My Personal Journey Through Head and Neck Cancer – #5 – Chemotherapy

Posted on February 27, 2018 by Pat Camalliere

Chemotherapy/Immunotherapy

My oncology team recommended, in addition to thirty-five radiation treatments, eight infusions of Cetuximab.

Cetuximab is not the only medical (pharmaceutical) option for treatment of head and neck cancers. Other agents, such as Cisplatin, fluorouracil, Paclitaxel, and more, are used depending on each specific patient and recommendation of the oncology team. In my case, Cetuximab is considered to be effective for advanced stages of squamous cell head and neck cancer. The benefit for me is that it has fewer side effects than Cisplatin, which would be the next choice.

Surgery, radiation and chemotherapy were all considerations for my disease. I wanted to know why I needed chemotherapy in addition to radiation therapy.

Although surgical advancements are being made at a rapid rate and my surgeon has my full trust, surgical treatment can carry a risk for significant function and cosmetic disability, such as loss of the larynx (voice box), and/or mandible. My surgeon never suggested I begin with a surgical option, as he felt there were successful ways to treat me that would avoid such risks. If any cancer remains after my courses of radiation and chemotherapy, I was told surgery could be an option, but would be limited to specific areas of known disease and less extensive. We hoped no surgery would be required, and this was a better option in my mind.

Radiation is directed to areas where I have known disease and areas where the disease is most likely to spread. Fortunately, doctors today know a lot about how squamous cell tumors at the base of the tongue spread to defined areas, and those are the areas that receive attention.

My PET scan showed that my cancer has not spread past my neck. It has looked at other areas where this cancer spreads, such as the lungs. I don’t show cancer in these areas, or anywhere else that was not already known. So far, so good.

But might there be areas of microscopic spread that do not show? Not likely, but not impossible. This is where Cetuximab comes into play. Cetuximab will improve the effectiveness of radiation therapy, and thus the success of my cure. Cetuximab (Erbitux) is a chemotherapy agent called a monoclonal antibody that kills cancer cells in a different way.

How does it do this? This question is best answered by oncologists, but a brief explanation would be that what a monoclonal antibody does is work with the body’s own immune system to attack cancer cells. It does this by blocking the function of a protein carried in cells that causes the cells to grow and divide (EGFR, or epidermal growth factor receptor.) When introduced into the body, Cetuximab will bind with and “tag” the cancer cells so that the body’s immune system seeks out and kills the cancer cells.

One can see that man is working hand in hand with God here. The medical scientist finds a way to prompt God’s handiwork to do the job, and we marvel at the result.

I have already described my first infusion, but now will provide more detail.

My infusions will take place once a week but I have radiation treatments daily Monday through Friday. Since “chemo day” happens on the same day I have a radiation treatment, it’s always a long day. I prepare for that by packing a little insulated bag with what I need for the day, and assemble comfort items for waiting periods. The bag was a gift from a friend received from an organization called #BetterEveryDay that supports people receiving cancer treatment. You can locate them on Facebook.

I bring a snack, lunch, a spoon, some containers with mouth rinses, skin lotion, hand sanitizer, and any medications I will need throughout the day. The infusion nurses will provide me with water and tissues, and will give me a warm blanket, but I find it helpful to also bring a throw or sweater. I dress in comfortable clothes.

Although I’ve not had a problem, some of the medications I am given may cause drowsiness or make me ill, so Chris does the driving. This allows me to get some things done while he drives, like using a mouth rinse or doing speech therapy exercises. Only one guest is allowed in the infusion room.

I bring something to entertain myself during the wait, usually my Kindle and my iPhone. There will be time between appointments and the infusion will take up to two hours.

When I enter the large waiting area, I sign in at a kiosk and receive a registration number. When my number is called, usually only a few minutes, I proceed to one of ten registration stations. An attendant looks me up on a computer, finds my registration, and confirms my name and birthdate. An appointment packet is printed and handed to me, I am signed in, and I return to my seat, waiting to be called for lab tests.

Soon a medical assistant calls my number and I follow the assistant to a room where my blood is drawn. Two tubes are taken. The lab will do a blood count, blood chemistries, and a magnesium level, since Cetuximab depletes magnesium. After my blood is drawn, I return to the waiting room again.

Before long I am called to an exam room by another assistant who takes my temperature, oxygen, weight, and blood pressure. A nurse practitioner then enters the room and goes over my condition, complaints, and answers questions, entering all the information into a computer. She then listens to my heart and lungs, examines my mouth and any areas of concern I may have, and checks my back and abdomen for tenderness. She spends as much time with me as I need until all questions are answered.

My oncologist then comes in, having reviewed the information, does another examination, and answers any additional questions. By that time my blood tests have been completed, and the infusion for the day is ordered, the dosage calculated and sent to the pharmacy to be prepared. I have been told that multiple checks of doses are done between the doctor and the hospital pharmacist to insure accuracy.

I then walk over to radiation therapy for the day’s treatment, and then return to medical oncology. I check into the infusion laboratory and wait to be sent back to the infusion room (pod). I make use of time between appointments to eat a snack, take medications, apply skin lotions, or complete other items on my daily care list I can fit in. My waits are relatively short, and I move quickly from one appointment to the next. Nonetheless, I am beginning to feel the effects of a long day.

I am greeted by the infusion nurses and taken to a reclining chair. There are ten “stations” in the room, some more private than others. I place my belongings on a guest chair and make a trip to the restroom. I know that the fluids that will be “pushed” into me in the next couple of hours are going to make me uncomfortable if I don’t start with an empty bladder, and, in fact, maybe even if I do.

When I return I settle into my recliner, put my feet up, and wait for my nurse to put in an IV catheter. I watch her assemble what she needs, use sanitizer on her hands, and put on gloves. She looks at the backs of my hands and wrists to select a vein, and scrubs it with an alcohol wipe. The catheter is flexible and very thin and I only feel a momentary sharp pinch. I am fortunate that I have good veins in both hands, so this almost always goes smoothly for me, and I have little discomfort. She tests the line by flushing with a syringe of saline, and pulls back to be sure blood returns into the syringe to assure it is working properly. Sometimes this feels cool.

The nurses are friendly and we chat while this goes on, getting to know each other. One of them is someone who worked with me years ago and we catch up, sharing memories and laughs. The atmosphere is light and positive.

Once my IV line is inserted, I am given pre-infusion medications. Before this is done, I am asked to identify myself, my wrist bracelet ID and my medications are scanned into a computer on a rolling stand. It is reassuring to know that this precaution is taken and I cannot be given the wrong medication in error. I receive three pre-infusion medications through the IV: Benadryl prevents allergic reaction to Cetuximab; Decadron helps to control nausea and boosts the effect of Cetuximab; and Aloxi is given to prevent nausea.

Many patients will need only the Benadryl. Nausea is not a common side effect of Cetuximab, but I am exceptionally sensitive to nausea and vomiting. My first infusion demonstrated that. This is not just a comfort issue, as nausea will prevent me from eating, and eating is vital to the success of my therapy.

The three syringes are injected into my IV. Aloxi will burn if it is injected too quickly, I discovered, so I remind my nurse to inject slowly, and there is no sensation except sometimes of coolness. After this is done, I will need to wait up to thirty minutes for the medications to take effect.

When the time is up, two nurses arrive with a small bag of clear fluid, which is my infusion of Cetuximab. It has been prepared in the pharmacy shortly before my arrival. Again the bag and my wrist ID are scanned, and one nurse repeats my name, reads the label on the bag, and sets the program on the pump that dispenses the Cetuximab, while the other nurse confirms the information with the order in the computer, the settings on the pump, and records the details of the infusion. Check and double-check. The bag of Cetuximab is hung on an IV stand, attached to the pump and to my IV, and Cetuximab begins to drip slowly into me. I don’t feel anything unusual during the infusion, which will take an hour.

Although I’m prepared with reading material and the general atmosphere is relaxed, I find that I have little desire to read, despite the fact that I am a lifelong avid reader. I usually unpack and eat whatever I have brought for lunch, and then I generally lean back and shut my eyes. I may check or send emails or texts, and sometimes I sleep briefly. Although the hour usually goes by quickly, I may need to make a trip to the restroom. This may seem awkward, but the infusion pump runs on a battery and is easily unplugged, allowing me to roll it to a nearby restroom without assistance.

When the infusion bag is empty, the pump beeps and the nurse returns to disconnect me, remove the catheter, and send me on my way. By now it is late afternoon or even early evening, my day is done, and Chris and I head out to fight rush hour traffic. I will eat something as soon as I get home and check off everything essential on my daily medical to-do list, as I am tired now and will want to crash at the first opportunity. And I do just that.

I must stress again that every patient has a different experience. Some feel weak or ill after chemotherapy, but I found that the premedications I was given before my infusions actually gave me two days when I felt a little better, since I was free of nausea and the Decadron gave me a little energy boost, although I was also a little “fuzzy” in the head.

Next Post: A Day in the Life of a Cancer Patient

Posted in Head and Neck Cancer | Tagged Cancer, Cetuximab, chemotherapy, Head and Neck Cancer, immunotherapy, monoclonal antibody, personal cancer experience, tongue cancer | 1 Comment

My Personal Journey Through Head and Neck Cancer – #4 – Radiation Therapy

Posted on February 20, 2018 by Pat Camalliere

Radiation Therapy

What treatment options were there for my cancer? Surgery, radiation, and chemotherapy are all used to treat cancer. Surgery removes areas of cancer directly by cutting them out, but what if the area is hard to get at or would be disfiguring, as in my case? Radiation therapy is targeted. It kills cancer cells and normal cells, but only those in the field of radiation, not the whole body. Chemotherapy uses a variety of medications to treat the whole body to kill or stop the growth of cancer cells and prevent their spread to other areas of the body. Some people need surgery, some need chemotherapy, and some need a combination of these therapies.

There are many ways therapy can be delivered, and many factors to be considered by the cancer team. Timing and whether or not radiation is given at the same time as other treatments depends on the type of cancer and other factors. Some patients need radiation before surgery to shrink the size of the cancer, some during surgery. Sometimes radiation is used to kill cancer cells that may remain after surgery. Or surgery may not be recommended at all.

When I was first given my treatment options, I was uncertain. I worked in health care administration for thirty-seven years and have a fair understanding of medical issues. One thing I learned was to know when to stop torturing myself with questions and let the medical professionals do their job. Being personally involved in your care means understanding and cooperating with the team, communicating with them freely, and letting them advise you.

Trust is a big part of this process, and should be developed as soon as possible. For this reason, I never spent a great deal of time looking for answers on line, but instead I asked my doctors directly and got answers that pertained only to me, not some patient having an entirely different experience. Therefore, what I am writing should be taken in that light; my experience is a single experience which will differ for everyone.

Not all head and neck cancers are treated with radiation the same way or using the same machines. Some machines use straight (linear) beams; others machines use beams that travel around the treatment area and send radiation at the cancer from many directions.

Whether to use radiation therapy and the type of radiation therapy depends on many factors; not just the type, size and location of the tumor, but factors such as how close it is to other areas of the body, general health, and age.

Although in some cases large regions at risk for containing cancer cells are treated in wider areas of the body, my doctors felt it was safe to treat me more selectively, concentrating on the areas of known cancer at the base of my tongue and in my neck. Although the majority of my neck would be treated, lower doses of radiation would be used to elective areas, higher doses to those with known disease. I would have surgery only if any cancer remained after treatment.

The challenge of radiation therapy is to kill all existing cancer cells while harming as little as possible of normal, healthy cells. This is very important for cancers in the head and neck, since there are many vital structures in the area that need to retain normal function if at all possible. Think about everything that happens in the mouth, throat, and neck.

The mouth contains not only teeth and tongue, but also gums, mucous membranes, salivary glands, bones of the lower face and jaw, muscles, blood supply, and nerves. The tongue determines how food tastes, and the salivary glands produce a fluid that mixes with food during the chewing process to prepare it to be swallowed as a ball, or bolus. The tongue is also involved in speech, chewing, and swallowing. None of these are things I want to do without.

The neck connects the head to the rest of the body, providing pathways for circulation, nerves, breathing, and digestion. Major arteries and veins supply circulation to the head and neck, including the brain. Major nerves, including the cranial nerves, control sensation, movement, and organ functions in the head and neck, such as hearing, smell, and taste. Lymph nodes and ducts are along the cervical spine, face, and jaw. The neck also contains muscles, bones, skin, and thyroid and parathyroid glands.

In the throat, or lower neck, the pharynx connects the mouth to both the lungs and the esophagus, separated by a structure called the epiglottis, which shuts during swallowing to prevent aspiration into the lungs. The larynx, or voice box, is in the lower neck.

My primary tumor, at the base of my tongue, is in close proximity to many of these structures, including the taste buds, the salivary glands, and the epiglottis. I really want to be able to taste my food, have saliva, and be able to swallow. I have been told there will be some impairment during treatment, but my targeted treatment should allow most of the function to remain or return.

Radiation is a beam of energy, and beams travel in straight lines. Knowing this brought up a lot of questions in my mind. How does the beam destroy cells in the back of my mouth without taking along everything it passes through, like my jaw, my teeth, the back of my throat, the roof of my mouth? What about the cancerous lymph nodes that are penetrating some of my neck muscles? They are more superficial, but to what level will the beam be directed? Will it go past and destroy the muscles in my neck or other structures? Some affected nodes are under my jaw. What happens to that bone? Will I lose teeth? Will there be any effects on my brain?

This is where I trust my radiation oncologist and today’s remarkable technology. When I had my pretreatment simulation, a careful slide-by-slide delineation process was used to define the treatment field and pinpoint the exact places on my body where radiation beams will be aimed.

Based on a CT scan that was taken the same day I had my mask made, my radiation oncologist worked with radiation dosimetrists and physicists to create my treatment plan. He marked critical structures of my anatomy, areas to be treated, and how much dosage was needed for each area of treatment. The criteria were calculated over a two-stage, thirty-five dose plan by radiation dosimetrists, and approved by radiation physicists who checked the calculations and took responsibility for quality assurance. When all three agreed on the plan, it was run on a phantom patient on the same machine I am treated on.

All of this took place in the week between making my mask and my first treatment. I found this not only impressive but reassuring. I was bound to do well with this level of planning going into my care.

My machine is a tomo therapy unit. It delivers many small beams of radiation at my tumor from different angles for the best distribution of dose.

The radiation will not kill cancer cells immediately, but they will continue to die over the course of treatment and for weeks or longer after my therapy is done. I receive radiation therapy every Monday through Friday for seven weeks. On Saturday and Sunday I rest and any normal cells in the path of delivery have a chance to recover.

I have already talked about the making of my mask. Here’s what it looks like:

Radiation Therapy Mask

Me in my mask with radiation therapists, Tomo Therapy Machine

Two receptionists greet me when I arrive. I don’t have to tell them my name. They know me and attach an ID bracelet to my wrist. We pass the time of day, then Chris and I take a seat in the waiting room until I’m called.

My radiation therapists feel like friends and I’m happy to see them. I trust them completely. I remove my upper clothing except for the tank top I wear beneath. I climb onto the table, and I’m covered with a warm blanket, very welcome because this room is always cold. “Are you ready?” I’m asked.

The techs place my mask over my face and fasten it to the table. It’s very tight. I can’t really open my eyes fully, but I can see enough through my partially-opened eyes should I want to. Most of the time I only peek and keep my eyes closed. I can feel the mask press against my nose, but can breathe normally. I can barely wiggle my lips, but I can be heard if I want to say anything through slightly parted lips. My shoulders are held tight against the table, but my arms are free to tuck under the blanket. I have an oxygen monitor attached to one finger.

The techs leave the room. I know they are in a control room with full view of me on a monitor. They have told me to move my legs violently if there is any problem and they will stop the test and attend to me. This is reassuring.

When I asked, one of my therapists showed me what is done in the control room. After I am immobilized on the table, a CT scan is taken to get that day’s exact position. This is overlaid and matched with the details of my planning CT, so that each area to be radiated gets the accurate dosage for that day. There are multiple areas of delivery, and multiple “slices” of CT images to be matched. After the therapist completes the matches, the second phase of the process, the delivery of radiation, is done.

Me, being immobilized in Tomo Therapy Machine by Radiation Therapists

Control Room for Radiation Therapy

Soon I feel the table move, drawing me into the “donut” or “bore.” There is a whirring sound, and then a loud clunk as the CT scan begins. I try not to move a muscle while the scan is taken. I want to clear my throat, swallow, or wrinkle my nose, but I do my best not to. I’ve been told this won’t affect the scan, but I always err on the side of caution and try to minimize any movement. After about three minutes, the table moves again, withdrawing me from the donut. The scan portion of the procedure is done. I remain on the table while the therapist matches my daily session to the exact position I am in today.

After a couple of minutes, a brief rattling sound tells me the radiation delivery portion is about to start, and I am drawn back into the donut. Soon the rattling starts again, becomes continuous, and circles around the donut. I have been told the sound is from opening and closing of gears in the bore that direct the beams to each precise programmed location. The treatment part of the procedure lasts about seven minutes.

The rattling makes me think of an American Indian shaman or medicine man. I included a medicine man in my book, The Mystery at Black Partridge Woods, so this makes me smile. The sound is one I end up anticipating and welcoming, a pleasant and familiar sound that tells me I am on my way to curing my cancer. I envision a scantily-dressed man with a rattle behind my head, ceremoniously conducting his healing ritual.

I understand that some people feel claustrophobic both due to the mask and being drawn into the machine. I found the confinement of the mask reassuring and somewhat comforting, like swaddling must feel to an infant. I am a control freak who doesn’t like anything taken out of my hands or being confined, so I thought laying in the machine might make me anxious. But I can see enough of the room that being in the bore is not alarming. Perhaps I don’t feel confined because I know how important stillness is to the success of my treatment, and know it is the confinement that helps me stay still.

To prepare myself in the event I became claustrophobic, I studied some meditation techniques, and I tried them at first but soon I didn’t use them. Instead, I like to do something routine that calms and slows my heart rate and allows me to measure time. I found that prayer was the ideal method for me. I have the reassurance of seeking help from heaven at the same time that the routine repetition of the Our Father, Hail Mary, and Glory Be, much like counting sheep, relaxes me. I time the cadence of the prayers in a rhythm that matches my heartbeat, and I know that somewhere between repetitions six and seven the treatment will be over. At all times I know how much longer I will be on the table.

I was told I wouldn’t feel anything during treatment. Now and then I think I do. Sometimes it is a slight pressure in the treatment area. Sometimes a feeling of warmth. It doesn’t happen until near the end of delivery, is never exactly repeated on subsequent days, and very mild. It’s probably just in my mind. A novelist has to depend on her imagination, doesn’t she?

What could possibly go wrong with that little man waving his rattle and dancing behind me?

Next week: Chemotherapy

Posted in Head and Neck Cancer | Tagged Cancer, Head and Neck Cancer, personal cancer experience, Radiation Therapy, Radiation Therapy for Head and Neck Cancer | Comments Off

Head and Neck Cancer: A Personal Journey #3 – Cancer Treatment Begins – The First Two Days

Posted on February 13, 2018 by Pat Camalliere

Head and Neck Cancer: A Personal Journey #3 – Cancer Treatment Begins – The First Two Days

On January 2, my husband, Chris, drove me to Rush University Medical Center for minor surgery, an exam under anesthesia and biopsy. I was not very nervous. The surgery was a minor one, and I had had some surgeries under conscious sedation in recent years. I thought it would be a similar, non-stressful, experience. I expected a sore throat afterwards, but general anesthesia is done with intubation, and I completely underestimated the postop effects.

The reason for the surgery was to get detailed information about the primary lesion (tumor) at the base of my tongue, which would be used to confirm my diagnosis and to get detailed pathological information as well as gross description and location to be used in planning my therapy.

When I awoke from anesthesia, I was astonished by the amount of secretions that kept accumulating in my mouth. I had to grab another tissue to remove them as soon as I put one down. There was no significant pain, but the secretions were quite unpleasant. This went on for two to three hours. When it finally diminished I was brought some apple juice and I drank it easily, in fact, I asked for a second. I left the hospital at about 4:00 pm. That evening I was able to eat a small omelet. I had sharp pain on swallowing and a sore throat, but it was not awful, and I was able to take my medications (pills and capsules) without difficulty.

The sore throat lasted about two weeks, and during that time, although swallowing was uncomfortable, it was not painful. I did experience loss of appetite. It was almost two weeks before the throat discomfort went away, and it was probably due more to the intubation than the biopsy. I lost five more pounds during this time, on top of the five pounds I lost when I was stressing over my diagnosis.

The day after the biopsy, January 3, I was back at the hospital for a radiation simulation and staging and for my first chemotherapy infusion. It was going to be a full day. Dolly, my oncologist daughter-in-law, suggested I eat something substantial for breakfast, like oatmeal. It was a challenge, but I got it down.

I reported to the oncology department and signed in. My baseline laboratory tests had been taken the day I had my treatment conference before the holidays, but for future infusions I would start with a laboratory draw. Some of the effects of treatment involve anemia, low magnesium, and other changes that need to be measured before an infusion is given.

Still concerned about catching an infection, I seated myself as far away as possible from others in the room. I eyed the masks available at check-in. I had been told I could wear one if I wanted to, but didn’t need to wear one unless I was sick.

As I waited to see my oncologist, I studied the crowded waiting area. I estimated the room seated about 75 people, and most of the seats were occupied. I studied the people, sorting out patients from those that accompanied them. A couple of patients were in wheelchairs, others had walkers, but most were ambulatory and getting around normally. A few slumped in their wheelchairs, and one woman curled up on her side on a sofa, clearly not feeling well. Those who looked obviously ill were in the minority. Few wore hats, none had the obvious rash I had been told to expect, and only a few wore masks.

I leaned over to whisper to Chris. “There are really a lot of people here, but most don’t look too bad off. Is that a good sign?”

Soon an assistant came out and called my number. Medical privacy rules prohibit the use of names. I was taken to an exam room where a staff member took my weight, temperature, oxygen and blood pressure. These factors would be used to determine and mix my chemotherapy dose for the day.

Cetuximab is not actually a chemotherapy agent, but a monoclonal antibody that works with the immune system to kill cancer cells. It is recommended only for very specific cancers: primarily metastatic colorectal cancer and squamous cell cancers of the head and neck like mine.

My oncologist’s nurse practitioner and the clinical coordinator came in and introduced themselves. They reviewed a patient handbook with me that explained such matters as who would be involved in my care and how to reach them, what the infusion experience would be like, known side effects, and more. I tried to listen to everything, but my primary concern at that time was side effects. I had a few personal fears.

Since my tumor was at the base of my tongue, I was particularly apprehensive about my ability to swallow. My mother, a stroke survivor, developed inability to swallow late in life and spent a number of years on a feeding tube, during which time my husband Chris and I were her caregivers. I wanted to do everything possible to avoid a feeding tube.

I knew that to avoid the tube I would have to be religious with mouth care, swallowing exercises, and nutrition. I couldn’t lose too much weight, but I had had little appetite since I discovered my swollen node and had lost weight already. Other factors, like changes in taste and dry mouth, would be likely to make this worse. But I was determined from the beginning to do everything I was told to do. I will be giving more detail in future posts.

Nausea was another big concern for me. I dreaded the thought of living with nausea for months, as I thought would happen with chemotherapy. I get nauseous for the most minor reasons. What was going to happen when my body went to war with my disease?

My oncologist then examined me and answered all my questions. She was smiling. Things looked optimistic. “You’re going to do well,” she said. I was given prescriptions for an anticipated skin rash, an antibiotic, and anti-nausea medication that I sincerely hoped would be effective, or better yet, not needed.

I was then sent to another building for radiation staging. Again, I met first with a nurse and then with the radiation oncologist. The nurse gave me a handout that explained radiation side effects and what to do about them. Some of these were skin changes, changes in taste, mouth sores, dry mouth, decreased appetite, and fatigue. I was given a bottle of medication to begin to treat my mouth preventatively, and a skin lotion.

My radiation oncologist then came in and answered all my questions, I was taken to the treatment room and introduced to my radiation therapy team, my CT machine, and my mask.

I will be devoting an entire post to the radiation therapy process, so I will be brief here. To protect vital neck structures not involved in my cancer, it is extremely important that I stay motionless while the radiation is delivered to specific disease locations. This avoids harming as much normal tissue as possible. I had to wear a mask during the process to immobilize me.

During this visit a mask would be made for me, a baseline CT scan would be done, and the target areas would then be calculated and programmed into the system that would deliver the radiation. I would not receive any radiation today, and it would take about a week for my radiation oncologist, radiation dosimetrists, and radiation physicists to program the radiation delivery.

I was asked to lay in the scanner, and a warm, flexible sheet of plastic mesh was laid over my face. Staff held me in place and formed the mask to fit tightly around my face, neck, and shoulders. The mask was surprisingly tight, but it was not a bad experience.

After all necessary information was gathered and my mask was made, I was sent back to Medical Oncology for my first infusion.

The first infusion is called a “loading dose,” and is double the normal dose I would receive on subsequent infusions. Cetuximab stays in the body for about a week, but this also means it takes longer to reach therapeutic levels. For this reason a larger dose is given to start at the desired level. The infusion was going to take about three hours on top of what had already been a long day.

I was seated comfortably in a reclining chemo chair, offered and welcomed a warm blanket, and an intravenous cannula was inserted into my arm. The only discomfort was a slight prick when my skin was punctured, and a little discomfort from the tiny flexible tube that remained in my vein. This was done without difficulty, and I was given an injection through the IV of Benadryl, to prevent possible allergic reactions. After waiting thirty minutes for the Benadryl to take effect, the intravenous drip of Cetuximab was started. I felt nothing.

Relaxing in the chair, I sent Chris to have lunch and to get me some yogurt at the hospital cafeteria. As the Cetuximab dripped slowly into me over the next two hours, I sat comfortably and read a book on my Kindle. After this, I was sent home, tired and a bit fuzzy from the long and stressful day, but otherwise fine. Once home, I had a light dinner and took my evening medications without problem.

I awoke at 2 am that morning with a headache, extreme muscle weakness, and nausea. Yes, the dreaded nausea. I took a Tylenol for the pain, choosing to avoid the pain pill I had been given that also sometimes produces nausea, got up, and sat in a chair. I have found in the past that sitting close to upright minimizes my nausea after a couple of hours and allows me to escape vomiting. The technique worked, the muscle weakness went away soon, and then the headache calmed with the Tylenol. About 4 am I was able to return to bed and sleep, but in the morning my nausea returned. I filled my prescription for nausea medication and began taking it. It worked.

I stayed in bed most of the next day, taking Zofran for nausea and Tylenol for headache and drinking Ensure, which I was able to keep down. When my son, Bob, called from Indiana to check on me, he urged me to get out of bed. By 7 pm I was able to get up and watch television for a couple of hours before going to bed for the night.

The following day I ate small meals and ran a couple of errands outside the house. By this time my headache was mild. I realized that a Scopolamine patch that had been placed behind my ear by anesthesia during my surgery could be contributing to my nausea and some lightheadedness I had been feeling, and I removed it. I continued to improve.

By January 6, four days after surgery and three days after my first infusion, I had no headache or nausea, more energy, and a little appetite was returning.

All in all, I wasn’t in a bad spot. I had a potentially-curable cancer, great doctors, caring and supportive family and friends, I had been given a treatment option that avoided extensive and risky surgery, and the situation looked bright. I just had to push myself through any unpleasantness that developed during the next three months. I could do this!

Next week: Radiation Therapy

Posted in Head and Neck Cancer | Tagged base of tongue cancer, beginning cancer treatment, Cancer, chemotherapy, Head and Neck Cancer, personal experience with cancer, radiation therapy for cancer, tongue cancer | 3 Comments

My Personal Journey through Head and Neck Cancer – Getting Ready for Treatment

Posted on February 6, 2018 by Pat Camalliere

Getting Ready for Cancer Treatment

Due to surgical scheduling availability and other factors, I could not start treatment for my cancer until January 2, but then things would move very rapidly. I would have preferred to begin immediately for peace of mind, safety, and to get things over with, but I was assured that this would not affect my care in any way, and things really had been progressing very rapidly.

As it turned out, the three weeks from diagnosis to treatment were very useful. I had been told to expect to have limited activity for about three months once my treatment started, two months of radiation and chemotherapy, and another month for recovery. So I had some time, but not a lot of time, to prepare.

At this stage I was more fearful of the treatment than I was of the disease. I felt sure the cancer would be cured—pretty sure. I had the best doctors, personal support of family and friends, and a good outlook. But I was the one who had to go through the treatment, and it scared me. Would I be vomiting for months? Would I be able to eat? Would I need a feeding tube? Was I healthy enough to withstand the fight my body was about to undergo? Would other problems crop up, related to, for instance, my blood pressure or heart? Would my airway be cut off so I couldn’t breathe?

I’ve always been a worrier, so I visited my internist to discuss my general health, ability to withstand the planned procedures, to be sure my blood pressure was under control, and to see if I needed medication for anxiety. My internist was reassuring. My blood pressure was going to go up and down during treatment, and would be dealt with if needed at the time. There was no point in trying to guess ahead. My health was otherwise fine. I normally like to push through on my own strength, but she encouraged me to take a low-dose anxiety medication if I felt I needed it. The anxiety was affecting my appetite, and it was important to keep my strength up. There would be enough opportunities ahead to tough it out, so I should not deprive myself of medications that would make my life better. This was all temporary, after all.

I went home with a prescription for Lorazepam, 0.5 mg. I was to cut the tablet in half unless I needed the full strength. When I filled the prescription, I was looking at a tiny tablet only 1/8 inch in diameter. “How am I supposed to cut something so tiny?” I asked Chris. “You’ll find a way,” he said. The pill was scored, and when I carefully lined it up in the pill-cutter, I got one piece that was half-size, and crumbs. I wet my finger, picked up and swallowed the crumbs, storing the single piece for the next time.

The pills did take the edge off, and I was able to focus on other matters. After a couple of days, I found I did not need them, but was glad to know they were there in case difficulties cropped up later.

I made a decision early on not to do too much research on line about my disease and treatment. I trusted my doctors and family members to answer my questions and tell me what I needed to know. I didn’t want to confuse myself or panic by discovering issues of needless concern and obsessing about them. But I did investigate some techniques other cancer patients had used to deal with their cancers to prepare myself mentally.

There are a lot of support groups out there, but few are specific to my kind of cancer. There are a lot of very worthy and helpful groups available in the Chicago area, and although I’m sure they are valuable to many cancer patients, I’m a very private, I’d-rather-do-it-myself sort of person. None of the groups were convenient to where I live. I would keep this as an option, but not jump right in, since it would require a major time commitment I felt I needed elsewhere, at least at the start. Maybe later.

I gave meditation some study. I went through some exercises on YouTube, and found they helped relax me. I learned to focus on my breathing and set my Apple watch to prompt me to take moments throughout the day to relax and breathe deeply. I learned to sit quietly and focus on a particular part of my body, like the bottom of my feet or my fingertips. The moments were relaxing and helpful, and didn’t take much time or effort. I trained myself so that, in likely stressful times, I would be ready to use the techniques.

I believe in exercise, but find myself making excuses. I thought I would feel better overall if I did even a small amount of exercise regularly, so I started to walk an indoor track for 20-30 minutes each day.

I am a lifelong Catholic, but I view my religion as a personal and private matter, so you don’t find me bringing it up very often. But of course a diagnosis of cancer is likely to generate either anger or devotion. For me, it goes against my nature to blame God. It is human nature (and Catholic guilt!) to at least question whether or not one has done anything that brought this disease about, but I quickly put these questions out of my mind and turned to active participation in the healing process. It was going to involve prayer. I slipped my rosary beneath my pillow each night, so that I could pray if I was unable to sleep, or, if I slept well, before getting up in the morning. I sought out the patron saint of cancer, Saint Peregrine, printed his prayer, and I read it before bed each night. There are other times prayer is important to me, and I will tell you about that later.

Some friends have recommended alternative medicine or non-traditional procedures that may be helpful along with traditional medical care. I looked at a few of them and decided they were not for me. After working for thirty-seven years in the medical field, fortunately always with the best medical care providers, I am convinced that traditional medicine, although not a perfect science, is the safest route, especially for something as life-changing as cancer.

My mind prepared, I then turned to practical matters.

Christmas was coming up, I was not ready for that, and I was in the midst of many projects that would need to be delayed or cancelled. I had almost three weeks to get it all done.

I’ve always been a “do-er.”I started on those things I knew had to get done before I began treatment. Only three weeks to accomplish everything, including some matters I had been postponing for too long because I didn’t think I had time for them. I sorted the important matters from those that could wait, and searched my mind for things that would come up while I was being treated. Things that could be done at a future time were stacked, and unimportant matters were pitched.

In my life as a writer, speaking engagements consume a large part of my time, and I was going to have to disappoint people who were looking forward to hearing and meeting me. Not only would my schedule be full of appointments and care requirements at home, but my energy level, appearance, and ability to handle pain were going to play a part. I contacted everyone involved, explaining that due to health reasons I would need to either reschedule or cancel. I was fortunate that every person chose to reschedule instead of cancel, and all were very understanding and expressed concern.

I do a number of administrative tasks for a community chorus. I had to organize and look through all pending matters, see that I had paper trails, back up data to a thumb drive, and communicate any needed information to others that might need it at a time I could not get it for them.

I am responsible for the archives at the Lemont Area Historical Society, and I had to sort pending matters, leave instructions, and meet with people who would need to carry on the work of the archives during my absence. My coworkers are excellent, but it still took three sessions to get this set up.

I had to anticipate what personal and financial matters would come up during my “break,” and one of these was income tax preparation. So I spent the better part of three days balancing bank and investment accounts that had been accumulating and setting aside materials that would be needed for tax preparation, as well as catching up on any financial matters I had been ignoring.

With all of that out of the way, I turned my attention to Christmas. John and Clare, my son and daughter-in-law, offered to cook Christmas dinner, and my other son Bob, daughter-in-law Dolly, and two-year-old granddaughter Mia, who lived in Indiana, were going to stay with me for a few days over the holidays. But I had not yet done any shopping, since my focus since before Thanksgiving had been on medical care.

At this point, I was leaving the house very seldom. This was partly due to everything I was doing at home in preparation, but also because I didn’t want to expose myself to catching something by being around others. I probably obsessed about this more than necessary, but I had a real fear of catching an infection or, horrors, the flu. I happen to be allergic to flu shots and had to take my chances. Shopping would have to be limited this year, but I was determined to make up for it with thoughtfulness, and hope I accomplished that.

The holiday turned out great. I had plenty of time to spend with my family. The gifts I received were mostly comfort items selected to make my treatment period more comfortable: soft pajamas and wraps, pillows (made by my grandson, Aidan), a large purse to carry everything needed for daily treatments, and the like. Clare and John outdid themselves with dinner, and the day was relaxed and memorable. Bob and Dolly were on hand to field any questions I had about my upcoming treatment. I felt ready to tackle whatever was to come.

The last thing was to be sure there was enough of the right kind of foods in the house. Due primarily to nerves, I was already experiencing loss of appetite and had lost five pounds. I had to be sure I had foods that were appetizing and provided the right nutrition for me, while being sure Chris, my husband, had enough of the foods he liked available.

I am neither bragging nor complaining about all this preparation. What I am doing is advocating that patients starting a cancer regimen take time to think carefully about what must be done before treatment and what can be delayed until after treatment. Some forethought can help to avoid things that could crop up at the worst possible time, that is, during the most difficult part of treatment. This is, of course, different for everyone. Perhaps knowing the things I chose as important will help to set personal priorities.

I had a visit with my ENT the day after Christmas, for preoperative exam, discussion, and hearing test. Chemotherapy sometimes causes hearing loss and ringing in the ears. Although it is not common with the agent I would be on (Cetuximab) a baseline hearing exam was recommended and done. My hearing test was not perfect, but pretty good all in all.

I had a few days left to relax with Chris before treatment began.

Next week: Cancer Treatment Begins

Posted in Head and Neck Cancer | Tagged Cancer, cancer treatment, getting ready for cancer treatment, Head and Neck Cancer, personal cancer experience, tongue cancer | 1 Comment

My Personal Journey Through Head and Neck Cancer

Posted on January 30, 2018 by Pat Camalliere

I’m taking a short break from writing about local history while I complete treatment for recently-diagnosed head and neck cancer. For the next couple of months I will be writing instead about my experiences with cancer, hoping that some of you will find the information helpful. Please feel free to forward my posts to others you may know who are dealing with cancer, especially of the head and neck. If you are missing my history stories, please be patient, as I expect to return to them by April or May this year.

Head and Neck Cancer: A Personal Journey

Working My Way Toward Belief

I kept thinking it must be a mistake.

Two days before Thanksgiving, while watching television in the evening, I noticed a tender spot under my right jaw, and felt a small lump there, about the size of a pea. I didn’t think much of it at the time, and figured it would go away. By the next day, in the car on the way to spend the holiday with family, the lump was grape-size and more tender, and by Thanksgiving Day it was the size of a plum and the muscles in my neck were sore. No fever, no other complaints, and of course no help available over the holiday weekend.

I assumed it was a dental issue. I had a pocket between two rear teeth in my lower jaw that gave me problems from time to time. I thought perhaps some food particle was trapped and infected, or perhaps one of those teeth had an abscess, although a dental exam only a month ago did not show any problem. At my age, dental problems were always a possibility, and a recent cleaning could have set off something underlying as well.

Monday after the holiday my dentist saw me right away. X-rays revealed no abscess, but findings were consistent with a periodontal infection, as I had guessed. The swelling was going down on antibiotics, but I thought I would err on the side of caution and see my internist, just to be sure we weren’t missing something.

She saw me on Thursday, and when she felt my neck she didn’t like what she found. She got my ENT doctor on the phone while I waited in the exam room, and after conferring they sent me for a CT scan. I was in luck again, and was able to get the scan the same day.

That very afternoon I got a call from my ENT doctor saying the CT scan showed enlarged lymph nodes on both sides of my neck. The tumor was invading my neck muscles.

It had to be a mistake, I thought. I had been feeling fine less than a week ago, better than I had for a long while in fact. How could something like this be going on? It was just an infected gland, from my teeth. It had to be.

It wasn’t. The next day my ENT doctor examined me in his office, passing a thin, flexible tube through my nose and down my throat, where he saw a small tip-of-the-little-finger-sized lesion at the base my tongue, an area that had been suspicious on the CT scan. He then used a needle to drain the obvious lump in my neck (a needle biopsy). “That’s interesting,” my doctor said. “This looks like pus.”

He showed me the tube, full of murky mottled fluid. “Yay!” I thought. “Pus!” Most people would not express delight at having pus drained out of their neck, but I welcomed it as a good sign. Maybe this was going to turn out to be an infected node after all, I hoped.

The samples were sent for culture and pathology to make the diagnosis. The biopsy was not back until Wednesday of the following week. The culture showed an infection, but the pathology was positive for cancer cells. I had both infected lymph nodes and cancer.

With positive radiographic and biopsy evidence of cancer, my surgeon had already taken my case before the hospital’s tumor board. The prognosis for treatment and cure was good, but I would need to get a PET scan and be examined under anesthesia with a direct biopsy of the tongue lesion. This would provide sufficient information to create a treatment plan, which was for seven weeks of radiation and chemotherapy.

It appeared we had caught my cancer early. It’s likely that a lymph node became infected either after a recent dental cleaning or some other process, and the cancer was already present in the node. It would have continued to spread undetected and be well along by the time it was noticed had I not gotten the infection and looked into the neck swelling. God works in mysterious ways, does He not?

I had been fortunate in many ways: my cancer had a good potential for cure, I had top doctors at a world-class university medical center, where I had worked in the medical field as a practice administrator for many years before retirement. And, my son was a gastroenterologist, my daughter-in-law a medical oncologist.

The next Monday I was back at the hospital for a PET scan. Surely, this time the mistake will be discovered, I thought. There is nothing wrong with me. My neck is back to normal, I have no symptoms at all, and I feel great. “Don’t kid yourself, Mom,” my son said. “There are excellent success rates with this kind of cancer, but you do have cancer.”

What wonderful tools are available now! The purpose for the PET scan was to determine the exact extent and location of each and every area that needed treatment. A PET scan is a two-step process. Glucose is absorbed by cancerous cells and makes them apparent on the scan. After injecting me with glucose, the cancer tissue identified on the scan is matched to findings on the CT scan. The scan covered my body from below my eyes to my upper leg. The result confirmed and defined the cancerous lymph nodes in my neck, as well as the primary lesion at the base of my tongue. Fortunately, there was no additional cancer anywhere in my body.

I could no longer deny my cancer diagnosis.

The next item on the agenda was to discuss and plan my treatment. The following week, with my husband, my son, and my daughter-in-law at my side, I met my team of radiation and medical oncologists and support staff. They recommended a trial. The benefits of the trial over standard treatment were to reduce the radiation dose and side effects.

There are many vital structures in the head and neck, and tailoring the radiation to avoid injury to vital structures while destroying the cancer is not an easy task. Lowering the exposure to known areas of disease, as opposed to standard radiation over a larger area not shown to have disease, reduces the side effects, confining the dose to as small an area as possible. The recommendation was that this lesser radiation was safe for me.

In addition, rather than the standard Cisplatin chemotherapy, I would be receiving Cetuximab, a monoclonal antibody. Because my cancer had spread, radiation alone would not stop the cancer. Cetuximab is effective for the particular cancer I have (squamous cell head and neck cancer), and although it has its own side effects, they are less than what I would expect from standard chemotherapy options.

After long discussion, the decision was made to follow the recommended trial, and I signed the papers.

I would not have had the confidence to do this on my own. I still didn’t feel sick and not completely convinced I had cancer. The lump was for all intents and purposes gone after the antibiotics were finished. If I had to believe I had cancer, I was skeptical about taking any short cuts. Were it not for my family’s expertise and confidence in the recommended therapy, I may have opted for a more difficult course. Ultimately I came to believe that the recommended treatment had every likelihood of doing the job just as well, and in the event of any remaining cancer it could still be taken care of. There seemed to be no reason to opt for a more difficult therapy.

I would begin treatment with the new year, on January 2.

Posted in Head and Neck Cancer | Tagged Cancer, cancer experience, Cancer of tongue, cancer patient, Head and Neck Cancer | 6 Comments

Extraordinary Native American Woman – Marie Rouensa – 1677-1725

Posted on November 8, 2017 by Pat Camalliere

We have no image of Marie. This painting is representative of other Native American women who lived in a similar time period. Indian women used cloth they purchased from traders. As a farmer in a French/Indian settlement, it is likely Marie wore a combination of traditional and French clothing. Portraits would have been done in formal dress as opposed to everyday wear. Casual clothing in the period was styled similar to dress fashions but made from less expensive fabric.
Photo credit: oldfashionedholidays.wordpress.com

Do you know Marie Rouensa? No? Maybe she’s more familiar to you by her Native American name, Aramepinchone? You don’t recognize that name either?

Marie is a woman well worth knowing.

Marie Rouensa was born in 1677. Her father was the Kaskaskia Chief Mamenthouensa, also chief of the Illiniwek Confederation, a group of approximately 10,000 Native Americans that included the peaceful Kaskaskia Tribe among the twelve or thirteen tribes belonging to the confederation. An important guy!

They lived in a village across the Illinois River from what at that time was the French Fort St. Louis, but is now Starved Rock. Marquette and Joliet had stayed at the Grand Village of the Kaskaskia when returning from their exploration of the Mississippi River in 1673. Marquette returned in 1675 to found the Mission of the Immaculate Conception there. The village grew to as many as 6000 people, and included French missionaries and fur traders among the Kaskaskia population.

Marie was educated at the mission and became a devoted Catholic. She was a gifted storyteller, and soon realized that Christian stories had similarities to the trials of the Kaskaskia way of life. She became an assistant to Father Gravier, who ran the mission, instructing both children and adults using their native language, and made many conversions within her village.

Her story does not end there. In 1694, Maria, at seventeen years of age, decided to devote her life to Christ and to chastity, but her parents had other ideas. For political reasons, they chose a marriage for her, to a fifty-year-old coureur du bois (illegal fur trader) with a reputation for debauchery. Michel Accault (Aco) came west with La Salle and stayed to trade with the Illini. Such alliances were beneficial for both Native Americans and Frenchmen, providing trade advantages, protection, hospitality, and sustenance in times of famine. Marie did not want to marry, but her father was the Chief.

Catholicism and marriage to Frenchmen appealed to Illini women. Warfare with the Winnebago and Sioux had resulted in a decline in the number of Illini men, such that there were four women to every man. Polygamy was common, marriages were demanding, and involved brutal punishments. The arrival of Jesuit missionaries and French fur traders offered Illini women an opportunity to challenge abusive treatment and seek alternatives.

Marie was very unhappy, but what could she do? Marie refused the marriage. She was stripped, banished from her mother’s cabin, and driven away. She took refuge at the mission. Her father placed guards to keep other Kaskaskia away, leaving the chapel nearly empty. He threatened more harsh methods against Marie and the mission if she did not agree to the marriage.

Marie proposed a compromise. She would marry Accault if he and her parents would become Christians. The advantages of the union outweighed objections, and the marriage took place.

Marie had become in her own right an important person in her village, and with her parent’s conversion it was not long before three quarters of the Kaskaskia had converted. Even Accault became a reformed man.

In 1703, the village came under attack by the Iroquois and was forced to move south of St. Louis and Cahokia to a spot east of the Mississippi River. Also named Kaskaskia, the history was similar to the first Grand Village. Across a major river from a French fort, a fur trade and French settlement grew from a mission and a largely Native American population along a major transportation route. Everyone had access to trade goods, which encouraged the settlement to produce a food supply to feed the traders.

Accault died near the time of the move. He had remained a fur trader until his death, and Marie married another fur trader, Michel Philippe. Neither man ever stepped outside the role of trader. Marie had two children with her first husband and six more with the second, to whom she was married for twenty years.

But here’s what else she did. Agriculture was woman’s work, and in this time and place food surplus was very profitable. Marie produced grain and vegetable harvests and her family prospered. At the time of her death in 1725, two years after that of her second husband, she left an estate valued at 45,000 livres, (equivalent to approximately $5 million today) property including several tracts of agricultural land, two houses within the village of Kaskaskia, two barns filled with hay, oxen, thirteen cows, three horses, thirty-one pigs, and forty-eight chickens. There were oxcarts and horse carts, iron plows, and large quantities of cloth, a sign of wealth. She owned five slaves, four African American and one Indian woman. Although Illinois did not become a slave state when granted statehood in 1818, prior to that time a form of slavery was practiced by both Native Americans and early settlers.

Under French law, Marie was able to own property as a woman and she left a legally-enforceable written will spelling out how each of her children would inherit, linked to specific behaviors. She denied one son, until such time as he would leave his non-Christian wife.

Marie stood out as an extraordinary woman because her accomplishments took place during the early arrival of the missionaries, the fur trade, and the first settlements in Illinois. She was able to use opportunities to establish her status and a sense of personal identity, carving out a new role not only for Native American women but for all women. She is recognized at Duke University, so influenced by her accomplishments that she was included in seminars naming women who shaped our nation, by Ohio University that offers a course on her life, and by the Illinois State Museum (now closed) that devoted a wing to her and her tribe.

And Kaskaskia? It grew to a population of 7000, and was the county seat of Illinois County until 1787 when it became part of the Northwest Territory. It was named capital of the U.S. Illinois Territory in 1809, and was the state’s first capital from 1818 to 1819, when the capital was moved to Vandalia.

Today Kaskaskia has a population of 13. After floods in 1881, the Mississippi River changed course, diverting around the east side of Kaskaskia. Today it is the only town in Illinois west of the Mississippi River, accessible only by a small bridge from Missouri. The Church of the Immaculate Conception was rebuilt after the floods near its original location. Marie was buried beneath the pew she once used in the original church.

Posted in Illinois History | Tagged American Indians, Extraordinary Women, Fur trade, History, Illinois, Kaskaskia Illinois, local history, Marie Rouenza, Marie Rouenza Aco Phillipe, Native American Women, Northern Illinois, women | Comments Off

Three-year-old Elsie, 1893-1896

Posted on September 20, 2017 by Pat Camalliere

Young girl, 1896
Photo credit: oldfashionedholidays.wordpress.com

Three-year-old Elsie, 1893-1896

The first permanent settlers came to Northern Illinois in the 1830s and by the mid-1800s many nearby towns had grown to be of significant size. On 127th Street in Lemont is St. Matthew’s Cemetery. Cemeteries like St. Matthew’s are not unique to Lemont. Many small graveyards like it were built in the early settlements and towns that became the Chicago suburbs.

In St. Matthew’s Cemetery is the grave of Elsie Wenzel. I have no way of knowing anything about Elsie except what is written on her gravestone. She died in 1896 at the age of three.

I can only imagine what Elsie’s life might have been like. My mind conjures up a laughing little girl with bouncing dark curls, anxious to please her family, bright, energetic and chatty. I see her running through the grass. A spotted puppy is chasing after her.

But…her gravestone says she died when she was three.

The research I did about childhood mortality was saddening. In 1908, out of every 1000 children born that year, 154 died before reaching the age of one. How many more by the age of three?

Prior to the 1880s, suburban residents typically allowed farm animals to roam. Without sewer systems, outhouses and ditches carried waste that contaminated shallow wells. Disease and epidemics were frequent: typhoid, cholera, pneumonia, diphtheria, tuberculosis, polio, smallpox, and more. In 1886 a family of seven moved to Lemont to start a new life. Within two weeks all of them were dead of typhoid fever.

In 1903 Lemont had a smallpox epidemic. Smallpox vaccine was available after the Civil War, but many people were more afraid of the vaccine than they were of the disease. Fifty deputies were sent by the Cook County Board of Health to ensure that people stayed in their homes and no one was allowed to enter or leave the town, for fear that the disease would spread.

Most children were born at home. Hospital care was scarce, far away, transportation was slow, and treatment inadequate. Many of the residents were farmers, and accidents were frequent on farms.

The early years in Lemont were not kind to children.

Was it an accident that killed three-year-old Elsie, or was it disease?

In this cemetery of perhaps 750 graves, 69 stones mark children who died before the age of 10 and prior to 1917. There are likely to be more that are unmarked.

In this cemetery are four children lost to the Pelzner family: Wilhelmina in 1874, 5 months old; Bertha the next year, 4 months old; in 1876 Johann died at 3 months; and in 1878 Augusta was 2 months.

In this cemetery are buried three children from the Boe family (Clara, age 1, in 1890; Raymond, age 8, in 1922: and Howard as an infant in 1909) and three from the Hogrefe family (Walter, age 1 in 1903; Edna, age 7 months the following year; and Werner, age 6 months the year after that).

In this cemetery are 9 children who died as infants, 21 before the age of one, 26 between the ages of one and five, and 12 between the ages of five and ten.

Let us be thankful that today our children and grandchildren are no longer subject to the hardships of a hundred years ago.

These children are forgotten. Their names have not been spoken for decades. All who would grieve them are long gone. Let us take a moment of silence to do what no one else will now do: remember Elsie and these many little lives that ended all too soon.

Posted in General History, Illinois History, Lemont History | Tagged cemetery, Chicago, Chicago history, childhood hazards, childhood mortality, children, History, Illinois, Lemont, local history, Northern Illinois, young girls | Comments Off

America’s Love of Air Racing – 1930s – Rudy Kling, “Speed King”

Posted on August 16, 2017 by Pat Camalliere

”…only when the race is over am I nervous until I get down on the ground and roll to a stop.”
— Rudy Kling, the Speed King, the Pride of Lemont
Photo courtesy of the Lemont Area Historical Society

With the Chicago Air and Water Show about to begin, I thought it a good time to tell the story of a giant of Air Racing and local boy made famous!

In the late 1920s and the entire 1930s, America was in love with the sport of air racing. No racer fired the spirit as intensely as did Rudy Kling.

Rudy was born in 1908, the sixth of eleven children of a German immigrant farm owner in DuPage Township. An otherwise quiet, ordinary child and young man, Rudy had a dream of someday owning his own airplane and flying.

In 1928 Rudy and his brother opened a garage on Rt. 66 near Joliet where they repaired cars. He made friends and took flying lessons from Art Chester of Downers Grove, a speed racer and plane designer. Under Art’s tutelage, Rudy learned the skills of speed racing and aviation mechanics.

In 1933 Rudy bought his own plane, a damaged plane that had previously won many races. He brought the plane to Lemont to rebuild and named it “Suzy.” Rudy was not able to qualify to pilot it himself initially, but Suzy went on to win with other pilots. In 1936, in his first race as a pilot, Rudy set a record for light planes of 228.07 mph.

This was just the beginning. He set his goal on the top prize in air racing, the International Air Race in California. Rudy said, “They laughed when I sat down to fly! …with all of 200 hours of solo time to my credit…”

Rudy finished fourth, earning $765, but it cost him more than he won. When another flyer crashed, Rudy crashed into a parked car trying to land Suzy, demolishing the car and his plane beyond repair. Rudy was unhurt except, in his words, he did “feel sick…after my wife got through lecturing me for the way I had scared her.”

So Rudy took his winnings and ordered a new plane from Clayton Folkerts, a self-trained designer who was inspired by a barnstorming flying circus in Iowa and began building planes between farming chores. His Speed King series airplanes were well known in racing circles. Together Rudy and Folkerts designed and built Rudy’s SK-3, Jupiter, the Pride of Lemont.

On September 5, 1937, in Cleveland Rudy won with a speed of 232.2 mph. His prize was $4,500, but the big race, the Thompson, lay ahead, the classic exciting air race of “speed plane” history.

One hundred thousand people watched as Rudy started out dead last in the field of nine. One by one, Rudy passed his competition. After seventeen laps, only one plane remained ahead. With only one lap to go, Earl Ortman eased up ever so slightly with thoughts of the 1937 Thompson dancing before his eyes. But Rudy had purposely remained in Ortman’s blind spot, and in the last few seconds took his Jupiter Pride of Lemont into a high-speed shallow dive. Rudy Kling, “Lemont’s own No. 1 Birdman” had won the 1937 Thompson trophy by a margin of 50’ and .052 mph.

Rudy came home to honors and fame. Now, he was the one to beat and various air show sponsors were clamoring for him and his SK-3 to draw the crowds.

Then in December 1937, the Argentine Trophy Race, and Rudy was pitted in a grudge match against another pilot, Frank Haines, who had been disqualified in the Cleveland race for inexperience and poor eyesight, and for some reason held Rudy accountable.

At the wave of the flag, they were off. Kling led the field with Haines close behind. Dangerously near the ground, tricky winds caught Haines’ plane, following too closely to Rudy’s. Both planes went into a snap roll and crashed within fifty feet of each other. Both pilots were killed instantly.

Rudy Kling had lived his wildest dreams.

Theresa Kling, their son Robert, and Rudy’s brother, Arnold, brought the body back to Lemont. A plain pink granite stone marks his grave. The stone tells nothing of his exploits. It reads “Rudy Kling 1908–1937”; a small airplane is carved above his name. It was seven years since he began flying. He still had less than 300 hours of solo time and it was three months since he had been proclaimed America’s number one speed pilot.

More details of this story is told in History and Anecdotes of Lemont, Illinois, available at Amazon, the Lemont Area Historical Society, and Smokey Row Antiques in Lemont. A video of the crash of Suzy is also available on You Tube.

Rudy accepting the Thompson Trophy, 1937
Photo courtesy the Lemont Area Historical Society

Posted in General History, Illinois History, Lemont History | Tagged 1930s history, Air Racing, Chicago, Chicago history, History, Illinois, Jupiter, Lemont, local history, Pride of Lemont, Rudy Kling, Speed King, Thompson Trophy | 3 Comments

Ghosts of the Quarries

Posted on April 4, 2017 by Pat Camalliere

Icebox Quarry, Lemont, Illinois. The Illinois and Michigan Canal was dug through limestone, and after the canal opened in 1848 business owners in Lemont turned to quarrying stone. This stone was so popular at one time that the Sears catalogue sold a paint color called Lemont Stone. In the early 1900s the stone’s popularity started to wane and eventually quarries were abandoned, in some cases leaving the pumps that had kept them dry in place. The quarries eventually filled, and during the forties and fifties became popular swimming holes. Due to a number of drownings, swimming is no longer allowed, but the quarries are open today for fishing and scenic hiking. Photo compliments of the Lemont Area Historical Society.

Many ghost hunters describe something called the “limestone theory,” holding that paranormal activity is more frequent in areas where there are large amounts of limestone. One possible explanation is that the chemical makeup of limestone is similar to that of magnetic recording tape, and therefore is prone to being imprinted, thus capturing and storing activity. Another theory is that the chemical make-up of limestone is prone to drawing, storing and releasing electromagnetic fields (EMF) on which “hauntings” depend, thus enhancing any activity that happens to be in the area.

I’m probably using a lot of incorrect language here, as I am neither a geologist nor a paranormal investigator. The point is that regardless of whether one believes in the ability of such stone to capture impressions or be used as an energy source for paranormal activity, regardless of the science, in other words, areas where large amounts of limestone exist do apparently have more reported paranormal incidents.

The stone that exists in the Lemont-Joliet region is dolomite limestone with a high percentage of crystalline structure. This adds credence to the electromagnetic field theory, should you choose to believe that.

Here are some of the experiences that have happened near Lemont quarries:

Archer Avenue, said to be one of the most haunted roads in America, is the site of many tales of Resurrection Mary, the haunted Willowbrook Ballroom, and ghosts at St. James at Sag Bridge: monks, glowing caskets, the woman in white, the disappearing carriage, etc. I’ve described these in a previous post so I won’t repeat them here, except to mention that these areas are adjacent to quarries.

Aside from the stone itself, it is known that many Irish-American canal workers died from disease, poor living and working conditions, and violence in the 1840s when the I and M Canal was being built; later quarry workers shared the same conditions and fate. Many were buried at St. James at Sag Bridge, but it is said that, due to poverty, some of the deceased were cremated and their ashes scattered over the quarries. Most people who believe in the supernatural will say that people who died violently or untimely are more likely to remain as spirits.

American Indians lived in the area since before Columbus; remnants of their villages have been found in the Des Plaines and Sag valleys. One could surmise that such burials, combined with the underlying beds of local limestone so close to the surface, could account for some of the tales of Indians on horseback being seen in the area long after the tribes had moved to western states.

In 1897, the skeletons of nine Indians were dug up near the quarries, followed by a rash of reported hauntings: phantom Indians on horseback riding through the town at night and other visions of roaming spirits. Fearing the hauntings were due to disturbing the skeletons, residents demanded they be reburied. Some were reinterred, but some ended up at the Field Museum in Chicago.

Bachelors Grove Cemetery in Midlothian, Illinois continues to mystify visitors with an astounding variety of paranormal experiences: ghosts, lights, mystery houses, disorientation, electronic and automotive malfunctions, among others. It is one of the most haunted spots in the Chicago area and located beside a quarry.

Not all stone in the area remained here. Chicago’s Water Tower on North Michigan Avenue is constructed of stone quarried in Lemont. Stories are told of the ghost of the “Hanging Man,” seen in one of the tower windows, and thought to be that of the “Lone Pumpman,”—the only worker who stayed behind during the Great Fire of 1871.

Holy Name Cathedral in Chicago is another building made from Lemont stone. In 1924, Chicago Gang boss Dion O’Banion was shot and killed in the flower shop he owned directly across the street from Holy Name, reportedly on the orders of Johnny Torrio and Al Capone. Bullets from the ambush lodged in the cornerstone of Holy Name and it is reported that despite numerous attempts to patch the holes they continue to reappear.

I’m not going to ask you to believe that Lemont stone caused all of this—that’s up to you. After all, the area has also been the home of many Irish, who have been known to tell a tale or two….

Photo of Consumers Quarry, Lemont, about 1890. Photo courtesy of the Lemont Area Historical Society.

Posted in Illinois History, Lemont History | Tagged Bachelors Grove Cemetery, Chicago history, Chicago mob, Chicago Watertower, Ghosts, hauntings, History, Illinois, Lemont, limestone, local history, paranormal activity, quarries, Sag Bridge, St. James at Sag Bridge | 2 Comments

Have Yourself an Early Illinois Christmas!

Posted on December 14, 2016 by Pat Camalliere

Holly sprigs secured with bits of wax to each window pane are authentic reproductions from 18th century depictions. Photo of Stephenson House provided by Diane Andersen.

When I found out my writer friend, Diane Andersen, had written about historic Illinois Christmas traditions, I invited her to write something for my December blog, and she graciously accepted.

By way of introduction, although exploration and fur trading was taking place in Illinois as long ago as the 1600s, the earliest permanent European settlements were downstate since the earliest settlers came from eastern states by way of the Ohio and Mississippi Rivers after the Revolutionary War. The northern part of Illinois was not open for settlement until the 1830s.

The Stephenson House, the home of one of the earliest Illinois settlers, is located in Edwardsville, Illinois, about twenty-five miles northeast of St. Louis. Diane is affiliated with the historical home. She has recently published a book about early Illinois traditions and she has written a novel that is due to be published this spring.

Have Yourself an Early Illinois Christmas!

by D. L. Andersen

An “old fashioned” Christmas brings to mind all sorts of images from stockings hung by the fire to holly and mistletoe and perhaps wandering into the woods to chop down the perfect pine tree for the parlor. Its roast goose and plum pudding and wassail toasted among wandering carolers. Those are the things I imagined and longed to experience after reading stories of Christmas past from Dickens’ chilling tales to Laura Ingalls Wilder’s cozy log cabin Christmases . It’s a wonderful time for me to share all the history and lore of those early American Yuletides and revel in experiencing a truly old fashioned Christmas as if actually time traveling into the past.

The 1820 Colonel Benjamin Stephenson House, a historic site in Southern Illinois, holds a Christmas Candlelight tour every Thanksgiving Weekend. We have gone to painstaking detail to interpret just what an early American Christmas in Illinois might have been like. Here are just a few of the traditions visitors will learn about and interact with as they wander through our nearly 200 year old site, enjoying a Merry Christmas together:

Decorations: You won’t find a Christmas tree at the Stephenson House. It’s the first thing most visitors wonder about. However, Christmas trees did not become popular in America until around the time of the Civil War. You might find a few families decorating a small tree, as seen in a few paintings from the early 1800s, but it was not the quintessential part of everyone’s holiday décor. Rather at most they might hang a few pine boughs, holly or ivy and mistletoe, as some old poems and carols describe. At the Stephenson House we have copied exact decorations from period woodcuts and lithographs showing a small sprig of holly in every windowpane. Each sprig is mounted with a small dab of beeswax—a natural adhesive that would have been readily available. Other decorations in the house include an apple cone and red ribbons strewn over tables and linens. Early Americans would have used what they had on hand, collecting greenery from the woods and gardens or hand making ornaments. They likely would not have decorated much unless they were entertaining guests and the decorations would only have lasted for a few days, not an entire month as is common now. Candles would have been a necessary light source used on a daily basis rather than just for a cozy glow for the holidays. Yet when the house is all done up and the candles are lit, it feels very festive and full of that old fashioned flavor worthy of a Thomas Kincaid painting, something Laura Ingalls or Charles Dickens might feel right at home in.

Apples adorn a wooden cone in the Stephenson House dining room. Photo provided by Diane Andersen.

Carols: In the parlor of the Stephenson House is an antique pianoforte where carols are played during the Candlelight Event and visitors are invited to sing along. We bend the historical rules a bit there and allow standard favorites to be sung like Jingle Bells and White Christmas. However, our early American ancestors and the Stephenson family who once lived in the house would not recognize these carols. Yet most of the carols popular in the early 1800s would hardly be recognized today. Oh Come All Ye Faithful is one carol that has stood the test of time and would be well known by our American ancestors as well. But songs like Down in Yon Forest would more likely be heard in the homes of early Illinois as might also Bring a Torch Jeanette Isabella or In Praise of Christmas.

Christmas Cuisine: Anyone who’s read Dickens A Christmas Carol remembers the scene of the Cratchet family eating dinner and glorying over the roast goose and plum pudding. These indeed were popular dishes of the 1800s and are still with us today. In learning to interpret an authentic early American Christmas, I was most surprised to find many of our holiday treats have not changed much over the years, in spite of having so many other modern options to take their place. Plum pudding, a steamed concoction of bread crumbs, dried fruits, suet (beef fat), eggs and sugar is not as tasty to some as Dickens makes it sound. Sugar plums are not all that bad though, surprisingly made of sugar coated dates stuffed with a mixture of chocolate and ground nuts. It’s most surprising of all to know that neither sweet treat is made with plums in spite of the name. Other treats of the era that we have on display are gingerbread and shortbread as well as wassail, spiced apple cider usually spiked with rum or whiskey. According to a tradition dating back to Medieval Times, wassail was served in a bowl carried from house to house by carolers. The occupants of the house were given a piece of toast to dip into the bowl, hence the beginnings of our word “toast” in sharing a drink and offering a salute or a good word between friends.

These and more traditions and the older Christmas carols were woven into my latest story, Ben’s Christmas Treasury. It is reminiscent of Dickens’ A Christmas Story and Frank Capra’s It’s A Wonderful Life, based on the life and times of Benjamin Stephenson, a founding father of Illinois. For more information on the historic site visit their website: www.stephensonhouse.org.

Thank you, Pat, for allowing me to share one of my favorite topics with your readers.

Ben’s Christmas Treasury
is available in paperback and e-book from Amazon.

Posted in Illinois History | Tagged Christmas, Christmas carols, D. L. Andersen, early Illinois, History, holiday decorations, holiday meals, holiday traditions, Illinois, Stephenson House, traditions | Comments Off

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