Questions not all answered yet...

Immediately after I put up a post at 3:30pm we were called into an exam room. We were there until 6:30pm, waiting for various folks to come and go, each one poking and prodding Robin's face, jaw and neck. We were delivered the final summary by the two surgeons in about a ten minute conversation at the end. It may have been longer or it may have been shorter, it's often too surreal to actually map clock time to these meetings where we listen to everything they have to say and then we ask a page full of questions which we prepared ahead of time. Most of the waiting time in the exam room Robin and I read magazines. This kept us distracted and prevented us from unleashing a verbal onslaught of questions on the various clinical folks who always seemed to know more than they were telling us during their brief visits to the room.

To give you the full story I just need to back up to yesterday. Tuesday we met the radiation oncologist just to follow-up on Robin's healing. There has always been (like all the way back in August) a swollen area on the right side of her neck, below her jaw. Robin mentioned that it had started to feel sore this past week. The radiation oncologist's reply was, "You'll have to get that biopsied before surgery because they may want to operate on it, and then depending on the results you may need to come back after surgery for more radiation treatments".

So, back to today and the two significant tests they performed.

#1 - the biopsy. While in the office today they performed a "fine needle aspiration" which is a fancy way of saying they inserted a small needle into Robin's neck to gather tissue from the "sore spot" which appears to be in her lymph nodes. They looked at it under a microscope and could see necrotic (or dead tissue). Necrotic tissue is a byproduct of cancer cells which tend to grow more quickly than the body can supply nutrients through blood vessels, causing some cancer cells to die off (become necrotic). The doctors don't intend to do any more testing on the samples they took. From this one look they know that they want to remove the lymph nodes from the left side of her neck during the surgery. End of story there. I guess the untold part of the story is that this is evidence that the cancer had a chance to spread beyond the sinus and beyond the gums. Not really good news, but at least they haven't yet spotted it anywhere else - like in another part of her body. Which brings us to the next test.

#2 - PET Scan. Well, we haven’t got the full story on this yet (why do I keep thinking we're going to get all the answers at once!). The surgeons explained that the main reason for performing the PET scan at this point in time was to detect any cancer which may have spread into other parts of the body. They are still waiting for the final reading by "whoever reads these things". All they could tell us today was that her right sinus still "lights up". Then they went on to say (I think?!) that this is common and they don't know if this indicates dangerous cancer cells, or remnants of the radiation/chemo treatment - but they will know for sure when they do the surgery. So why did they even do this test? Ah yes, it was to see if there is cancer anywhere else. OK, so is there? Oh, well the specialist hasn't sent his report yet. But so far it looks OK to proceed with the surgery plans. Supposedly the final reading will be complete by the end of this week. They will call to let us know if there are any changes. For now the plan is for surgery to be performed on December 11th.

We left feeling a bit under whelmed and awfully tired. Robin's spirits were a bit low at the end of the day. We're going to stay overnight in New York City and head home tomorrow. At the doctor's office Robin pretty much admitted the idea of surgery bothers her. The doctors said her job right now should be simply to keep working on getting stronger and to not worry about the surgery which is "still far away" (let's see, Dec 11th, that's eleven days from now!).

We asked if she will need more chemo and/or radiation. The reply was that the team of doctors will confer and make that determination after surgery.

Well keep you updated as we learn more!

We're tired

It's 3:30pm and we're sitting in the doctor's office waiting for our appoinment to hear about the PET scan results and to discuss surgery. Robin and I seem to be taking turns sleeping. We haven't been sleeping too well so it's easy to fall asleep anywhere this week.

We're carrying the PET scan images from this morning so we've already peeked at them. Unfortunately they didn't enclose the written results so we've got nothing to go on. We looked at the images briefly and decided there's too much on the images for us to figure out what they mean!

De-stressed!

Well, our stress peaked this past weekend! Robin is really not looking forward to surgery (Dec 11th - two weeks from today). She felt it was easier to do chemo and radiation because she was always awake during those treatments and she felt more "in control". Also, with surgery she won't be able to avoid taking pain medication. Pain meds have always make her feel nauseous, weak and dopey - no matter what the doctors have tried prescribing. On top of all that she's worried that surgery will change how her face looks! We joked about asking the doctors if they could throw in a little cosmetic surgery while she's on the table - but what could they do, Robin's beautiful just the way she is! ;)

We are also anxious about the upcoming PET-CT test Wednesday. It will be the first real "test for cancer" since finishing the chemo and radiation treatments. This weekend was the first time we really talked about "what if" something is found. Depending on what shows up it could mean more chemo in the future (ick!). We know that she's received heavy duty treatments but it's hard not to wonder and worry about all the possibilities.

We admitted that in the last few weeks whenever she has had a problem we have each thought to ourselves "is the cancer back". Like last Monday when she threw up lunch, or when she's had a headache, or even when she has had pain in her hip. Talking through all our fears was such a relief - just getting them out in the open seemed to diminish their effect on us!

Our best ways to deal with the stress have been: (1) to have faith that there is a plan for everyone, and so there's no need to be fearful; (2) to focus on living and loving each day (hey - you don't even need cancer to do that!); and (3) taking time to talk about our hopes and fears!

We pray that all is well with you and your loved ones, and we wish you a Happy Holiday Season!

Peace and Love

What is a PET-CT scan?

http://en.wikipedia.org/wiki/PET-CT_scanning

Puttering around the house

Robin gets a little better each day! Usually she talks too much and then she has to take a day off. The skin on her face is looking pretty good, but the inside of her right cheek and the side of her tongue are still pretty raw. The clinicians had stated that it could take two to four weeks to heal and Monday will be three weeks! She spends less time on the couch now and is sometimes puttering around the house working on small projects.

For Thanksgiving Robin had some chocolate pudding and a little egg drop soup - a great improvement over just Gatorade (and all the PEG tube feedings)! Although her taste buds are a little off she's hoping to start soft foods this coming week.

We'll be back in the city this week for more appointments. Tuesday we'll follow-up with the oncology and radiation therapy folks. Wednesday morning she will have another PET-CT scan. That's the test in which they inject her with radioactive sugar and then scan her body for spots where the sugar is concentrated. Since cancer cells grow quickly they accumulate the sugar molecules and they appear as bright spots on the PET scan.

Wednesday afternoon we'll meet with the surgical team to review the PET scan results and to discuss the plan for surgery. We have been told not to be disheartened if the PET scan identifies cancer cells in her right cheek. The treatment plan (chemo-radiation-surgery) includes the surgical phase because it's not uncommon for this aggressive cancer to have survived the first two phases (chemo-radiation). The results of the PET scan may influence the specific surgical plan - we'll find out Wednesday. Surgery is planned for just over two weeks from now - Monday, December 11th.

Happy Thanksgiving!

And Thank You!

It's been five months since our journey began and it's been a roller coaster ride with "up days" and "down days". I am told all the time that we make this look easy, that we face each day with such positive energy!

To a great degree we are exhibiting the cumulative energy, attitudes, hopes and dreams of all of *you* who support us. We could never have made this look easy without all the love and support we receive from family, friends, and coworkers! The many gifts and prayers help lift us and carry us through each and every day!

Today as you celebrate Thanksgiving, know that we'll be thinking of you again and we'll be praying for you and your family to enjoy good health, to enjoy the wealth of good friendship, and to enjoy the gift of each and every day that we have to share with one another!

:)

Michael visits!

(Robin, her brother Michael and sister Sharon)

Robin's brother Michael came from England to help out for a week and a half! He cooks, cleans, rake leaves, cuts grass, and hands out English chocolate (yum)! Michael even helped with stalled house projects by painting the stairwell and upstairs hallway! During his visit was the first time it dawned on me that Robin, both her brother's (Michael and Bill) and her sister (Sharon) all seem to have boundless energy when it comes to getting projects done!

During Michael's stay we had several visitors - including Robin's niece Alison and her cute new son Dillon! Sharon and Ed also stopped by one night for an evening of pizza and playing cards (progressive rummy!). Robin (the ever competitive card player) said she would just watch the card game, but by the end she couldn't help looking over Sharon's shoulder and playing along. I thought Sharon and Robin would be unstoppable, but while I worried about them Michael won the game!

Spotted Robin

We saw the local oncologist today to have Robin's spots checked. We had called the city doctors the other day and they thought she might have "shingles". I guess it's a common affliction for someone with a suppressed immune system (e.g. chemo patients and HIV patients). So Robin was "quarantined" (no hanging out with children or with chemo patients) until the local doctors could have a look at her. When we got to the oncologist's office she was put right into an exam room so she wouldn't fraternize with the other patients in the waiting area.

She doesn't seem to have the classical symptoms of shingles, and the spots seem to be getting better, so the plan is to wait and just keep an eye on the spots in case they start to look worse.

Robin had to skip her morning nap to see the doc, so now she's going to nap right through the lunch hour!

Look who's talking

Robin started talking over the weekend. She spoke a little too much the first two days so that it hurt Monday morning. Now she tends to nap just in the morning and she does get off the couch a few times a day. Saturday we went for a fifteen minute walk!

She's still taking the liquid supplements through her feeding tube. Today her stomach was feeling off all day and then she threw up lunch (ick!). She has tried tasting some food but nothing tastes right. Her taste is supposed to come back, but right now she still doesn't taste anything sweet or salty. She says even her saliva has an off taste.

She has had some spots on her face and a few on her arms and legs. We talked to the New York City doctors today and they want someone to take a look at the spots, so we've got an appointment Wednesday in our hometown. Next week we'll be heading back to the city for a few more appointments.

Decompression

We decompressed a little last night, talking about the surgery and the next PET Scan (test to detect cancer) on November 29th (yes - she is talking a more!). From what I've read it's pretty normal for folks to get stressed and emotional when a test such as a PET scan is coming up. After all, it would be depressing if they detected cancer that had survived all the chemo-radiotherapy! Robin says now that she knows what it is like, it would be scary to have to go through those treatments again.

In our last visit with the medical oncologist (two weeks ago) we asked "what if" they discovered a few cancerous cells during surgery. He emphasized that the reason they do surgery is because there may still be some cancer left. So if they find something "it's not the end of the world". The primary goal of the surgery is to detect and remove any remaining cells.

Robin doesn’t like to stay in the hospital, and she has a tough time taking pain meds, so the surgery is a pretty stressful topic for her. I tried reverse psychology and suggested she just "skip the surgery". Unfortunately she agreed - "let's skip it". So much for pop psychology… We really do have an excellent medical team, so I'm looking forward to getting the surgery completed! (that's easy for me to say)

Robin is finding a little more energy these days. Yesterday we went for a 15 minute walk!

Walking

On Thursday Robin got out twice to walk around the block, each trip was followed by eating and then a nap!

For a week and a half she's had blisters on her face (they look like acne). A few spots are still showing up on her arms and legs, but her face is beginning to clear up a little and looks much better.

The last couple of days she tried putting a couple of small bits of food in her mouth (once bacon, once salmon). Each time she spit it out and said things don't taste right. It would appear she still has no sense of salt or sweet (side effects of both chemo and radiation). She should reacquire her taste after some time. The last couple of days she's tried drinking "Ensure". She noted that being able to pick something up and drink it is quicker than doing the tube feedings. For tube feedings she has to heat up Nutren and a glass of water (if you poured cold liquid in the PEG tube it would instantly give you cramps). She pours the water down before and after the Nutren to "flush" the PEG tube. By pouring water in before Nutren, she checks that there is no blockage in the tube. By pouring it down after the Nutren she flushes the opaque liquid all the way to her stomach, so there is only water left in the PEG tube.

Sleeper

Robin sleeps more than anything else these days. On Monday and on Tuesday she went for a walk around the block (5 minutes of exercise!). Wednesday she had an appointment with a GI doctor to have her PEG tube looked at (it's been feeling a little sore), and she went on a trip to the grocery store - that was an entire day's exercise. She claimed to be up for raking leaves, but the leaves got raked while she slept on the couch!

Her pain level seems to decrease every week. Two weeks ago she was commonly reporting pain levels of "6" and "7" out of 10, now she reports "3". She'll be resting at home through Thanksgiving and then we'll be back in New York City the following week for testing and meeting with the surgeons.

Robin now speaks a few times during the day. She usually saves it up for the nicest words like saying "I love you" with a smile!

Robin speaks up (briefly)

Sunday night our niece Allison stopped by with her four month old son Dillon! Robin spoke (in short sentences) with Allison for about five minutes! Usually Robin's voice sounds garbled, but after a few minutes of light chatting her voice improved! She still has very thick secretions (saliva) but apparently once her vocal cords get clear her voice sounds nearly normal. It's great to hear her talk! We've heard lots of jokes about how having a mute spouse could be a benefit, but it's not nearly as fun as you think. Well, maybe it was for the first couple of days! :)

Today she's back to her old tricks and just not talking.

(BTW - Our charades skills have improved tremendously!)

Sad news from my workplace

I was shocked by some sad news from my workplace - news about a coworker from San Diego named Amy. A while ago she and I had worked on the same team. Recently Amy had gone on vacation with her husband, and upon their return she had been admitted to the hospital for surgery related to a knee injury. Apparently she had either picked up a virus, or developed an infection which effectively postponed the knee surgery. Within a matter of days the illness had overcome her and she passed away. Amy was a happy, smart person and great to work with! The shock of her passing away was compounded by the fact that she was only 44 years old.

Weekend Update

Robin fared pretty well over the weekend. She still sleeps about half of each day. Some days she has her breakfast (a 150ml can of Nutren) and then goes right back to sleep. Some days she's up for a while and works on a project (like helping to make an apple pie) then she sleeps the second half of the day.

Today Robin had an appointment with her primary care physician. Then she was off to the hospital for a chest x-ray and then a final stop at the pharmacy. She completed all the steps for her "pre-surgery physical" and she's been asleep on the couch ever since (going on four hours now!).

The blistering on her face looks like it is getting better, though it's hard to tell for sure. Overall it seems like the individual spots are beginning to soften and merge. We took several pictures so we can check in a few days if we're still not sure that things are improving.

Energy

Robin's had spurts of energy the last couple of days. Thursday she helped rake leaves for about a half-hour and then napped for the afternoon. Today she got out of bed, had breakfast and went back to sleep for three hours. Her pain and nausea seem a little better than last weekend!

The inside of her mouth is still pretty raw. The roof of her mouth and the inside of her right cheek are blistered
white. Her cheeks and forehead have been breaking out. It looks kind of like acne, but I think it's just more blistering. Supposedly the outside will heal first and then a week later the inside of her mouth should be healed.

Her next big visit is in New York City the week after Thanksgiving for follow-up with the radiation and chemo folks, and to meet with the surgical team. Her surgery has been moved from the first week of December to December 11th (the primary surgeon needs to be in Canada the first week of December). Earlier this week we were asking what the chances are of finding any leftover cancer. They said it is possible, but that's the whole idea of having surgery - to remove any cancerous tissue which may have remained. The reconstruction will be important too, but it's secondary to ensuring she is cancer free in the cheek, sinus, upper jaw and palate!

Sleeping Beauty

We arrived home Tuesday evening. Robin seems be doing OK but she sure sleeps a lot now - at least half the day! She seems to have less pain than on Sunday and she's back to using only Tylenol. When she does wake up from the long sleeping spells she seems very alert! For food she's doing about four cans of liquid supplement a day.

The weaker sex??

OK, after seeing all that Robin has gone through I'll have to admit, men may just be the weaker sex! She's gone so far taking so little pain medication and never having any complaints. If I'd gone through this I expect I would have been whining the first week of treatment, and I'd probably be taking every medication they offered! (OK, maybe I would have started whining *before* the treatments started!)

I used to think people with positive attitudes simply made up their mind each morning (consciously or not) that it was going to be a good day. But watching Robin I have to imagine that in her mind she is deciding to be positive moment-by-moment, over and over again! Her symptoms (nausea and vomiting) can be triggered just by getting up out of a chair. She's so weak and tired these days that she can only manage to get out of bed to get to her appointments. It doesn’t seem possible that a person could just "wake up positive" and have it carry them through this type of treatment day after day!

Final radiation treatment!

Robin completed here final radiation treatment today - just in time! She has been increasingly tired, increasingly nauseous, she's only kept down two cans of food today, and the pain finally got to be too much for just Tylenol. Today she tried taking the liquid "Oxycodone" which cut the pain intensity in half, but it's made her very groggy. She looks like a drunk rag doll in bed. We'll see if she has any interest in trying the pain med again tomorrow. (I hope so because I'm not sure how many other pain medications options there are!)

Her brother Michael arrived from England today and has joined us in New York City. If all goes well we'll be headed home Tuesday. If Robin's too tired then we'll wait another day. Speaking of being tired - I expected Michael would have fallen asleep by now (7:30pm) but he says he's staying up for Monday night football!

In regard to Robin, I'm really amazed at how the doctors timed all the treatments. She has really reached her limit for what she could stand. Over the weekend we even joked about staying home and skipping the last treatment! Luckily she gets a month off now!

Weekend rest before the last radiation

Robin will complete her last radiation treatment tomorrow (Monday the 6th). The clinicians noted that her symptoms may get worse for up to a week after radiation and that it will be two to four weeks before she's healed. Her right cheek is quite crimson and the tip of her right ear looks as if it has a summer tan. I guess they've been slowly baking her in that radiation machine.

This week her secretions have been getting very thick. This is caused by reduced output of her salivary glands and probably she's a little dehydrated. Her nutrition is primarily the liquid food supplements put into her feeding tube. Saturday morning she threw up after the first can of the day (in one way and out the other!), but she held down the others. She also drinks a few glasses of Gatorade each day - she tossed up a bit of that last night too. Going to bed she had three small pills to take. Sitting on the couch, she held them in her hand for about five minutes before taking the first one, then waited two to three minutes more before taking the next two. Then she leaned on me for about twenty minutes waiting to make sure her stomach had settled.

She still has pain and nausea. The pain comes and goes occasionally and is now a little more intense ("4 out of 10"), though she also has periods with no pain. The nausea often occurs just from standing up. We agreed to go for a walk yesterday, but once she stood up she no longer felt up to it. The thick secretions are the most persistent problem during the day and often cause her to gag.

Today we'll go back to New York City for tomorrow's final treatment! We'll go late in the day, hoping to miss the traffic caused by the marathon.

Reach the highest peaks

"I’ve learned in climbing that you don’t "conquer" anything. Mountains are not conquered and should be treated with respect and humility. If we take what the mountains give, have patience and desire, and are prepared, then the mountains will permit us to reach their highest peaks. I believe a lot of things are like that in life."

-- Ed Viesturs, first American to climb all fourteen 8,000-meter peaks

Three more treatments!

Robin's got just Thursday, Friday and Monday to go with her radiation treatments. Even though: her mouth is sore, she doesn’t talk, and she uses her feeding tube for eating - the radiation folks say she is doing great! She usually only has pain if she tries to talk or eat something, so by keeping her mouth shut she doesn’t have to take any pain medication (Nurses seem to have an aversion to meds...). Unfortunatly she has been coughing quite a bit lately which can be painful. The radiation doctor jokingly asked with a smile "what would we have to do to knock her down?"

We asked when she would be able to go back to solid foods and the clinical folks said it could be up to four weeks. We've ordered six more cases of her liquid supplement which should get us through that time period. By then it will be time for surgery, so I would guess she will continue with the supplements at least to mid-December. We have met patients who went up to five months using just their feeding tube!