Site Updates

As you can see, I've made some updates to this site. You can now be updated by email each time I post. Just enter your email address in the space provided and follow the instructions. Or if you prefer to use a RSS feed, I have that set up as well. I have also added a donation link. This was on my original blog site and I finally figured out how to move it. Donations are appreciated, but absolutely not required nor even expected.

There are future changes to come. I plan on updating the links provided, adding several cancer and some colon cancer-specific sites as well as a couple of blogs written by other cancer survivors. I do not plan on deleting any of the current links, but there will be some regrouping. All of this is to make the site more informative as well as making it easier to keep up with the posts.

I do have chemo this week so posts will be infrequent. I will try to post tomorrow afternoon with an update after I talk to Dr W about my CT scan results, but otherwise I'll probably be out of commission until Friday (which is my birthday!!!).

Overheard in My Apartment #3

Last night, we had a few people over for a game night. We played Scrabble, Apples to Apples, and Cranium. Unfortunately, I didn't keep a notebook with me to write down the crazy things that were said last night and my memory sucks. I will post my favorite though:

"Screw you, I'm clever!!!"

A while ago I bought a bouquet of fresh daisies. I put a small vase of them in the bathroom despite protests. When they started to die, I threw them out. I was not prepared for the disappointment this would cause:

"I got used to them. They were friends. They were someone I could talk to when I was pooping."

This one was from quite a while ago and I have to add that I did tell my mom (who didn't do anything about it):

"Don't tell your mom that I spit in your hair."

For previous entries, click here and here.

To Act Cool, To Look Cool, And To Be Cool

1) I believe that everyone has at least one movie generally regarded as horrible that they absolutely love, but are ashamed to admit. I have received a significant amount of grief about mine over the years. There are really only a few people who I’ve even told, but I have decided to reveal it here. It is. . . Grease 2. The great songs and the outlandish characters always make me smile. I find myself randomly humming Cool Rider (I want a C – O – O – L R – I – D – E – R). Just to prove that I am not the only person who has a ridiculous affinity for this movie, check out this site.

2) There’s an improv group called Improv Everywhere in New York that is unofficially related to the Upright Citizens Brigade meaning that is run by either current or former members of the group. They stage shows which are really more like humorous artistic happenings. They perform anywhere and always to an audience that is unaware they are going to see the show. There are even times when the audience never knows that the whole situation was staged. On their website they thoroughly document each of their performances and I have been reading them recently. My favorite so far is an annual event where the improv agents ride the subway with no pants. Here you can find their No Pants adventure.

3) Oh, great news! There’s a new yogabeans!!! G.I. Joe dolls doing yoga. . . does it get any better?!?!

Cue the Flashback

The past weekend marked the one-year anniversary of my hospitalization for anemia. That was the beginning of the medical chaos that has taken over my life. Cue the music and squint your eyes until everything becomes fuzzy and fades out. . .

I hadn’t been feeling well since I had come down with a cold about a month earlier. For some reason, it just didn’t want to go away. Over the weekend, my brother was visiting and we had a great time, but I was exhausted. Early Tuesday morning, I dropped him off and headed to work. I was early so I took a nap in my car. At 8:30, I dragged myself out of the car and into the office. I worked for 3 ½ hours and then had to take my lunch break. I went back to my car and went back to sleep. I only had 30 minutes, but I fell asleep for almost an hour. I went back into the office and worked another half hour and decided to take the rest of the day off.

That evening I spoke with my mom and she insisted that I go to urgent care the next morning. I had no insurance, but she said that she would send me the money to cover it so I agreed to go.

The next morning I walking into Studio City Urgent Care with what I thought was a cold that just wouldn’t go away. The doctor kept commenting over and over again that I was really, really pale. She was adamant about taking blood for a CBC (complete blood count) because she was sure that I was anemic. I told her that I was just a really pale person – I guess we know why I’m not a doctor. She also took a chest x-ray. It confirmed that I had pneumonia. She sent me home with some antibiotics and said she’d call with the blood test results.

I went home and went to bed. The next morning I was awoken by a phone call. The results had come in and I was severely anemic. My hemoglobin was just over 4 (the normal range is 11-14). She told me I need to go to the emergency room immediately. I freaked out since I didn’t have any insurance, but understood that I had to go.

My roommate S drove me there stopping to pick up the test results on the way. I was admitted to the ER almost immediately – I never even saw the waiting room! After about 45 minutes of trying, they were finally able to start an IV and they took a bunch of blood to run every test known to man. They also ordered blood for a transfusion. I received two transfusions in the ER – that’s 3 pints of blood.

Late in the afternoon, they admitted me to the hospital. I was put in a room with three other patients. The other women in the room had to be at least 50 years older than me. The woman in the bed next to me couldn’t speak. The patient across the room was having some horrible digestive issues. She had a commode next to her bed and every time she had to use it, the smell would float over. It was almost unbearable.

I had to stay overnight, but I didn’t really sleep. I’ve never been able to sleep well away from home. Instead, I watched television most of the night and in the morning they rechecked my blood count. It had gone up, but not enough, so I had two more transfusions. The doctors said that if my count went up enough, they would release me. To my relief, it did and that evening I was allowed to go home. . .

Open your eyes slowly and let the present fade back in. . .

At the time, the doctors were unable to uncover the cause of the anemia. They finally decided to say that it was diet-related and they started me on fairly heavy amounts of iron supplements. The actual problem was that the giant tumor in my colon was bleeding, but because of the rarity of the condition and the complete lack of family history, it was not discovered that week.

It’s hard to believe that was only a year ago and it’s hard to believe that an entire year has passed. Hindsight may be 20/20, but for my own sanity, I had to stop going over the what-ifs. I can’t change the past – all I can do is focus on the present and my fight to beat this horrible disease.

Team of doctors

Most of the literature about the cancer experience refers to the team of doctors that will be working with the patient. Up to this point, I have only had two doctors: Dr W, my oncologist and Dr C, my surgeon. If I have another surgery though, Dr C would not be the surgeon because he’s actually the chief of emergency surgery. He continues to be my surgeon though due to the saga of the second belly button. So basically, I only have one “permanent” doctor on my team.

At my last appointment, Dr W suggested that I start seeing a primary care physician. Although he will continue to focus on my chemotherapy and the side effect, he thinks it’s a good idea to have someone watching my overall health – a doctor who is more familiar with the newest medications outside of cancer treatments. He specifically wants me to get my hormone levels tested as I seem to be menopausal (hot flashes at the age of 28 are fun). This could be temporary or permanent, but we won’t know until after I finish chemo.

I’ve never actually had a primary care physician. My medical care has almost been exclusively at urgent care facilities or military clinics. Last summer, I was seeing an internist, Dr P, at UCLA to treat my anemia. I have not had any contact with him since two days prior to my surgery last August. I paged him because I had developed a rash that appeared to be an allergic reaction to the antibiotics I received in the emergency room. He had me come into the internal medicine offices the next day, but I saw another doctor who sent me to the ER for the cat scan that finally revealed the tumor.

I really liked Dr P. He listened closely to everything that I had to say. He did everything that he could to treat me since I was opposed to any major tests. I had already accumulated $15k in debt from my 2-day hospitalization and I was way too worried about money. So I don’t blame him at all for not discovering the real cause for the anemia. I was pushing to wait and see and hoping that I would get insurance by the end of the summer and then we could do further tests, if necessary.

Today I called and made an appointment to see Dr P on June 8th. I finally decided that it will be easier to see a doctor that I already know and like than to try to develop a relationship with a new doctor. And as my friend M said, he is likely to give me a lot of extra attention to make up for not figuring out what was wrong last summer.

Overheard in My Apartment #2

It's time for another edition of things overheard in my apartment. For the first edition go here.

"Behold. . . my big, bulging muscles!"

"Sing it Bryan (Adams)!" exclaimed as "Everything I Do (I Do It For You)" filled the apartment. "That's f*ing baby-making music right there."

"I don't want to wear pants anymore. . . I don't want to wear underwear either."
"I don't want to wear my pants either."

Sigh...

You Can Scan Me Anytime

Yesterday I had another CT scan to track the progress of my chemotherapy treatments. It was another adventure which I’ll get to shortly, but the bigger news is that I already got my results. I’d post the report here, but it uses words like ileotransverse and anastomosis so I’ll just summarize. The tumor shrinkage has continued. My lungs/chest remain clean and there are no new liver lesions. This is all great news. As for what this means, I will discuss that with Dr. W at my next appointment on May 30th. For now, I’m just celebrating that the chemo is still working.

In the continuing saga of medical adventures, I spent the early portion of yesterday morning in the radiology department. After checking in and dealing with the continuing saga of financial misadventures by paying more than I can afford for the required test, I settled in to enjoy my barium sulfate banana smoothie. For those keeping track, the first time I was tortured with the barium sulfate apple smoothie. At the next scan I was introduced to the banana smoothie – at room temperature due to my cold sensitivity. I hesitate to use the term “better” BUT it was definitely not as bad as the apple. This time I requested the banana and got to have it chilled since I’m not taking the oxaliplatin anymore! Again, it wasn’t better, but not nearly as disgusting as the apple.

My roommates both came with me and kept me entertained with the LA Times crossword puzzle while I choked down the two bottles of smoothie. Forty-five minutes later, I had it all down and the crossword puzzle was done (or almost done if you go strictly by the rules and don’t allow made-up words). Moments later, the radiology tech came out to get me. We headed to the back and on the way he ran into the garbage can. It was not out in the middle of the room, but pushed up against the wall – well out of the way. I was instantly concern. If he can’t walk to the door without stumbling over trash, how good will he be at starting an IV?

As we headed to the clothes-changing cubby (I don’t know what else to call it), he asked if it was my first scan. I said no and J told him that I’m an old pro at this. I added that I was a really difficult stick though. He replied that I was lucky because he’s really good. Uh-oh, another red flag. . . I immediately imagined him sticking me with the needle over and over again insisting that he could get it. I would become his own personal human pincushion. But, like a good girl, I swallowed my concern and changed into the hospital gown and my socks. Why did I bring a special pair of socks to change into? From my first experience, I learned not to wear black socks with dress shoes so I had to have athletic socks, but I wore sandals to the appointment. I knew that it would be freezing cold in the scan room so I stuffed a pair of socks into my purse taking up so much room that when J asked if I could hold his book so he wouldn’t forget it, I had to decline. . . because of the socks.

Onto the scan room. I laid down on the table anticipating the drama that I knew was coming. The tech put a tourniquet on my right arm and then on my left, checking all of the usual places for a successful IV stick. He went back to my right where I told him they usually draw blood. He had located a vein and commented that it was just a little deep, but it would be usable. Then he grabbed the needle and just like that it was done! I lay astonished at how easy it was. I commented on this and J told the tech that it had been huge drama the last time. The tech replied that it was just like shooting the ball. If you take the time to set up the shot, you’ll get it in every time. A basketball analogy? For starting an IV? I told my friend K about this with some surprise and she said I should be more surprised that I knew it was a basketball reference.

After that, it was just scan, scan, scan, change back into my clothes and out the door. Barring dealing with the continuing saga of financial misadventures, this was one of the easiest and most on-time appointments that I have had in a long time. I was due for that.

Just a Quick Update

Despite my lack of posts, things are going fine. I do have some updating to do, but I had treatment today and I know that I am on the brink of exhaustion and not making sense so this will be quick. I have been really busy and when I haven’t been busy, I’ve been exhausted. My good friend Mandy visited last week and we had a great time.

I’ve had an adjustment to my treatments. I developed an allergy to one of the drugs, so I am no longer receiving that drug. Thursday, I am having my next CT scan. I will post the results when I get them. I can’t wait to have some more of that yummy barium sulfate smoothie!