Schedule - September/October

Here is where you can catch the Robin Roadshow:

Week of September 4th - Inpatient chemo all week at Beth Israel
Week of September 11th - mostly home for the week
Week of September 18th - move to the city for 7 weeks

Robin starts receiving radiation therapy on Wednesday the 20th. She will receive treatments Monday-Friday until she's received about 35 treatments total. Each day she visits they will give her one shot for about 30 seconds then she goes home for the day.

Underwear underestimate

Yesterday we stayed overnight unexpectedly, but there is a Filene's basement next door to the hospital so we simply purchased cheap t-shirts and some underwear for the night. Robin bought a three pack of jockeys and she got me one pair of Calvin Klein's - woohoo!

Today Robin's appointments are running late. At this moment she is strapped into a Varian Radiation Therapy simulator machine. It's just like the radiation therapy machine but it doesn’t have the radiation guns. They're doing "planning" with the neutered machine!

When it comes to actual radiation exposure (in about three weeks) the actual machine will focus on the area in-and-around the tumor, but it will also hit good cells in Robin's body (the radiation treatment version of "friendly fire"). The good news is that healthy cells recover comparatively pretty well from this exposure. The cancer cells however don't adjust well to radiation, so over time their numbers will be reduced. In combination with chemo this should eventually lead to a significant reduction in the tumor size. Sometimes by the time they get to the actual surgery they can't even find tumor cells in the body. We'll see how effective the radiation therapy is when the actual treatment starts in 2 to 3 weeks.

Lo and behold they let us know that because they are running late today we may need to come back tomorrow to finish up (this does not even surprise us anymore). I guess I should have invested in a 3-pack of jockeys rather than a single pair of CKs! :)

(5:48 update - they finished everything and we're going home tonight!)

Surprise overnight stay!

We met the medical oncologist today and Robin's white blood cell count is good. We're on schedule for her to start again next week. Oddly enough the Monday holiday impacts us because the hospital is expected to be overwhelmed with admissions on Tuesday, our 21st day. We were offered to start on Monday or Wednesday and we chose to start on Monday morning.

We also met with the radiation oncologist. Robin said this disease (SNUC) "snuck" up on her and he said sarcastically "I never heard that one before". In effort to impress him Robin then sang her cancer song which goes something like "I've got a tumor on my face, I'm a special medical case". Guess we'll have to film that for the weblog ;)

He described how they will apply radiation not only directly to the tumor, but also to all the sinuses. Just like chemo, they will not just target the obvious mass. He said no matter where they think the cancer cells reside, they always show up in adjacent areas. He asked that we come back in tomorrow to start the preparations. Tomorrow they will create a mask which helps position Robin's head at each treatment, and helps to protect certain areas of her head from the radiation.

Our Tuesday appointment is late in the day so we get the morning off! We'll head home Tuesday night and plan to be back here Sunday night for the start of chemo round two! Robin did do the chemo dance today, but it wasn't quite as enthusiastic.

Twenty Years

Monday is the Twentieth anniversary of the day Robin and I met. I could never have imagined we would spend the day meeting with oncologists...

Short hairs-cut

Robin did get a haircut Thursday and opted for a short cut. We're listing questions for the Oncologist Monday. She wants to know if the hair on her legs will fall out so she doesn't have to worry about shaving them every time she goes to the hospital!
:)

What - me chemo?

Thursday night Robin said it was starting to dawn on her that she was undergoing chemo. Hmmm, I thought what was her first clue? Was it the daily nausea earlier in the week, or was it the blistered bloody lips she had the last three days (her lips are much better today)?

Anyway Saturday has been the best day so far. Her lips are healing pretty well and she has eaten regular food two days in a row (albeit in small amounts)! She had visitors Friday (Betsy) and Saturday (Joy and Fran), and yet Saturday evening she still had energy to do a bunch of light house cleaning. Things took on a semblance of normalcy as we did chores around the house! I never thought I would be so happy to have her starting talking about chores for me to do ;)

We have noticed the tumor (which responded so well to chemo) is now growing back at a rapid pace. We notified the clinical folks Thursday. We'll be meeting with doctors in NY on Monday so we will be able to ask whether this pace of growth is to be expected. Personally I'm ready for Robin to start Radiation Therapy ASAP if chemo is only going to give temporary results!

Livestrong!

Lisa, Robin and I met for coffee and we bumped into an old friend (and fellow pilot) Lenore. Her family has had its share of cancer and she is determined not to get it herself. She exercises, eats right and takes care of her body. After chatting a while Lenore walked to her car and came back with a Livestrong t-shirt and sticker for Robin. She said she had these items with her for a many weeks and it just struck her that she must have been carrying them around for when she saw Robin!

Visiting nurses

We had our first visit from "Visiting Nurses" Tuesday. The nurse came to the house to check Robin's port and PEG tube. She was really helpful in answering questions like what side effects are normal to have, how long do they last, when will we know if Robin is going to loose her hair. She explained that most of the effects of chemo will have appeared within four days - and today (Wednesday) is Robin's fourth day since finishing the first course! The nurse also explained that the effects are not cumulative, so the second and possibly third treatments should now cause any worse side effects - news we're pleased to hear! (This morning Robin's lips are chapped and raw…)

In regard to hair she suggested Robin might want to get it cut shorter and shorter the next couple of weeks, so if it falls out it won't be such a shock. The nurse said that it will just happen one day that Robin will wake up with it all over the bed, or a clump may fall out in the shower. Of course, Robin wanted to know if this would be a solution to having to shave her legs! The nurse suggested flannel sheets were good for catching loose hair. She also recommended some sources for getting wigs. She noted that the hair doesn’t always grow back right away. It might come back in patches and it might take a couple of years.

We had assumed the nurse was so knowledgeable because she has provided home care for cancer patients for over 10 years. As it turns out the nurse is also a cancer survivor. She noted that she had been treated a year and half ago, so a lot of her knowledge came from her experience.

Lisa to the rescue!

On Monday, our sister-in-law Lisa arrived to help out. Lisa is Jonathan's wife so their family is pulling nursing duty two weeks in a row! Yesterday was Lisa's birthday so we cooked filet mignon for dinner and we had corn from the farm stand down the street. Robin even tried a little bit of meat and corn! Jon's a bit jealous because he just got "take out" pizza in the city - but it was excellent New York City pizza! ;)

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Talk Nasty to my Tumor

At Beth Israel they have a whiteboard in each patient room. They encourage the patients to write the three top things that will make for an excellent stay at the hospital. Here are the three things we initially wrote on Robin's board. It was updated later, but #1 remained - "Call me Robin the Cancer Slayer"

Sunday, Day of Rest

Robin relaxed in the backyard yesterday. She's starting to eat some solid foods like pudding (is that a solid food?) and oatmeal. Some friends sent her chocolate and potato chips in the mail and she's anxious to work her way up to potato chips!

Sunday she also had an injection of Neulasta. As noted earlier, the chemo kills off the production of white blood cells. Neulasta helps kick that production back into gear.

Robin's schedule for the next few weeks:

Sept 25th - blood test to check white blood cell count. This will be a factor in deciding whether she will get two or three courses of chemo.

Sept 28th - appointment with the Radiation Oncologist (who Beth Israel acquired him from Sloane Kettering). He'll decide which type of radiation machine to use and what dose will be applied to the tumor.

Sept 5th - Start second 4-day course of chemo. If she is only going to get two courses then radiation will start the same day. If she's going to get three courses then she will do 4 days of chemo and 17 days off and radiation will start with the third course.

Sept 26th - the prospective date to begin the third course of chemo.

Sleeping at home

Robin finished her continuous "5FU" drip at 12:30pm. We left the hospital soon afterward and arrived home about 4:30. Robin slept for most of the drive. When we got home she ate some Jello and a poached egg before falling back to sleep. When she awoke she ate chocolate pudding!

The first course of chemo went very well. We could see a very noticeable shrinking of the tumor! Robin is experiencing much reduced pain and discomfort. The tumor showing in her gums has definitely receded. On the downside she has had trouble eating anything solid for several days and she has been very sleepy. Mild nausea was pretty common, but well controlled with compazine. Now that she has the PEG tube, eating solid food is less critical because we can put food right into her stomach but it's great to see her eating again!

Jonathan is on his way back home. Thanks for everything Jonathan - it's hard to explain how much you helped us by going along on the trip! It was great to de-stress with you over pizza, and it was wonderful that you could accompany Robin for procedures while I went out and worked out details for our next trip down. We had the best Chinese food in New York (steered there by cousin Petey) and lots of pizza!

Would you like to buy some property in Florida?

We had felt really well informed about the type of cancer, its characteristics, the treatments, and where we needed to go to get the best treatment. Now that we're in the treatment phase I feel pretty poorly informed (I guess Robin feels the same way). It seems that chemo and radiation are somewhat customized so you can't just talk to someone else with a different type of cancer and expect to have the same experience. The other person likely had different drugs administered in different ways with different side effects. Furthermore the nurses say that even two people with the identical disease will not have the same experience! So basically there is no way to forecast what Robin is going to go through over the next three to four months, though we understand the range of possibilities.

Just 48 hours ago I was thinking that we'll go home this Saturday after the four days of chemo and next week things will be back to normal. I'll go to work and Robin would be home tending to the garden until September 5th when course #2 starts. Each day we proceed and each new piece of information we learn seems to indicate that it won't be so easy. I wondered why people talk about having a support network throughout this type of experience. This afternoon, after watching her lie in bed for six hours not moving, I understand completely why this is a job for more than one person!

Overall, I'm starting to get this feeling like we've bought property in Florida sight unseen - only to find upon our arrival that the house is not what we were expecting. The inside doesn't match the photos in the sales brochure, the view is of a pond and not the ocean, and everything in the house doesn't seem to work quite right.

We signed up to do everything possible to ensure Robin the best possible outcome, so whatever comes our way (in terms of side effects, etc.) we'll accept and we will just keep moving forward!

Hair today - gone tomorrow (no, not Robin's hair yet)

Robin started the day by looking peppy for about 30 minutes. Then she ate a few spoonfuls of yogurt and she has been wiped out ever since. At first it looked like we would have a day of hanging out and chatting. But so far she's just laid still in bed looking drowsy.

Today the nurse reviewed how to give liquid food through the PEG. She mentioned that each day we should put through at least one 8oz can, and eventually Robin will get five cans a day. I asked if that was when radiation therapy starts and the nurse said "no" it could be very soon since (apparently) the side effects of the chemo are not just going to occur during the four days of treatment here in New York City, the side effects will continue to mount over time. I guess reality is starting to set in. Although Robin had read stories of people getting chemo and going back to work, she may or may not have that type of experience. I now think back to the Monday meeting with the oncologist who said Robin is going to get a comparatively heavy dose of chemo. The good news is that the tumor in her cheek and gums is already showing signs of shrinking a little - for that we are happy!

The chemo medications are designed to damage cancer cells as they grow and divide. The medications have the most impact on rapidly growing cells, unfortunately they also attack normal rapidly growing cells in your body. The most common normal cells affected are blood cells which grow in bone marrow (so your white cell count drops and you become prone to infection), cells lining the digestive system (so you may have trouble eating) and hair follicles (that's why hair is prone to fall out!). Whether Robin will get three chemo treatments partly depends how much havoc the first two treatments have on her. My sense is that the more chemo courses Robin completes, the more cancer it will kill (but that's an assumption on my part...). If the first course really devastates her body's good cells, then they will only plan to complete two courses. That's why they can't tell us what will happen next until they test her blood in a couple of weeks.

Robin says to everyone - "please send me some positive energy!”

It's 9:00pm and she’s already feeling better and talking more this evening!

World’s Greatest Dental Office!

Writing about people who have been so generous along the way just reminds me of our family dentist: Dr. "Tom", his wife Denise and the entire staff. Tom saw Robin more than any of her other healthcare practitioners saw her in June, July and August. Whenever we called with an issue the folks in the office would ensure she was seen as soon as possible. As her upper right gums began to increasingly bother her, Tom kept an eye on her teeth.

Last week when it appeared time to pull the upper right molar (it was floating around in her gums and no longer secure) he said to just state “when” and he would be available to do it. As it turned out, last Saturday was the right time for Robin and Dr. Tom showed up at the office at 8am to take care of her. Taking the tooth out Saturday gave her some relief from the pain in her mouth and cheek. We mentioned that Robin will need some other items (e.g. fluoride trays to treat her teeth during radiation) and again he said - anytime she's available he can be in the office.

Tom and his staff have always provided exceptional healthcare and all their efforts during this trying period have just propelled our opinion of them to a new, higher level!

Robin Morph(in)ed

Thursday Robin was feeling a little nauseous. The doctor had prescribed some antiemetics (anti-nausea medications) which we picked up at the pharmacy before going to the hospital. One prescription was for three pills to be taken the first three days. Robin missed the second day which probably accounts for the nausea Wednesday. Once we realized it, she took pill #2 and now at least she is not nauseous.

Unfortunately today they put in the port and the PEG tube. The port placement at 7:30am went well. Although she returned to the room a little wiped out she seemed OK. After getting the PEG at noon she really wasn’t feeling well. If she tried to sit up or roll over her abdomen was really painful. They gave her morphine, and then 30 minutes later Robin asked for more meds (and Robin never likes to take meds…). They gave her more morphine which seemed to make her drowsy, but she was still in a bit of pain. It’s now 8pm and she finally seems to be sleeping a little bit! The nurse says the pain is normal, but by tomorrow Robin’s likely to feel fine.

Jonathan accompanied her to the PEG procedure, while I went and gathered more information about places to stay while she gets radiation therapy. It will be Monday thru Friday for seven weeks, so we will essentially be living in the city.

Tonight I’ll sleep over in Robin’s room. Jon will sleep in Soho! We’ve slept at a few different locations this week. Folks have been so generous in helping us find accommodations. Early in the week Robin’s cousin Peter had us over for three nights. We then found space in hospital housing across the street from the hospital which was closer. We had been told the housing was full, but when we walked in and asked, the fellow at the front desk went to work for ten minutes and came up with space for us!

After we had moved in, Jon bumped into a relative (Michael) on the street. Michael is a male model and lives in an apartment right across from the hospital! He offered to let us crash at his place anytime - also he knew of an empty apartment in Soho, so tonight Jon will be there!

Wednesday Afternoon

Day two and things are going well. Robin felt a little naseous today and was giving a medication to help. Tomorrow they will install a port which they will be able to use to administer medications in the future. It's kind of a semi-permanent IV which will be under her skin. They will also install the PEG tube in her abdomen. It will stick out a few inches and is about the size around of a pen. If she doesn't feel well enough to eat then she will be able to just put liquids like Ensure right into her stomach.

Her mood is pretty good. She's got a big "Hello Kitty" doll from Amanda keeping her company around the clock! G

Chemo Begins!

Robin was admitted to the hospital at 2pm today. After a bunch of preliminary work they started by giving her anti-nausea medication at 5:15pm then Cisplatin at 6:30. At 9:30 the Cisplatin finished and they started FU5.

A cycle of chemo is 21 days. It starts with 3 hours of Cisplatin, followed by approximately 96 hours (4 days) of FU5. After the first 4 days Robin get 17 days off during which time she can go home. On the twenty-second day (September 5th) she starts the second cycle which simply repeats the four days of treatment, then 17 days off. If necessary, after another twenty-one days (Oct 26th) she starts the third course of chemo.

We haven’t met the radiation oncologist yet. The Oncologist (who prescribes chemotherapy) explained that typically radiation will start with the last course of chemo. He doesn’t know if Robin will have two or three cycles. If she goes for three cycles then the third cycle would start October 26th and radiation would start the same day. So that week while she’s getting chemo she will also start going to radiation each day. Radiation then continues until she has completed seven weeks straight. She simply needs to show up once a day and get irradiated for a minute.

We’ll confirm the actual course of radiation therapy when we meet with the radiation oncologist. He is the fellow who will recommend the type of radiation machine to be used and the dosage of radiation to be applied.

Robin says “I’m getting chemo"

What a day! After we checked in to Dr. "Bruce"’s office we met a nurse and asked if Robin’s getting chemo today. The nurse said it wasn’t likely, usually it takes time to get arrangements made so it doesn’t start right away.

Then we met the Oncologist Dr. "Bruce". He said in Robin’s case he would admit her right now and start chemo today, however he needed insurance authorization (we didn’t even have authorization to see him, we just paid him out-of-pocket). Well, more calls, more meetings with folks to try to get a letter off to Robin’s primary care provider. Then we got the right people involved! At 4:00pm we got a call from home stating that the primary care provider still hadn’t received the letter to start the request. Then whammo, we get a call from our New York City doctors. The letter was taking too long so they just skipped the primary care provider and just called the insurance company themselves. They had gotten authorization and everyone’s ready to go. We like taking shortcuts - we've been taking them all along the way!

On Tuesday (11 days after diagnosis) Robin will be admitted to Beth Israel and will begin chemo – she’s so excited! :)

Activating the troops!

Last Wednesday Robin’s friend Connie (an R.N.) came along for the ride to Beth Israel. It was quite a relief to have someone who could take care of Robin during the car ride to the city. In addition, it was a relief that she also took excellent notes at the meeting. When meeting with doctors Robin is obviously the center of attention. A friend at work is also married to nurse who is a cancer survivor. He forewarned me that the nursing/clinical side of Robin’s brain was likely to shutdown during the meetings with doctors since she is now the patient. Having Connie along helped us document the meetings, gather the technical details and talk about them!

Today my brother Jonathan is driving in from Massachusetts. He’s going to travel with us this week to New York. Robin has a cousin Peter in New York and he has graciously offered to let us all stay at his place tonight and Monday. It will be great to see him again because he’s always so positive and so full of energy! On Monday we will be meeting with someone from the doctor’s office to work out temporary housing during our stays!

Saturday surprise!

We got a call this morning from Elizabeth, a Physicians Assistant at Beth Israel (BI). She supports the surgeon and she's our advocate/point-of-contact at BI.

She wanted to confirm we had our 11am Monday appointment with the oncologist setup. I said we'll be there, and then she asked what we were doing for housing. I said we plan to meet with the administrative staff Monday afternoon so we will be prepared for when the treatment starts. Elizabeth then said "they are planning to start chemo Monday morning during R's appointment" and continue through the week....oh boy, we've got some packing to do!

First Trip to Beth Israel in New York

Thursday a.m. update - At Beth Israel (BI) Wednesday night we filled out paperwork and then we were put in an exam room at 8pm. Robin was examined by the Chief of Head and Neck Surgical Oncology, the Chief of Oral and Maxillofacial Surgery, and the Director of Prosthodontics & Maxillofacial Surgery. Hmmm...sounds like a good team to have on our side!

The recommendation is to do chemo and radiation first (for seven weeks) and then probably surgery afterward. They have had several great successes using this treatment. In some past cases when they got to surgery there was no cancer to be seen. These folks reiterate that the location in the lower sinus is a great plus.

The plan is to have the Chief of Pathology review her slides, and to schedule an appointment with the Chief of Radiology Therapy and an Oncologist, preferably Monday at BI. Presently we have confirmed an Oncology appointment Monday – the Oncologist is on vacation, but will come in to see R. We are still awaiting word on the Radiology contact.

The last few days our stress level has increased. We would really like to proceed with these folks and we would like to count on the fact that all this will be approved by our insurance company. If we have an issue with approval then next week our world would be turned upside down. As we have done in the past we decide to trust that everything will work out and move ahead as quickly as possible.

We return home with a list of follow-up actions to complete. Robin has been feeling nauseous and sick for 4-5 hours a day so we need to get that checked out. Also the BI folks have asked us to find a local doc to insert a PEG tube into Robin. This is a port on your stomach which goes into your digestive tract and allows you to pump food into yourself without having to eat it.

Meanwhile, her upper right molar is being overtaken by the growing mass in her gums. A couple of weeks ago I would use a flashlight and mirror to check behind that tooth. Now she just opens her mouth and it’s easy to see the expanding mass enveloping the tooth.

Thursday-Friday updates

Friday p.m.

Today Robin submitted a sample to the lab so they can try to detect why her stomach has been upset. We have been trying to setup an appointment for her to see a local gastroenterologist to check her stomach, and also to try to schedule the insertion of a “PEG” tube. It appears everyone is on vacation. After 4 hours we managed to get her a local appointment at the Gastroenterology office.

Fifteen minutes later we get a call from BI that the Oncologist will come in from vacation and can see Robin Monday at 11am. The scheduler confirms that the oncologist will probably evaluate her and then will follow-up with a recommendation. Oh well, guess we need to cancel the local appointment for Monday and get out of town.

Robin’s tooth is still bothering her. Our family dentist is the greatest doctor in the world. He says he will take out the tooth anytime that is convenient for us - day or night.

It seems like a month since the original diagnosis and yet it's only been seven days!


Thursday p.m. update

We arrived home from the Beth Israel trip at 1:30 Thursday morning, and got to sleep around 2am. I was up again at 6am to write letters to update the local Head and Neck surgeon and R’s primary care provider.

Robin also had to be at the local Medical Center in the morning for the PET scan, which appears to have gone well. We fedexed the PET scan output to BI for their review.

We followed up with Beth Israel and made appointments with the Oncologist and the Chief of Radiation Therapy. The oncologist is on vacation for two weeks and the Radiation Oncologist is busy. They both gave us appointments on the 28th – about two weeks from now!

The insurance company comes through!

With tremendous support from our local physicians, our healthcare insurance company has authorized the trip to New York tomorrow. There's one less thing to worry about - it saves us from wondering what the bill would amount to and the costs for any potential diagnostic tests.

It seems like weeks since the diagnosis last Friday, but we are starting to feel like we see the light at the end of the tunnel. By Thursday noon we think we will have all the information we need to choose a path and we'll have all the presurgery tests complete! If everything falls into place we are hoping that a physician will be available to schedule surgery next week.

Positive meeting with Dr. G!

Today we met with Dr. G who handles many of the Head and Neck cancer surgeries in Upstate NY. She sees SNUC once or twice a year. She says it is in a good location being in the lower maxillary sinus (as if it's good to have it at all!) and it looks contained so far. Many times patients take many months to get diagnosed then the cancer has spread and they just go right to radiation and chemo (why bother with surgery if it is in lots of places…). Robin and I get the prize for always questioning the early diagnoses (i.e. sinus infection). Robin also says to Dr G. that I always get her quick appointments - I attribute that to my ability to whine incessantly over the phone! ;) Thursday Robin will have a PET scan which will help identify if it has spread. That's the next check point!

Surgery would be performed through the mouth (Robin says "darn I don't get to shave my head yet!"). They would take some upper right teeth and a portion of her palate. If done in our hometown they would create a type of denture to replace the missing area.

We mentioned getting a second opinion and Dr. G said it's always a good idea. We state that we have an appointment 7pm tomorrow night at Beth Israel in New York City. Dr G. says "Oh, you're going to see Dr. Urken?". Apparently she works with him all the time, occasionally sending him referrals and providing follow-up on his patients. She expects we will have a very good experience with him. Even if we see him, she will continue to be our local coordinator for care - great because we like her already!

This coincidence with Dr. Urken and Dr. G makes us feel like we are on the right track. And the outcome of the meeting with Dr. G is positive!

Skydiving?

I had asked Robin if she wanted to do anything special for the weekend like go skydiving. She made the observation that people seem to go skydiving to scare themselves silly and face their own mortality - she said she's already got that lesson.

Saturday hooky - planting sunflowers

Saturday morning and afternoon we played hooky in the backyard. We setup a flowerbed and planted sunflowers! R still tires easily so I tried to do all the hard work and make her sit, but she just can't be stopped from getting her hands dirty.

In her surgery last Friday the doctor removed malignant tissue from the maxillary sinus and cleaned out the sinus, but he held back from getting into her gums. We can feel the remaining mass in her cheek (small marble size) which is getting larger and harder each day (no it's not simply swelling).

By 3:00pm we got back to business and started going back over journal articles to understand the best course of treatment. The articles have some icky statistics - but they are also retrospective studies of patients in the 1980's and 1990's. We wrote down our questions about treatments and called our best advocates J and her husband Y. My wife R and J went to Nursing school together in the 1980's and J went on to become a Nurse Practitioner, along the way putting in ten years in Oncology/Hematology. J's husband is a Physicist who performs the final installation and testing of Radiology Therapy machines, and by coincidence is involved with installing a state-of-the-art Tomotherapy radiation machine at the same facility where I work.

These two not only have positive personalities and strong technical backgrounds, but they have contacts you wouldn't believe! By the time we called them in the evening it appears they had already done a full days work. In addition to answering our questions they provided information from cancer researchers they had located and e-mailed; data from internet searches; and data from a "SNUC" message board they had found and were mining for information. Unfortunately they have been through this process with their own family members and they seem determined to make sure that we leave no stone unturned, and we end up with the best care available! Two truly amazing people!

We end the day with a game plan to start setting up appointments at the University of Pennsylvania in Philadelphia and Sloan-Kettering, as well as a formal heads-up to our healthcare insurance company. Sunday will be a day of generating e-mails and letters to get the process going. Although a standard approach would be to wait for our local doctors to establish contacts at these facilities, we are taking the do-it-yourself approach.

BTW - How are our spirits?

Well obviously we have had our ups and downs! Overall I would say we are hanging in there pretty well. There's not much choice but to stay positive and to keep plowing ahead! I asked Robin if she wanted to do anything this weekend like go skydiving, but she has chosen to plant sunflower plants in the yard!

Thanks for all your support - the positive thoughts and energy are greatly appreciated!

Anticipated activities in the near future

Our expectation is that we will meet one or more head and neck cancer specialists in the next 7-10 days (we have one appointment setup next week and we are working on lining up a second opinion). The appointments will probably result in some more tests to pinpoint the areas where the malignancy still resides.

We anticipate surgery to follow the appointments within about 7-14 days. The goal of the surgery will be to remove the areas of sinus and gums which contain cancerous cells. During the surgery they may perform some or all of the reconstruction of these areas (we will learn the specifics as we proceed).

It's appears likely that after the surgery, radiation therapy may be prescribed. If so, it is likely to commence about three weeks after recovery from surgery (when the swelling has gone down) and could last four to six weeks. Once again, we'll have more details as we proceed.

G

The History up to diagnosis

Here's the *really* short history on the story of my wife's life as a cancer survivor to date:

On June 14th Robin had a HUGE headache. The prior three days her nose had bled three days in a row - just once each day.

What followed was six weeks in which we saw a primary care provider; three Ear, Nose and Throat (ENT) doctors; two ER physicians; a dentist and an oral surgeon. In that period Robin had both a CT Scan and MRI which were read as indicating a sinus infection. These folks tried to help us understand Robin's increasing pain, and the swelling of her right cheek and gums which began on 4th of July.

On July 18th we saw an ENT who used a nasal endoscope to look up Robin's nose. He could see foreign tissue blocking the passage to her right maxillary sinus. He could not break off a sample, so he scheduled surgery for July 28th to clear out her sinus. We acknowledged that it could be a poorly placed polyp which blocked the nasal duct, or it could possibly (but probably was not) something as rare as cancer in the sinus. Hey - only 2,000 people get that each year and the ENTs we've spoken to only see it once or twice every ten years. The doc was clear that he would start with endoscopic surgery, but if the blockage were severe then he might have to use an alternative procedure (Caldwell-Luc) and make an incision in her gums to get to the maxillary sinus in her right cheek.

Robin had surgery last Friday (the 28th). The doctor first went in endoscopically and removed a bunch of tissue which he sent to Pathology. They replied that the sample was made up of necrotic (dead) tissue. Necrotic tissue happens to be a byproduct of cancer outgrowing the local blood supply. The doc then proceeded with the Caldwell-Luc procedure. Now he could see a mass of tissue. The lab stated that the new sample was a large cell malignancy (cancer) but they couldn't pinpoint the type. Here's one experience in which you would wish to have an "average" disease, and not be special…. The doc cleaned out the sinus, but he did not try to follow the apparent path which it has taken to her gums. We would eventually get the final lab results and then decide how best to proceed.

Today we got the lab results (one week later). Robin has been diagnosed with SinoNasal Undifferentiated Carcinoma (SNUC). We have an article from the Journal of Oncology regarding the "Management of Paranasal Sinus Malignancy". The article notes that there are 2,000 cases of nasal cancer a year, about 1,000 are benign and 500 to 800 are a squamous cell carcinoma. The remaining cases (about 350 a year) are made up of five different types of cancer. SNUC being one of the more rare. So fewer than 60 people in the U.S. are diagnosed with SNUC each year. The article notes that SNUC is "characterized by very aggressive local growth, regional and distant metastisis" It also notes that "Recently, aggressive treatment prorotcols involving comibination therapy with subsequent craniofacial resection have shown promising results".

We do figure that we have the following going for us: (1) Robin is in relatively good physical shape and health (except for the cancer!), (2) the initial position is in her lower maxillary sinus (cancer in the other other sinuses is even more dangerous, (3) we arrived at the diagnosis only seven weeks after the first symptoms, and (4) we've got an incrediblely strong support group of family and friends, all of whom are thinking positive thoughts and many of whom have strong backgrounds in healthcare!

Our next appointment is Tuesday morning and we'll take our next steps then!

Thanks for all your support!