Creeky Wheels

Tuesday morning my lungs started to hurt. It felt like an elephant was sitting on my chest and I couldn't quite get enough breath in. One of the potential side effects of Gleevec is fluid in the lungs, so of course I start worrying that my lungs are filling up with fluid. This persisted and was joined by chest pain on Wednesday evening, so I finally drove my stubborn ass into my GP's office on Thursday morning.

He checked my spleen, drew blood, did an EKG and listened to my lungs. Nothing seemed out of whack. To be safe he shoehorned me in for a CT Scan at Good Samaritan hospital that afternoon to make sure that my lungs were empty, there was no fluid around my heart and I didn't have any clots in my chest or lungs.

I drove over to hospital and tried to check in. They'd never heard of me. As they're on the phone to my GP trying to get things straightened out I joked to the receptionist that I was probably at the wrong hospital. She says "You're supposed to be at the hospital?" I tell her "Yes, at Good Sam." She laughs and informs me that I'm at a private radiology clinic and the hospital is another 1/4 mile down the road. Feeling a little stupid I make my way over to the actual hospital with my proverbial tail between my legs.

Filling the radiology admitting form out I got a little emotional. It lists a set of conditions that the department might need to know about before scanning you. I had to check the box that says I have cancer. I've never had to check "Yes" for any of those little boxes before. It's strange how such small things force you to think about the cancer and make it more real.

This was my first CT Scan. It's a large donut shaped machine with a movable bed that you lie on which moves you back and forth through the donut hole. They hook you up to an IV (my second stab of the day, now I have holes in both arms) and pump you full of saline. The machine whirs into action and you alternate between holding your breath and breathing normally as they slide you back and forth through the donut.

During the scan they injected me through the IV with Iodine to provide contrast. I was told it would burn and give me hot flashes. I hear the IV gurgle a bit as the Iodine works it's way into my blood stream but feel nothing. Suddenly I'm literally wetting my pants. I think to myself that there's no way they pushed that much fluid into me. When the nurse comes back into the room I sheepishly tell her I think I wet myself. She smiles kindly and says not to worry, it was just a feeling caused by the Iodine. Sometimes it can give you the sensation of urinating. Thankfully, when I get off the table, I'm dry as a bone. Strike two for me today....

Wendy arrived at the hospital just after my scan was finished (she drove over an hour to be with me). We waited in a tiny waiting room till a radiologist told us the scan looked normal. I was glad my lungs were empty and I wasn't retaining fluid around my heart but it's frustrating when you hurt and the doctors can find nothing wrong.

My GP decided to schedule an Echo Cardiogram for Friday morning to make sure I wasn't experiencing any type of heart failure (which is another possible side effect of Gleevec). We showed up at the cardiologist's office at 7:30am (after a heroic effort from Wendy to get me out of bed) where I was gooped up and probed by a technician.

Echo Cardiograms always scare me because you can see how utterly fragile the heart looks with it's thin little valves constantly flapping away. It's amazing to see the structure and imagine how many things could go wrong and yet it sits there stubbornly beating away. The whole procedure took about 20 minutes, after which we were on our way back home.

Happily, the results came back completely normal. So now I feel like a guilty hypchondriac for having all these tests run on me and not one of them show something wrong. I guess I can chalk this up to another phantom side effect of the Gleevec like my "kidney pain" that turned out to be muscle spasms and cramps in my back. Maybe I am paranoid but at least I know I'm healthy*.

* Minus the cancer of course. :-)

The Sound of Crickets

We decided to try attending a cancer support group. I thought it might be beneficial to meet a real live person dealing with the same things Wendy and I are. We found a group close to us through the Leukemia and Lymphoma Society that meets the second Wednesday of each month at Mission Oaks Hospital (associated with Good Samaritan Hospital) in Los Gatos. I called and talked with a lady in late August who informed us there was no need to register, we could just show up.

We left a little early tonight to give ourselves plenty of time. We got to the hospital about 30 minutes to spare. When we went inside we found it completely deserted. There was no one at the front desk, no one at information and no one walking in the halls. We didn't see any signs with information about any support group either.

Wendy and I tentatively searched for a human being for about 10 minutes before finally reaching behind the front desk for the phone and dialing security. A nice gentlemen came and met us in the lobby and said his best guess for a support group meeting was to try the second floor.

Up the elevator we went and finally found an open office with someone in it. She knew nothing about a support group meeting. As we headed back toward the elevator, essentially defeated, we were met by the security guard who told us another woman had shown up and that the meeting was in the library on the first floor.

By now it was five minutes till the meeting was supposed to start. Back down the elevator we went, down another deserted hallway and through the library doors to find... nothing. Nothing but books. No group, no social worker, nothing but books. We perused the books for 10 minutes, getting more frustrated as time passed. Finally, an older woman approached us and asked if we were there for the support group. She went on to tell us that this was the second time no one had shown up. She had tried to attend last month with the same result. We halfheartedly laughed about our bad luck and made our way back out to the car.

So if anyone in the Bay Area is looking to attend the Cancer Support Group at the Mission Oaks Hospital, don't bother. It's apparently defunct.

We're going to try a support group at Stanford in October that meets every second Tuesday of the month. It's a little further to drive but hopefully we get better results up there.

An Official Streak

I've been feeling "good" for about a week and half now. Besides fatigue all day and annoying nausea at night, I've been up off the couch and doing small projects around the house. I'm officially on a "feel good" streak!

I take Dramamine at night for the nausea (where the drowsiness actually works for me instead of against me) and make sure not to push myself during the day. I still have a hard time getting out of bed before 11 and take naps during the day.

My brothers came down to visit me over labor day weekend. It was awfully generous of them to make the long drive and wile away their long weekend with me just relaxing and talking. I really appreciated their company.

We've booked our flight and hotel for our trip to Portland to see Dr. Druker. The nurse coordinator from OHSU sent us a very large packet of papers to fill out. It also included recommendations for hotels that cater to visiting patients. It's amazing the discount you can get at the local hotels being a patient at OHSU. We've decided to make a weekend out of it. We'll fly up on a Wednesday, have the appointment on Thursday and fly home on Sunday. Hopefully there are some low key sites around Portland to enjoy.

In the meantime I'm almost finished reading "Chicken Soup for the Surviving Soul". It was sent to us by one of Wendy's aunts. The stories are about people who have survived cancer or have someone close to them who has survived. They are written as uplifting and hopeful, but reading them is sometimes hard. A lot of the stories focus on cancer in a past tense. They gloss over all the time and energy it took to reach the "uplifting and hopeful" perspective they now have. I haven't quite turned that corner yet. I think I'm still stuck in the "uncertainty" and "unfair" mindset. It is nice to know though, that so many people can look back so positively on their experience.

On the DL

I've submitted my paperwork for disability to the State of California's EDD office. This means (as long as my claim is not denied) that I'm officially on disability as of mid August.

With the place my head has been in along with the chronic fatigue, nausea and pain, I haven't been able to work full time for quite a while now. In addition, unless I'm having a really good day, I'm still hesitant to get behind the wheel of a car due to the vertigo and dizziness that I'm still experiencing.

I wanted to work part time but the state doesn't make it easy to do that while receiving disability payments. So, I'm off work full time.

In addition my co-workers have been informed that I'm taking a leave of absence due to a "chronic medical condition" (I love euphemisms). Letting the cat out of the bag is good, so to speak, since I think most people at work had begun to suspect that I had decided to leave the company for another job. I've no intention of doing that. Hopefully I'll be back to work in the near future.

One of my aunts made the trek down to our little hick town and took me to lunch today. We had bbq at my current favorite, the Trail Dust here in town. She also brought homemade lasagna and salad with her that Wendy and I could heat later for dinner. It was DELICIOUS.

I can't express how grateful I am for all the thoughtful gestures that have been made by my friends and family. It's comforting to know that they are there for me when I need them.

Benevolent Insurance?

I was visited by a Registered Nurse this morning. She works for my insurance company in a program for patients with complex medical treatment needs. When she first called me last week I didn't return her call because I figured it was an insurance company employee whose goal was to somehow reduce my benefits.

I figured it would work something like a car insurance adjuster. If you get in an accident they interview you, look at your vehicle and then try to find any loophole that eliminates their need to actually pay you.

My paranoia turned out to be for naught. She was a very nice lady who took my medical history and made sure that my medical needs were being met with my current treatment. She had done a fair amount of research on my condition and even brought some websites to my attention that I hadn't yet found.

She says she'll be calling me about once a week to check in and make sure everything is okay. I must say, I'm a little surprised by this serendipitous benefit from my insurance company.

On a separate note, I've had two good days in a row with fatigue and back pain being the only real issues. It feels as if I've worked a full day digging ditches almost every day now. Advil helps when I can take it. I'm worried about it's effect on my liver if I take too much though (like a normal dose).

I tried 15 minutes of yoga yesterday and it kicked my butt. I can't believe some of the positions they consider "beginner". In one, I'm supposed to put my head on my shin with my legs stretched out straight. I can barely get my hands there.