Phew, it has been a long time since I updated this blog. A really long time.... let's just go ahead and address the obvious. As most everyone that reads this blog already knows, I was diagnosed with brain tumor in mid-August and underwent brain surgery in mid-September. Well, I never thought I'd ever have to say something like that in my life, but here I am post-surgery… alive, doing very well, and recovering (8 weeks post surgery to be exact). To be honest, so much has happened over the past few months both physically and emotionally that I'm not sure whether I want (or if its possible) to recap everything here; but, as this blog serves as both a personal journal for myself and a way to keep family and friends updated, I did want to share several photos, tid bits, and a few of the common questions I've gotten from people with my answers. Hopefully this gives you a glimpse into my world over the past few months. So here we go:
What is your official diagnosis? I had a brain tumor, official name, a pilocytic astrocytoma, which is most common in children. In fact, my doctors think it has been slowly growing since I was a kid and I just now started noticing it… which brings me to the second question:
How did you know there was a problem? I never get headaches and I started having small headaches and aches on the left side of my head, face, and neck consistently for 5 weeks. I went to several doctors before they found my so-called "evil invader" on an MRI scan:
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| The white blob on the bottom right is the tumor, this picture still freaks me out a bit |
What was the surgery like? I had a craniotomy, i.e., part of my skull was removed to access and remove the tumor in my brain. The incision itself was about 8 inches long in the back of my head and I had about 15-20 staples to hold it together at one point, causing me to fondly refer to it as my "zipper" due to its appearance. I won't post photos of it or other graphic things in case anyone is queasy with this type of stuff, but I personally think my zipper made me look like Frankenstein and/or seriously bad ass to the average bystander -- I took some pride in this over the first few weeks ;)
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| Doing a silly dance in the hospital the day before surgery |
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| MRI "fiducial" markers were put on my head with glue the day before the surgery to guide the neurosurgeons during the surgery - I joked that I looked like some sort of martian |
Were you awake during the surgery? Thank god no. The tumor was in the part of my brain that deals with motion control, so they didn't have to do any testing during the surgery that required me to be speaking/responding during surgery. I only remember being wheeled into the surgery room and then waking up in the ICU.
Are you expected to make a full recovery physically after the surgery? Yes! I was cleared by PT/OT in the hospital and I don't have any physical or mental complications from the surgery, perhaps only maybe some headaches on an ongoing basis. A big "thank god" for this one as well! The doctors said that the fact I am young and healthy was a big contributing factor.
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| First walk with PT in the ICU -- success! |
Were/are you in a lot of pain after the surgery? How long did you stay in the hospital? Another "thank god" no, I have had fatigue, swelling, fever, headaches, and other fun symptoms - but I wasn't in serious pain more than a few times. This is actually pretty common for brain surgery (unbeknownst to me before!). Although it is obviously a very serious surgery given that it is on the brain, it is not known for being particularly painful in comparison to other surgeries. Overall, I was in the ICU for 2 nights and a regular hospital room for 1 night before going home.
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| High spirits yet tired after my first walk |
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| My lovely husband ordered an amazing Italian feast for me one the nights while I was in the hospital |
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| My sister knows the way to my heart is through Sour Patch kids |
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| Left the ICU and set up in my private room |
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| Smiles to express how happy I was to be out of the ICU and in a private "normal" room in the hospital |
How has recovery been going? I'm currently in week 8 of my post-surgery recovery. The first 3 weeks were (dare I say) surprisingly easy compared to what I expected. I was feeling really decent aside from napping a lot and feeling weak/tired. I found out that this false sense of "normal" was attributable to the steroids that my doctors started me on a few weeks before the surgery to control the swelling in my brain (and I continued to be on until 3 weeks after the surgery). Let me tell you, while steroids are lifesavers in the world of neurosurgeons, they are devious, nasty little pills in the world of patient symptoms. While I was on them they made me feel extremely jittery and anxious, gave me the acne worse than a teenager, I had trouble sleeping, and I had the appetite of a ravenous lion (I seriously ate nonstop). When the doctors took me off of the steroids after week 3 I suddenly had a high fever, chills, terrible headaches, felt more tired than I had ever been in my life, and had some other wonderful symptoms that are TMI for this blog. These symptoms sent me back to the ER for the day and it turns out these were likely withdrawal symptoms (or a terribly-timed flu) from the steroids since I was on such a heavy dose for 1+ month. I wish someone had forewarned me about these withdrawal symptoms. I felt like I was going backwards after feeling so great the first 3 weeks. The good news is that thankfully this time period quickly passed and ever since I hit the 5 week post-surgery mark I have been feeling better and only dealing with small headaches, being tired, and feeling weak, but this gets increasingly better every day. I actually return back to work tomorrow after 8 weeks of recovery. Although I'm not feeling 100% back to normal, I'm feeling good enough to get back into work and a routine (I think!).
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| Going on a walk with Dad post-surgery |
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| Many small walks! |
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| My sweet friends who came to visit me |
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| Unhappy with being back in the ER after week 3 |
Was the tumor cancerous? Perhaps the biggest "thank god" is warranted here. The tumor was Stage I, which basically means it was not cancerous. Side note: apparently the definition of cancerous vs. malignant in the world of brain tumors is complicated/confusing and I still don't entirely understand it, but that is a story for another day.
Is there a chance the tumor will come back? Unfortunately my doctor found out via MRI after my surgery that the surgeon wasn't able to remove the entire tumor, which means that I still have small remaining tumor "spots" in my brain today; however, since I don't have significant side effects, my doctors only need to monitor me using MRIs on a set schedule for the rest of my life to ensure that the tumors don't grow (or to catch it quickly if it does) -- so far so good!
How do you feel? I'm still processing this to be honest, and I anticipate my feelings changing throughout time… but I'll leave it at this for now, there are times that I have been sad and scared but at most times I'm happy with the surgery results and my future prognosis and I'm feeling positive and so very loved by all of our friends/family. I'm also more than ready to normalize and settle into our new life in California after all of this excitement.
Do you not want to talk about it? I absolutely do not mind talking about my brain tumor experience. In fact, since it has been such a big part of my life over the past few months, it would feel awkward to me not to talk about it/address it with people that I know.
Any lessons learned from all of this? So many. To state the most important in my mind:
First, I have the most wonderful, strong, loving, and supportive family and friends who literally carried me through this adventure. From the numerous flowers, gifts, cards, food, candy; to the assistance, calls, e-mails, visits, prayers, and texts of love and support; to my family and my 3 rocks (Ryan, Mom, and Dad!) who lived with me, supported me, and took care of me for weeks at a time, words just don't do justice for the amount of love and thankfulness I have. I know this experience wasn't only tough on me but was challenging at times for those close to me, so THANK YOU ALL, you literally were/are my saving grace!
Side note, how pretty are some of the beautiful flowers I've received over the past few months!
Second, although the doctors said I did nothing to
create the tumor, they did say that the key to keeping it from coming
back relies on leading a healthy and balanced lifestyle going forward. This means eating healthy, exercising, getting good sleep, being positive/happy, and leading a balanced lifestyle. I was a fairly healthy person pre-surgery, but this experience creates a renewed sense of focus for me.
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| My sister got me this shirt as a gift ;) |
Third, brain tumors bring perspective. After the past few months, daily challenges and stresses seem more manageable and less significant in comparison to the prospect of brain tumors and brain surgery. Every day I feel lucky to be alive and feeling well and therefore, I feel a renewed sense of focus on what is and isn't important in life.
And with that - it is onward and upward with a positive, healthy life for me!
