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Rebecca’s Story

OMG. Skull bone surgery is so "last year." This year I'm just doing regular head scans and a hysterectomy.

At the end of February, I had a severe headache on the left side of my head which lasted for seven days. Nothing seemed to relieve the pain so I contacted my naturopath. Though I believed the pain to be muscular, she ordered a CT scan just to be safe.

I had the CT scan of my head on Feb. 28th. The results showed nothing which would have contributed to my headache. (I still think it was muscular.) However, the CT showed a tumor behind my left eye, in the zygoma bone of the sphenoid region of my skull.

The next day I had an MRI to get a more detailed picture of what was going on. The radiologist recommended that I get a biopsy since it was still not identifiable.

My ND gave me reference to a highly regarded neurosurgeon on the Eastside, but I called 4 times in a week, leaving 2 messages and no one called me back. They just kept sending me to voicemail. This made me very angry and upset so I did some research and found a different neurosurgeon, this time in Seattle.

I asked my ND to send me to Swedish Neuroscience Institute instead. She apologized for the previous referral (it was the first time she'd ever needed to refer someone to a neurosurgeon) and she took him off her list. A week later, they finally called me back and I told them "no thanks." That office would've been more convenient, but I didn't feel comfortable with them, just ticked off.

I got in to see Dr. Sarah Jost (pronounced Yost, rhyming with "host") the next week. She suggested we may be able to get a biopsy using CT-guided radiology and took my case to the Tumor Board at Swedish the following Monday. However, the concensus was that the location was too risky for a needle biopsy, even with the CT-guidance, so we went with Plan B.

Over the next two weeks, I had a CT scan of my chest, abdomen and pelvic area. The following Wednesday, I was scheduled for a bone scan, but the scheduler put me down for the wrong test. They caught it before I was scanned but it was annoying and frustrating.

I got in for the correct bone scan the next day. This was a nuclear medicine scan that highlights areas of excelerated growth in bones. They use it to find breaks, tumors and the like.

Jake and I saw Dr. Jost again Monday, April11th. She said that the body CT scan and the bone scan did not show other areas of significance,  however....(there always seems to be a but or a however lately) the orignal tumor they were concerned about did show up on the bone scan.

This means it is metabolically active, so it's up to something. The doctor said I didn't need surgery tomorrow or anything but she also didn't want to wait around for 6 weeks to watch and wait on it due to its close proximity to my brain and left eye orbit muscles.

I am tentatively scheduled for surgery on Friday, April 22nd. Dr. Jost wants to remove it if possible as well as identify it. It could take up to a week after the surgery before they know what it is, depending on what type of thing they find in there. So I will probably be out of the hospital before we know what we're dealing with.

My mom is flying out to take care of me and hang out with Amelie while I am recovering. I have some awesome friends out here who have been watching Amelie while I've been driving to Seattle to get my scans and tests and all the doctor appts. (Thank you, Deb!) Jake has been able to move his schedule around to help accomodate my appointments as well; his work people are being very helpful.

I am heading to Seattle again this Friday to meet with the surgeon's nurses to answer questions and help prep me for the surgery. I will be getting another head CT scan that day plus some blood work. Then Sunday, I will go again to have some special sort of MRI that will help the neurosurgeon map my head using some sort of "stealth" technology. (Yeah, they really call it that.)

I will have the surgery done in Seattle rather than closer to home because they need special equipment that is only available in the city. Kind of handy living in a large metro area sometimes even if I do have to cross the bridge and pay for parking. Most likely I will be in the hospital over Easter.

While I am not thrilled about having surgery, I am very relieved that the scans didn't show any other tumors. In the mean time I am trying to prep for 2-4 weeks of down time, which is a little difficult since we homeschool, but I have a pretty good support system in place. Oh, and I will end up having part of my head shaved so I may have a punk hairstyle for awhile.

Latest Journal Update

Home from hospital; trip to urgent care

I was released from Evergreen Wednesday afternoon after lunch. I was hungry and had already ordered some lunch. I have to say the food is better over at Swedish Cherry Hill, though I was happy to find that the mashed potatoes and gravy were dairy-free. (Dairy food make me feel sick.)

A friend came over with her kids and watched Miss A while Jake helped me get packed up and discharged from the hospital. She even cleaned my kitchen - thank you, C!! Miss A had a great time playing with friends. And as a bonus, I got to play a game of Phase Ten Dice with C when I got home.

I was glad to be home, but I was on strong enough pain meds that I don't really remember much else from that day. Thursday, I noticed I had a very red, scratched up looking rash on my chest, but Jake said he noticed it Wednesday evening. I called the doc's office and spoke with the nurse who spoke with the doc and got back to me. They didn't think the rash was from a systemic reaction to any meds and suggested I try some cortisone cream on it. I was beginning to feel a bit shaky by evening.

By Friday morning, I was feeling a little better though the red rash looked the same. I took my pain meds and the extra med for itching/nausea/anxiety/pain management enhancement. This stuff is supposed to do just about everything except laundry and dishes. Withing 30 minutes, I got very shaky again; I had dry mouth and the tremor seemed to start in my core. I did not have a fever but I was shaking like I had one. This made me very nervous; it seemed to be getting worse the longer I was out of the hospital, so I called the doctor's office back again.

This time my doc and his nurse were unavailable but his partner's nurse called me back. She suggested I just try not taking the pain med and said she'd talk with the other doc and then call me back. When she called back, she told me they had decided I needed to go to the Urgent Care to get checked out. Great. They wanted to determine if I had an infection or a medication reaction and they had no appointments available that day.

Thankfully, my friend was coming over to visit again so Miss A stayed with her and the kids played while Jake took me to the Woodvinville Urgent Care. Friday afternoon just after lunchtime seems to be a good time to go; I was the only one in the waiting area! Somehow, we still had to wait quite a while (the entire trip took two hours), but at least I wasn't in a crowded room full of people with stomach bugs and strep. I tend to be a bit paranoid about germs. It is one of my OCD things, but I swear I once caught a bad flu at an urgent care while waiting for hours just to have someone check my toe. I feel justified in my paranoia on this one.

As I waited, my meds began to wear off and my symptoms of shakiness and feeling "not right" and nervousness began to wear off. Unfortunately, so did the pain relief; I got very grouchy and had to try hard not to snap at Jake or the staff.

We finally got into a room and I saw a doc about 10 minutes later. She looked at my rash and determined it was probably an allergic reaction to adhesive tape used during the draping/sterilization prep for my surgery. I had listed adhesive tape as an allergy but I guess this area was especially sensitive. It is very red - not pink - it is red, like a damned Valentine decoration. A very creepy Valentine decoration. The doctor was sympathetic and prescribed some cream for me to use on it. It looks worse than it feels, but I am trying hard not to scratch it. I have since noticed another irritated spot near one of my incisions from where the clear adhesive patch was over the gauze. This one is just pink and looks like what I get from wearing a Band-Aid. I guess I should have taken it off a little earlier. My whole abdomen is dry and itchy; I think it must be a bit of irritation from whatever agent they used to clean the area before my procedure.

The doctor also said I had textbook signs of being unable to tolerate the  my pain medication. It was a synthetic morphine pain medicine and apparently, we just don't get along. I felt very agitated, anxious and extremely shaky. This is the same reason I don't ever use Vicodin; it turns me into a complete psycho. The urgent care doctor gave me a new prescription for pain management and disposed of my previous medication for me. We stopped by the pharmacy on the way home to get my new meds and some coffee. By this time, I was getting to be in quite a lot of pain. It starts out as a heavy feeling in my abdomen and then starts to ache, with twinges of sharp pain in various places. I was really glad to get home.

Since then, I have been doing relatively well. The pain has been tolerable, although I haven't been doing anything much, aside from walking through the house a bit. I am supposed to get up and walk, but it was snowing outside today, so I didn't go out. Walking inside is OK, too; I am not up for power walks at this point anyway.

My parents left MT to come out and visit and help us out. Dad is going to fix a fence/gate that's about to fall over. Mom is going to help me out and they'll both help with some driving since Jake is going back to work (from home) this week but I am not allowed to drive yet.

The weather forecast was getting nasty, so Mom and Dad left a bit early. They stayed over in Moses Lake, WA last night. I was impressed with how far they got, but I guess the roads were pretty good. When they got up this morning, they weren't sure if they could get here or not because Snoqualmie Pass looked like a mess. Jake and I have driven over Snoqualmie in horrible weather before - one
time even spending the night in our car with our dog on I-90 because it closed by the
time we got to the top of the pass. I told Dad to make sure they had plenty of snacks and water on hand because having only spray cheese and a few crackers with a half bottle of water sucks. (Ask me how I know....and I don't even like spray cheese.)

Luckily, Mom and Dad made it OK and got to their hotel. We will see them tomorrow after they rest up. Miss A is very excited about Grandma and Grandpa coming to visit. She's also excited that they are bringing their little dog.

I am hoping to get a chance to play Scrabble and Bananagrams with Mom. Lately, I have been playing WordFeud online with friends. If you play WordFeud online and want to play with me, my user name is DancingPopcorn. I would love to get some more games going, but prefer to play with people I know. Thanks.