Brain Tumor: Post Surgery

It has been a busy few weeks since my surgery (more about it here) filled with more visitors, numerous doctors appointments, and various other things. On the same morning that David's mom was leaving town and my Mom and step-father were heading back up to Orange County David's brother Ken was arriving! Ken flew in from DC to spend five days with us. Upon landing his heart and stomach were probably set on the obligatory stop at In-N-Out, BUT .. I hijacked those dreams with a Pho lunch with my mom instead.

 

 

 Pho!

 

 

Not to worry, we hit In-N-Out later. His visit was pretty low-key and involved going out to eat a few times, seeing a movie (Argo - not bad), and spending a good amount of time relaxing on the couch. Not the most exciting way to entertain a visitor, but I wasn't exactly at my prime. Sorry Kenny!

 

 

In-N-Out Time

 

 

Obligatory Shot by the Water

 

 

Just Like When David's Dad & Mom Visited!

 

 

First Week Post-Surgery

In the week following my surgery I worked from home the first few days, and then returned to the office for the last two days of the week. It was really weird to be back after 10 days. One co-worker came by and said he was expecting me to come back with my half shaved head. Well, I don't disappoint! I showed him all the hair they shaved off and then put my remaining hair back into place. Everyone said you couldn't tell that I had hair missing. Good! I'm super self-conscious of how thin my hair looks now and I'm worried about the shaved part showing. So far a little hair clip seems to keep things tidy and arranged.

 

On the Thursday of the week I returned to work I had my first social outing scheduled. It was time for the annual Lunafest! Lunafest is a film festival sponsored by Luna that showcases films by women, about women, and for women. Girls on the Run San Diego was fortunate enough to be the local beneficiary once again for this film festival and was helping put on the event. I came by to mingle and say hi to all of my GOTR friends but didn't end up staying for the films.

 

 

Lunafest San Diego

 

 

The weekend following Lunafest we got our next visitor! And sadly our last for a while. My friend Jenny from San Francisco came into town to spend  the weekend with us. Rinse and repeat the same routine of dinner, movies, couch. My place is the party spot! 

 

 

Walk to the Dog Park with Jenny

 

 

 

One movie we watched was Fat, Sick, and Nearly Dead. This movie came highly recommended by one of my coworkers. After watching it he and his wife bought a juicer and he kept talking up the benefits of juicing to me. I was a bit skeptical going into the movie but came around by the end. At this point I'm willing to try anything that isn't too crazy that can help boost my health and immune system. We bought a juicer the next day, and Jenny bought one the following day.. and flew home with it! Now that is dedication.

 

 

Our New Juicer!

 

Apple, Carrots, Celery, & Kale

 

 

 

Just as with Ken's visit,  poor Jenny had the misfortune of visiting during a time that I still had a number of doctor's appointments scheduled. She came with us one Saturday morning to the reproductive clinic for my last daily checkups, but left on Sunday a few hours before the great egg harvest of 2012. The whole process of egg harvesting is really amazing. The way drugs can make you go from naturally producing one egg to being stimulated to produce dozens is incredible.

 

 

Fridge Full of Fertility Drugs

 

 

To prepare for the harvest David had to give me nightly hormone injections in my stomach for a week. Yes, fun times had by all! We started on a Saturday and finished the next Saturday. Things were moving along so quickly with my body that the harvest was able to occur that Sunday, several days earlier than they had imagined. The harvest was a one hour procedure that involved general anesthesia. While I was a bit nervous about going under again, I felt like that (and just about everything that comes my way now) pales to being out for 6 hours for brain surgery and in the ICU for three days following.

 

 

Preparing for Surgery

 

 

The procedure went quickly and I was only left with slight discomfort. I had stomach cramps for the next week or so and felt bloated, but now I feel back to normal. AND ... I now have the next generation of Monikas tucked safely away from the harm of the chemo drugs! I'm so glad I did this and so thankful that it all worked out. Thank you Mom, Dad, Livestrong, and Walgreens for your help! (More about my decision to do Emergency IVF here.)

 

 

The Great Egg Harvest Was a  Success!

 

 

Second Week Post-Surgery

Two weeks post surgery and I was fully back to work as normal. This week is what I'm now cherishing as my last "normal" week. I only had two doctors appointments and physically was feeling pretty good! In my first appointment I was molded for my radiation mask which I would wear during each treatment to keep my head from moving.

 

 

Radiation Mask

 

 

The second appointment involved removing the staples from the two surgical sites on my head (ewww!) and luckily barely hurt. I'm now staple free! If only my hair would grow back a little more quickly.... Sigh.

 

 

Hello Kitty Nails - Why not?

 

 

During lunch one day last week I also went over to my usual nail salon and had my nails filled. While I was there I thought what-the-heck and asked them to paint Hello Kitty on one nail. I had gotten the idea from Instagram and had asked if they could do it last time. The lady told me no they couldn't then, but they'd practice and try next time. And they did! Its not exactly the professional image I want to portray but its fun for a few weeks. Hey, I need small joys in life right now!

 

 

mAss Kickers

Sometime last week I started looking online at some brain tumor resources. I subscribed to the newsletters for the National Brain Tumor Society and the American Brain Tumor Association. I had previously also had come across mAss Kickers from the referral of several friends. mAss Kickers was started by a local San Diegan and brain tumor survivor Eric Galvez. I found a link to Eric's facebook profile on his blog and after accidentally sending him 10 duplicate messages (thanks Facebook!) I finally friended him so I could try to post on his wall instead.

 

 

Eric - Chief mAss Kicker

 

 

Crazy timing, but that night he was hosting a mAss Kickers event downtown in the Gaslamp and invited me to join. I wasn't sure we'd be able to go since David is a huge baseball fan and I'd already made him miss watching so many games, but fortunately since he is the BBITW (best boyfriend in the world) he immediately said "Let's go!" and it was settled.

 

 

Tumors Suck!

 

 

The event was at a bar downtown and was named the first annual "National Tumors Suck" day. :) We met a number of people there including two others with brain tumors! I now know three young people with brain tumors! :oP Small world but it turns out that one even has the same doctors as I do. It was really cool to hear other people's experiences with surgery, radiation, chemo, etc. The event also had a few different people give toasts and words of inspiration to others as well. Being around all of those fellow "thrivers and survivors" really made me feel good. People there were in different stages of treatment and some were at difficult points with their diagnosis, but everyone seemed upbeat and positive. My kind of people!

 

 

Brain Tumors Unite!

 

 

When I got home that night I was looking at the mAss Kickers flyer and the definition of a mAss Kicker made me smile. It defined me and David!

 

1. noun. Someone who gets an intimidating diagnosis, hears the words “we found a mass in your ____(insert important body structure here)”, and refuses to let it control their life.

 

2. noun. Friend or family member of a patient dealing with an intimidating diagnosis. They are essential contributors to the mAss Kicking team. 

 

 

Third Week Post-Surgery

Its now the third week post surgery and my radiation and chemo pills have begun. The radiation isn't as bad as I thought it would be. Sure, having your face bolted into a table with a tight mask on isn't fun, but luckily each treatment session only lasts about five minutes. The mask is made of mesh and although it has airholes was kind of suffocating me. The girls were nice enough to cut a mouth hole for me on the second day. Maybe next week we can draw eyelashes on my mask as well. jk

 

 

The Magic Radiation Machine

 

 

The chemo pills so far haven't been making me sick but an antibiotic I'm taking Monday, Wednesday, and Friday nights is really putting me out of commission. I took the first pill Monday night before bed and almost instantly felt sick. I felt queasy all night up until Tuesday morning which involved hours of being sick. That was fun. I saw my oncologist on Tuesday and he said that instead of taking the pill before bed I could take it with dinner instead. I did that last night and felt a bit less queasy, but this morning I woke up with a terrible headache which overshadowed the queasy feelings and made me feel terrible for most of the day. I had emailed my doctor last night when I started to feel sick and he told me to move some of the other medications to other times as well. Let's hope third time is a charm and this Friday night and Saturday morning I feel okay!!

 

 

 

 



Brain Tumor: Surgery Complete

It's hard to believe that a little over a week ago I was having brain surgery! And to think a few weeks before that I was nearing the peak of my training for the Marine Corps Marathon. How quickly life can change! My surgery was set for last Monday the 8th, and during the procedure my neurosurgeon was going to biopsy the tissue and then place a shunt to drain the fluid that has been building up in my brain as the tumor has slowly grown over the years. Since the tumor is on a part of my brain that can't be removed, the tumor won't ever be removed surgically.  This surgery unfortunately wasn't to remove the tumor and "cure" me. It was just the next step in a longer process.

(Back-story blogs Diagnosis, The Plan, Emergency IVF, Surgery Day)

Preparing

I've only had one surgery before in my life (septoplasty), have never broken a bone, and consider myself to have a low tolerance for pain. I'm also a germ freak and a bit paranoid, so going into this surgery I was nervous of ending up with complications, or quite frankly ending up dying. The night before my surgery I went ahead and completed my Advanced Directives online through the Five Wishes Online website. This service was given to me as a gift and I'm glad I now have it on record. Answering the questions were tough and not fun, but I'm relieved to have it done. 

 Immunity Boosting Smoothing Compliments of the Magic Bullet

Surgery Morning

On Monday morning I was instructed to report to the hospital at 5:30am for check-in to prepare for my 7:30am surgery. My dad, David, and his mom came with me and were able to stay with me for part of the morning. After getting there and filling out paperwork we went to the prep area where it seemed like a dozen people were being prepped in their own section for a surgery. I was given a gown fit to hold four people which I changed into before getting into the hospital bed. The next hour was a blur. I was whisked down to get a final MRI and to have a set of sensors attached to my head which would be used to guide the equipment during surgery. They were on my forehead and scalp ... meaning yep! The hair shaving began! Luckily, they only shaved a handful of quarter sized spots before the MRI. (Spoiler alert - more hair was shaved later. Boo.) 

My First Hospital Flowers - Hello Kitty!

Going into the MRI I was really scared. I had freaked out a bit with my first MRI and at that point I thought I didn't really have anything wrong with me.  I also wasn't just about to go into surgery. I had been praying all week that I'd make it through the MRI calmly and peacefully. Thanks to a constant stream of prayers running through my  head which almost became a chant, I survived. The MRI went quickly and I remained calm. After the MRI I came back up to the prep area to give goodbye kisses to everyone before being pushed off into the OR. I remember being moved onto the surgical table and lying there thinking about how tiny it was and how I hoped I didn't fall off. They had started the IV at this point and I could tell I was starting to go under the anesthesia. It felt kind of like drifting off into sleep. I could only see two of the six people around me the last I remembered.

POOF!

Surgery

The next thing I knew I was awake and suddenly it seemed like there were a dozen people scrambling around me. I saw several people come into my vision, heard what sounded like a lot of commotion, beeping .. and then that's it for the next few hours. The next time I remembered coming to I was in recovery and talked briefly to the anesthesiologist before falling asleep again. The last coherent conversation I remember having in recovery was with my neurooncologist. He came by and said he had just talked to my family. What? I thought that wasn't scheduled until 4pm! What time was it? It turns out that he had met with them early, but at that point it was about 3:30pm. Wow, where did the day go?

Recovering in the ICU

David told me that I was in surgery for the biopsy from about 7:30 - 10:30am. My neursurgeon came out to tell everyone that the first part of the surgery had gone well, and then went back in to perform the shunt surgery. That ended up finishing up around 1:30pm, so I lost the next couple hours dozing in and out in recovery.

Hello Kitty Edible Arrangement

Recovery

Things were a bit blurry between recovery and the ICU, but soon after leaving the recovery area I was brought to my ICU room where my parents and David and his mom were able to come in and see me. I was pretty drugged up and really stiff from the surgery, and noticed as everyone came in that I had about a million chords hooked up to every part of my body. I couldn't do much but lie in the bed, but as I started to talk to everyone I noticed that I could move, talk, and function as normally as could be expected given my condition. I didn't die in surgery! I wasn't paralyzed or harmed in some way! I felt great! Well, not great really. I felt beat down and tired and just wanted to sleep, but you know what I mean. 

My New Katniss Braid

The next 24 hours in the ICU weren't much fun but they weren't awful. I had nurses checking on me almost every hour and was constantly being poked, pricked, injected, measured etc. I barely got any sleep at all over that first day and a half and was still really stiff and sore.  I started to get flowers and cards and visitors in the ICU the next day as well which was really heartwarming. Friends, coworkers, former coworkers, and family all took the time to show their love and it really meant so much to me. Wow, its making me almost cry right now thinking about it!

 Care Package from my San Francisco Friends

Later in the day on my 2nd day in the ICU (day after surgery) a physical therapist came by to show me how to sit up in bed easily. The shunt that drains from my brain comes down the right side of my neck, down my chest, and down into my stomach. This involved a nice two inch incision in my abdomen which is still the most painful part of the whole procedure. Sitting up hurts! She showed me some turning over and sitting up techniques, helped me get out of bed, and then we took a short walk around the ICU, up and down a flight of stairs, and then back to my room. Who knew I'd be going up stairs the day after surgery?

While I was in the ICU the rest of the 2nd day and the start of the 3rd, all of the medical personnel who came in remarked on my impressive progress. The plan was to move me down to a lower level of care next, and then discharge me after that. Due to some space restrictions in the hospital the 2nd night, I ended up staying that night in the ICU as well and into the 3rd day even though I was no longer considered a critical patient.

First Night Home!

Discharged

On the 3rd day, my neurosurgeon came in to talk to me about options. Did I want to go home? Did I want to stay? Initially I was afraid to go home. What if I needed people monitoring me all day and night? He assured me that I didn't and recommended that the best course of action would be for me to go home, sleep in my own bed, start getting back into my old routines, and to get away from the risks of infections and other things that the hospital presented. We agreed that I would go home that day, and late Wednesday afternoon I was discharged.

With David & My Cousin Twin on Thursday

Recovering at Home

On Wednesday night a lot of my family came over after dinner to hang out and see how I was doing. I took it easy most of the next two days but did make it out for a family lunch on Thursday and out for my mom's birthday lunch on Friday. I've been home resting since then, and am amazed to say that now that a week has passed since the surgery I almost feel totally back to normal. The surgical area on my stomach is still tender, the surgical area on my head is still shaved and sealed with staples, but aside from that when I'm just sitting here I feel like a normal person again. (Note - I've been warned not to exercise for 3-4 more weeks and I'm being good and taking that advice!)

Family Group Lunch on Thursday

They ended up shaving about 60% of the right, back side of my head for the shunt surgery which I'm still a bit bummed out about. I miss my hair! Luckily I had a lot of hair, and the hair that is left is long. A lot of hair is still missing though and it requires strategic placement in the mornings when I'm getting ready. I try not to think of it too much and am trying to focus on being grateful that throughout my future treatment I shouldn't have to go bald. That's a win right?

Happy Birthday Mom!

Next Steps

I've had a number of follow-up appointment this week with my various doctors to see how I'm doing, and I've already started fertility treatments to have my eggs harvested late next week. This weekend and next weekend will be my last true "free" weekends, since the following Monday on the 29th I will begin my six weeks of radiation and oral chemo. 

Thank you so much to everyone who has said prayers for me, has sent kind messages to me, and has really shown your love and support over the past few weeks. I still have a long road ahead of me but I'm filled with hope and love, and can only look forward and hope for the best possible outcome. I love you all!

Miles for Mokie Love

I can't express in words how much the Miles for Mokie page means to me! I'm touched every day by the kind words, cheers of encouragement, and cute and silly pictures that everyone is posting. I love every one of them!!