Over the Hump

It's Wednesday so the week is moving along. I had my seventh treatment this morning, only twenty-six more to go. It is very quiet at MDA at 8:00 and no one else in the waiting room. During my treatment I noticed that the machine (which heretofore will be known as the Big Zapper) makes seven or eight stops and I receive ten doses of radiation. I certainly will have enough time to confirm or deny these statistics. I think the thing I hate most about the Radiation is the stent in my mouth. It's all I can do to prevent myself from barfing which would not be a good thing. The stent may make it difficult to do so, but I believe I could. Thirty minutes later and I was on my way.

I met with the Nutritionist who is really very good. She checked out one of the supplements I have been using, Spiru-tein, and said it was a good one  but probably more expensive than the whey protein supplement which she recommended and which we bought. She approved of the protein bars (26 grams of protein and a zillion calories) and also my diet as it presently exists. She also recommended that I stop taking Vitamin C as it builds up the cells; I can do this.  Another gold star and I was on my way.

So far, so good. The only side effects I seem to have at this time are a dry mouth with a metalic taste and a little loss of energy. I don't know if it is a result of the Radiation or my many nocturnal visits to the porcelain bowl...all that water I have been drinking has to go some place, but why in the middle of the night?  As a result of this diminution of energy, I have shortened my daily walk to two miles but I may have to alter it further.

Tomorrow in addition to my Radiation treatment I also meet with a speech threapist. I'm not expecting to have any speech problems but I guess they like to touch all bases. Maybe I'll slur my words, naah, probably not.

Time for some more water. Ugh!

The Weekly See #2

Last night left much to be desired. I had a case of terrible dry mouth which was not at all pleasant; I even got up and did a rinse. It was as if my salivary glands went to sleep; fortunately this morning they have awakened but I wonder for how long. I know that this is one of the side effects but I was hoping it would occur much later. But enough of that.

Today I'm on my own. The water sheriff is not here and I have been entrusted to drink the 5 bottles during the day. Of course, I will give it my best effort. I changed my Radiation appointment to 2:00 where they will fit me in.The reason being is that  I have my Weekly See with Dr. Beadle at 1:00 and I really wanted to avoid two trips to MDA. This is number two of seven and I'll let you know what transpired when I return.

According to Dr. Beadle I am doing well, maintaining my weight, doing my rinses, drinking the dreaded 5 bottles of water and using the fluoride. She did give me a couple of prescriptions for sore throat and one for constipation to counter the effects of the throat medicine. She just wanted to make sure I had the medicine when I needed it. I guess the bad news is I will need the medicine and the good news is I will have it. Having concluded my Weekly See with a gold star I then headed to Waiting Area J and my afternoon session with good old #97.

I forgot to mention that while waiting for Dr. Beadle I spoke with some folks in the waiting area both of whom have the same cancer that I have. Intellectually I know that no two cancers are identical and the same can be said for the patients so it makes me nervous to equate what I have, with someone else. I know that the one constant is the side effects, the unknown is how my body will react to them. Little tidbits are always picked up along the way and the best advice I was given today was to stay ahead of the pain and not stint on the pain medication. Since stoicism is not one of my virtues this shouldn't be too hard for me to do.

Monday, Monday

So good to me, as the song goes. I feel pretty good today; perhaps having the weekend off from Radiation treatments allowed my body to recover although I suspect it may be more in my mind but I'll take feeling good anyway. The food police foisted an Ensure on me as I left at 7:15 for my 8:00 Radiation appointment. Traffic was light and I arrived at MDA at 7:35. There were no other patients in the waiting room and I went in for my treatment at 8:15 and was on my way home at 8:40.

Upon arrival home I had breakfast, a bowl of cereal with a banana; did my mouth rinses, (which I really don't like) my neck exercises and finished my first bottle of water. (only 4 more to go) I noticed that the nodule in my neck has gotten smaller, almost to the extent it is non-palpable. I guess the Radiation is working. Not too much else to add; more tomorrow.

TGIF

Well, it's Friday and the weekend is almost upon us. This also means that I have had the last of my Radiation treatments for the week and am 10% finished. Best is I am off on the weekend. I am also feeling better today as the nausea was not present. Just having those pills makes me feel better. Thank you for all your suggestions, they are always appreciated.

I had my first appointment with the Nutritionist today. She had lots of suggestions for me and I should be able to maintain my vegan diet. Part of the new regimen includes protein supplements and a lot of smoothies which I should be able to manage. I'm also supposed to drink 2.5 litres of water every day. Sad but true, I'm not a big one for water so  I guess I'll have to mend my ways as there is a new water sheriff in town who makes Nurse Rachet seem like a pussy cat.

Spirits were high in Waiting Room J, everyone loves Fridays. We saw three patients leave with their masks in hand, but before they did a bell was rung and everyone in the waiting room applauded as this marked their last treatment. There is a very warm feeling of comaraderie among the patients and their spouses or significant others as we are all in this together and are one big support group. Cancer certainly levels the playing field.

So, it's four down and thirty to go and I'm off for the weekend. I'm sure I'll have more on Monday.

It's Thursday

I've always liked Thursdays; I guess because the next day is Friday and the weekend is around the corner. It's even better now because I don't have any treatments on the weekend. Today I was on a different machine; it made a little more noise but presumably accomplished the same thing. I'll be on the same machine tomorrow and then it's back to good old #97.

I decided to visit Gary, Dr. Beadle's nurse as I was feeling a little nauseus this morning. I don't think it's good to be nauseous after only two treatments but I was told it is fairly common and was given a prescription for some anti nausea pills and one for its side effect, constipation.

I headed over to Walgreen's to get the prescription filled and was shocked when the pharmacist told me the cost was $104.00. That was for 12 pills. I have decided I will sleep through my Morning Sickness. Well, actually I can't do that because I changed my Radiation appointments to 8:00. Oh well, the nurse did say that the nausea should go away but I didn't ask when.

Tomorrow I have an appointment with the nutritionist. Dr. Beadle told her she would have a challenge since I am a vegan. I'm anxious to hear what she has to say.

I guess I'll go drink some water and do my mouth exercises.

Settling in

Today I met with Dr. Alexander Dekovich from the Department of Gastroenterology. We had a nice visit and he explained how a feeding tube works should I need one. The answer to whether or not I will need one will become abundantly clear as I progress with my Radiation treatments. He told me that it depends on how severe the side effects become and that if I needed one, I would know it. I am planning not to need one but it is good to know I have his cell phone number just in case. It didn't look like a fun procedure but they do give good drugs {If not there, then where?}

From there I went over to the Radiation Center which necessitated moving my car from the Patient Pays Parking Lot to the one with complimentary valet parking outside the Radiation Center. I signed in and meandered through the maze of waiting rooms in the basement until I finally found Waiting Room C where I took my seat and looked over at the other waitees. I spoke with a lady from San Antonio who started her treatment on the same day as I did. There's an old Jewish saying that states, "If everyone took their troubles and hung them out on a line, they would undoubtedly rush back to take their own." I certainly feel that way as there is always someone who has it worse than you.

After I completed my treatment for the day, Neil, Jay and Danna, my Radiation Therapists, advised me that I would be on a different machine Thursday and Friday as Treatment Machine #97 will be out of service for those two days.(I wonder what's wrong with my machine; maybe it just needs an oil change.) The new machine is in Area J; all this after I just mastered Area C. Now I must do my neck exercises, rinse my mouth and drink some more water.

Its Showtime!

I arrived at MDA at 2:45 for my 3:00 appointment with Dr Beadle. This was probably the easiest appointment I will have as it was pre-radiation ergo no problems. I will meet with her once a week on Tuesday afternoons for the "Weekly See Visit" That's what it is called; however I refer to it as Tuesdays With Beth. I had my list of questions, one of which was already answered when I received my new appointment schedule. I will now have my Radiation at 8:00 AM. I can also continue walking outside as long as I wear sun screen and a hat. Much better than the treadmill.

The curtain on Act I of the Radiation Show was delayed because they were running late, so I had my first treatment at 5:30 as opposed to 4:15. It took about 35-40 minutes but I was told subsequent treatments would take much less time. Valet parking at the Radiation Center is wonderful and it is complimentary. At 6:15 I was on my way in the thick of Houston's rush traffic.

So, one down and thirty-two to go. Oh, I did learn that the machine cost $4 million and you have to have a physicist on hand as well as a very competent team of technical experts to operate it.

I started with the fluoride treatment last night and that is an ongoing procedure. Tonight I started with the warm water and baking soda rinses.I am supposed to do this 4 to 6 times a day. I have just been told I must check off my rinses, jaw exercises, mouth exercises and whatever else I am supposed to exercise. It begins.

Dress Rehearsal

Today is the penultimate day before I start for real. We arrived at MDA at 1:20 for my 2:00 appointment with Dr. Chambers, the dental oncologist. He gave me my stent which will be used for the entire 6 1/2 weeks of radiation along with some trays that are to be used for my self administered fluoride treatment which is to be done every day. A five page sheet of mouth instructions was also part of my goodie bag which included a sample of some toothpaste, dental floss and the tube of fluoride. He bade me farewell and said that I would do just fine. (He probably tells that to all his patients)

Next stop was Radiology and the final simulation. That sounds kinda ominous. This is somewhat of a trek as it is near elevator G and we started at Elevator A. No big deal but we always manage to get lost on the return. Anyway, I checked in and was told to go to waiting room C in the basement. We waited a little while and soon the entire team of Techs came out to meet me and introduce themselves. They will be zapping me for the entire length of the program. Then it was on to the room and the simulation.

Sally was allowed in the room briefly to take photos and then ushered out to the waiting room. It took them 20 minutes to do all the positioning for the Xrays and to make certain I was properly placed on the table. That completed they told me they would see me tomorrow for my first treatment.

                                                                   Man in the mask

We mentioned that we would like to change the time to anywhere between 8:00 and 8:45 so we'll see if that will happen. Dr. Beadle's office called and left a message that she would like to see me tomorrow before the first treatment.

Tonight I will finish up the cookies. I have done well...gained 5 pounds on the cookie diet.

Decision made

We met today with Dr. William, fresh from his two week vacation. He articulated very well where we are in terms of my tumor and the options available to me. He said I was offered the experimental protocol of Zactima because they felt it would offer great research value since my tumor was so small and that they rarely see one this size. The Erbitux was still an option but all the doctors involved felt that I would respond very well to Radiation alone. Dr. William also felt that even though they did not have enough tissue to confirm the presence of the HPV virus, he felt the tumor manifested all the signs of it being there. When all the words were spoken, the body language signs read, and every nuance analyzed, I decided to go with Radiation, alone. He said he felt this was a good decision, that Dr. Weber had no problem with this as a stand alone treatment, and we of course knew that Dr. Beadle, the Radiologist felt it was enough. Wheeew.

I then proceeded to ask him about my new problem of hair loss (like I needed this) and he said that it was entirely due to stress and that I had no test(s) that would mitigate this loss. [I know that more will come later and the only person that will be more upset than me will be Ted, my barber]

My dance card at MDA is really filling up rapidly. I have to check the appointment schedule every day (on line) because appointments are constantly being added. In addition to the regular Radiology treatments which will start next week, I also have appointments with my Dental oncologist, a gastroenterologist, a speech therapist, a Nutritionist and the ever important bowel management class. I could certainly make a few scatological comments but I shall refrain.

During my weigh-in I found that I didn't gain any weight so now I'm going to eat a cookie.

I Don't Get No Satisfaction

Some days you just can't win. I have been waiting for a call from MDA regarding my biopsy and whether or not it had HPV in the cells. Yesterday I was called but told they did not have the final results. I was told I would be called today. At 3:30 I had not heard; so Sally called MDA on my behalf and asked that I be called with the results. At 4:30 I was called by the returner of phone calls but was told and I quote, "I think the report is finalized but I cannot read you the results." I asked who could and was told that the doctors were in clinic. I asked that one of them call me as I really wanted to know the results before going into my meeting with Dr. William tomorrow.

At 4:50 the phone rang and it was Dr Sabichi. She said, "I really can't believe this but your tumor was so small there was nothing left from which to perform the test to determine whether or not HPV was present in the tumor." Of course a very positive spin was put on this. Dr. Sabichi told us she would talk to Dr. William before he meets with us tomorrow and give him her thoughts. Now I don't know what to do regarding the Erbitux. My initial decision was to have Radiation only if HPV was present in the tumor and go with the Erbitux if it was not. In chess, this would be a stale mate. So, I guess I will allow myself to be swayed by whatever Dr. William has to say. I'll have more after that appointment.

This Ain't Gonna Be Fun

Friday was one hell of a day. We arrived at Anderson at 8:30 for the first of 5 appointments. It was Patient Education and Instructions. There were 10 patients and their spouses or significant other in the mini class which was conducted in a hallway. Gary, the nurse who ran the program was very good in a very non-traditional way. He really said it the way it is. If one didn't want to hear reality, this was not the place to be. I remember Dr Beadle saying this was the program that would scare the hell out of you and she was right on the money. Yesterday's information sheet with the side effects was merely a precis of what was covered today. I'm not going to go into all that was covered but suffice it to say this treatment is really going to be rough, the side effects are going to be nasty, there will be pain which will be managed and for 4 of the 6 weeks I will be miserable. He also said the side effects do take time to disappear, sometimes up to a year and in many cases they don't entirely do this.  Unfortunately I am not a stoic. However I have convinced myself that I will endure this, I will do all that is asked of me and I will triumph. I know this sounds good but I hope I still have the same conviction as the therapy progresses.

Next on the agenda was a meeting with the entire Radiology team. Six doctors crowded into my little examination room and scoped my throat, probed around and discussed it. This little team consists the best of the best and they exuded confidence. I  was given my radiation schedule which starts on the 21st. That day will be a dry run to make sure my position on the table is correct and the mask is properly marked and they are ready to go. The first actual treatment will be on the 22nd and I will have 33 of them. I am not pleased with the time of these treatments as it is 3:45 PM. It's the perfect time to hit the school traffic coming and the rush traffic going. I will see if I can get it changed to a morning hour.

My last apppointment was with Dr. Anita Sabichi who is a medical oncologist with Dr William. Our appointment was scheduled for 1:00 PM but she was running late and at 3:15 she showed up. The major highlight of this meeting was a discussion of Erbitux and whether or not I should have it. To say that this threw me would be an understatement. I was feeling so good about making the decision to have Erbitux instead of Zactima. You are not allowed to become complacent. I learned that Erbitux has it's own side effects that I had been previously unaware of and which she made perfectly clear.

She went over my non-finalized pathology report and told me they knew the location of the primary site, that I had squamous cell carcinoma, that the tumor was very small as was the tumor in the node. (We knew this) She said that they recently found that there are a group of people with  head and neck tumors that didn't have the major risk factors, (smoking & alcohol use), who had tumors that were positive with the  HPV virus. (human papilloma  virus) She said that as kids we were all exposed to this virus but for some reason some people don't anhiliate the virus from their body and it gets harbored in the back of the throat and the lymph tissue there. If it is there for a long period of time it can cause a tumor. They are not at the point in time when they can treat this tumor differently. However, looking backward they see that people who have HPV in their tumor do a whole lot better than those who don't. Patients who have HPV have a better prognosis, less chance of a reoccurrence and less chance of metastasis.  She said that regardless, she feels I will do well because I have a little tumor and a little lymph node. The results of the HPV test done on me are not back yet.

So, the choice of whether to have the Erbitux or not, is up to me. All I want is some doctor to tell me what to do but it doesn't seem to be happening. So, the choices as I see them are as follows: Behind door number 1 we have Radiation by itself. Behind door number 2 we have Radiation and Erbitux and behind door number 3 we have, perhaps HPV virus in my tumor which would allow me to bypass door number 2 and select door number 1. If this is the case, I have opted to take door number 1.

Dr Sabichi went on to say they don't like to overtreat their patients and that all involved in my case would feel comfortable with either decision. She said that I had to be comfortable with my decision. My comfort level would increase dramatically if someone else was to make that decision.

After a brief trip to Dental Oncology to drop off my radiation schedule and hear about the fluoride treatment I will have to self administer, we left the hospital. It was now 4:30 and time to go home. Did I mention the bloodwork? Yeah, I had that too squeezed in between Dr. Sabichi and Dental Oncology. What a fun day!

Ending on a high note, I was told that I should eat anything I wanted this coming week and to gain weight. I believe this was the first time in my life I have ever heard those words.

Simulation

Today I had my simulation where with apologies to Alexandre Dumas, I was fitted with a plastic mask. This will be used during radiation to focus the beam to the cancerous site. The mask, which covers my head to my chest, is marked as opposed to me being marked. The mask is mesh which allows me to breath although I will also have a plastic guard in my mouth to protect areas that need protection. I signed my release and was given a sheet of paper which listed possible side effects from the radiation. None of them sounded particularly exciting.

Tomorrow is Patient Education and Instructions day. I will be given my radiation schedule for the 33 treatments which will start on the 21st. I will also meet with my oncologist and find out when next week I will receive my first infusion of Erbitux. The count-down calendar starts a week from Monday. I'm anxious to start.

Moving Slowly, But Moving Forward

We are moving along slowly. I anticipate starting my radiation the week of the 21st of September if not slightly before. Thus far I have four appointments next week. I meet with the dental oncologist on Tuesday the 8th. I think he will be telling me what I need to do to protect my teeth, what toothpaste to use, fluoride treatment, etc. On the 10th, Thursday I have a Simulation appointment. I believe this is where I get measured for the mask I will be wearing during the 6 1/2 weeks of radiation. I'll have more about this mask in later posts. On Thursday the 11th I go for patient education where instructions will be given as to the therapies I will be undergoing and I'm sure I will have an opportunity to ask many questions. My other appointment on that day is at the Head and Neck Planning Clinic. I'm guessing that I will be given a calendar which will list time, dates and procedures.

The day before yesterday, an interesting thing happened. My oncologist, Dr. William William (yeah, that's really his name) called. He asked me if I wanted to participate in a clinical trial. Previously I was told that in addition to the radiation I would also have an additional therapy. It is something called C225 or Erbitux. This is a little extra something that is administered by infusion once a week for the duration of the radiation. It is an antibody which is a new type of "targeted" cancer therapy which starves the bad cells without harming the healthy cells. But I digress. The new protocol which was offered to me is called ZD6474 (Zactima) This is a phase one study of a antibody that has been used effectively in treating lung cancer. This is the first time it is being tested for head and neck cancer. It limits new blood vessel growth as well as starving the bad cells. This is administered in pill form and is to be taken daily for eight weeks and supposedly has fewer side effects than the Erbitux.

We all know that there is no such thing as a free lunch and that is definitely the case with Zactima. The pharmaceutical company is AstraZenica and they require a bunch of nasty tests, the keeping of a diary, two years of follow-up study, etc. They do pay for the pills and some of the tests but I kept hearing the refrain of an old song from Tennessee Ernie Ford in the back of my head,"...I owe my soul to the Company Store"

Dr. William told me he would have his nurse call me and go over the information. She did call and did fax over 21 pages of information. She told me that I was offered the last slot in this arm of the protocol and she needed to know very soon weather or not I was going to participate. I needed to have further discussion with Dr. William. He called me at 9:15 yesterday morning. One of the things I really like about him is that he returns calls. I wanted him to tell me what I should do. I even sked the great question I had formulated at 3:05 A.M. "If your father was diagnosed with the same cancer and offered the same alternatives as treatment, what would you as a son and a specialist in the field recommend?" Of course, he didn't provide an answer. He said it was a tough question and he didn't know what he would advise. Riiiight!

I reiterated that he told Sally that my kind of tumor has a good prognosis and that I will get well; that this is one cancer that will respond to treatment very well. He agreed with this statement. He told me he felt radiation alone would be enough to cure me and that anything else was just a bonus, the icing on the cake. He felt the outcome would be good. He said the pros for going into the clinical trial was that the side effects would be milder and that it was a pill vs. an infusion. I kept hearing "I owe my soul to the company store." I finally told him I was not going to participate in the protocol opting to go with something that has been proven. He did say my choice was a good one.

So, there you have it. Another day in the life...

Partial Test Results

Today was our meeting with Dr. Weber to get the results of last Friday's tests. Arrival time was 12:15 for an appointment at 12:45. We finally got to see the doctor at 2:30. We now know the primary site is at the back of the tongue (glosso pharyngeal sulcus), We also know that it is a poorly differentiated carcinoma; when we asked what that meant he said it was the other side of a well differentiated carcinoma. The man has a sense of humor.

What is the treatment for this? The answer is radiation which is a given. He may also want me on another drug called C225 Erbitux, which is supposed to enhance the effect of the radiation. This will be determined when he gets together with the oncologist and the radiologist and I'm susppecting that will be on Thursday 9/3. I should hear something either later this week or next. Eventually I will have an appointment with the radiologist and the oncologist as they have to do a setup and assimilation which takes 7 to 10 days. The setup entails taking measurements of my head and making a mask which will be used during the radiation. If they decide to use Erbitux which I suspect they will, it is done in conjunction with the radiology. I'm guessing I won't get started much before the 14th of September. For one with a lack of patience this is driving me crazy.

Dr. Weber did say that the outcome of all of this is usually very good; so I'll keep those thoughts. I asked what side effects I might experience and he told me I would get that information from Dr. Beadle and Dr. William. He did say that I would probably experience a sore throat after 10 days and that I wouldn't feel much like talking. This is not a happy thought for one who does telephone sales.