Today is the five year ANniversary (AN=acoustic neuroma) of my craniotomy/tumor eviction. Five years and there are still times when I experience moments of “did I really go through all of that?”
Five years post-op feels different. Life has obviously gone on, I am living my “new normal,” and yet in the last few weeks I have had emotions hit me that I thought I had already processed. It’s been a bit unsettling. However, instead of burying my feelings, I’ve been peeling back layers and riding the emotional waves as best I can. Thank you, therapy.
I know this anniversary is one that my husband is experiencing as well, just from a different perspective. He waited for hours in the hospital as the surgeons worked to remove the tumor from one of my cranial nerves. One surgery, two different experiences. I spent last night re-reading the blog posts that Jake wrote on the day of my surgery and the first few weeks of my recovery. They are a reminder to me of how he will do whatever he needs to do for his family and how he can always find a positive perspective – something that was a huge encouragement to me during the first year of my recovery.
I am not the same person I was when I was wheeled into the operating room 5 years ago. Physically, mentally, emotionally, I am different. I know people change over time, but the difference I feel is not something I can necessarily explain. Rather, I can feel the difference inside me – some of it is good and some I continue to work on refining. Again, thank you, therapy.
How do you honor the anniversary of a day that was not joy-filled? For me, it varies year to year. This year, Jake and I went to lunch at a local Vietnamese restaurant. The phở was delicious and the conversation was good for my heart. I process things by talking, and Jake is a very good listener.
This evening was filled with shuttling kids around and attending a school board meeting. (Because the world doesn’t stop for brain tumor surgery anniversaries.) I did make time earlier in the day to bake a chocolate vinegar cake (GF just for me). I know I’ve written about it before. It’s one frequently enjoyed by Jake’s extended family and one of my favorite desserts. I made it for this ANniversary back in 2019 and felt it was fitting to make it again this year. So maybe that’s the best way to remember the day – with cake.
Stay tuned…5 year post-op MRI is on Thursday. I’m praying for clear scans.
Three years ago I laid down on an operating table and put complete trust in my surgical team to remove the tumor pushing on my brain.
Today, I celebrated my 3rd ANniversary (AN=acoustic neuroma) on the slopes with my family, snowboarding for the first time post-op. (And first time in 11 years!)
Post-op life continues to be a blessing – in spite of many challenges that have taken place. (Not just surgery side-effects.) As a simple reminder note to myself: some of the things I still deal with are the same as what I faced immediately after surgery – SSD, sense of taste gone on half of my tongue, and my right eye doesn’t close as much as my left when I smile. Fatigue is still present and I take naps several days a week. I think a lot of it has to do with my brain filtering noise – tinnitus as well as household noise. I’m grateful to have a family that continues to understand that resting is something I simply need in order to have the energy to make it through the day.
A few individuals remembered this ANniversary and reached out to me this year. I’m grateful that they have done so. 01/23/2018 was a life-changing day for me and the support my family received leading up to it and after it will never be forgotten.
8 weeks while pregnant always felt so slow – probably because I always felt so sick. The 8 weeks since Astrid’s death and delivery have gone so fast. I cannot believe that much time has passed.
I am going to see a therapist on Monday. The weight of the last (almost) three years is heavy and even though I have done a lot of work on my own, Astrid’s death made me realize that it would be good to try to work with someone other than myself. I have no idea whether or not this therapist and I will be a good fit, but I’m willing to give things a shot. I want to heal from the hurt of Astrid’s death, the loss of relationships, and the stress, physical and emotional toll that having a brain tumor diagnosis and surgery have had on me.
What follows was written during our hospital stay. I fluctuate between past and present tense and have chosen to leave it as such since it gives a more realistic feel for how I was feeling when I was writing.
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My in-laws arrived just before 7AM to stay with the kids while Jake and I went to the hospital for my induction. We checked in to Mercy Hospital around 7:30AM. Nurse Ka got us situated, I changed into my gown and blue grippy socks and then answered a bunch of admitting questions. I met Dr. Ayika, who explained the induction process (which was new to me) and said that a “normal” delivery should still be ok even though the baby is breech.
We ordered breakfast, and after eating, my induction was started.
9:50AM. I expect a long, slow ramp-up over the next 24 hours. I plan to request an epidural once the pain is gets too intense. This whole experience is emotionally painful enough. I’m glad there is the option to ease some of the physical pain. Jake is resting, which is much deserved. He has been “on call” for me and the kids for almost this entire pregnancy in a more intense way. I am glad he has an opportunity to sleep if he needs to or be alone with his thoughts. His presence beside me is comforting. I know he wants to “do” something, but him being here is doing just that for me.
Our friends, Melissa & Tom, brought us some lighter conversation via our texting group thread. They are two of several people who have continued to check in with us, pray for us, and offer support as we’ve needed it. They plan to be at the cemetery on Thursday along with Michelle and Rita (who may just “happen to be at the cemetery” visiting her dad <3. )
We had lunch around 2PM (Jake said he likes the hospital food) and then closer to 3:30, Ka came in to introduce my next nurse, Amber. She’ll be on until 11:30PM. I was given another dose (increased) of the induction med and they monitored me for a while to make sure contractions were progressing.
*side note – Amber’s BIL had an AN. It always surprises me when I meet someone who knows about the tumor I had.
4:45PM. We’re resting again and I plan to order dinner around 5PM. Contractions are still manageable , so I don’t feel the need to request the epidural yet. Going to pray a Chaplet of Divine Mercy in thanksgiving for the overall peace that I feel right now in this moment. I know emotions will change – likely rollercoaster, but right now I’m so grateful for peace.
Dinner came, we ate and then rested again. While I was laying down, I started feeling nauseous. I ended up getting sick – felt somewhat better afterwards. Amber, my nurse, gave me a med to help with the other stomach issue I was having and got my IV started in advance of my epidural. (Prior to that, Dr. Ayika checked and I was dilated to 1cm.)
Between when I was checked and when the anesthesiologist started to prep for my epidural, my contractions really started to ramp up – in intensity and frequency. Jake sat in front of me as I bent forward so the epidural could be placed. I breathed through numerous contractions (while wearing a cloth mask!) Once it was finally in, it took a long time for it to take effect. (Longer than any epidurals I’ve had in the past.) The contractions were strong and painful and numerous – nothing like I remember feeling with my other labors. I laid on my side, breathing and begging for the meds to kick in. They gave me a dose of fentanyl to try to ease things a little – they did, slightly, in addition to making me tired and spacey. During one of the strong contractions, my water broke. Thanks to the meds, I may or may not have said, “Oh shit, my water just broke!” and then apologized for swearing. It was a relief at first, but then the contractions intensified again. I told Amber that I felt ready to push, so she checked me and said she was going to call Dr. Ayika so I could deliver.
Dr. Ayika and Amber got me situated and within 6 or so pushes I delivered (breech) our sweet little girl at 9:21PM. We named her Astrid Philomena Sheck. She was 12 incues long and 3lbs. 7oz. They laid her on my chest as Dr. Ayika delivered the placenta. (Every time I lost fluid, I thought that had to be it…but then there was more. I am amazed at how much I had retained. It explains why I was measuring four weeks ahead at my last appointment with my midwife a little over a week ago.)
After Jake and I held Astrid, Amber and Laurenda (my overnight nurse) took her to take some pictures in another room. We obviously have the ones from immediately after birth, but the nurses took such sweet care to put her in a party dress, hat, diaper, and blanket. She looked like she was sleeping peacefully in the bassinette. They gave us an SD card with the photos that we will look at at home.
We spent the next several hours with Astrid’s body – blessed her, said bedtime prayers with her, and told her how we look forward to seeing her again one day in heaven. That hope – eternal life in heaven – is what we can cling to.
We said goodbye to her body at 2:08AM.
Sunday morning 5/17. Both of us slept hard. We’re exhausted – emotionally and physically. The texts and emails we have received since announcing Astrid’s delivery have been full of love, prayers, and support.
I cannot believe what we have just experienced. It feels like a dream. And yet, when I look down at my belly, I know it wasn’t. I am so sad. I miss my little girl.
When I had my craniotomy two years ago, a portion of my head needed to be shaved clean. Thankfully, my surgical team was very experienced and knew to leave a small section of hair in front of my ear. When my hair was down, you couldn’t even tell it had been shaved. That shaved area has been growing back ever since. At first it was fuzzy, then it was curly, and now it’s a unique texture and wave that I can’t straighten no matter how hard I try.
Very few people have seen what I looked like after surgery. This was taken shortly after the medical resident removed the tightly wound bandage that I wore for just shy of 48 hours:
To say I’ve neglected my tresses the past two years would be an understatement. Most of the time (now that it’s all long enough) it’s pulled back into a ponytail of sorts. I decided to go in for a healthy trim a few days ago and now you can hardly tell the difference between the “new” section and the old. Hooray for two years of growth!
I took the Shecklets on a bike ride (a.k.a. vestibular therapy) on this beautiful summer Saturday. (Next time we will take Jake with us. He went to his parents’ cabin to help with cleaning up from last week’s storm.)
One and a half years ago I was waking up “on the other side” of surgery with a new lease on life, but unable to see straight or walk without assistance. Tonight I’m walking a relatively straight line by myself and using this quiet time to reflect a little.
The doctors told me that I would see huge improvements in the first 6 months post-op with additional slower/smaller improvements possible over 1.5 – 2 years post-op. Most of the time, when people ask how I’m doing, my response is, “I’m doing really well. I’m grateful that I only have minimal side-effects to deal with.” And that’s the truth. I cannot be more happy with how well things have gone post-surgery.
There is a reality that I’m facing though. In reaching the 1.5 year post-op mark, I’m most likely now at what could be considered my “new normal.” I knew before surgery that I would come out of it SSD and there was the possibility of nerve damage. And let’s be honest here – I had BRAIN surgery. You don’t go through something like that and remain the same.
I have grieved losing my hearing in my right ear and feel like I have adjusted pretty well overall. But that doesn’t mean being SSD, having no sense of taste on half of my tongue, the constant ringing in my deaf ear (tinnitus,) and fighting fatigue aren’t frustrating. (They’re very frustrating in certain situations – I just try hard to hide that frustration.) There are days where I wish I didn’t have to tell my kids 137 times, “I can’t hear you,” or “Wrong side.” There are times when I wish I could thoroughly enjoy the flavor of a meal or dessert. I will likely always have to manage fatigue (due to physical exertion as well as sensory overload.) I have also found that my agitation threshold is much lower than it used to be – my brain can only take so much stimulation before it has had enough. The agitation and fatigue are the most challenging side-effects for me, but I’ve gotten much better at recognizing when they’re coming on and either remove myself to take a walk or a nap – depending on which one I’m dealing with. I’m extremely grateful for a supportive husband and kids who quickly learned that mom just needs breaks to recharge – like the opportunity I got tonight.
For the past year, I’ve been holding it together and functioning like everything is going to be ok thanks to the confidence my neurosurgeon, Dr. Schwartz, had that he resected my entire tumor. I missed the call from my other surgeon, Dr. Friedman, today but he left a message letting me know that my MRI “looks gorgeous” and I don’t need another one for four years.
I’m crying tears of joy and breathing a huge sigh of relief! Thank you, Lord!
It’s snowing today and everything is covered in a fluffy blanket of powder. Typically, I wouldn’t venture out (other than to go to and from the bus stop) but my MRI was scheduled for 9 AM. Glad I didn’t have to drive far – though 4-wheel drive worked splendidly.
The scan took about an hour and I walked out with the disk of my images in hand.
I took a look at the scans when I got home. Obviously I’m not a radiologist, but I didn’t see the same tumor blob as on my last scan. The sinus infection I had during my first scan cleared up nicely as well – ha! (The right side of my head is on the left side of each of the images below.) I was able to see some of the titanium mesh that was screwed into my skull as well as what I believe is the fat plug they took from my belly to fill the space left by the tumor. I will, of course, wait for “official” word from my surgeon that things look ok, but for now, I can wait patiently and not feel anxious.
Today marks 1-year since my surgery at UCSD to remove the acoustic neuroma pushing on my brain. (I can’t believe I just wrote that!) So much has happened over the last 365 days. I give thanks to God every day for the gift of continued healing. We celebrated my ANniversary (Get it? AN = acoustic neuroma) by having dinner out. Then we came home for chocolate vinegar cake – Grandma Lois’ recipe.
Jake and I took some time this morning to reflect back on 1/23/18. Some of it I remember clearly and some I don’t. It’s probably a gift that the meds I was on also kept me from recalling a lot of what I experienced immediately post-op. There are times I think back to what has transpired over the last year and a half and shake my head in disbelief. Did I really go through all of that? Then the reality of my lost hearing, my scar, my hair that continues to grow back, my tongue that has lost its sense of taste on one side, all “prove” to me that yes, I did in fact experience all of this. And God has shown me His faithfulness throughout all of it. I am changed. I’m definitely not the same person I was before my surgery or even before my diagnosis. And that’s ok.
Next up – 1-year post-op MRI to (hopefully) confirm zero regrowth.
