Onwards and Upwards - Let's Start Chemo!

Zee plan is now for chemo to start tomorrow - Monday January 31, 2011. At 10AM my fiance will call the hospital to see if they have a bed available. Does this seem odd to you? It seems odd to me. It seems like a lot of responsibility is put on the patient for making things happen...

Regardless, my fiance will call and they will tell him what time the bed is ready for him. I will have gone to work and when I get a call from my fiance I will zip home to pick him up and take him to the hospital.

From this point things should happen quickly (according to Nurse Scott). The pick line will be put in his vein right away and they'll start chemo right then. Chemo delivery is not painful. Dr. Webster will be there once my fiance is admitted so we can ask any questions.

On the top of my fiance's question list so far are:

1. Will I have my own room?
2. Will I have a TV?
   

What's that You Say? - Hearing Test - Jan. 26, 2011

Because my fiance's nasopharyngeal cancer is blocking the Eustachian tube that lets air into his right eardrum so it's filled with fluid (at least that's how I understand it), his hearing in his right ear is impaired.

For him, his right ear feels like it's in a bubble. His left ear is fine though.

The good news from the hearing test was that after treatment, it's likely that the liquid can be drained and his hearing should return to normal.

Little Soldiers

Another topic Dr. Webster brought up was infertility. I'm not going to get into it too much because it's pretty personal, so I'll just mention that a side-effect of chemo can be infertility.

Roadblock - Hello Dentist... Goodbye to 8 Teeth - Jan. 20, 2011

Alright, so, let's recap. On Jan. 19th there was a very wonderful meeting with Dr. Webster. He wanted to start chemo right away.

There was a great sense of urgency to start the chemo as soon as possible. Dr. Webster said start on Monday at the latest. My fiance and I discussed this. He wanted to wait till Monday at first so he could have time to mentally prepare for the chemo, but in the end decided that starting Friday would be best.

So Dr. Webster requested a bed in the hospital so chemo could start on Friday the 21st.

All seemed to be well. But then...

An innocent trip to the dentist at the Tom Baker turned into a rushed trip to an oral surgeon to have 8 teeth removed. I was in shock. When I first found out that 8 teeth had to be removed I couldn't understand why. Why couldn't it wait till after the treatment?

Everything happened so fast. Before I could even talk to the nurse on the phone to get an explanation the teeth were already out. This was hard to deal with because now not only was chemo delayed, my fiance was in a ton of pain and he couldn't eat anything to get his weight up for chemo.

I was also frustrated that they hadn't made the dental appointment as soon as he was diagnosed with cancer. Why was it scheduled for 2.5 weeks after he was diagnosed? This was another time when the Cancer VIP Card would have come in handy.

He had his 4 wisdom teeth removed and the 4 molars beside the wisdom teeth. The bottom wisdom teeth were growing sideways into the molars causing cavities, so the molars had to be removed too since they were resting on the wisdom teeth. And since the bottom molars were removed the top molars would have nothing to bite down on so they had to be removed too.

Why, oh why couldn't this wait? Well, apparently all dental work has to be done before chemo and radiation start. For chemo, there can be no risk of infection while having treatments. For radiation, it decreases blood flow to the jaw so any dental work done after has a risk of causing osteoradionecrosis.

Wow, I just googled that word for the first time and the images that came up were nasty! Ok, now I truly understand why it had to be done.

So ya, my fiance had issues getting the bleeding to stop. He pretty much drank Ensures for the next 3 days after surgery. He was not a happy camper!

On the bright side though - it was amazing how quickly he got in to see the dental surgeon. It was only a few hours after the initial dentist appointment that he was driven downtown by his brother to see the dental surgeon.

Chemo Fever = Danger!

The most important thing to remember with this chemo is:

If you develop a fever over 30 degrees Celsius you must go to the hospital emergency RIGHT away. Pack an overnight bag, go to the triage nurse and tell her you're on chemo.

If you ignore a fever for 24 hours it is VERY dangerous. You need to see a physician within 8 hours of getting a fever.

There is a 10-15% chance a fever will occur in the first round of chemo.

And a few more interesting chemo tidbits:

• Chemo takes away your taste for a week
  
  
• The first week of chemo will be very low key
  
  
• BUT - you must keep active - walking is great
  
  
• It can cause ridges in your nails and fluid retention in your legs
  

Dr. Webster Talks Chemo - Jan. 19, 2011

Everyone has seen a TV show or movie where an emaciated cancer patient getting chemo is wheel-chaired into a scene, flashes a feeble smile and obviously has no hair. But what does chemo really do? And why?

There are MANY different types of chemo drugs. Some make your hair fall out because they kill all fast growing cells, some do not.

Dr. Webster said my fiance would be treated with 3 aggressive drugs - the same regiment as is used in the East. The Chemo Cocktail for my fiance is as follows:

1. Docetaxel

• This little baby causes slow hair loss (apprx 2 weeks till follicle evacuation) - joy!
• People can have an allergic reaction their 1st or 2nd treatment cycle, after that it won't happen
• Premeds include Benadryl to handle possible allergic reaction
• Doesn't cause nausea
• Does cause flu-like symptoms like achiness, but this lasts a day at the most

2. Cisplatin

• This drug will be given with the radiation treatment too
• Given with lots of fluids because it can be hard on the liver
• Can be nauseating, but this lasts 1 week max.
  
• Patients are given a LOT of anti-nausea pills before this drug
• Typically the only feeling experienced is queasiness

3. 5-FU

• Please, hold the jokes about the FU
• This drug is given on continuous infusion
• There are no side effects!

How is chemo administered? Well...

The first time you have to be in the hospital so they can monitor you. My fiance will have to stay overnight. Usually it takes 2-3 hours for the docetaxil and Cisplatin, which are given in your vein. For this my fiance will need a vein pick. It's a tube that goes in the vein up to an artery so the doctors don't have to open the vein each time.

The 5-FU takes 48 hours to administer and is given over 2 days. For these days my fiance will get a fanny pack with the drugs in it that is hooked up to his vein pick. The pump in the fanny pack makes sure the right amount of drug goes into the vein at the right time.

Docetaxil has to be administered in the hospital each time.

And that's it for the drugs!

Dr. Webster aka Dr. Amazing - Jan. 19, 2011

On the morning of Wednesday January 19th we finally met someone who cared. His name, Dr. Marc Webster. The amount of hope this man inspired was phenomenal. Here's a link to what other patients have said about him:

Rate My MD - Dr. Marc Webster

I think I'll rate him after this is all over.

So, Dr. Webster is a medical oncologist aka chemo guy. He said he doesn't like to sugar coat things and will tell us everything if we want to hear it. Of course we said YES.

Here's what he said:

• The biopsy showed a squamous cell, looks like it came from the nasopharynx
  
  
• The cancer is wrapping itself around some blood vessels
  
  
• It is nasopharyngeal cancer Stage 4B

Stop! At this point he said something amazing. Dr. Webster said, "It is curable." Three simple words said with palpable conviction. Yipee!

And then he explained further:

• Head and neck cancers are staged differently
  
  
• Instead of just stage 1, 2, 3, 4 - at stage 4, there is also A, B and C
  
  
• Stage C means it's spread to the rest of the body, but stage B means it hasn't

Just on a side note, even if it were Stage 4C, I would still think it's curable. I started seeing a councellor and in 1996 she found out that every lymph node in her body was cancerous. She had over 100 tumors all throughout her body. The doctor said she had 2 weeks to live.

Obviously she's still here today.

Back to Dr. Amazing, I mean Webster:

• The bone scan showed 2 tiny specks in the ribs with low grade activity. This can be caused by stretching or mild bruising so could be completely benign. This needs to be followed up with a PET scan.
  
  
• Radiation is the best treatment for nasopharyngeal cancer
  
  
• Chemotherapy eliminates any micro particles of cancer throughout the body
  
  
• Radiation can't start for another 3 weeks so he wants to start chemo right now
  
  
• He will not sacrifice the radiation though
  
  
• If chemo is too hard on the body, he will stop it
  
  
• Chemo should start within the next 2 days
  

Bone Scan - Jan. 18, 2011

Next up for fun appointments was the bone scan. It wasn't bad, it was just long.

My fiance drank a liquid then had to wait for 3 hours while it moved around his entire body. Then the bone scan happened and I can't really recall what that entailed.

I'm just going to add a link that hopefully explains it:

http://www.webmd.com/a-to-z-guides/bone-scan

The purpose of the scan was to see if the cancer spread anywhere else in his body to his bones. A CT scan of his upper body already showed that the cancer hadn't spread to any tissue.

Biopsy of Primary Cancer Site - Jan. 12, 2011

So Dr. Matthews, we meet again...

Well, I didn't get to meet him again, I was out in the waiting room reading a book. But my fiance met Mr. ENT again in minor surgery.

I will spare you the details, but I will say that when the drugs wore off my fiance was in great pain and couldn't go to work the next day. Something was shoved up his nose so a sample of the primary nasopharyngeal cancer cells could be taken. That's probably enough detail.

More from Jen the Dietician - Jan. 12, 2011

Jen also gave us a glimpse into what life will be like during radiation treatment. For people with nasopharyngeal cancer getting radiation, the following is what typically happens. Of course everyone is different and so reactions to treatment will be different.

• Phlegm in throat means your throat is healing
• Phlegm will be worse during the night
• Do mouth care throughout the night
• Keep club soda beside the bed - it is like saliva so is good to help with dry mouth
• Get rid of phlegm before eating breakfast
• Oatmeal for breakfast is good because it helps get rid of phlegm
• DO NOT EAT ANYTHING LOW FAT
• Fruits and vegetables don't offer much in the way of protein and calories, plus they are hard to chew and acidic
• Don't eat any junk food, it will do nothing for your body
• Make every swallow count!
• Use cream sauces on pasta instead of tomato sauces - tomatoes are acidic plus the cream is fattier so better
• Radiation treatment is like having a sunburn in your mouth, even eating a banana may hurt
• Eat desserts with high calories
• For me as the person living with the person with nasopharyngeal cancer getting treatments, I should not ask if he's hungry, I should just make a smoothie for him, offer it to him and if he even takes 2-3 sips that's great!
• I should not take it personally if he says stuff tastes bad
• I need to neg him to eat gently
• I need to wake him up and ask him to eat
• He should keep a food journal
• No alcohol and no alcohol mouth wash - it's drying and dehydrating

Jen was great. We learned a ton from her. But, I did have to request that she be at the initial appointment. I would highly suggest requesting a meeting with a dietician. I'm sure we'll be seeing her again!

Jen the Dietician - Jan. 12, 2011

Jen is a young woman who knows a lot about cancer and diet. She knew about the special needs of cancer patients who get radiation treatment to the head. This is what we learned from her.

• During treatment don't take single dose antioxidants
  
  
• Do take a 1-a-day multivitamin
  
  
• Boost and Ensure supplements are good, as are the no name brand supplements
  
  
• Get as much protein and calories per gulp as possible
  
  
• During treatment when you can't eat you should drink 7 Ensures a day
  
  
• Pain medications will make you constipated so you need to take stool softeners
  
  
• Keeping yourself nourished is critical - you must stay strong throughout the treatments
  
  
• 2-3 servings of fish per week is good
  
  
• Add protein base to smoothies (e.g., whey powder)
  
  
• You can also add yogurt, tofu, soya milk and coconut milk to smoothies

The most important thing for us that she said was:

• The cancer prevention diet is VERY different from the cancer treatment diet

I researched on the Internet what to eat when you have cancer and there was a lot about no sugar, no red meat, no meat with hormones in it like chicken... The list of Do Not Eat was massive.

But none of this applies when you're about to get radiation or chemo. The most important thing is to keep up your body weight.

This was a relief as we had drastically changed our diet to try to accommodate the cancer diet. Now we could go back to eating "normally". It should be noted though that once treatment is over, the cancer prevention diet goes into full force so the cancer doesn't come back.

Nurse Catherine - Jan. 12, 2011

Nurse Catherine is a pleasant woman with a British accent. The following is what we learned from her:

• Must go to the lab to get blood work done
  
  
• Must get a Panorex x-ray done of the head
  
  
• The dentist will make flouride trays to help protect against the radiation and they'll talk about dry mouth
  
  
• Take extra strength Tylenol every 4 hours
  
  
• The codeine in Tylenol 3 is constipating so get lots of fibre and water
  
  
• Radiation is exhausting, the first 3 weeks will be OK then exhaustion starts setting in and lasts for 3-6 weeks after treatment ends
  

Dr. Lau - Jan. 12, 2011

A week and a day after the appointment with Dr. Matthews - ENT, I went with my fiance to the first BIG appointment at the Tom Baker Cancer Centre. The purpose of this appointment was to get my fiance into the cancer hospital's system and meet the radiation oncologist.

Our day began with meeting Dr. Harold Lau, a radiation oncologist, and his nurse Catherine. And a resident guy who inspected my fiance. There was no sense of urgency with Dr. Lau, which made me feel like my fiance was just another patient.

So what if he has Stage 4B nasopharyngeal cancer... There are others in line and there's a process and nothing will be expediated. Your appointments will be made with no priority given to you. Thank you and good day. This is the feeling I got from the unemotional Dr. Lau.

I think when you have Stage 4B nasoparyngeal cancer, or any Stage 4 cancer, you should get a VIP card. It will work much the way VIP status does in nightclubs. You walk up to any counter in the Tom Baker, flash your card, and you get immediate access to whatever you need.

"Oh, I'm sorry, I didn't know you were VIP! Right this way sir!"

Yes, I can see it all now...

But back to reality. Dr. Lau said the following:

• A bone scan appointment needs to be set up
  
  
• There will actually be 6 weeks of radiation, not 7 like Dr. Matthews guessed
  
  
• Radiation treatment should start early February and go till March
  
  
• My fiance will need to be off work from Feb to March
  
  
• We'll meet the medical oncologist aka chemo guy next week
  
  
• Chemo will be given on Monday of the 1st, 4th and last week of radiation
  
  
• He will also need chemo in April, May and June - once each month
  
  
• In the next 5 years, any dental work needed must be done through the Tom Baker dental centre
  
  
• Purpose of treatment - to get rid of every last cancer cell
  
  
• No clinical trials available to him
  
  
• There's a 50/50 he'll need thyroid medication because the radiation hits his thyroid glands too
  
  
• 10 doctor's on the Tom Baker tumor board will discuss the tumor
  
  
• No need to see a speech pathologist
  
  
• He can still skate and walk
  
  
• First treatment should be in 2.5 weeks
  
  
• Must see dentist at the Tom Baker

Grattitude

It would be good to list the things I am grateful for.

• I am grateful that the cancer hasn't metasticised
  
  
• I am grateful that nasopharyngeal cancer responds well to radiation treatment
  
  
• I am grateful that my fiance won't have to spend too much time in the hospital
  
  
• I am grateful for friends and family who have been very supportive
  
  
• I am grateful that I'm meeting new amazing people with incredible wisdom to help me through my journey
  
  
• I am grateful that my fiance has a great sense of humour and is a strong man
  
  
• I am grateful that Dr. Webster is the medical oncologist working with my fiance because he's an awesomely supportive and brilliant man
  

The First Wave - more on the Jan. 4 appt...

Well, I seem to have gone off on a little tangent in that last post... Can you tell I'm a wee bit frustrated with the process thus far?

I do want to give as much medical jargony info as I can. So brace yourself because here's what went down in the Dr. Matthew's visit. I wrote down all this info because it kept me from having to actually stop and register the implications of what he was saying.

I should mention that up to this point, I had kind of clung to the hope that it was just lymph node cancer and the cancer wasn't elsewhere.

• The middle ear on right side is full of fluid because the tumor is blocking the air tube to the ear. Hearing out of the right ear is impaired.
  
  
• Nasopharyngeal cancer is very different from lymph cancers.
  
  
• Nasopharyngeal cancer is often caused by the Epstein-Barr virus (although I read a medical abstract about this and I still don't understand how, but I guess it's kind of comforting to know where the cancer could have come from)
  
  
• Nasopharyngeal cancer is a genetic/ethnic disease. It is common in SE Asia and is the most common cancer in southern China.
  
  On an interesting side note, I was reading a blog by a guy in Singapore who survived nasopharyngeal cancer and he said his doctor asked him when he was first diagnosed if he was Cantonese. Apparently in Singapore this type of cancer is also referred to as "Cantonese cancer."
  
  Here's a link to the blog: http://nosecancer.blogspot.com/2009/05/what-is-npc.html
  
  
• My fiance was born in Vietnam and his parents are from China.
  
  
• Typically nasopharyngeal cancer remains hidden till it spreads to the lymph nodes
  
  
• My fiance's cancer is eroding the bottom of his skull above the tumor, it wrapped itself around the carotid artery and the nerve that affects the tongue (hence the losing of taste)
  
  
• Nasopharyngeal cancer seems to respond well to radiation
  
  
• Nasoparyngeal cancer cannot in most cases be treated by surgery because of its location
  
  
• Radiation therapy is needed along with chemotherapy
  
  
• In radiation therapy they shape the beam and dose and have to shield the nose and eyes
  
  
• A dentist in the cancer clinic must be seen - all cavities must be filled because radiation is really hard on the teeth. Also, flouride trays must be made so he can strengthen his teeth before each treatment.
  
  
• A head and neck cast must be made to hold the head and neck in exactly the same place for each treatment
  
  
• Radiation for 7 weeks, Monday to Friday
  
  
• Treatment will be brutal but the first couple weeks he should feel ok
  
  
• 4-6 weeks to totally recover from the acute radiation effects
  
  
• Be off work for at least 4 months
  
  
• Start treatment in a couple weeks
  
  
• There will be flu-like symptoms from the chemo
  
  
• The cancer is pretty advanced, which is unfortunate
  
  
• You get it once and hopefully you get rid of it
  
  
• It will knock the socks off you for 6 months to year
  
  
• If untreated, it could have neurological effects and lead to meningitis
  
  
• The cancer has been there for a year

All these bits and bobs were thrown out by Dr. Matthew. The next steps were to get an appt made with the cancer hospital to get my fiance into their system. A biopsy of the primary cancer site - the nasopharynx - was also set up.

What's up Doc? - Jan. 4 2011

At 3:30PM on Jan. 4, 2011 we meet with Dr. Matthews in the hospital. He sits my fiance down in a chair and proceeds to examine him.

1. Ears checked
2. Hearing test with a tuning fork thingy
3. Eye test - is there double vision?
4. Skin sensitivity test - has he lost any feeling on the right side of his face?
5. Nose probe

The nose probe is the most disturbing exam. A long black tube is inserted up my fiance's nose so the doc can examine the tumor.

Oops, I think I forgot to mention that a CT scan was done on Dec. 27 and the report was in the hands of this Dr. Matthews. That is why he is probing around my fiance's nose. Probe probe. Because the CT scan showed a 2cm x 2.5cm tumor in my fiance's nasopharynx.

Who is Dr. Matthews? He's an ENT specialist. An Ear, Nose and Throat surgeon. If the cancer in the lymph nodes could have been removed by surgery, he would have done it. Dr. Matthews also has a highly incompetent admin assistant.

I know she's crazy busy. But to leave a message with the wrong appt date... Not cool. In the beginning there was a complete lack of urgency, perpetuated by Dr. Matthews and his admin assistant.

There was no - we need to get this guy to see oncologists ASA frickin P because he's been diagnosed with T4N2M0 nasopharyngeal cancer. Nope. It was all - "We can't tell you the stage yet because more tests need to be done and you'll get booked into the next available appointment."

Time is of the essence when you're diagnosed with Stage 4B nasopharyngeal cancer, but it wasn't till Jan. 19, 2011 that I felt this was taken seriously.

Day 1 - December 27 2010

It all began back in May 2010. My fiance got sick with a cold that got misdiagnosed all over the place and ended with a paratonsular abscess being drained. At this time his right lymph node became very swollen.

Eh, swollen lymph node. No big deal right? The docs said it would go down within a year. But it didn't.

Quite the opposite actually. If anything it grew. And another lymph node on the right side closer to the back of his head began to swell up too.

Fast forward to mid December 2010. My fiance gets sick again with a cold but the symptoms are similar to the symptoms in May so he goes to the hospital to get it checked out. He's told the story countless times to various doctors and I've been in the room but the exact details of all the hospital visits that followed escape me now.

Long story short - after several visits a biopsy was done on the lymph nodes and the result was cancer.

I guess it's not typical for you to get called in to the hospital if your biopsy results are good. That seems crystal clear to me now. However, when my fiance got called in to come get his results on Dec. 27 and asked me to go with him, I said no. I honestly didn't think anything would come of it.

About 5 hours later my fiance returns from the hospital. I'm sitting at the table with my step dad who is going to take us out for dinner. I ask my fiance what the results were and he says cancer. Can I believe what I'm hearing? The word is too devastating to describe. I get up and hug him. We cry. I excuse us from the table so we can talk in private.

That was the first big blow. And they just keep coming...

Who am I?

I created this blog because I am frustrated with how little information there is on the Internet about nasopharyngeal cancer by people with nasopharyngeal cancer. I'd like to share what I've learned in hopes that some way some how it will benefit someone some day. Does that some it up?

Who am I? Why do I feel I'm justified in writing a blog about this? I am engaged to and live with a man who was recently diagnosed with nasopharyngeal cancer. Although I don't have the cancer in me, I suffer along side him every step of the way. All I want is for him to be well again although I know that's a long ways off. I have hope.

My story is not his story and my journey is not his journey. It's about me and my feelings and my observations. I'm going to take you through what's happened so far.

Breakfast of Champions

I ate 10 pieces of bacon for breakfast this morning.

What? Not the way you thought a cancer blog would start? Well, don't fret, this blog is about nasopharyngeal cancer. There are just so many little ways living with someone who has cancer affects your life and one of those ways for me is bacon.

Back in December 2010, my fiance and I would eat bacon with hash browns for breakfast on the weekend. It was our thing. We both love bacon. What can we say - we're Canadian eh. As of January 2011, my fiance cannot chew much without pain now so he can't eat much solid food anymore. Soups are where it's at.

But I digress, so the bacon was just sitting in the fridge this morning, all lonely and threatening to go bad if I didn't eat it. What else could a girl who loves bacon do? I had to eat it. Eat every last piece.

I fried them all up and chowed them all down before my fiance got up. Now there's no more bacon in the fridge and likely won't be anymore bacon there for at least 6 months. That's how long the doctors say it will take for him to have treatment then recover from the treatment.

My fiance was diagnosed with cancer on Dec. 27, 2010. On Jan. 4, 2011 we found out it was nasopharyngeal cancer. And since then it's cliche, but it's been a frickin roller coaster of emotions. My fiance is 33 years old.