Category: Bob

Bob, my tumor

I lied to a little girl the other day

I was haphazardly re-applying eyeliner in the ladies room at Washington Dulles when I heard a small voice beside me; “What happened to your arm?”

Usually when people ask me about the violet line extending from the middle of my hand toward my elbow, I freeze. I could lie (“It was a shark! With really even teeth!”), dismiss (“Long story, no big deal”), defend (“Do you always ask people personal questions in the bathroom?) or answer straight.

It was the worst walking in Wal-Mart in December of 2011, limping and slinged with a large cast… every two aisles some unassuming yet intrusive older man would say ‘What, did you get into a car accident?” or “I bet the other guy looks worse, hardy-har-har!” I should be accustomed to the invasion now – it’s even more awkward when people purposefully don’t mention it until it becomes A THING, that I have to EXPLAIN. Can’t win for losing, basically.

As I worked through my response in just a second, I saw the small voice’s owner out of the corner of my eye. Pivoting on my left foot and inclining my head down, I contemplated the pig-tailed blonde human in front of me. She couldn’t have been more than six, tops, (WHERE WAS HER MOTHER? The mama bear -who i keep buried under boxes of movie trivia- clamored for attention), wore glasses too big for her face and a pink Dora the Explorer top.

My pseudo-niece, Lucy, adores Dora. I didn’t understand, when I was holding her three days out of the hospital, worried I would drop her, that she’d turn into this talkative, curious little girl who pirouettes on command (finishing with a loud “Ta-Da!” and wave of her arms). Few notice, I think, that I hoot and holler way more than the average aunt. Clapping with one hand doesn’t make enough noise for me, since my clapping ran off with my left radius.

I leaned down to the little one, eyeliner in hand, and decided to be honest. “I had a bone tumor in my wrist.” She stared at me for a moment, and I could see her eyes grow larger as she decided how she would respond. In that brief moment, I decided to be dismissive and nonchalant, thinking my truth wasn’t something really appropriate for someone so small. “It’s ok now though, I’m fine. It didn’t even really hurt.” I couldn’t help but lie, looking at Dora-lite. I needed to lie just a little.

Dora-lite, whose eyes had stilled, stepped forward a tiny half step, maybe because she wanted to make sure I could hear her. (There were some loud ladies two sinks over complaining about the size of the bathroom and how most of the restaurants were closed already).

“My friend Billy has a tumor in his brain,” she whispered.

I stepped back, I couldn’t help it. As my hip brushed the front of the sink my mind started working again, harder and faster than before.

“That’s tough, kid. I’m sure he’s going to be just fine though.” I lied. Or I didn’t. And I think that, if things go badly, years from now she’ll hate me for that lie.

She nodded, turned on her heel and walked out the bathroom without casting a backward glance. I turned back to the sink and turned the water on and watched the water splash on my slightly shaking hands, just for a second.

three things

1. i am typing with two hands, finally.

2. i hate it when you meet someone and immediately like them, in that “i-want-to-talk-to-you-some-more-because-i-find-you-very-interesting-and-also-kinda-hot” way, but you have no idea how to make that happen. 

3. I’m working from home today so i don’t infect other people in my office. my cats run out of the room every time i sneeze. 

Day 35: High Tech

Day 35: My new hi-tech accessory

The Exos brace. I’m MCV’s first patient to use one. These are replacing some types of fiberglass casts. “The technology consists of three layers of high tech polymers and foam that when laminated together create a lightweight matrix with features that have multiple benefits for practitioners and their patients. Exos products feature easy to use, clean, waterless application that does not require stockinette or cotton padding. They are simple to remove and do not necessitate the use of messy, loud, often disturbing cast saws. Exos products provide excellent stabilization with superior comfort for greater patient compliance.”

“… the world’s first dry heat, fully customizable, adjustable, reconformable, waterproof splinting, casting and bracing system. ”

(via Exos Corporation – Shaping Technology, Shaping Lives)

Day 31: Bills, Bills, Bills

Guess who received the first of many hospital bills today? Have to be thankful I have insurance, but jeesh. This is going to be a lean holiday season. Hopefully I’ll file my taxes super early and use my refund to pay off the majority of what I’ll owe.

Swollen

I know this is gross but yeah. This is what happens to my foot by 2 pm if i’m walking even a little.

NaBloPoMo Day 28: Swollen

I went into the office for the first day yesterday.  By about 2:00 PM , my right foot was so, so swollen.  I posted a picture yesterday as well. Now I understand why my doctor told me I would not be able to travel until January.

NaBloPoMo Day 25: Hot and Cold

Last night after a lovely meal, Mal and I went to see Breaking Dawn. After that we came home to watch the cat play with the iPad.
unfortunately for me, the rest of my night sucked. Narcotics withdrawal has me wrecked: flu-like symptoms, including nausea, stuffy nose, and, the worst, hot and cold flashes. I couldn’t sleep last night so I slept most of the day. Can’t wait till this is over. I’m down to no nerve pills and half a hydrocodone when the going gets tough, along with a ton of acetemetophin for the actual pain. I’m also taking a ton of calcium and vitamin D to help the bones heal/fuse.
This could be worse. This could be worse. This could be worse.
I know that is true but… Now that i’m not doped up i’m so, so cranky and frustrated and kinda depressed.

NaBloPoMo Day 23: Busy, busy

I worked so hard today. I feel like I did an ok job. I’m still getting back in the swing of things, but I got a contest done and did decent job on my conference call.

Tonight is the night before Thanksgiving, which means it’s basically a high school reunion in Downtown Hampton. I usually LOVE going to Taphouse on “reunion nights,” but tonight … Getting showered and dressed is difficult. I’m pretty committed, because I have friends in town I want to see, but it’s difficult to get motivated after working for nine hours straight. I’m a liitle trepidatious about fielding questions about the sling. “It’s a long story” will have to be sufficient for the majority of people who don’t follow me online, I think. I don’t really want to walk through the whole saga repeatedly all night, you know?

Tomorrow I’ll be posting my annual, typical Thanksgiving post. It’s interesting because I’ve already repeatedly been reminding myself of things I’m thankful for, trying to keep silver linings in mind as I get more and more frustrated with the current state of affairs. I sat in my living room last night, complaining to my roommate about things, but bookending with “I know I should be glad I’m not dying” and “And it will all be over in two months, right? Things will be normal again, one day.”

Perspective is key. I was in the transplant area of the hospital for the first few days after surgery, and that actually helped me remember that things really could be worse. This could have been bone cancer, malignant, metastastic or even in my right wrist instead of my left. I’m surviving and I’m healing and I’ve got amazing doctors and even more amazing friends and family.

NaBloPoMo Day 22: OMG SHOWER

I just took the first full shower I’ve had since surgery. And then I put on fancy pajamas and ate a cheeseburger. I also put on deoderant, moisturizer and hair conditioner. All of these things are important, seriously. I feel almost normal.

NaBloPoMo Day 21: Good news!

Went to the doctor(s) today for my checkup:
Pathologists determined it was definitely a giant cell tumor, which is awesome. That means it wasn’t a sarcoma or a malignant primary cancer. That is what we were hoping for, so yay.

Pathologists ALSO believe we got it all. Instead of “scooping” it out, they removed Bob AND the bone near Bob.

The echocardiogram also came back normal. I had to get an echocardiogram after I had some weird heart arrythmias in post-op.

I’m healing well, and fast. I’m supposed to start taking calcium and vitamin D to speed up the bone growth.

To explain; A surgeon removed Bob while another removed 15 centimeters of my right fibula (small leg bone). The fibula was placed into my arm, about halfway up, extending over my wrist and into my hand. The bones in my wrist are too small to do anything with, so we had to graft further up. The means I will lose mobility in my wrist, but it will be super strong. Basically, I won’t be able to “Vogue.”

I had two doctors, HotDoc and CockyDoc. HotDoc is the orthopedic oncologist. CockyDoc is the hand specialist. CockyDoc is obviously the guy that’s so good at what he does, he doesn’t really need to be a people person. HotDoc looks like Seth Cohen with a medical degree.

CockyDoc was super thrilled about how well the surgery went. He showed me x-rays (I’ll post later) and was really pleased to be able to see on the x-ray a specific clamp that’s holding some blood vessels together. He also gave me great news; I can get my leg wet! Which means I can shower (Thank God. It’s so difficult to bathe when you can’t get you left arm or right leg wet). I also got my stitches out (I forgot to ask how many) and i got a smaller splint. It’s about half as heavy as the previous one. I get my hard cast in two weeks.

HotDoc gave lots of good news, stated above. Giant cell rumors only recur in about ten percent of cases, so hopefully this will be the last we’ll see of him. I won’t have to see HotDoc that often (I see him next after the first of the year).

Oh ALSO, HotDoc totally had pictures of Bob/my open wrist ON HIS BLACKBERRY. Which was kind of hilarious. Interestingly enough, giant cell rumors are basically jelly (that destroy bone, go figure). That photo was pretty gross, so I’ll refrain from sharing.

I’ll see CockyDoc in two weeks to hopefully get my smaller hard cast. If I keep working my leg and fingers I may even be able to avoid physical therapy.

Good news all around. Whew. In two months I should be out of a cast and all this will be behind me.

NaBloPoMo Day 20: Hugs.

I put on pants AND a bra today (along with a shirt and shoes, obvi) and ventured out of the house. Mal took me downtown and we saw some of my friends and had dinner, which was lovely. One thing I noticed, that I hadn’t considered; hugging people with only one arm is really unsatisfying. There were a few hugs tonight that were distinctly disappointing, I guess because I’d like nothing more than to truly wrap my arms around certain people and hold on for a bit. .

To update: Those of you who read about Bob know the original plan was to remove the tumor and replace it with a cadaver bone. A few days before surgery we decided instead to remove my fibula from one of my legs (originally we thought left, but it ended up being the right). The fibula is the smaller bone in the lower half of the leg. Also, apparently my bones are very small, but strong. The bones in my wrist are so small, in fact, that it was impossible to fuse the small bones on the edge of my wrist to this new bone, so the fibula bone actually extends into the back of my hand. This means I won’t be able to bend the wrist; no walking like an Egyptian, for example.

Surgery was Thursday, Nov. 10, and took about eight hours. I was in recovery for five, unfortunately, because I had some irregular arrythmias following surgery. Also, I apparently went buck in post-op; flailed my arms, spoke gibberish, didn’t know where I was, etc.

The following few days were weird. The food was awful, i couldn’t get out of bed, I was really, really high, etc. The first morning was especially bad because I was by myself (my mom overslept) and in a lot of pain and needed the nurses to shift my arm into a more comfortable position. After about two hours my actual doctor came in to check on me and fixed everything in like, two minutes.
After that, I slowly healed, enough to get out of bed and eventually be discharged.
One amusing anecdote; I got a echocardiogram and I told the guy who performed the procedure that I would mention him on the blog. His name is Matt, he’s (I assume) in his 30s, has three children and has a twin brother who ALSO has three kids. They’re basically racing for the biggest family. They come from a big family so they’re just popping them out. Also, Matt is attending VCU to pick up another degree, this one in English. I found all this out while he was rubbing the echo sensor all over and under my breast, basically. We bonded.

NaBloPoMo Day 19: Reborn

Seriously, washing my hair in the kitchen sink was easier than I thought, and having clean hair makes me feel so, so much better. It made me think of baptism, seriously. I can’t wait until I can actually shower.

NaBloPoMo Day 18: Technology woes

the last day in the hospital I dropped my phone and shattered my screen. I’ve probably dropped that phone a hundred times with no repercussions.
So besides the fact that my phone’s screen is shattered, it won’t charge. It will for a few minutes, then, nothing. So frustrating.

NaBloPoMo, Day 10: Bob is gone!

Posting late today because I was on too many drugs to function, sorry. Dilaudid, which was what I received, is apparently STRONGER than morphine. I got the good drugs! (Apparently so good that while I was in recovery in the beginning, the nurses asked me where I was and I said “Entercom.” Shout out to my homies 🙂 Also, they asked me where I was from and I said “feathers.”)

Guess what, ya’ll? We got that bastard. I am still in the recovery room, unfortunately, because I was having heart arrythmias, but I’m about to move to a room. I haven’t actually spoken to my doctors, but I will in the morning.

Thank you all so much for the well-wishes. I can’t begin to describe how much they are appreciated.

I’ll keep updating. Thanks!

Nablopomo Day Six: Richmond, again

Back in Richmond tonight, because i have a morning appointment tomorrow with my second surgeon. So long as everything goes well (I actually don’t know what we’re doing tomorrow, besides meeting) I’ll be going in for surgery on Thursday. I’ll be in the hospital until Sunday or possibly Monday, so long as I don’t get any sort of infection. 

I just want to fast forward to January, honestly. 

So here’s the deal:

On Thursday, I’ll be put under and one surgeon will open up my arm. They’ll do a biopsy of Bob immediately, while I’m under. As long as Bob is what they think, a giant cell tumor, they’ll proceed.

If the biopsy indicates Bob is something else (primary bone cancer, for instance), they’ll stop and close me up. Then we’ll start making plans for chemotherapy.

My doctor seems pretty confident Bob is a giant cell tumor. I thought he was definitely, but apparently there is a chance he is not. However, he’s got smooth sides, which is indicative of a giant cell tumor.

So, as long as Bob’s what we think he is, the second surgeon will begin working on my leg to remove part of my fibula, the small bone, of my left leg. I was told they’ll take a large portion of the bone, i don’t know how much. As surgeon #2 is doing that, surgeon #1 will be removing Bob and the surrounding bone. #1 will be going into my arm from two sides, the top and bottom, to completely remove Bob. They’ll then insert the fibula and do their magic (this part is a little unclear, I’ll get more info tomorrow). They’re going to use some screws and plates to secure the bone in place. 

According to Doc#1, the fibula only carries about 5% of my weight, which is why they can remove it without any big repercussions. 

I’ll be in the hospital for a few days, then i’ll go home. i should be able to walk out of the hospital, but *edit* I’ve been told not to work for a week and not to travel until after January 1. 

I’m going to be in a cast 2-3 months, but i don’t know if i’ll be put in a cast immediately, considering they’ll be watching my arm closely. I’ll be coming back to Richmond a lot initially, and then less frequently as time goes on. 

More updates tomorrow as things get clearer. 

NaBloPoMo Day Two: Bargaining, part one

I didn’t know I’d have to take of my pants on Monday.

I sat in a hard metal chair with tears streaming down my face as the xray tech looked at my chest scans and readied her doodads for the next two scans (wrist and leg).

I was wishing for clear lung scans. If Bob had metasticized to my lungs, we’d have to stop, and start chemo. But if my scans were clear, we could proceed with the new plan, and we’d be in surgery within two weeks.

If you talk to God our some higher power or force, and have ever had something make you really, truly afraid or powerless, you know about bargaining. I explained it (my version, at least) to my mom on the drive home. Yes, you’re making sometimes-empty promises, but you’re also identifying your own shortcomings. It’s one of the truest forms of self reflection there is, I think.

I’m glad I didn’t have any major things to promise. I can say I’ll be better in general, but I’ve already got the major stuff covered.

Nablopomo Day One: Ouch

I had a great blog post in mind: I’d explain what happened at the doctor’s office in Richmond and our next steps. But I have guests coming to my house and I haven’t showered yet (I worked from home today) and when I was trying to hang purses in the the guest room, a purse fell and I tried to catch it with my bad hand. Then came the excruciating pain. My xray monday showed that the tumor had grown faster than we anticipated and had completely finished working its way through my bone. I basically just snapped the fragments left. But yay for vicodin, right? I’ll post more tomorrow and in the next few days, but here’s the gist: no tumors in lungs, plan to do surgery SOON. No zombie arm, we’re going to take a bone from my leg instead.

Meet Bob, my tumor.

Meet Bob. Bob is a giant cell tumor.

(For a week I thought Bob was going to kill me. My week sucked. Things are slightly better now)

After two weeks of physical therapy, on Wednesday, Oct. 19 I was referred to an orthopedic specialist. The orthopedic specialist said, at first (before the Xray) “This could be tendonitis, or rheumatoid arthritis. Let’s get an XRay to determine.” The doctor walked into the exam room about twenty minutes later and said “Come with me.” After showing me the XRay, he said Bob was either an infection or a tumor. Regardless, this was bad news. He said it was probably a tumor, but couldn’t tell me if it was benign or malignant or give me a prognosis.

On Friday, I had an MRI. Today I was told I have what is called a giant cell tumor. One person in one million people per year (approximately) is diagnosed with this. The tumor is aggressive and destructive, so it’s not “benign,” in terms of the regular definition, but there is good-ish news: The tumor is almost definitely primary, so It is not a metastatic event from another area of cancer, which means it’s not like I have breast cancer and it moved into my wrist to throw a party.

One in a million. For real. I have no family of history of cancer/tumors and no symptoms of cancer, besides the tumor. I have never been more thrilled to be overweight; if I had been losing weight, I’d be worried. This tumor is more than likely slow-growing, which means it’s been around for maybe a year. It has destroyed my bone. The brief patch of bone that is left is compromised as well, and is not large enough to salvage. It is unlikely that this tumor will metasticize to another part of my body. In about 5% of these cases, the tumor metasticizes to the lungs; in 75% of those cases, the lung tumors are removed and everything is fine.

There are, according to my doctor, two orthopedic oncologists in Virginia. I’m going to see one on Monday. From what we can determine, the ultimate result will be removal of the tumor and the compromised bone, and a cadaver’s bone will be installed in my arm.

**Take a moment to process the fact that I’m going to have a dead guy’s bone in my arm. ZOMBIE AMBER!!! For real though, zombies are my jam and win me Halloween costume contests.**

What’s odd is this is not an “emergency,” so to speak. Because they can’t get in there to “save” the bone (since it’s already beyond repair), there isn’t really any immediacy to the problem. It’s slow-growing and is just chomping away at the bone, the hungry bastard. My nerves are not compromised and my fingers are working. I’m in pain, but yay for Vicodin, right?

So, to answer a few questions: Yep, my wrist hurts. I’m on painkillers. A lot of them, actually. We don’t have a time frame for what’s going to happen. A lot of this will depend on finding a cadaver’s bone that is a match. I’ve not been told to do anything different. I’m obviously going to try to take better care of myself, in preparation for major surgery in the future. It’s about an 8 hour thing, and recovery (I imagine) is going to be a bitch. But I can work, travel for work, dance around like a dummy, etc. No big deal.

No one has mentioned the idea of losing my arm/hand, so I’m not going to consider that an option.

Nothing causes this. This is not associated with any cancer, trauma or lifestyle choice. This is literally me winning the worst lottery in the world. Well, maybe not the worst: I’m not going to die from this. It’s going to suck and it’s going to be painful, but I’ll get through it, and I’ll have a super-awesome zombie arm, too.

I’m mad, of course. I’m angry about little things, like I can’t dry my hair and I can’t do dishes/housework, unless it’s one-handed. I’m in constant pain; it’s kinda like I have a migraine in my wrist that never goes away. I’m mad that copays are going to drain my bank account and that I’m going to need more sweatpants and fewer zip-up hoodies. I’m especially mad that my mom has cried, that my friends are worried, that I’ve been short-tempered and distracted.

I hate that I, for the past week, have wondered how long I am going to be here.

So, silver linings: Not going to die from this.

Zombie arm, which is just plain cool.

I get to play the tumor card. Oh you had a bad day? I’ve got a tumor, bitch. Beat that.

No dish duty for a while. My right hand/arm is getting super strong and dexterous; I can shampoo and condition my hair with one hand, no problem.

I don’t have a boyfriend, husband or kids. THANK THE LORD. I can’t imagine putting a significant other through this, and I would be even more upset if I had kids to worry about. (Yes, it sucks that Mal, my BFF and roommate, has to deal with this. She’s awesome and you should buy her a drink next time you see her).

Gallows humor, ya’ll. My coworker said to me yesterday “Hey do you need a hand with that?” and I laughed so hard I almost cried. To my mom,  I say “God, my wrist is killing me” nonchalantly, and a minute later say “Whoops, that was awkward.”

I’m LITERALLY one in a million. Great pickup line, right? I’m going to get all the men.

After all this is over and i have a huge scar, I plan on getting a full sleeve tattoo. I’ve always wanted one, and it’s better than an ugly scar. That’s a lot of space, so i’ll probably include: Peacocks, penguins, typewriters, a Facebook logo, my grandparents’ initials, a newspaper, cats, an ee cummings quote, the Deathly Hallows, a stake, and some Stephen King imagery. Awesome, right? I’m taking suggestions, so drop me a line if you think I’m forgetting something important.

My friends and family are amazing. Not only do I appreciate them (you, since you’re reading this), I’ve realized how lucky I am to have people that really care about me. I’m sorry if you’re worried and I hope I don’t ruin any plans we’ve made, but I’m glad I’m going to be around, with you, for a while.

To close: Fuck Bob. Fuck Bob and fuck tumors. Fuck the odds and fuck the bad luck. I’m going to be fine and maybe something good will come of this (besides the zombie arm). If anything, this has already shown me how much I want to be here.

The past week made me consider life in general, and if I could “die happy,” for lack of a better phrase. I may not have done all I wanted, but I’m satisfied in my choices. I feel like I’ve been kind and good and smart, and now, I’ll be even better.

Thanks for all your queries, kind words and support. In a year this will be behind me, and I’ll probably be sporting an awesome tattoo and even stronger friendships than I have now. It’ll be OK, I promise.

*Update: My surgery happened sooner rather than later (Nov. 10), went well and they got the whole bastard. They also decided to take bone from my leg. Apparently you don’t need your fibula. I wrote a blog post every day in November.   I’m healing well and happy to have gotten past most of this. I’m starting physical therapy on Dec. 23. My scars aren’t as bad as I thought they’d be.