The road back to normal

Over the past couple of weeks, I have had some ups and downs.  A couple of weeks ago, I was feeling great. I was able to work out every day, I was eating well and I was very excited and anxious to get back to work and return to a normal life. Perhaps it was partly cabin fever from the winter, but I needed to get out of the house.  On Thursday, January 13, I went to U of Chicago to have the port removed from my chest (another step toward closing this chapter of my life). That was the second week of January. I made arrangements with my doctor to send a note to human resources stating that I can return to work full-time with no restrictions.  I was to go back on the Tuesday after Martin Luther King, Jr. Day, January 18th.  Well, Tuesday morning came. I got out of bed, showered, got dressed and  made breakfast. Suddenly, I felt chilled (a very familiar feeling) and I knew I had better take my temperature.  I did have a cold over the weekend and a minor cough, but thought it was just a minor cold and that it would pass.  Sure enough, I had a fever of 100 and had to call in sick my first day back to school. 

Fortunately, it was finals week and I was going back to school to organize myself for second semester. So, on that Tuesday I went to have my blood tested to see how my white blood count was.  It was fine. Everything was in the normal range and no antibiotic was recommended. As the week went on, my cough worsened and my fever went higher. So on Thursday, I went to an urgent care doctor to listen to my lungs and perhaps get a chest x-ray.  The doctor saw an infection in the x-rays and prescribed an antibiotic.
After calling my own doctor with this news, I was put on a second antibiotic. I've been getting better and better ever since. Thank God for antibiotics.

I finally was able to return to work yesterday, January 24th. I taught one of my three classes. We're on the block schedule and each class is 90 minutes long. It was suggested (recommended) to me that I go back to school on a part-time basis until I feel well enough to take on the full load. The substitute that was hired to cover my classes is doing an outstanding job and is willing to continue until my return. So, this week I am testing the waters to see how I do with 2 of my 5 classes.  My throat is still very sore and talking doesn't exactly help it heal. But I have Lidocaine that I can put on the throat for temporary relief and water helps keep it moist. Last night I had the best night sleep in weeks!  My feeling is that I'll get better and want to take on the full 5 classes, but perhaps after a few more weeks of healing. I am going to see how this week goes and then reassess.

Many people understand that the road to recovery is a long one with many bumps in the road. I have experienced my share of set backs over the past several months so I will continue to write these posts. I appreciate those of you who have taken an interest in my experiences and continue to check my blog. I never realized how many people have had similar experiences to mine or know someone who has. Unfortunately, most have had some experience with this disease and can somehow relate and connect with what I've been going through.  Thank you for taking an interest.

N.E.D

No Evidence of Disease!  No surgery! Yahoooooooo! I am one happy camper. Thank you all for your prayers. They've been answered. My family and I are going out to celebrate. Cheers!

Positive news!

I just got home from U of C and I am very anxious to share what I've learned.  The CT scan of my neck shows that the lymph node has actually gotten smaller! I just had a bad infection.  So, with that news the next step is to take the PET scan (full body) this Friday.  My surgeon is VERY confident that the PET scan will come back as negative for cancer cells. However, if for some reason the lymph node lights up and comes back positive, I will be scheduled for surgery the following Wednesday (Jan. 12) to take out the lymph node.  If I go through with the surgery and the lymph node is removed they will biopsy it right there to find out whether or not to do a complete neck dissection. As of right now, I am feeling very optimistic and confident that we will get good news on Friday. I'm ready either way.

I still am experiencing quite a bit of pain in my throat.  Today I learned that what I've got going on in there is the equivalent of first degree burns.  No wonder it hurts. 

The surgeon told us that she'll call me with the results sometime Friday late afternoon or early evening. Once I find out, I'll share the news.

Happy New Year!

Since Christmas Eve I have been getting better and better. My family and I go down to Gilman, Illinois where Karla is from and stay with my in-laws Jim and Dorothy.  I really believe that that good 'ol country cooking and the few days of rest down in Gilman helped to get me on the right track.  Of course, the antibiotic I have been taking for the past two weeks has probably had something to do with my progress as well. Anyway, my family and I had a wonderful Christmas weekend.

When we got back to Chicago, I insisted on going out to eat and I've been out to eat each night since last Sunday night.  I don't even remember the last time I had gone out to eat. It must have been sometime in August. So,  New Years Eve was a great night as well.  The weather was so mild that I was able to stand outside and watch the kids ice skate at Milenium Park with my brother and my niece. Afterward, we had another feast.  I still can't eat a lot, but I sure am happy to be able to eat whatever I want. 

This week I have an appointment on Tuesday for another CT scan of my neck. Then I meet with the surgeon. She'll look at the previous scans and the new one to compare. I'm still keeping my fingers crossed that I won't need surgery.  The surgeon will also decide if I should go through with the PET scan that is planned for on Friday.  That's all for now.  I'm feeling great and a lot stronger. Happy New Year!

Recovery has been tough

It has now been seven weeks after my last treatment. My recovery from the radiation and chemotherapy has been slow and at times discouraging. In fact last Saturday, I noticed that the lymph node in my neck, the very same one that was a malignant tumor, swelled up again. In my last posting I mentioned that I thought I had caught a bug because I was feeling even weaker than ever and my appetite wasn't getting any better. For breakfast I would pick at one scrambled egg and nibble on a little toast. The shakes were definitely still a very important part of my diet. On Monday, fortunately, I had an appointment with my radiologist and I was very anxious to tell him about the swollen lymph node.  As he felt the side of my neck his face showed a bit more concern than I was hoping for.  After a thorough examination of my throat and voice box, he thought that perhaps I had a bad infection. After all, there was still quite a bit of inflammation and swelling. So, he prescribed a very strong antibiotic that I am supposed to take four times a day for two weeks.  I left there praying that I had a bad infection. 


The good news is that since I've taken the antibiotic (about 3 days), My appetite and energy level has improved and the swollen lymph node has shrunk again. I can only hope and pray that I won't need the surgery. The doctors, however, consulted with one another and decided to schedule a surgery for me.  After two weeks of the antibiotic I have an appointment with the ENT surgeon and I believe it is then that we will decide whether or not to go through with taking out the lymph node.

I have been told by many cancer survivors that all that I've been experiencing is normal and that in the months to come I'll be fine. I believe that. I believe in my doctors and the treatment that I've gone through and I will do whatever necessary to get through this. Now, all I have to do is wait it out. I feel fortunate that I feel as well as I do for this holiday season and I'm looking forward to spending it with family and friends.

I hope you all enjoy the holidays. Merry Christmas and Happy New Year!

Baby steps

Another two weeks have past since my last post and unfortunately there isn't much to report. My recovery from the treatments is very slow. I thought by now that I'd be eating and drinking a lot better. The pain in my mouth and throat is not bad, I simply don't have the desire to eat.  I don't get hungry or cravings like I used to. Still, I manage to eat small portions of food and the shakes are helping to maintain my weight, but I've lost a couple more pounds. I continue to reduce the pain medications that I'm taking. I should be completely off the pain medication in another two weeks.

Each week I have my blood counts checked. The levels of my red and white blood cell counts have been fluctuating quite a bit, but now seem to be leveling off.  I have had other symptoms that point to dehydration and so I'm still giving myself 2 liters of fluids by IV each day.  I get worn out quickly and need to sit down and rest. I also have had a low grade fever for the past several days.  It is possible that I caught a bug.

I am trying to not get discouraged by the slow progress.  I was very hopeful that I would be a lot stronger and ready to return to work. But I must continue to be patient and allow my body to heal. 

Tuesday at the University of Chicago

On Tuesday I went to the University of Chicago for three different appointments. First, I had to do a swallow study to see how well the muscles in my mouth are recovering from the radiation and to analyze how well I am able to eat various foods. Basically, they give me different foods and liquids and take an x-ray of me swallowing. I was told that I did very well. There are still some areas that I need to improve and I was given a sheet of paper with various mouth exercises that I am to do a couple times a day.

Next, I went to see my ENT doctor. This is the doctor/surgeon that would do the surgery on my neck if it were necessary. While in the examining room, we all viewed my scans from last Friday together. She put the most recent scan next to the scan from July and showed us the difference between the two scans. The changes that she pointed out were remarkable. Not only had my lymph nodes gotten significantly smaller but the shape of my tongue had also become more symetrical. In the earlier scans, there was a subtle abnormality at the base where the tumor was which can only be noticed by a trained eye. At this point the doctor looked at me and said that she predicts that when I have my PET scan in January, it will come back negative for cancer and that surgery will NOT be necessary. That is news that brings tears to my eyes. The treatment was very effective. This being said does not mean that I won't have the operation. The team of doctors will decide together whether or not they feel I should have it. Next week the team will meet to review my scans and discuss the next step.  They won't make any final decision until after the PET scan. Again, the team consists of the ENT, the oncologist and the radiologist.

My last appointment for the day was with my oncologist. This doctor was the one who regulated the chemotherapy and other medications that I needed for pain management. After being examined, we were able to once again see my scans and the dramatic differences from the previous scans. The oncologist confirmed what the ENT said and thinks that I probably will not need the surgery. Even though the lymph node is still visible in the scan, the radiation is still actively working to kill the tissue. Even four weeks after the last treatment, the radiation is still having an effect. This explains why I'm still feeling run down.

I left the University of Chicago feeling pretty optimistic. I also felt very thankful for my doctors, their abilities and knowledge. I'm still not completely out of the woods, but I'm feeling pretty good about the future and my health.

4 weeks after treatment

It's been four weeks of recovery now and there is not much to write about.  I am experiencing the same symptoms as the first day after treatment ended. Low energy and fatigue, mouth sores and throat pain are still the main obstacles. I'm just beginning to eat a little more though it depends on the day.  The best meal I've had in months was on Thanksgiving. I had a great day that day and felt like my old self.  On Friday morning I had to go to the U of C for a CT Scan.  I find out the results tomorrow (Tuesday) when I meet with my ENT doctor. My hair is growing back. Karla and the kids love to rub their hands on my fuzzy head. I had to shave the top part of my face. The area exposed to the radiation still will not grow hair.

Post Treatment

I am now officially in the post treatment recovery stage and I had to add a few more fish.  They can now be symbolic of this recovery stage. The time when my body rejuvenates and good cells reproduce.  I'm still quite busy with my regimen. Even though I no longer have chemo and radiation treatments, I am still giving myself two units of IV fluids a day, two shots, quite a few pills, skin care on my neck and shoulders, frequent mouth washes and trying to also eat a couple of meals a day. Other than that, it seems all I do is sleep.  My body must really need the rest. I'm not discouraged. I've been told to expect the ups and downs. The recovery can be like a roller coaster and I've always known that things must get worse before they get better. 

End of Treatment

I completed the inpatient part of the treatment on Friday and finally came home to a small welcoming party ready to celebrate the Halloween weekend. I did (for a very short moment) feel liberated knowing I would not have to return to the hospital to pump any more toxins into my body and not have to undergo any more radiation treatments. Everyone was congratulating me, patting me on the back as if I accomplished a great feat. I suppose what I have been through is significant and I understand why I am being congratulated. The fact is, I am having one of the toughest weeks yet of the treatment and I do not feel like it is over. Everything that was done to me in the hospital is now setting in. Eating and drinking are still the two biggest challenges I have. As painful as it is, I have accomplished the goal of not getting a feeding tube and I am maintaining my weight and for that I am very proud.

It is now Friday morning and up until now I have slept most of the week away. I'm waiting to see small signs of recovery whatever they may be. It seems like long ago since I've had to shave. I had an appetite on Monday night and ate some pizza and blueberry muffins. They actually tasted pretty good! THAT is a small sign of recovery. On Tuesday, I did a little (very little) yard work. Perhaps another sign that I am getting stronger. On Wednesday and Thursday I slept most of the day away. In between naps I manage to play a little guitar. Of course, no singing yet. My voice is still very raspy and it hurts to talk a lot. But, gradually, I can tell that it's improving.

So, what's next?  Well, every week I will return to the University of Chicago for blood work so we can monitor my progress.  The day after Thanksgiving, I have an appointment scheduled for a CT scan of my head and neck to see if any signs of the lymph node remain. As of now, I can still feel a small mass in my neck which is not uncommon. Usually, it is dead scar tissue. However, in some cases, cancer may still be present. So, after the CT scan in November, I'll will have a PET scan in December. This scan along with the CT scan will help my team of doctors determine if I should have neck surgery to remove what is left. The team consists of the ENT, the Oncologist and the Radiologist. I have heard that it is likely that I will be having the surgery. I still have not given up hope that I can somehow avoid having this additional surgery (set back), but I can see why people faced with the decision about whether or not to have it, go ahead and have it done.
Peace of mind.

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.

Going into the 3rd Cycle

My week off at home (week 4) has been challenging. As usual, on Monday I started getting the low-grade fevers and by Wednesday the fever got up to 101. So, I went back into the hospital on Thursday for the usual tests to see if I had any infection. And, as usual, nothing was detected and my blood counts were good, so they sent me home on Friday. I continue to get the fevers at home, but they are low-grade and with a little rest, plenty of fluids and a blanket, they go away. The problem is, they keep coming back.

I still can't speak. It's been over a week now. Sometimes it is VERY frustrating not being able to communicate or get someone's attention. Like in the hospital. You know the nurse's call button? You push it and a moment later someone answers on the intercom and asks, "how can I help you?". They are unable to hear my response.

I really don't mind these minor little setbacks. My goal is to go through the entire treatment and get better. I realize that things will come up. I just want to stay on track and NOT fall behind schedule. 6 little fishies remain.

I'm back in the hospital again and have started cycle three. With pain medicine I can control the pain, but I still don't want to eat or drink very much. I've lost about 10 pounds so far. I know what I have to do to maintain the weight, but with the fevers and the sores, it has been a challenge.

The radiaion has not only affected inside my body, but my face and neck also. Most of last week while I was at home, my face and neck have been peeling as if I had a bad sunburn. As of today, my face has healed up nicely, but my neck still has some discoloration and a few scabs from sores. You can definitely see where on my body they have been giving the radiation.

The fight is on

The remainder of the week in the hospital was uneventful.  Eating and drinking have become more of a chore. There's not much pleasure left in eating anything sweet. My taste buds are pretty much gone.  Still, I enjoy a nice glass of water once in a while. Most of my diet has become Ensure drinks over ice and Scandi shakes. I must consume calories and proteins.

I mentioned in my previous blog that the radiation machine was out of order on last Monday. Well, it was still unavailable on Tuesday. So, all of us on the 6th floor of the head and neck cancer wing had to make up a treatment of 200 centigrey on.....Saturday! Oh well, time served! It's also good to know that they're not skimping on my dosage of radiation.

I have started to feel some of the effects of the chemo and radiation. Last Thursday and Friday, all I was able to do was lay in bed and sleep. I just didn't have the energy to do anything. I didn't watch movies, read books, write any blogs or emails. I tried my best to eat and drink, but that has really become something I do not look forward to.  I must think of food as medicine. And I've been reminded that if I lose any more weight, I'm going to have to have a feeding tube.

Over the weekend, my mouth sores and throat got worse and I lost my voice. Speaking is now a chore.
Still, I manage the pain so that I'm able to swallow and I find myself popping all sorts of pills throughout the day. I'm following quite a regimen. Besides all of the pills and injections, I'm administering my own daily IVs. Also, I have three different mouth washes and treatments for my mouth that I must do at leat 4 times a day. And, I have special lotions to put on my neck and face, lips, hands and feet that I must apply several times a day. My face has peeled as if I were in the sun and I pretty sure that is what is going on inside my mouth and throat as well.

Today I saw my oncologist. She asked me to describe how I was feeling. Miserable was not the right word. Uncomfortable was more accurate.  She said I looked pretty good for this stage of the game. I must not lose any more weight or else...But overall, I know I'll get through this.  By the way, I removed another fishie.

Cycle two

Quick update on how I'm feeling.  

I seem to have the pain well managed now.  So I am now eating and drinking enough food throughout the day.  It takes me a long time to each a meal because swallowing is still a chore, there is tightness on my lips and gums and I still have a few sores in my mouth and around the tongue.  But on Sunday morning when I couldn't even take a sip of water,  I realized how much I appreciate every swallow I take now.  I've learned to really appreciate drinking water out of a glass rather than a plastic cup or bottle. To me, the difference in taste is significant. Try it out sometime.

Today (Monday) I had only one radiation treatment as one of their machines was out of service. They gave me the standard dose of 200 centigrey. When I have two radiation treatments, I get 150 centigrey for each of the two.  So having the two treatments at 150 centigrey (or 300) is considered more aggressive treatment. The chemo treatment is the same as cycle one. The only difference is that they gave me extra hydration because of the fever I had last week and I had a blood transfusion of 2 units. I must say that I felt like I had a lot more energy after the transfusion and I was able to speak French fluently! Oo la la.

I've been eating well,  focused on proteins and carbs. I've also stocked up on the Ensure and Scandi shakes which provide me the protein and calories that I'll be needing in the very near future. I've dropped about 5 lbs. this past week. Now I weigh 196. I still can't imagine losing 40-50 lbs. That's thinner than my high school weight. I was always about 180-185.

I feel great that the treatment continues to move forward.  I'm anxious to get through cycle two. Karla and Jessica are coming to visit me tomorrow. Jessica had an appointment in nearby downtown. So they'll stop over after that for a short visit before hurrying back to school in the afternoon. Last time they were here, we played battle ship and 5 card draw.

Well, that's all for now.

Peace

Detour

Remember the "honeymoon" week wasn't feeling too much like a honeymoon? Well....

Labor Day weekend was nice.  Some of our closest friends had an amazing Labor Day party on Sunday in one of the forest preserves. It was a great day and everyone had a blast. I was feeling pretty well and eating and drinking normally, but I could tell there were changes happening inside my mouth and throat. On Monday, I woke up with a very sore throat, so I started taking more pain medication.  I also had a low-grade fever throughout the day.  Tuesday was a little worse, so more pain medication. I also had to go to the University of Chicago for an appointment and have my blood work done.  When I got home from the hospital Tuesday evening, I took my temperature. 100.9.  Remember, I'm supposed to go to the ER when my fever is over 100.5. So, I took some Tylenol and the fever went down. Phew!

Unfortunately, that's not the end of the story.  I woke up at 4am the next morning shivering. My temperature was 101.5. After more Tylenol, the fever went away, but never completely. I still had a low-grade fever.  I told Karla that since I responded so well to the Tylenol, we should wait to see if my fever spiked again before making the decision to go in to the hospital. Karla didn't like this idea, but I was determined to stay in bed.  I got up around 7am and Karla had already left for work. The kids started school this week and had to be out the door around 8:45.  It was at that time when I started shivering again.  The chills were so bad, that I was shaking uncontrollably. That's the last image Jessica and Jakob had of me as they walked out the door on Wednesday morning.  I crawled back into bed and tried to warm myself up.  I took my temperature when Karla called to check on me. It was 102. 

I arrived at the Emergency Room around noon. I knew the routine. Hook me up to IV's, draw some blood, pee in a cup, chest x-ray, and answer many questions. My mouth pain was intolerable by now, so they gave me morphine. Low dosages I think.  It helped a little bit, but swallowing was still extremely difficult. A few hours later I was admitted into my own private room with a window view of the wing of the hospital I spent all of last week in. No matter. All I wanted to do was to sleep anyway.

The doctors did not find any signs of infection, though my throat was completely raw.  It was a tough 3 days, but at least I was well cared for and closely monitored. I couldn't eat anything.  I did manage to get down a couple Ensure drinks. Today (Friday), I had a low-grade fever a couple of times, but overall I felt much better. Perhaps my throat and mouth are on the mend or maybe I am managing the pain a little better.

By early afternoon, the doctors were faced with a decision.  Should they send me home knowing my fever may possibly spike again or keep me in the hospital, continue to monitor me until Sunday when I am to be re-admitted for treatment anyway?  I'm glad they allowed me to join the debate and I feel that I presented a very persuasive argument for why they should send me home. After all, Tylenol has always knocked out my fever. I could always go back.  I think I pulled at the doctors' heart strings when I said that I really miss my kids and they miss me. And it was, after all, their first week of school.

Well, here I am at home. It's 2:45am and I can't sleep. That's usually when I write these postings anyway.  My temperature is 100. More Tylenol please.  I was able to drink a shake and I ate cottage cheese and some jello. I believe my throat is getting better, but only time will tell. I'm hoping to eat well tomorrow (today). This next week, I've been told I will have a blood transfusion to help with my blood counts and to make the radiation more effective.

I am very grateful to have a day at home with my family before going back to U of C.  Lastly, did you notice the fish?  Only 8 left.  I must stay on course.

Cycle one

They called the first week in the hospital the "honeymoon". This is the time when I got to know all of the friendly faces, the procedures and routines and how to care for myself during the off week. It's also the honeymoon because the body doesn't react to all the chemo and radiation until late in the week and when you return home. Then, the honeymoon is over. I'm not agonizing now (Saturday), but it does not feel like a honeymoon.

I completed the hospital stay of cycle one this past week from Sunday to Friday. During my stay I was given three different chemotherapy drugs and had radiation treatments twice a day.  On Sunday evening, the nurse prepared my double power port with two catheters in order to infuse the first drug 5-FU (aka Fluorouracil). This drug was infused the entire time I was in the hospital. Unfortunately, last week my scans revealed a small clot near my port and the doctor on call decided not to use the port for the infusion. So, they started an IV in my left arm. On Monday, however, when I met with my regular oncologist, it was decided to go ahead and use the port for the infusions and to treat the clot with a blood thinning drug which I am to administer to myself twice daily by injection until my port is taken out. A small bump in the road. Also, on Monday, I was given the second chemo drug Taxol (aka Paclitaxel) by infusion. This drug is only given to me on Mondays of my hospital stay. Lastly, I am given a drug called Hydrea by pill twice a day. The first pill given two hours before my first radiation treatment, the second twelve hours later. All three of these drugs have a long list of side effects. The most common are low blood counts, fatigue, mouth sores, hair loss (not a problem - not much left) and poor appetite.

Radiation was an interesting experience. In the mornings and the afternoons, I am picked up by a nice person whose job it is to make sure I get to where I need to go.  We take an elevator from the 6th floor all the way down past the basement to the sub-basement of the hospital. There we walk through many different long corridors, turning, pushing buttons to open doors, a left then a right. Good thing I have my guide. After 10 trips back and forth, I still don't know where I'm going. When we arrive, I sit and wait to be called. A few minutes later, I go into a radiation room and prepare for my treatment.  I must lie down on a board with my head and shoulders in the cast that was made for me. Then, I am adjusted. "Scoot up a little. Chin up. Move your shoulders to the left. OK, lie still, here comes the mask." I appreciate how meticulous and precise these people are. They must position my body perfectly before the radiation treatments.  The mask is then clamped down over my face. It is a bit uncomfortable at first, but I've gotten used to it. The radiation treatment lasts about 20-30 minutes and there are 16 different radiation fields for my treatment.

The effects from the radiation treatment and the chemo are beginning.  I can still eat, however, I don't have much of an appetite. I am told to think of eating as taking medicine.  Eat as much as I can, at least 2500 calories per day.  My new mantra is "proteins and calories". 

Now, I am back at home to recover from what was done to me throughout the week. My radiologist told me yesterday that they slapped me and I won't feel it until this week. I was given quite a welcoming party. Karla, Jake and Jess had signs up on the walls and I was greeted with their very big happy smiles. That's the best medicine.

I'll be busy this week taking care of myself. I have quite a regimen to follow, including putting on lotions, lip balm, giving myself shots, tongue and mouth excercises and figuring out my meals. Whatever I must do, I will do and I will enjoy this temporary reprieve until I return to the hospital a week from Sunday, September 12th.  By the way, each fish above represents one week of my treatment. I removed one. Nine remain!

What a week

I've had a very hard time writing this next posting. Partly because I started school on Monday and there just hasn't been a lot of time, but also because I experienced a lot of emotions this week and I've struggled with how to express what I've been feeling. Even now, as I'm writing, so many thoughts are running through my head. So many of the little moments, the interactions I've had with colleagues and students that I experienced this week have affected me in such a huge way. The small gestures of support and encouragement that I received throughout this week from colleagues and students have made me feel so good. They brought tears to my eyes and I find myself getting choked up thinking about all of the love and kindness that people have gone out of their way to send to me. It makes me feel truly blessed. This week, students and colleagues have come up to me to give me hugs. Not just a pat on the back, but real strong, meaningful hugs. Sometimes a hug says so much more than words. I've found notes and little pictures on my desk at school. They always brighten my day. Books, hats and other items were also given to me. I appreciate all of these thoughtful gestures. They have shown me how much people care about me. That feels good and it will undoubtedly give me the strength and the will to get through the tough times that are ahead.

I am also reminded that other people are going through very difficult times in their own lives. Everyone has obstacles thrown at them sometime in their lives. I am dealing with my own now, but I am reminded of obstacles that I have had to overcome, like when my own father passed away at the age I am now. Old emotions that I had buried are resurfacing as I think about my own children or some students who are dealing with their own illness or that of a family member. 

I guess the one thing that stands out from this past week is that I can honestly say that I truly love my job, the place I work, Glenbrook North High School, my colleagues and my students. I don't think I've ever realized how happy that place makes me feel. I know how fulfilled I have been teaching there for the past ten years and I never thought I took it for granted. I've always appreciated every aspect of working at GBN, but I know that now I have an even deeper appreciation.

This has been a great week. Of course, I haven't had chemo since August 17th and everyday that passes I feel stronger and stronger.  It's good to see how quickly my body bounces back. On Monday, I was back at school. I was so happy to get back to work, to see my colleagues and to meet my new students.  I was a bit anxious because I knew that many of them were just finding out what I was going through and that when they saw me, it would be apparent. Shortly after our first meeting I realized that there was no reason to be anxious. Everyone greeted me with such warmth and love. On Wednesday and Thursday, I met my new students. I did my best to break the ice quickly about my situation and I was so impressed how well they all responded to the news. I'm glad I had the opportunity to connect with my students. They truly energized me this week and I can't wait to get back. 

Lastly, Tuesday was my day at the University of Chicago.  First, I had an appointment in radiology for CT scans of my head, neck and chest. Then, I met with my ENT doctor for a post surgery check up. At this appointment, I received some very encouraging news.  The doctor was able to compare the scans I had in July with those I had just taken that morning. She looked at the lymph nodes from both scans and determined that they had shrunk by about 25%.  Needless to say, I was very pleased. The last appointment I had was with my oncologist to go over the logistics of the next part of my treatment; the WO WO treatment (week on, week off) and it begins this Sunday.

My Treatment Schedule

Beginning Sunday, I will go into the hospital for five nights and given 3 different chemo drugs and radiation twice daily.  If everything goes as planned, the dates I will be admitted to the hospital are: 8/29, 9/12, 9/26, 10/10, and 10/24.  On the off week, I will be at home and I will have clinic appointments to go to on Tuesdays.

Done with phase one

I was at U of C yesterday (Tuesday) for my last infusion of the induction chemotherapy. Everything went very smoothly.  Karla and I arrived at 6:45am so I could quickly get my port accessed, have my blood drawn and get to an appointment down in Radiology as close to 7am as possible.

Down in Radiology, they wanted to make another head cast for the radiation part of my therapy. Because I had lost my hair since the last time they made the cast, it didn't fit as snug as they had hoped. The purpose of this cast is hold you completely still during the radiation. I'm not certain why they didn't ask me to cut my hair before the first time they made the cast. It seems that would have been a feasible option. They also did a contrast scan of the head and neck. Fortunately, it was not an unpleasant experience. All the people who work down there are very friendly. We were joking about how I "used to" look like George Clooney and David Hasselhoff and Jon from the Garfield cartoon.

After that appointment, we went back up to the infusion area where I got my LAST dose of Taxol. Again, not an unpleasant experience. Everyone who works there has been cheerful and friendly.  In the infusion room, there's around 30 chairs with curtains for privacy. It's not very private though. The doctors and nurses always close the curtains when they come to talk or ask questions, but everyone around can hear every word. I guess it makes you "feel" like there's more privacy. Anyway, yesterday, I was seated next to a guy who was there for his first treatment. A rookie! He was a very friendly guy who wanted to talk and he and his wife had a lot of questions.  It turns out that he has the exact same diagnosis as me. The only symptom being the swollen lymph node in his neck and they found his primary tumor on the base of his tongue just like mine.  This guy is 60, very fit, never smoked and doesn't drink. Wow! I never realized this type of cancer was so prevalent and undiscriminatory.

Coincidentally, the nurses were handing out SPOHNC awareness bracelets (Support for People with Oral and Head and Neck Cancer). So now, Karla, the kids and I are all wearing them. Here is the website if you're interested in supporting the cause to raise awareness for this type of cancer. http://www.spohnc.org/wristbands.php 

Lastly, I'll be giving myself injections of this drug (Neupogen) to help boost my white blood cell count. Expectedly, it was a bit low due to the Chemo. My nurse gave me a 5 minute lesson on how to give myself a shot and then asked me if I wanted to give myself a "practice" shot. Hmm....I thought about sticking myself with a needle AND for no apparent reason and decided.....ok, why not! My tolerance for pain and fear is pretty good these days. So the nurse handed me a syringe (and needle) filled with a little harmless saline solution. I was instructed to pinch the skin on my abdomen, stick the needle in and inject. I must admit that there was a long pause as I held the needle close to my pinched skin. Then I thought of saving myself three trips down to U of C to get this little, itty bitty shot. So, I stuck myself and injected the saline solution. Done! My kids are very interested in watching me do this. Jessica said she would like to actually give me the shot.  Hmm...Another thing to ponder.  We'll see.

Next week, I go in for various appointments; blood work, a visit to my ENT, Oncologist and then down to radiology for a couple more scans of the head, neck and chest. Then, August 29th I go for my first 5 day stay in the hospital for phase 2; chemo and radiation.

Just a quick update

There's not much to tell.  This past Tuesday, I was at U of C for another infusion of Taxol. I had my blood checked and everything was back to normal. I also had a very thorough hearing exam because one of the side effects of the chemo is hearing loss. I experienced a little hearing loss to high pitched sounds (like the beep of a thermometer). Other than that, my hearing is outstanding.

I've been feeling pretty normal. Not too much fatigue, appetite is good, energy level is up.  One thing I have noticed is my appreciation for the days when I'm feeling well.  I don't take them for granted like I once did. It seems that I am tolerating the new chemo drugs much better than those in the first round. (Hopefully that won't change now that I stated that.)

Lastly, I just have to say that I feel so blessed to have so many of my friends and family reaching out to me and offering support and prayers to us. I can't tell you how deeply appreciative I am for all of your kind words and gestures. My spirit is strengthened knowing that you are behind me and my family. Also, it has been great to reconnect with many of you and I am reminded of the great friends I have had (and still have) in my life.

Thanks for everything. God bless you all.

Round two of phase one

I've been feeling well. My energy level and appetite are almost completely normal. The only time I was reminded of my "situation" was when I looked in the mirror. My hair loss seems to have slowed down, but it's still coming out. It's very thin, but with a hat on, people say it looks like a very short hair cut. 

This past Tuesday, August 3rd, I began a new regimen of infusions. I was given two different chemo drugs: Carboplatin and Taxol. Though the side effects of these drugs are very similar to those of the drugs I had been given in round one, they say I will tolerate them much better.  Only time will tell. As of today (Friday), I have only experienced some fatigue and some joint pain, but it has only been three days. The last time I had an infusion, it was after the 5th day when I began experiencing all of the side effects.

I am now in my fourth week of treatment and still in phase one called induction chemotherapy.  This phase will last for four more weeks. Every Tuesday, I'll be going to the U of C for blood tests and infusions of Taxol.  On Sunday, August 29, I'll begin phase two when I stay in the hospital for five nights and receive chemo and radiation concurrently. Phase two will last for ten weeks.

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.

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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.