she already knew what she was going to say... 

Ashley and I attended our friend Lindsey's baby shower for her daughter Ella, at the end of January 2013. On our way out of DeKalb, we decided we needed some caffeine and more time to catch up before we left town and went our separate ways. It turned in to ice cream instead, much to the delight of her little mini-me, Avery. Texting had been our main source of catching up for way too long! As we chatted away, she went into more details with me on her health issues and pain that she had been experiencing. She had just undergone more testing with her doctor. She had recently received a call from her doctor’s office and the receptionist asked that she come in to go over the results. Ashley was on her way to her friend, Kaylyn’s already, so she would have to wait to get into the office. The receptionist seemed taken aback; she thought Ashley needed to come in right away. The doctor said it was fine if she waited until Monday. As Ashley told me this, I remember experiencing a sinking feeling. First of all, I had no idea how bad her pain, from which she had been suffering, was. Secondly, it terrified me that the receptionist was so adamant that she come in to talk to her doctor. 

The following day my work BFF and I did our weekend recap. As I relayed that story to her, I cried. I could feel the situation was not good. Ashley told me she would keep me updated on her appointment. Throughout the day, I had many urges to text her. Finally that night, I could not wait. I texted and asked how everything went that day. She responded, “I have cancer. :(”

She was a new mom, and an outstanding and caring person, with an enormous heart. I was physically sick. Yet somehow, I already felt a sense of calmness from her. I have cancer :(. Not freaking out,  not losing it, etc. In our first cancer interaction, she was already foreshadowing how strong she was going to be. Little did we all know just how very strong she would be….
Along the way, we learned it was not only cancer, but Stage IV. As always, she rolled with the punches. Not only is she showing other cancer patients how to fight, but she is showing those in and outside of her circle how to live. Everyday there are bumps that come with daily living, but she reminds me constantly to step back when I think the road is getting rough. In the grand scheme of things, it is never as rough as I might think. She has become a teacher to people all over.

Throughout her fight, I’ve had MANY questions for her, and I have a favorite response to share… I asked if she was so excited when her doctor told her recently that her cancer activity was decreased in some areas and was completely gone in others. She said something along the lines of, that it was great news, but she did not freak out with excitement like some of us may have. It was an expectation to receive this news. It is part of her plan. Very matter of fact and confident. She knows how to put everyone else at ease along her journey, as well. That’s exactly how I feel now. I know she will conquer cancer!

This is me and Kaitlin the day that she and our friend Karen ran a marathon on my behalf. Kaitlin had just had a baby, a few short months, before this day.  I truly do have the greatest friends!