The Beginning of Cycle 5

I have been accomplishing my goal of eating. I still do not have a feeding tube and have only lost one pound since last week. While I was home last week, Karla and I did a little shopping for new clothes. It's neat to see that I'm wearing the same waist size I did in high school!  I'm not feeling too thin. I feel like it's a good weight for me. Now I have to continue to maintain it. My mouth and throat are still very sore. I am reminded every time I eat. I have found creative ways to numb the pain during meal times so that I can get the food in, but it's still a chore and quite painful.  I've been told that this battle will continue for several weeks after my treatment. The difference will be that I will no longer be receiving the chemo and radiation and can expect to see signs of recovery.

Last week, during my week off from the hospital, something else very unusual and different occurred. I didn't have to come into the emergency room for an overnight visit! I did have a few low-grade fevers, but managed to somehow stay below the 100.5 degree warning level.  Being able to stay at home for the ENTIRE week was a gift and I really cherished it.

As you can tell by my last few postings, my energy level has been very low. As I've been told by many people, I must listen to my body.  Do what I can to be active, but rest when I feel like resting. I did. I slept away a few more days last week and got caught up on several episodes of Gunsmoke and Bonanza. Unfortunately, I haven't been up to do much writing or reading. And I haven't been playing the guitar as enthusiastically as I had been early on in the treatments.  I'm certain that the pain medication is contributing to my zombie-like tendencies (Halloween idea). My voice comes and goes. The mucusitis has taken its toll on my vocal chords. It's just easier to NOT talk.

So now I am finally in my last cycle of treatment. Cycle 5. I am feeling upbeat and positive knowing this is my last week of treatments. This entire week kind of feels like a Friday. You wake up on a Friday knowing that you'll put in your day and then you'll have time off on the weekend.  And I think cycle 4 felt like a Thursday. You know when you wake up on a Thursday and you hope for a minute it's Friday, but it's really only Thursday. It's kind of a let down, but you manage to get up and get on with your day. I am really psyched that this is the last of the treatments. Karla and the kids too. They are just as upbeat and positive that this is the last of the hospitalization. So far, it is going well.  It is now Tuesday morning and I just got back from my 6am radiation treatment. My next one is at 12:30 today.  I have now completed 44 of 50 radiation treatments. Twice a day for 5 weeks. It's hard to believe I've come this far. It's already the end of October. The World Series is beginning, the Bears are in the middle of their season, the first quarter of school is almost over, Halloween is next Sunday, hockey season has begun. There are so many things to look forward to. I wish I can make the time go faster this week, but for now, I must just chill and take things as they come. Put in my time.

Lastly, I want to acknowledge all of the emails, cards and other gestures by everyone that offer support, love and encouragement to me and my family during these difficult times.  It is so nice to hear from everyone. I have had some difficult days, as you can imagine, and your positive and encouraging comments have really helped me to keep my focus optimistic and my spirit up.  So thank you again for you prayers, thoughts, cards and gestures. We really feel blessed by the amount of support and love that has been given and offered to us. 

Fourth Cycle

I began cycle 4 this past Sunday and there is really nothing new to report.  All the fun stuff seems to happen when I get home from the hospital.  I've been told that I look and sound great. My voice has come back a bit, but I'm still a little hoarse. I wish I felt as good as I look and sound. 

All I want to do is sleep. I feel very sluggish and on Tuesday, Wednesday and Thursday that's all I did. It's as if I slept away the entire week.  Sometimes that's a good thing.  When you want time to pass, it's easier to sleep away the hours. 

The biggest question of the week is whether or not to have a feeding tube.  I've been gradually losing weight since cycle 1 (about 20 lbs.) and the doctors are concerned that I may not be able to maintain my weight. They also know how important good nutrition is to the healing process when I am finally recovering from the treatments. I was scheduled to have the feeding tube put in on this past Tuesday, but I canceled the procedure. I've been eating and drinking pretty well and trying to maintain my weight.  I feel that I could finish the treatments without the feeding tube but I must say, it is more challenging then I thought it would be. Along with the pain of swallowing, I just don't have a desire to eat and I can't taste food very well. No more cravings. My goal is to get at least 2,200 calories per day.  Not an easy task when you don't eat anything and all I am doing is sleeping.  So, that has been the challenge.  I've been forcing myself to drink the Scandi shakes and to eat as much protein as I can.  It's either that or the feeding tube. 

It's finally Friday afternoon and I'm sitting in my hospital room waiting for my second radiation treatment for today.  Then, at around 6pm, I get to go home. I can't wait. The radiation treatments have been a lot easier to tolerate. The radiation field is now a lot smaller. So I'm hoping that the effects from the radiation will not be as severe as they have been. My goal for the week at home is to eat, eat, eat.

Pain Management

I've been home since last Friday night going through my daily routine of taking care of myself. It involves a lot of planning and patience.  The days seem to go by quickly when you have something to do every 4 hours, like taking Tylenol. My daily routine now involves taking pills, giving myself shots, frequent mouth washes, skin care for my face and neck, daily IVs for hydration, deciding what to try to eat and taking the time to try and eat. Sometimes the medications change. For example, by the time I left the hospital on Friday, I found out I was neutropenic. My white blood cell count was low enough to put me in "protective isolation". I had to wear a mask any time I was out in public and take extra care washing hands and watching what I eat and breath in.  We had to remove the living plants from our home because I was more susceptible to getting a respiratory infection. The doctors added another shot of Neupogen to my routine to help boost the white blood counts. By Tuesday, I was no longer considered neutropenic.

It is interesting how quickly side effects come and go. Mouth sores don't last very long. About 3 - 4 days, but one of the biggest issues I have had with the mouth is mucositis. Mucositis has made everything I do a challenge. Sometimes I can't even swallow the pain pill or Mucinex that helps to reduce or thin out the mucus in my mouth. The inside of my throat and esophagus are as raw as the outside of my neck making swallowing even water painful. So, I've learned that I must be diligent about taking the pain medication every 4 hours. Waiting longer could lead to many other problems. It's best to manage the pain.

I had to go into the hospital again last night (Wednesday) because my fever spiked to 102 at 10:00pm. Thanks to one of my supportive neighbors for taking me all the way across the city, Karla was able to stay home with the kids. I arrived at the ER at around 11:00pm. The usual tests were done and I was finally admitted in my room at around 4:00am.  As much as I dread having to go down there, I realize how important it is to constantly monitor my blood counts while I am having chemotherapy. It's now 3:30pm on Thursday and I am back at home with Karla and the kids.  I'm hoping to keep the fever under control so that I can proceed with cycle 4 on Sunday.