Driving Me A Little Mad

There are some days where I really hate the fact that I can’t drive. This week, there are a few such days.

Monday, the dog managed to tear another toenail and needed to get to the vet. All of my usual kind & generous drivers were otherwise engaged. I was prepared to call a taxi – which seems ridiculous to me since I have a perfectly good car in the driveway and the keys to use it. My hero – as usual – became available just in time to drive us. THEN we found out he needed to be sedated and it would take an hour or longer. We went to lunch and did some early Christmas shopping while the dog was having the meanest kind of pedicure. While my designated driver didn’t have anywhere to be urgently, I still felt like a total moocher asking her to schlep me (and the dog) around.

Tuesday, I have a desperately needed appointment with my chiropractor. It’s cold and there’s rain in the forecast. I likely have to ride my bike to get there. This shows how desperate I am to have my pelvis and sacrum realigned. This is pain unrelated to my brain (hey, that rhymed!) Maybe I should just figure out the bus lines.

Wednesday, I go to Stanford for my vaccine shots. This process is hours long and since I can’t ride my bike to Stanford, someone has to take me. My hero/neighbor has volunteered for the task. She’s never taken me to these appointments (usually on kid duty), so she’s in for an experience. I’ll be stuck with needles, blood will be drawn, questionnaires will be completed, and waiting with slightly creepy hand ice packs will occur. She’s been present for 2 of my 3 seizure episodes, so hopefully this will be like seeing the lighter side of brain cancer.

Then we need to take the dog back to the vet to have his bandage removed and his wound checked. My husband can help with that task, however.

Thursday and Friday, there’s stuff I’m doing but I can’t remember what right now.

The ugly weather is beginning, so additional driving needs will begin to pile up. There will be occasions where I’ll have to suck it up and ride in the rain. I have a bright purple rain suit for camping, so if you think you see Barney the Dinosaur riding a bike down the street, it’s just me. Christmas vacation isn’t too far away either, so I’m currently accepting ideas on how to keep 2 kids who like to push each other’s buttons busy and having fun for 2 weeks – while at home.

Now that you all know when I’ll be out of the house this week and I’ve vented about my unwelcome dependency on others and hinted at my cabin fever…

The point is that not being able to drive sucks. BUT in the spirit of full disclosure, if my kids get sick or injured and need to go to the doctor or emergency room, I WILL drive with only minor hesitation about breaking the rules. In the meantime, I’ll continue to feel incredibly grateful for the kindness of my neighbors and friends for taking my kids to school every morning, taking me to do grocery shopping or run errands, driving me the vet for my dog with brittle nails, and for delivering me to my ever-present trips to Stanford. I’ll also continue to temper my feelings of guilt for asking so much of them. Fingers crossed that I’ll have driving privileges back in January. I figure if I make it through the stress of the holidays with no seizures, it’s proof that I’m invincible – or at least that my meds are working.

 

The Alternative Anniversary

My mother-in-law thinks that we should be celebrating my one year anniversary today since it’s been one year since my tumor was removed (instead of discovered). Who am I to argue with that?! Any excuse for a party.

I said most of what I wanted to say about surviving a year after diagnosis in my last post, so to commemorate this alternative anniversary, I’ll focus on some of the highlights of the week I spent at Stanford after learning about the ‘beast’ and my experience (though perhaps vague) with brain surgery. It’s interesting what I remember when I look back a year later. The people who cared for me stand out the most – probably because they helped me feel strong, safe, and reassured that I was going to be fine. It never occurred to me during that week that I wasn’t going to be fine, that something could have gone terribly wrong, that I could have died. But maybe it was just the drugs they pumped into me during my stay…who knows.

Coincidentally, today is Brain Tumor Thursday (as is every Thursday.) The social media community of brain tumor survivors, caregivers, and loved ones post information about brain tumors (benign or malignant), research, treatment, facts and personal experiences. We’re trying to educate and raise awareness while offering support for each other. It’s an uphill battle, though – we don’t yet have major sponsorship or color campaigns even though brain tumors can often be more deadly and devastating to those who have them than other kinds of tumors/cancer (I’m not belittling the need for awareness and funding for other types of cancer, just observing the disparity in research, funding and awareness.)  #BrainTumorThursday, #btsm

One year ago TODAY, I had a craniotomy. In a million years, I’d never have imagined that someone would drill holes in and take a saw to my skull to be able to remove a clump of unwelcome cells from my brain (~4 cm worth of cells, to be moderately precise.)

While the days between Oct. 7 and Oct. 10 of 2012 are a little foggy – thanks to postictal haze, drugs, and that unwelcome mass pushing from my left frontal lobe into my right frontal lobe, here’s what I remember…

Hospital food – as a vegan, options are limited and are usually Indian oriented. I say ‘oriented’ because they claim this food was Indian, but it barely resembled the delicious food my Indian friends cook. This is where my weight loss began and even if I LOVED being in the hospital otherwise, the food would have motivated me to do what I needed to be released.

Nurse rotation – we had some amazing nurses taking care of us. I must have had my vital signs taken a thousand times during my stay at Stanford that week. Not to mention the blood draws, the MRIs, the CAT scans…and probably a few other things I don’t remember. But the nurses were amazing – all of them, even though they had to wake me up every couple of hours to make sure I was still breathing, didn’t have a fever, and that my blood pressure was still normally low. They also gave me some lovely drugs, so there was that bonus.

TV and Movies – during the down time while we waited for surgery, we watched a lot of TV and movies. As an example of my mental fog, I remember starting to watch Rango, but I don’t remember actually watching it (though my husband tells me I was awake and alert). This is in no way a review of the movie, I promise.

IV lines – I had at least a dozen over that week for various reasons and they left bruises. The worst, however, was the arterial line placed just before my surgery by a resident anesthesiologist.  It took a few attempts, hurt like a bitch, and left a bruise that lasted for weeks. They said my face would bruise badly, surprisingly it didn’t…but that arterial line bruise more than made up for it.

Blood – If you aren’t aware, your scalp will bleed profusely when cut. I had a 6 inch incision – from above my left ear to the top of my head – and my face was pulled back from my skull during surgery. Gross, but true. Well, turns out that bleeds a LOT. I came out of surgery with ~35 stitches and hair crusty with blood. I looked like a macabre medusa. I don’t think anyone took a picture…sorry. I don’t think anyone wanted to remember. One of those awesome nurses I mentioned helped to wash that blood out of my hair BEFORE my kids came to see me after I left the ICU. I am forever grateful to her for helping to spare my children from that image of their mom. Aside from my blood covered head, to give you an idea of the quantity of blood ‘donated’ during surgery, I was swabbing it out of my left ear for weeks after surgery.

Doctors, specialists, residents, medical students – Stanford is a teaching hospital, which means I was a learning opportunity. Rounds – morning, noon and evening – included a gaggle of people. You get used to repeating yourself and losing all sense of privacy – lying in a hospital bed in front of 5-10 people asking questions, looking at me as though I weren’t really there. One of the residents who DID notice I was there and was incredibly kind was responsible for shaving little spots on my head to attach lifesaver like stickers that would help in the MRI guided surgery. He did way more, I’m sure, but that’s what I remember him doing…coming in with a razor and ushering in my year of weird hair.

Lifesaver face

The Operating Room – Again – amazing nurses. The OR was FREEZING. Even with a sedative, the panic started to set in once I was wheeled into the OR. The nurse got me 2-3 more warm blankets (one benefit of hospitals is they keep blankets in a warmer) and sat close, holding my hand and talking in a calm, reassuring voice until I was sleeping, oblivious to the drills, saws and scalpels. Unlike so many neurosurgery patients, I didn’t need to be awake for surgery (thank goodness.) 4ish hours later it was over and I was taken to the ICU to recover.

ICU – Coming to out of anesthesia can be an unpleasant experience if you’ve never done it. This time, however, wasn’t so bad – probably because I was happily drugged up for the pain. I remember opening my eyes, and seeing a nurse at another patient’s bed – she smiled at me and gave me a little wave. That was it. That smile and wave will forever be etched in my brain – I was alive and well. If I wasn’t, she would have been in my face and certainly not smiling. She also bent the rules a little to allow my husband to stay with me and let me sleep for longer periods of time.

The next morning I was moved back to a regular room – I lucked out with private rooms my whole staycation at Stanford, which meant I had some level of privacy and quiet, allowing me to sleep better and recover faster. There were more tests, more doctors, residents, students and nurses. There was more bad hospital food, flowers from loved ones, short visits from family and close friends, and slow walks around the ward in my desperate attempt to prove I was well enough to get the hell out of there – which I did on Oct. 12.

But before we left, we were told that I had a stage 4 Glioblastoma Multiforme of the giant cell variety. The neurosurgeon said he felt confident he got it all, but there were no guarantees because it was not encapsulated. I would require radiation and chemotherapy and we met my Neuro-oncologist for the first time. We officially entered the world of brain cancer – but didn’t fully get just how serious it was until our post-surgery appointment with the neurosurgeon when he told me this tumor would likely come back and would kill me – it was just a matter of when. Well, I’m not dead yet and I’m still fighting like mad.

Given all that could have gone wrong that week and after, I really was very lucky. I had no post-operative complications or infections. I didn’t have any reactions to medication (until later). I didn’t have any major physical disabilities occur because of the tumor or surgery. Most importantly, I had a strong advocate by my side at all times and an incredible team of nurses and doctors taking care of me.

That tumor has yet to return and with any luck, I won’t have to repeat this experience ever again.

I think my mother-in-law is right – this alternative anniversary is also a day worth celebrating.

It’s A Platelet Miracle…OK, Not Really

I drove to Stanford today to visit the vampires. It took me 5 times longer to drive there than to have my blood drawn. I got stuck behind a newbie to the Cancer Center and had to patiently wait while he figured out how the valet parking worked – stopping to ask the attendants along the way from one side of the driveway to the other. I took a deep breath and tried to understand the anxiety and confusion he must be feeling.  No one wants to visit the Cancer Center, let alone deal with weird parking practices while the new hospital is under construction. I’ve been at it a lot longer and have had time to sort it all out, expecting the chaos and backup and friendly attendants patiently directing confused drivers every day, all day long.  But I digress from my minor ‘miracle’…

Drum roll, please.

My count is up to 111. Ok, not so miraculous (reminder that the lowest end of ‘normal’ is 150), but it’s over 100. Technically, that means I can start my next, and possibly last, round of chemo this weekend. I’m still waiting for the Dr. to give me the go ahead before it’s set in stone, however.

I’m starting to embrace the idea of not putting toxins into my body each month (or so.) Not having chemo brain might be kind of awesome – I may write more, sew more, cook more…create more in general. I’ll have more energy, less fatigue. I’ll think more clearly and perhaps spend less time retracing my steps trying to remember why I went into one room or another, only to forget I was retracing my steps when I walk into the original room. I’m thinking I’ll have to rewash at least 50% less loads of laundry I’ve forgotten in the washing machine. Maybe I’ll even be able to sit in a restaurant with ambient noise AND music and not get exhausted in 30 minutes!  Maybe I can’t blame the chemo on all of my issues – the tumor, cancer, a craniotomy, months of treatment, and some of my own high levels of distractibility should take some of the blame I suppose. But, I can’t help think that there may be more days of productivity and inspiration ahead.

Today, I saw more stories of survival than loss. The skies were blue and the sun was warm. We got the chance to visit with new friends from the Northeast. The dog met new doggy friends and saw a few squirrels. The kids got along surprisingly well, even with an abundance of energy.  I had a lovely date with my husband last night (I know, not technically today, but let it slide, ok?)

All in all, it was a good day.