I read about people who go through chemo and are able to work during the whole process. Some people even do yoga and exercise. I must say I'm a little envious. I thought I was a pretty tough cookie but I'm finding my body doesn't want to cooperate too much with my mind. This first infusion has completely wiped out all the progress I've made to stabilize my system over the past 10 years, after my flesh eating bacteria diagnosis. I'm in shock how one infusion can wreak so much havoc. My stomach has never liked pills and it's doing its best to let me know It's on overload. My bowels are also expressing their unhappiness by stabbing their picket signs into my large intestine to get even. It's difficult to remain popular with all the parts that represent my body when they are all rebelling! I'm working hard to get them all back on my team, knowing I'm luring them into a false sense of security. I'll have to betray them all over again when I hook up for my second "chemo cocktail". Now I know what commanders go through, leading their troops to war. You know you'll have casualties - stomach here, spleen there - but you have no other choice but to move forward, because if you don't, the big "C" will get ya! I so wanted to be the chemo queen. Waving to all my family & friends, perfect make-up, perfect drawn on eyebrows, nicely done wig, toned body from all the yoga I'd be doing in my spare time. I've read stories, they must be true. These amazing women going round after round, barely missing a beat. I've decided they can have the crown. I'd rather whine and complain about my failing body parts! No chemo trophy for me!
I was looking forward to a few hours with my family on Labor Day. My nephew and niece were kind enough to have a shindig at their house and I was excited to see everyone. I especially miss the kids, because let's face it, they are always the life of the party. It's fun to watch them interact with each other and I get great pleasure out of just listening to their conversations. I thought maybe I had turned a corner until I woke up Monday morning and realized I was feeling pretty crappy. My breathing was labored and just the act of walking up and down the stairs exhausted me. Bud, Robyn and I did our usual routine - we love to order Chick-fil-a breakfast, find a nice cozy spot and eat in the car. We've been doing this for years - it's kind of our thing. After breakfast I realized I just wasn't feeling right. Besides the other side effects I was feeling, this one just seemed different. I was due to have my labs checked and it was so tempting to put it off for the day and just enjoy time with my family. But no, I had to listen to that inner voice - you know, the same voice that kept telling me, "don't do chemo, don't do chemo." So off to the lab we went. A few hours later I got the call I knew was coming. "You're white cell count is down and your neutrophil count has fallen below 500 to 200. Anything below 500 means you need to go straight to the emergency room." Seriously? On Labor Day? My first question - aren't the injections I'm giving myself daily - in my tender stomach I might add--supposed to prevent this from happening? You know, the shots that give me all that bone pain and make me not want to sleep through the night? So now my white blood count has joined forces with my stomach and intestines!? Traitors!! I've been treating them so well for all these years - how dare they! So, off to the ER we go. The three amigos - Bud, Robyn and cancer girl.
Now for the kicker - I'm told I have no way to fight infection at this point - and they want me to go to the emergency room? With all the sneezing, coughing, puking people on earth? I have no shield, no sword - not even a paper clip to defend myself, but come right on over! I bowed my head dutifully, and off we went to my HMO Hospital - a 40 minute drive - with no weapons.
Luckily for me, I have a pretty good sergeant in the form of Robyn. As soon as we get there, she makes me wait outside in my wheelchair while she commandeers a face mask. That's what I like about this girl, she's always thinking. Once there, we try to pick the least likely spot to get blasted by projectiles - having no shield and all. Oddly enough, the place wasn't too crowded. I'm guessing most people would rather infect their family and friends for the holiday than spend the day at the emergency room. We waited about 10 minutes and got right in to see the ER doc. The staff put us in a room in the corner of the ER that is typically for patients that are coding. It was comforting to know if I went into cardiac arrest, all the supplies where at our fingertips. We had our own room, away from everyone, and they also put a sign on the door to let people know they had to wear a mask. They made Robyn and Bud wear masks too. Now I'm all for being cautious for obvious reasons, but we do all live together and share germs on a daily basis. In fact, we just shared a car ride over in closed, tight quarters - but I guess rules are rules. They both looked lovely sporting their masks and their patience was impressive. My first choice is always a female nurse or doctor. I tend to be a bit modest and I'm pretty uncomfortable with the male variety of health care professionals. In walks my male nurse - ok, I can adjust. He gets me all hooked up to an I.V. pole, takes my blood, makes me pee in a cup (in a very disgusting bathroom, did I mention I have no sword or shield?) and then settles me in on the wonderfully hard gurney with no pillow and tells me to relax. I've got cancer!! - can I get a pillow???? In all fairness, I was offered a rolled up blanket for use as a pillow. Beggars can't be choosers! And so, the poking and prodding began. EKG, chest x-ray, blood pressure, etc. All in an attempt to find out if I have an infection. Ummmmm, I have no fever. I'm not coughing, sneezing, wheezing and I'm not in pain other than the usual. Did I mention that none of us had any lunch? Bud went in search of food but due to the holiday, everything was closed. I guess no one visits the hospital on holidays and the medical staff doesn't need to eat in the cafeteria. Note to self - never go to the hospital on a holiday where food isn't an option. My male nurse did offer a TV dinner with mystery meat, but I declined. I had to remember this was an ER, not the Ritz.
There we all sat, me on my wonderfully hard gurney, Robyn in a chair and Bud in my wheel chair, and in walks the young orderly with no mask. He was a young kid, kinda skinny, wearing scrubs. He walks over and introduces himself as the ER doctor. I swear he looked to be about 16-years-old. He told me I have neutrophenia and said they are waiting for test results and a consult with my Oncologist, but he thinks they may have to keep me. This immediately made me upset which of course made the 16-year-old want to comfort me. He was pretty intense and looked straight into my eyes and touched my face and said it will all be ok. Where's my female ER doctor!! ?? He said they may not have to keep me, depending on what the Oncologist recommended after the test results. I'm sure he is a perfectly good doctor, I mean, he is working in an ER and all, but jeez he sure looked like a baby! In fact, he reminded me so much of one of my son's friends. Robyn said if he was all up in her face like that she would have punched him. That's my Robyn, she's such a warrior! So the young pup went off to check on my test results and ordered a course of triple antibiotics to treat an infection they don't know whether or not I have. I guess it's better to be cautious than not? We waited for three hours, starving, uncomfortable, wearing our masks while we watched the drip, drip, drip of the I.V. Even prisoners get a meal! Finally, after all the tests were in and they consulted with the Oncologist, it was determined I did not have an infection and I could go home. I'm not allowed to be around people, but I can go home. Yipeeeeee!!!!! I guess it's good I didn't go to the family BBQ with all the kids. The best part of the whole trip was the male nurse giving us a box of the face masks. Such a lovely present.
Now for the serious side. I really am grateful to my HMO doctors. They treated us really well in the ER and took many precautions to keep me safe from germs. They also gave us a private area in an ER - which was pretty impressive. I couldn't have asked for a better team, Doogie Howser included. As I said, I'm sure he is a great doctor, and he seemed very compassionate to the old lady with cancer. As far as my white blood count, I still don't understand why I'm giving myself daily shots and it doesn't seem to be bringing up my numbers. I guess that's a question for the Oncologist's office today. They did call me this morning to let me know I need to go on Cirpro. Ummmmmm - do they read their charts? They started me on Cipro on the 28th of August and I called them to let them know it was upsetting my stomach. Do they write this stuff down? Very confusing. They also said I need to start neupogen shots. HELLO???!!! Also started on the 28th. - grrrrrrrrrrrr. They even gave me a calendar of when to start this stuff. I think I'm getting way too testy, time for an attitude adjustment. I know I'm not their only chemo patient but shouldn't they know what they prescribed to me? I'm done complaining now :) Hope you all have a lovely, hemorrhoid free day. Did I mention the hemorrhoids are back!!?? We'll save that for another post. I can do a whole post on my panic attacks regarding hemorrhoids - it'll be fun. Also, in case you are all wondering, 8 days after chemo, I still have my hair. It seems to be growing straight up, which is totally attractive, but I'm guessing that will change soon. And, the steroids didn't make me gain weight, I've lost 6 pounds.
Thanks for checking on me!
P.S. Special thanks to my angels - Robyn and Bud for always being by my side. You both have no idea how much I appreciate all you do! Big thanks to Jeanne - your split pea soup was one of the only things I could eat for a few days, thank you so much! To all family and friends who have called and offered help, thank you, I appreciate you all.