Hair today... gone tomorrow

Well....not much left.  On Tuesday, as I was washing my hair, I noticed clumps of my hair coming out. I admit I was surprised since I was told that I may lose my hair after 6 weeks and it's only been 2. That afternoon, my step-dad Bob came over and gave me a very short haircut. The kids said they like this hair style better than before. And Karla is excited because she thinks I look even more like George Clooney.  Hmmm...

Today, I lost quite a bit more and it seems that it's all going to fall out. When I went outside, I was able to feel the wind hit my scalp. For me, that's a weird sensation. I may soon end up shaving it all off and polishing it up. Oh well. I must accept the things I cannot change.

My favorite YouTube videos

Click on the arrows on the left or right of the video screen to see other videos.

I'm feeling much better

After a difficult Friday and Saturday, I woke up Sunday morning at 4 am and ate a blueberry muffin. I didn't even take a pain pill. The water I was drinking went down without too much pain. At 7 am, I was outside doing a few chores.

By 2 pm I was wiped out and took a 2 and half hour nap.

As the day progressed, I was eating more and more. Jessica cooked our family a wonderful dinner of turkey burgers, broccoli and rice. Later, in the evening, mom came by with more chicken soup and matzo balls! To top it off, I had a treat of that Starbucks Hot Chocolate ice cream.

I've really learned to appreciate days like yesterday.

Side Effects

Ever since I returned from the hospital on Tuesday afternoon I have been experiencing different side effects and a lot of discomfort. I'm 11 days in to Chemo therapy now.

While I was in the hospital, I noticed a bit of soreness in my throat. It didn't bother me too much and I was able to eat and drink. But as the week progressed, my throat became so sore that every swallow was like swallowing glass. Also, the inside of my mouth, my gums and my tongue developed sores. My tongue became so swollen at times that I could barely talk. Eating and drinking have now become a chore. To help keep my hydrated, I've been getting IV fluids daily either at my home or the U of C.

I still manage to eat and drink. I must. Now, I must learn to manage the pain and eat smaller portions more frequently. I've been eating a lot of my mom's chicken soup. I have a feeling it will become a staple food for me and boy, is it good. Smoothies and ice cream have been very important in my diet and give me some relief. There is one ice cream in particular that I highly recommend; Starbucks Signature Hot Chocolate Ice Cream. Karla gave me her bowl to taste it and never got it back. I couldn't let go. Steak tacos, I've learned, are excruciatingly painful. I'm learning to accept my new challenges and make some changes.

Besides the mouth pain, I have been battling low grade fevers. The chemo has lowered my white blood count and the shot of Neulasta on Tuesday should help to boost my immune system, but I am still experiencing low grade fevers on a daily basis. Sometimes as high as 100.4. Remember, I've been told to go the ER if the fever gets to 100.5.

I have a new medication to help manage the pain. It has given me some relief and I'm able to eat and drink a little more.

A night in the hospital

I was looking forward to Monday. It was the day I was to have the little pump disconnected with the 5 FU drug. Up until then, I really didn't experience any major side effects.

Monday was a long day. I woke up feeling awful. My entire body was flush, sensitive to the touch with a rash and the lymph node on my neck had swelled up larger than ever. I was able to eat and move around, but I was very fatigued and had to lay around the entire day. By Monday evening, I was upstairs in bed with a fever and the chills. With a fever of 100.5 or greater, we were told to call in and go to the emergency room to be sure there was no infection or severe reactions to the drugs. My fever was 100.9. Fortunately, Karla's brother Greg was over to stay with the kids and we were able to go the U of C emergency room. It only took 24 minutes on a Monday night from the north side of Chicago!

After blood tests, urinalysis, chest scans IV fluids and antibiotics, the doctors decided to keep me over night. They were trying to figure out what caused the fever; infection or reaction. By 3:00am I was in my room.

I was comfortable in the hospital. My fever and rash went down, but now I began to experience some sores in my mouth and throat. Quite uncomfortable. By the afternoon, the doctors decided to discharge me. The ride home was an hour and a half.

3 days since treatment began

So far, so good. Carrying this little pump around is not so fun, but I can deal with it. I've been able to manage the nausea and the only other side effect that I've noticed is drowsiness. I slept a lot yesterday. On Thursday and Friday, I had a home nurse come out to help me administer the IV fluids at home. It was so nice to be able to do this at home. The IV was connected to another pump and lasted about 3 hours. I'm amazed at how well organized the treatment schedule is. I think the hardest part of the treatment so far has been staying out of the sun. After all, I love the summer sun! Oh well, there's quite a bit of other things for me to do. I've been playing guitar, reading, emailing, playing games with the kids, sleeping, talking on the phone.

If you think of any other diversions for me, good books, cool apps for my IPad, whatever, please let me know.

The Kids

Many people have been asking about Jessica and Jakob. They're having a different kind of summer. Normally, we spend many weekends in Longbeach, Indiana or up in the north woods of Wisconsin at camp. This year, since we are staying in Chicago, the kids are involved in a few different activities and camps. For July, Jessica and Jakob go to a theater camp in the neighborhood called Edge of the Wood. At the end of the month, they will be putting on the production of Guys and Dolls. Both are very excited and enthusiastic about performing.

Both Jessica and Jakob have just finished their softball/baseball seasons. They had a lot of fun playing and I'm sure they're disappointed the season is over. This weekend, they both are playing in the all star games for their leagues.

Regarding our "situation" and how it is impacting the lives of each of us. The kids have been very understanding and patient. I'm so proud of how resilient they are. Karla and I have tried to educate them about my situation so they know what to expect over the next several months. So far, with the three procedures that I've had, the kids truly believe that I heal quickly. They also understand how the healing process will work. That I'll get much more ill (from the treatment) before I can get better. In the coming months, I think they'll need a little more attention from family and friends, but for now, they seem to be well adjusted to the situation.

A couple of nights ago, they wrote a prayer called Our Prayer For Our Family. It is very sweet and I know it comes from their heart.

First Day of Induction Chemotherapy

Today, I started with the chemotherapy treatments. It was another long day at the U of C, but with Karla next to me, my IPad and a lot of reading material, the day went very quickly. Here's how the day went. We arrived at 7:15am and checked in. The first thing they do is check my vital signs; blood pressure, weight, and temperature. Then, another nurse attached two different catheters (pig tails) to my new Power Port in my chest. This was completely painless.

Before beginning the chemo, they need to check my blood. This, they will be doing frequently to monitor the white blood cells, hemoglobin and everything else. If my white blood count goes down enough, the doctors may give me a break from the chemotherapy so my body could produce more.

Once my blood work is approved, the chemotherapy can be started. First, they gave me IV fluids with magnesium and potassium for one hour. It's very important to stay well hydrated to protect the kidneys from the toxic medicine. The next medicine that was given as an infusion is called Toxotere; its generic name is Docetaxel. Then, the nurse put on a special protective gown and took out the drug that is considered the most effective, and most toxic, cancer drug of them all; Cisplatin. The Cisplatin IV was also administered as an infusion for one hour through the port. The last IV given to me in the hospital was another IV of fluids, magnesium and potassium for another hour. As this IV was finishing, the nurse came in with an automatic pump about the size of a Walkman. This is to be used over the next five days at home to automatically inject Fluorouracil or 5-FU into my system. The pump is housed in a little black case with a strap that I can carry over my shoulder, wear as a fanny pack or clip to my belt. At least black goes with everything.

Of course, each of the three chemo drugs have their own side effects. I'm not going to bother listing all of them. I figure I'll just mention them as they come. I am taking several medications to try and control the nausea which is a side effect that all the drugs have in common.

For the next two days, I am going to be administering my own IV fluids with the magnesium and potassium. All the supplies and IV fluids have already been delivered. Tomorrow a nurse will come by and teach me the procedure. It gets me out of having to go to the U of C for four more visits.

It's the end of the day. I'm feeling pretty good, but I know this is the beginning of a very long road. I am feeling relieved that I have finally started the treatment. My next appointment is Tuesday, July 20. They will do lab work and give me a shot of Neulasta to help bring up my white blood cell count.

Another step toward treatment

Today (Friday), Karla and I went to the U of C for a couple of procedures. I had a port (portacatheter) installed on the right side of my chest. The port will be useful during the chemotherapy treatments, IV's, or when they need to draw blood. It was a quick surgery. They gave me some anesthesia to make me feel sleepy, numbed up my chest and installed the port. It will stay in my chest until a couple months after treatments.

I also had an appointment with the radiologist. They made a cast of my head and did another scan to prepare for the radiation treatments in 6 weeks. The purpose of the cast for my head is to hold me very still during the radiation.

Overall, it was a positive day. Eight hours in the hospital is not my idea of fun, but at least I had Karla with me. Also, I learned that my latest scans did not turn up anything new. It seems, we know exactly what needs to be done. I'm still waiting for the pathology report from Wednesday's triple endoscopy.

Next Wednesday, July 14th, I go back to U of C for my first chemo treatment. I've been told that it is an 8 hour day.

My diagnosis

I have been diagnosed with squamous cell carcinoma. The only symptom I had was a swollen lymph node on the left side of my neck under my jaw. With this type of cancer, the lymph node is the second place the cancer has gone to. The reason I've gone in for exploratory surgery (twice) is so that the ENT surgeon could locate the primary tumor which they found at the base of my tongue not far from the lymph node. The tumor was very small (at least near the surface of the tongue) and surgeon basically took all he could get for a tissue biopsy during the first surgery. I was told after the second surgery that no cancer was present near the surface of my tongue, so the surgeon had to go a bit deeper. We are still waiting for the pathology report which should be prepared by next Tuesday (July 13).

Description of the treatment

Beginning next Tuesday or Wednesday (July 13th or 14th) I will be given the first infusion of chemotherapy. Before then, I have to have a port installed in my chest that will allow easy access to my veins whether I'm being given chemo, or I V fluids or having blood drawn.

I will have the chemo therapy for 6 weeks. Once I have finished with the initial chemotherapy treatments, I will begin a cycle of chemo and radiation for 10 weeks. They call it the "WO WO" treatment (week on / week off) because I will be staying in the hospital for 5 nights (Sunday - Friday) as an inpatient while they give me chemo and radiation. Then, I go home for the next 9 days. This 2 week cycle of 5 nights in the hospital followed by 9 at home will occur 5 times or 10 weeks.

Rush or University of Chicago?

For my second opinion, I went to the University of Chicago. After having met with the team of doctors and nurses at U of C, I've decided to go through their treatment protocol. This decision was not an easy one. I was torn because I really liked the team of doctors at Rush and the treatments were very different. The main differences in the treatments was the type of chemo, the length of time to be treated and whether it would be through inpatient or outpatient. Additionally, in order to go through the U of C, I had to have a few more procedures done. Yesterday, they did a triple endoscopy and took some tissue sample to biopsy. This was the same procedure I had done at Rush on June 15th. Today, I am still recovering with a sore throat and a bad headache from the general anesthesia. I also had to have another head, neck and chest scan. Fortunately, nothing new has turned up.