It is with great sadness, but thoughtful consideration, that I have decided to shut down the blog. I have enjoyed my time with you. This has been a place where I could share my thoughts, my dreams and my hopes for the future. But, I have decided to try out a novel concept: Living real life, in the here and now, being fully present and not distracted by “virtual” reality.
Thank you for following the blog. Thank you for your kind words of support and love for our family. If you wish to keep in touch, please follow the contact link above and drop me an email.
As always – blessings.
Aren’t we glad it’s Friday? What a week (or two, or three…) it has been. I have a heartwarming story to share today to take us into the weekend. But, grab some tissues. (You’ve been warned.)
I recently heard about a group called Jenny’s Strength. It’s a non-profit that was started by the two young daughters of a woman who courageously fought but eventually lost her battle with brain cancer. They have a mission of providing comfort and encouragement to children with parents who have brain cancer. They understand that children with a seriously ill parent have a special set of challenges. And, for kids, sometimes support needs to be tangible.
Will has known for a while now that his dad has cancer. He knows the words, “brain cancer,” “tumor” and, “chemo.” But, what he really understands about the big picture is up for debate. When he started to witness some of the debilitating side effects of his dad’s disease, however, it was clear that he was confused and scared. Ever since, I have been actively searching for ways to provide him with support and an outlet for his emotions.
I spoke with his pediatrician and met with a counselor who has expertise in helping children process grief. We have been collecting resources to foster honest, open discussions with him about his dad’s illness. Part of what I have learned is that kids don’t talk about trauma in the same way that we do as adults. He’ll often start a very serious discussion, allow me to answer one or two questions, then go right back to playing superheroes. That is totally normal. Little kids can’t sit down and participate in therapy the same way we do; their minds just don’t work like that. They have an innate need to play and that’s why things like play therapy and stuffed animals can bring them physical as well as emotional comfort.
The day we returned from the hospital after Garnet’s surgery, there was a package waiting for us (how’s that for good timing?!). It was from Jenny’s Strength. The package included four handwritten letters, one to each member of our family. It also included two Pillow Pets, one for each of our boys. Will was so excited to receive the package – it really made his day. He read his note out loud and later told me, “Mommy, I wanted to cry when I read the letter.” I let him know that it’s okay to cry. I did my best to explain that sometimes things can be simultaneously happy and sad. A hard concept for a kid to understand, I’m sure.
What I’m certain he does get, is that his new Pillow Pet brings him a special measure of comfort. It reaches him in a way that words can’t. It’s there for him to hold when he’s feeling worried, to bury his face in when he feels that need to cry, to cuddle to sleep when he needs peace.
We’d like to say a special thank you to Jenny’s Strength, and to all the people who have specifically reached out to our boys during this difficult time. Getting mail is a BIG deal for a little guy. And, being specifically included makes Will feel like he’s not an outsider to what is truly a family disease.
I have discovered that there is a sort of “high” one can experience in the midst of crisis. Garnet’s surgery on Thursday is a perfect example. The anxiety and stress preceding the decision to have surgery, then the anticipation leading up to it, followed by the inability to sleep the night before, leading up to the appropriate amount of nervousness in pre-op, followed by the caffeine and sleep-deprivation-induced silliness in the surgical waiting room, leading up to the peak of adrenaline when you see the neurosurgeon approaching after the surgery and you hang onto her every word.
“It went great. He’s awake and talking.”
Sigh of relief. Breathe in. Breathe out. It’s over. Sort of.
Then comes the crash.
Like any other withdrawal, the low can be as intense as the high … or, worse. The morning of surgery, I felt remarkably calm. Didn’t cry or anything. I think it was due, in part, to my tendency to keep it together when others need me. Then, when I can sense that they are okay again, I fall apart.
The afternoon and evening following the surgery, I started to feel the after-effects of many weeks of severe stress. My family and I left the hospital to give Garnet some time to rest, and I began to feel antsy and nervous being away from him. I missed my kids who were back at home with my mom. I wanted life to feel orderly and “normal” again. It was anything but.
That night, I couldn’t sleep again. It didn’t help that the couple in the room next to me at the hotel were creating some sort of domestic disturbance, throwing things, shouting and cursing. I finally called the front desk a little after midnight, and eventually Thing 1 and Thing 2 quieted down. But, had they not – believe me – I had my speech all prepared. I was ready to walk next door in my nightgown and pound on their door, spewing hot tears and entirely too much personal information for anyone’s good and demanding, for the love of Pete, that they kindly shut their pie holes.
My fragile emotional state continued the following day as Garnet was discharged and prepared for his first chemo treatment. There were a lot of things that went wrong that day, from a logistical standpoint. It’s all too much to get into. To borrow a phrase from my mother-in-law, it was one “Mell of a hess.” I will just say this: There is a bureaucratic side of cancer that is fraught with insurance, financial and red tape issues that no one should have to deal with when trying to fight for their life. So, that falls under my responsibilities as Garnet’s caretaker. But, I was in no mood to deal with that nonsense the day after his surgery when things should have been going smoothly. At one point, I found myself outside the Cancer Center, sobbing uncontrollably out of sheer exhaustion and frustration.
Eventually, once these peripheral issues were sorted out, Garnet had his first intrathecal chemotherapy treatment. I don’t think I was adequately prepared for what I would see. The physician’s assistant thoroughly cleaned the area of Garnet’s surgical incision, then placed a needle in Garnet’s new port. The PA pulled back the plunger on a syringe attached to the needle and it slowly filled with a clear, slightly pinkish fluid. Garnet’s cerebral spinal fluid. He filled up about a half-dozen tubes of it. I am usually rock-solid when it comes to this stuff, because I have had nearly four years of experience with Garnet’s disease (not to mention, two little boys at home – it takes a lot to gross me out). But, I will admit this made me feel a little woozy. My sister-in-law, who was sitting next to me, grabbed my hand and held on tight as I silently cried through the whole procedure.
Once the appropriate amount of spinal fluid had been removed, the PA injected two chemotherapy drugs into Garnet’s port. He will receive four different drugs in his port on an alternating schedule, two each time. In addition, he’ll receive another chemo drug intravenously into his arm, and he’ll take one by mouth.
Garnet was a rock star throughout his whole first treatment. He acted as if it was nothing more serious than giving blood. But, almost immediately after the infusion, he had to sit down, then race to the bathroom. The PA brought Garnet a pill for his nausea, but it was a pretty rough ride home. Yesterday morning, the nausea revisited him and he got very sick again.
I’m not sure what else to say. This is hard, hard stuff. What a rollercoaster ride this has been. One moment, Garnet seems fine. The next, he’s not. Because of our bond and how much I love him, the same can be said for me. The highs are so high and the lows are so low. Some days, it leaves us all feeling kind of numb.
I am just hopeful that these side effects pass soon and that his chemo does the work it’s intended to do: To kick the crap out of Garnet’s cancer. Nothing would make me happier than to be back to the days of no chemo, good scans and zero excitement. Who would have ever guessed that a quiet, boring, routine kind of life would be the stuff dreams are made of?
I’m with Garnet up in “Phase II Recovery” following his surgery this morning. It’s just before noon and Garnet is up, talking, moving around like normal and just finished a gourmet meal of orange jello. Brain surgery is amazing these days. What would have resulted in weeks of recovery at a rehab hospital years ago is now as simple as outpatient surgery.
Garnet will spend the night here to make sure that everything is okay with his newly implanted device, called an Ommaya Reservoir (for all you medical nerd-types who like to know, like me!). As long as everything looks okay with his surgical site in the morning, he’ll have his first chemo treatment and then be discharged.
If I have more excitement to post, you’ll hear from me. Otherwise, I’ll be here hangin’ with my sweetie.
Just talked with the neurosurgeon (the *only* female neurosurg resident here at Hershey, by the way – go girl power!) and the surgery went off without a hitch! He’s awake and TALKING … which is a BIG deal that is not to be taken for granted, friends. We haven’t seen him yet, but we will as soon as he’s situated in recovery. Thank you for your prayers!!!
The patient was wheeled back just before 9:00.
I came downstairs from the OR and made a beeline for the Starbucks. Coffee as big as my head? Check.
I’m now with my MIL and SIL (mother-in-law and sister-in-law) in the surgical waiting area where we can watch a screen reminiscent of an airplane terminal for updates on his surgery. In the meantime, my SIL and I are cracking jokes and being too loud and highly inappropriate for a hospital waiting area. The things you do to keep sane. :)
P.S. Starbucks is *easily* the best thing about this process.
Good morning, friends!
It’s bright and early here at Penn State Milton S. Hershey Medical Center (that’s a mouthful, huh?!). We arrived at admissions at 6:30 a.m. and Garnet is scheduled to be wheeled into the OR at 9:00 a.m.
For the benefit of my friends who aren’t on Facebook, I’ll try to post some information and pictures on here at the day progresses. You can also check out Garnet’s website. My lovely sister-in-law, Amy (who is really more like a sister), is keeping Garnet’s blog updated while he’s “otherwise occupied”!
Here’s the brave patient in pre-op. Nice socks, eh?! Don’t hate him because he’s beautiful. :)
More later, friends.
We’re gearing up for Garnet’s third brain surgery tomorrow at Hershey Medical Center. I couldn’t decide which necklace to bring, so I guess I’ll bring all three: My mustard seed, which I’ve had since our son Will was a preemie in the NICU; a gift from a dear friend which reminds me that “I am strong” (even when I don’t feel like it); and, a handmade necklace from another friend, rockin’ the gray ribbon for brain cancer and declaring that we’re in this thing to fight. Now … onward.
I have long dreamed of the day when we’d take a family photo that would include four of us. So, our new family picture is seriously a dream come true. Originally, we had planned to take it when Matty was a little older – able to sit independently, and such. But, with Garnet’s surgery planned for next week and aggressive chemo to follow, we decided it would be best to do it sooner.
The kids – even Matty who was winding down with an eye toward bedtime – managed to smile and ham it up for the camera. For Garnet and I, the experience was very raw and emotional.
I remembered back to the last time Garnet and I had professional photos taken, on our wedding day. We’ll celebrate nine years of marriage next month. Oh, how I want to see ten. (Twenty. Thirty…)
There were many tears shed and images captured that express far more than words can muster. A gaze that says, “In sickness and in health.” Smiles that express gratitude that our great longing for another child has been miraculously realized. Tears of tentative hopefulness that this is only one of many family photos to come.
Our lovely photographer, Kelly Brewer, is as generous and gracious as she is talented. You can check out her gorgeous work on her website or over on Facebook. Thank you, Kelly, for this precious gift.
You know that saying, “No news is good news”? If only it was true this time.
I wish I could say that life has been uneventful during the last several weeks I’ve been quiet here on the blog. Unfortunately, that’s not the case. It has been busy, chaotic and tremendously difficult.
On the one hand, we’re loving every minute with our little Matty Bug. He’s a 5-month-old seriously chunky monkey who keeps us smiling and laughing all the time! He’s easily the happiest baby I’ve ever met and is the personification of pure joy. On the other hand, Garnet’s not been well. To borrow a phrase from author/blogger Glennon Doyle Melton, life has been both beautiful and brutal; life is “brutiful.”
The last time I wrote about Garnet’s condition, he had just returned from a scan at Hershey Medical Center which showed that his tumor had gotten a bit smaller. At his next scan in early June, the MRI showed a new spot. UGH. The doctor couldn’t be completely certain that it was new tumor growth, so it was a matter of playing “wait and see.” (I hate that game, by the way.) It was also decided that Garnet would take a much-needed break from his oral chemo, which he had been taking daily for six months.
We followed up last week and the spot was still there. It hadn’t grown, but it hadn’t gone away. It seems that the chemo Garnet has been taking on and off since his diagnosis in 2010 is no longer working. Dammit.
Physically, the disease hasn’t been so kind to Garnet lately. He’s been experiencing swelling in his brain which has caused a host of issues including temporary paralysis of his right side and a great amount of difficulty with his speech. He’s on steroids to manage the symptoms, but – clearly – we’re back in the fight again.
The plan moving forward is more aggressive. Garnet details it all here on his blog. Basically, it involves surgery on August 7 to implant a medical device for receiving infusions directly into his brain and a cocktail of six different chemo agents. (Too bad chemo cocktails aren’t nearly as exciting as, say, Cosmos or Martinis!) We were relieved to find out that the treatment is only twice a month and that most patients tolerate it very well.
This is obviously life-changing for us. But, to be fair, nothing about our family’s experience with brain cancer hasn’t altered our life. This sucks. There’s just no other way to put it.
There was an evening last week when Garnet was physically unable to speak, so I was on the phone with his doctor while simultaneously changing a poopy diaper. The phone was cradled between my head and shoulder, I had a pen tucked under my neck, a dirty wipe in one hand, baby feet in the other and was scrounging around for a piece of paper to write down Garnet’s medication instructions. In that moment, running purely on adrenaline and a prayer, I felt like I was having an out-of-body experience. Is this really our life?!?
Seeing my husband suffer is emotionally devastating. There have been a few occasions recently when he couldn’t even say my name. I simply cannot describe that kind of heartache. Also, for the first time, our son Will is seeing the cruel effects of his dad’s disease. He has been terrified and very confused. In a childlike way, he asked me if there’s a cure for cancer and I had to tell him no.
“So, Daddy’s going to be sick forever??”
“I hope not, buddy.”
My maternal instinct is to want to protect my boys from this cruel world. Still, I believe in being honest with them. Matty, of course, is completely oblivious to what’s going on. Will was 2-years-old when his dad was first diagnosed. This time – at the ripe old age of six! – he sort of understands. One day, I hope both of our boys will know what I know: That their dad, even at his most physically compromised, puts their well-being first. That he still goes to work because he is dedicated, loyal and loves what he does for a living. That he pushes himself and doesn’t give up because he is braver than anyone else I know and loves me and the boys just that much.
I’m really grateful for family, friends, my husband’s co-workers, our neighbors and even strangers who have mobilized, once again, to take care of us. We’re really blessed to have such a wonderful support system. And, Lord knows, we’re going to need some serious support in the weeks and months to come.
Now, let’s saddle up and kick some cancer butt.