Rockin' Robin

Robin and I were coming up in the elevator earlier with one other passenger who was going to an upper floor. This woman's cell phone started going off and playing a Latin dance rhythm. Robin didn't miss a beat - with her feet planted firmly on the floor she started gently gyrating her upper body and arms to keep up with the music. I joined in and we moved and grooved for a few seconds until the elevator reached our floor. The woman smiled and laughed and said everyone seems to enjoy her ringtone!

Cancer weight loss program - don't enroll (ever!)

This week the Oncologist referred Robin to a Nutrition doctor. The Oncologist was raising a "red flag" about Robin's weight. On August 15th before the first chemo she weighed 129lbs. On September 4th before the second chemo she weighed 124lbs. This week before the third chemo she weighed 119lbs. To the clinical staff this is a disaster in the making. Robin had assumed that since she gained about ten pounds in the last year then it would be no big deal if she drops back ten pounds to her normal weight'. I had even assumed that if she got a little low then she could always beef up a little bit on French fries and milkshakes. In fact, the clinical folks have said that all the things we had considered diets "no-no's" in the past should now be part of her daily diet - preferably lots of high protein and high fat foods! They suggest using butter generously, use milk in place of water in soups and hot cereals, eat lots of cheese, drink beverages that contain calories such as fruit juice, make sure to eat dessert! This advice sounds crazy in our diet conscious society!

Here is how the Nutrition doctor (an internal medicine specialist) summed up the current issues:

1) Any downward trend during treatment is unhealthy. If Robin were to get too weak then they might have to suspend chemo and/or radiation treatments briefly, thus delaying her progress in fighting the cancer.

2) At this stage her body is experiencing "inflammation" and when she loses weight her body is drawing it from her muscles - not from her fat stores. The loss of muscle mass can become critical in some patients because the heart is all muscle! (people who have eating disorders such as bulimia often die of heart attacks because their heart loses too much mass). To compound things, if Robin eats extra to make up for the lost weight her body will be very efficient at converting the food and storing it as fat. So any muscle mass she loses now may be "permanently" lost muscle until after the treatments are over and she can get back to a normal routine of eating and exercise.

3) To top it all off - Robin is at the very beginning of the radiation phase and this is the phase in which weight is a critical issue because eating becomes so difficult. During chemo her ability to orally consume foods comes and goes. During radiation it's quite possible that she will reach a point at which she cannot consume any foods orally due to pain from mouth sores and raw, irritated tissue in her mouth and throat.

4) The first few weeks of radiation are the most dangerous. During this period patients are most likely to start eating less orally and not making up for it by getting nutrition through their feeding tube. In a matter of a few weeks patients can lose quite a bit of weight before they get control over their diet. In some cases patients are admitted to the hospital and they are given IV nutritional fluids which contain everything you need to keep on weight.

In Robin's case we've created a weight gain plan! Her minimum food intake is 1,800 calories a day which she can get through six cans of Nutren Probalance (it's like ensure). Each morning we draw six squares on a piece of paper to represent the six cans worth of calories which she's required to consume. As she eats things for breakfast, snacks and lunch she writes items in a square. When the items total 300 calories she crosses off that square and starts writing in the next square. By the evening she has to make up any open squares by pouring cans of Nutren in thru her feeding tube!

Sleep, Eat, Sleep, Walk, Sleep…

See a common pattern here? Robin planned on a walk Wednesday. We walked a block and then headed back home where she took a nap. Today she planned a bigger walk. We walked for twenty minutes and then came back to the apartment where she's taking a three hour nap. This chemo week is going very well indeed!

She takes steroids for a few days after chemo and she takes anti-nausea meds every eight hours. The chemo treatment plus the combination of post chemo drugs makes her very sleep prone! The great news is that her overall symptoms have been very mild compared to past chemo treatments. She's had very low level nausea occasionally, but she hasn’t had too many episodes of dry heaves or actual throwing up. Anyway she seems to have conquered throwing up when it does occur - because no matter how bad it is she can vomit and then still come up with a smile (hey - wipe that goop off your chin Smiley!). I figure it’s a great sign that she prefers to be in control of her disease rather than vice-versa.

Tonight my cousin Christy is planning to visit (she's taking classes just a few blocks away from our apartment) - maybe we can find a restaurant with something on the menu which will appeal to Robin!

Good day!

This evening the injection went well, though I spilled a tiny bit! So far Robin has had some mild nausea, but she is definitely feeling better than past treatments!

It's been a while, but tonight she and I did talk about how we each occasionally have doubts about how things will turn out. It actually felt really good to be able to talk about it as a couple. Then (as we typically do) we talked about our plans for the future together. We also talked about changes we would make in how we live our lives based upon this experience.

Having seen Robin go through this, is there anything you would change in how you live your life?

Injecting Robin

Robin receives an injection of "Neulasta" the day after each course of chemo ends. This stuff "jump starts" her production of white blood cells. Without the injection her white blood cells would take longer to become plentiful again so she would be more prone to infection, and if they did not regenerate quickly enough it could be a reason to delay a future chemo treatment. Obviously we don't want her to fall behind on any therapy so this injection is of great benefit.

After the second course of chemo (Sept 9th) we were at home and we were unable to reach any local nursing friends to give her the shot on a Saturday afternoon. Oddly enough Robin suggested I might give her the injection. I hesitated, but then figured everyone who has ever given an injection had to start with their first one, so I agreed and started by reading the documentation that came with the packaging. I followed the instructions and pinched a bunch of the skin on her thigh then let that needle fly. Boom - it didn't seem to go through her skin so I pulled back on the needle. That's when I found it had gone in a little because I could feel the resistance as I yanked it back out!

Now I'm starting to sweat! If you mess up the shot (for instance, if you accidentally hit a blood vessel when you put it in the skin) then the instructions advise that you throw away the entire needle (I don't think so!). So here we go again. Boom - I hit her thigh but it still feels like it has barely penetrated so I apply a little pressure and voila - I can feel it slide through the outer layer and under her skin. I hope Robin is having as much fun as I am!

We finish up and I withdraw the needle. Gee - that really didn't hurt me a bit. Robin claims she never felt a thing - either with the first stick or the second! Looks like tonight I get to give her the next injection, but now it will be easy since I'm a veteran at giving shots! ;)

Hair compare!

On September 2nd we shaved our heads when Robin's hair started falling out. Since then I've trimmed mine a couple of times to keep it short. Robin hasn't cut her hair since September 2nd and she is still having trouble keeping up! Her hair has thinned appreciably but it just recently showed signs of a growth spurt. She might eventually catch up to me after all!

Here's Robin with our friend Mike who showed his support on Sept 12th by taking the plunge!

Typical Radiation Therapy experience

We asked the RT folks to describe the experience of a typical patient who receives seven weeks (35 treatments) of radiation. Most of the side effects occur because the radiation is damaging healthy tissue on its way to the tumor (see previous post for a description). Although this impact is minimized it is not unusual for an RT patient to experience the following:

Week 1 - secretions in mouth thicken
Week 2 - throat discomfort begins, increasingly dry mouth
Week 3 - patient starts feeling tired during the day
Week 4 - increasing fatigue, increasing throat pain
Week 5 - increasing fatigue, increasing throat pain
Week 6 - pain and fatigue finally plateau and don't get any worse
Week 7 - it's bad, but not getting any worse (there's a bright side!)
-Treatment ends-
Week 8 and 9 - pain and fatigue continues for two to four weeks afterwards

The daily pain typically becomes so intense that the patient can no longer swallow (that's the primary reason Robin has a PEG feeding tube - to get liquid lunches!). Pain management is essential. After just a few weeks the pain level is so high that it is often managed by the patient wearing a long acting Duragesic patch (think "nicotine patch" but this patch contains morphine based drugs), and by the patient taking liquid Hydrocodone (liquid drops since the patient may no longer be able to swallow pills).

After all that explanation the clinician noted that receiving chemotherapy simultaneously can worsen the effects. Presently we are still looking at the bright side of things! Robin already has seen a decrease in symptoms in the last few days - less gagging and less getting sick. So we're looking forward to a few easier days (or maybe a week) before the radiation symptoms become a drag. She's comparing it to a long bike ride - for example riding 100 miles in one day. There are going to be some easy spots and some tough spots along the road, but you keep your self going by focusing on the end goal! In a really tough spot (like a very steep hill) you sometimes focus on just getting through the next few yards and forget about everything else for the moment - the bicyclist's version of taking it "one day at a time".

Robin waffling

Monday morning (before chemo started) Robin went for Radiation Therapy (RT) and the technician mounted the mask over her face. Robin noticed it didn't feel right (it was pinching her cheek and forehead) - the technician quickly realized the mistake and fixed the position. We need Robin's head to be in the exact same position each day because the precision of the radiation beams is greater than a tenth of an inch. The highest radiation dose is intended to hit the tumor with lesser doses passing through healthy tissue. It's analogous to pointing six flashlights from different directions onto one spot in the bottom of a swimming pool. Imagine being able to see each of the six different beams passing through the water, and where the beams meet on the bottom there would be one very brightly lit spot. In the same way, Robin's tumor is the focal point for the radiation but much of her head and neck get some lesser amount of exposure (in this example, one sixth of the level which hits the tumor). Essentially it is just more "friendly fire" misery, just like the in the world of chemo drugs.

Even with the mask properly positioned it fits tightly which you can see from the waffle pattern on her forehead (and the tip of her nose) seen just after emerging from RT:

Robin - chemo veteran

Robin was stressed Sunday night and had a difficult time sleeping. She felt like she has just been starting to feel better and now the chemo could make her sick again. She did experience a little nausea Monday afternoon and evening, but each time she has gotten over it by eating a little food, or by immediately requesting additional anti-nausea drugs. She's much more aggressive now in trying to prevent herself from feeling ill during the chemo treatment.

Weekend improvement

Robin has improved over the weekend. We think the tumor seems a little smaller and she hasn't had nausea or gagging the last two days. She's only taking Tylenol right now and she is eating regular food (she has an OK appetite). Monday morning she receives radiation early (8am) and then she will be admitted for an overnight hospital stay during which she’ll receive chemotherapy (Cisplatin). Tuesday she'll be discharged and then continue with radiation for the rest of the week (Tuesday thru Friday). Of course the fancy name for all this is "chemoradiotherapy". The Cisplatin is described as a "radiosensitizer" and it will make the radiation treatments even more effective, as well as shrinking the tumor directly.

A good day!

Robin had some more energy today! We walked for 45 minutes to an hour and we frequented the subway system. We still make some navigation errors now and then but we seem to recover pretty quickly.

She actually had some noodles for lunch and she's been drinking more fluids. The nausea and dry heaves seem to have mostly cleared up! We'll be home for the weekend so she can spend some time in the garden!

Wednesday/Thursday update

Wednesday morning started with a bit of dry heaving while sitting in the Radiation Therapy waiting room. (Robin carries around a "Glad" gallon size bag partly filled with kitty litter for these special occasions. Typically only a small amount comes out of her mouth even though her whole chest seems to heave.) The good news is that this activity instantly qualifies a patient to be whisked away to a private exam room until they stop! A holistic nurse (who is also an acupuncturist) met with Robin. The nurse rubbed Robin's wrists while having her close her eyes and picture her favorite place to relax (that's the backyard at home!). This procedure helped quite a bit!

Robin seemed to have a little more energy after the radiation was completed. They had strapped her onto the radiation table for about ten to fifteen minutes (hmmm...that's longer than we had expected!) while they applied the different radiation beams to the tumor. The mask which holds her face has a waffle pattern and she emerged from the treatment room the waffle pattern briefly imprinted on her nose and right cheek! The tumor seems larger now than when they originally made the mask (actually, since they made the mask the tumor shrunk during the second course of chemo and has since re-grown). The good news was that later in the day she had enough energy to go for a thirty-five minute walk on the walking path down by the river (of course stopping every five minutes to use the glad bag)!

Thursday she has had nausea most of the day. It's sometimes difficult to tell what is causing the nausea, the pain meds or the tumor itself. Before she even started the cancer treatments in early August she had nausea and vomiting everyday just from the tumor. The doctors here are great (Having a problem? Come right in!) and they are helping her try different pain meds and anti-nausea medications to find out which ones work best for her!

The ongoing treatments should now help shrink the tumor for good. We're looking forward to next Monday's chemo because we're figuring that we will never have to see it grow this big again! Hopefully by the end of next week the tumor will have shrunk and she'll be getting over the chemo side effects so she will be able to have a few days (or weeks!) of being energetic again. We do expect that she may eventually fatigue from the radiation treatments, but we're hoping those effects will be several weeks away!

The top 10 reasons why it's good to be bald

10. No need to shampoo!
9. Rains feels really neat on your scalp!
8. You don't get "hat head"!
7. No drying your hair after showering!
6. People rub your head for no reason at all!
5. No more "bed head"!
4. No need to own a comb!
3. You always know exactly from which direction the a/c blowing
2. No gray hairs!
1. After just a little growth, your head substitutes as a lint brush!

Doc says Robin is hot!

The other day we asked for an explanation of some text from Robin's PET-CT scan which was performed in August. The PET scan tests to see where cancer is in your body by detecting areas which metabolize sugars rapidly. Robin's results had stated that "no metastases had been detected" meaning that the tumor hadn't spread to other areas - that had been welcome news!

The results also stated that several areas had stood out on the scan, including "symmetric foci" in the area of her neck which were deemed to be "brown fatty deposits". We asked the Nurse Practitioner what were these "brown fatty deposits"? She did not know so she picked up the phone and called one of the senior Radiation Oncologists at the medical center. We could only hear half the conversation but as it progressed we could hear her say to the physician: "so you typically find this type of fat in animals such as bears", "it's a type of fat which has a high metabolic rate and so has a higher temperature", "so you want me to tell Robin she is 'hot'? - I'm sure she'll be glad to hear that!"

Sense of humor continues…

1) Yesterday we met someone who had just found out about Robin's illness. He said "I was so surprised to find out you had cancer". Without skipping a beat Robin replied "I was surprised too!".

2) Today as we waited in an exam room for her nose to stop bleeding she found her hand getting tired from pinching her nose - this was taking a long time! Eventually she asked if I would pinch her nose for her, so of course I sat down next to her on the doctor's swivel chair and obliged. I had picked up a bicycling magazine from the lobby to read while we were waiting and eventually I asked her to take her nose back long enough for me to pick up the magazine and find a section suitable for reading out loud. I positioned the magazine in my left hand and then resumed pinching her nose with my right hand and read her an article. I can't imagine what people were thinking as they walked by the open door!

3) Last week she started a new symptom of occasionally drooling profusely (probably from pressure on the Parotid salivary gland in her cheek). This whole ordeal really tires her out, so one we evening we lay in bed, in the dark, with her bald head resting on top of mine. In the silent darkness I suddenly felt a warm, wet flood of drool slither onto my head. I quietly reached up and wiped it away. Robin started, raised her head and then asked "did I just drool on you?", I said "yes" to which we both just broke out in laughter.

No "walk in the park”

Well, we thought Robin would be fairly mobile this week and able to go for walks. Instead, she has been feeling a little sicker each day. She seemed fine as today began, but then had a gagging episode that lasted several minutes, and that triggered a nose bleed which would not stop!

We were headed to the outpatient clinic anyway, we just didn't expect her to be pinching her nose shut with a kleenex for the entire taxi ride. After an hour in the doctor's office (still pinching her nose - don't they have some kind of clamp for this?) and some Afrin nasal spray, it seemed to be holding well enough to complete our two appointments. Her nose still bleeds a little now and then but at least there is no flooding! All this work tired her out so by 5pm she was in bed trying to relax and take a nap (lately she seems a bit jittery too - apparently another effect of the tumor).

The visit to the radiation folks wasn't very reassuring. Now that we're meeting with the folks who actually administer the treatments they are more specific about what to expect. There's the usual claim about how some patients have gone through this with little impact, but then they noted that getting chemo and radiation at the same time ("chemoradiotherapy") usually magnifies side effects. A "typical" patient ends up with a throat so sore that not only can they not swallow any food (they get all their nutrition through the feeding tube), but they typically end up using fentanyl patches (80 times stronger than morphine) to control the pain. They also suggested we plan to stay in New York for a few days after radiation ends - some patients go home immediately then they end up in the hospital at home with fatigue and dehydration!

Antway - we're excited that radiation is beginning because it should start to slowly decrease the tumor size, then next Monday's chemo should again help knock it down significantly. Today's size should be the largest the tumor ever gets again - from now on it's only going to get smaller!

Fast weekend

What a fast weekend - Dad headed home Sunday morning!

By Sunday night Robin's lips were pretty well healed. The tumor is getting bigger again so she occasionally has the dry heaves. It happens most often if she lays flat on her back. She continues to take medications to reduce these effects.

We have been feeling more tension lately. Robin admitted that the idea of receiving radiation does not bother her as much as the idea of having to lay flat on her back for a few minutes with her head held in place by the mask! At home She can lay down on the couch and can literally be gagging within seconds, so I can see why she would be nervous about being clamped to the Radiation table!

We're headed back to the city tonight. Robin has appointments on Tuesday for the final radiation check and then she will be treated with radiation on Wednesday, Thursday and Friday. Next week will begin a weekly routine of going down on Sunday night and coming home on Friday afternoons since she will receive treatments Monday-Friday through the beginning of November - eek!

We're looking forward to this week because she is getting her energy back. We don't anticipate any immediate reactions to radiation so she'll probably be ready to go on short walks and maybe see some sights (maybe a museum or the botanical garden). We need to have a little fun while she feels good since next week begins chemo treatment #3. The chemo will be easier next week since she will only be an inpatient overnight while she receives Cisplatin. No more 5FU so she won't have to be in bed five days in a row!

Friday - Radiation Therapy (RT) planning

Today, Robin also had the second meeting with the Radiation Therapy (RT) staff. At the first meeting the RT folks had taken images to create a three dimensional representation of Robin's head in a computer. A Dosimetrist and a Physicist then planned how to position the radiation beams to deliver the prescribed dose of radiation to the tumor, while limiting the amount of radiation which would pass through sensitive organs (eyes, larynx, throat, brain, etc.). They can specify the beam placement within millimeters!



The photo shows Robin standing in front of the Radiation simulation machine (identical to the treatment machine but without the radiation generator). The beams are so small and so precise that they will need to ensure Robin's head is held in the same position each day. In the center of the photo mounted to the table is the white mesh mask which was shaped to Robin's face and which will ensure that she can't move at all when the radiation is applied. The mask is made of plastic so the beams can pass through it, but it's perforated so it's not claustrophobic.

The term "radiation" often makes people think of radioactivity, the process by which an atom splits and spontaneously releases particles. These machines don't use that process - so there is no chance that Robin will become "radioactive"! This machine is much more like a super strong x-ray machine. If it delivers too much energy to a patient it could burn or scar the patient's body. That's why the RT team is so careful in planning the beam trajectory and positioning the patient on the table!

Friday - Oncology checkup

Things went well in New York today! Robin had her CBC (Complete Blood Count) checked and her white blood cell count has rebounded since chemo ended last Friday!

When she was asked "On a scale of one to ten how much did her mouth hurt this week?" she said it was a ten! Ouch! It’s now easy to see the blisters on her lips and tongue - but they should be healed in just a few more days. The oncologist said these blisters are caused by the 5FU she received last week, and she won't be getting 5FU anymore. (yea!) He did note that Radiation Therapy may also produce mouth sores, and if so they will take longer to heal.

Beam me up!

Robin woke up in slightly better spirits this morning! As the morning proceeds she'll get an idea what side effects will be like today. The tumor reached its smallest size around Monday of this week and it's growing again. As it grows bigger it seems to increase her level of nausea and dry heaves. The last few days her mouth has been extremely sore, but it feels a little bit better today. For pain she now takes liquid Tylenol through the feeding tube.

We're in the city this morning for two appointments. The first will be a blood test - her Complete Blood Count (CBC) which will report her white blood cell count. The lower it is, the more susceptible she is to infection. If she picked up the flu or a cold it would be hard for her to fight it off and it could delay treatment. She did receive an injection of Neulasta last Saturday which should have boosted the production of these cells.

The second appointment is the Radiation Therapy (RT) Beam Check. Since we last saw the RT folks they have been planning how best to apply radiation, for example how many different beams, from which angles, at what intensity. Today they'll put Robin on the simulation machine again just to verify that the plan they have developed looks like the most efficient way to deliver a high dose of radiation to the tumor, while minimizing the radiation which goes through her healthy tissue (in particular the areas in her throat and around her brain).

We expect to be done here by noon and home by 5:00pm. We'll be returning next week - the first radiation treatment is planned for next Wednesday. We're really anxious to finally see the tumor stop getting bigger.

Footprints in the sand

Robin was feeling down this morning as she considered how much treatment there is left to accomplish. I reminded her that this is one of the times when she can count on us to carry her, a reference to the "footprints in the sand":



One night a man had a dream. He dreamed
he was walking along the beach with the LORD.

Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.

He noticed that many times along the path of
his life there was only one set of footprints.

He also noticed that it happened at the very
lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most you would leave me."

The LORD replied:

"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

Anonymous

Ouch!

Robin hasn't been talking too much the past couple days. Sometimes she'll write on a piece of paper, or sometimes we play charades (now I wish I had practiced that game more!). Sometimes she'll try to speak, but with her teeth clenched together. Mainly her mouth, tongue and lips have been very sore. Today we're going to the store to get some baby food and liquid Tylenol!

Our cup runneth over

Well, Robin is still getting back up to speed since chemo last week - today she walked two blocks down the street and back! I'm not recovering from chemo so I don't have the same excuse for being tired out, but I had told a friend that "I felt like I was getting tired at the 12-mile mark of a 26-mile marathon".

It seems like every time I start dragging though, someone else helps pick me up. The weekend before chemo the pick-me-up came from our friends Joe and Julie. My spirits had been down the days before and I'd complained to Joe about something. The next thing I know they've helped with the one complaint and then they started working on another issue (i.e. how to find parking in New York City - another problem they have now helped solve!).

This week the support is coming from every direction!

-Dad is here all week!
-Our friend Mike showed up for lunch - with a shaved head!
-Our friend Connie came to visit and restock our fridge!
-Our friend Deirdre (a massage therapist) who spent time with both Robin and I. Talking with her made me laugh and cry and finally relax a little bit! (hey we really are going to get through this OK!)
-We receive more e-mails each day offering support and encouragement!

To top it all off, Lisa from my workplace stopped by with an outstanding gift basket from my co-workers to Robin which contained many, many items including - gluten free snacks, cards, candles, a hello kitty blanket, pink socks, plus it was all topped off by a "Life is Good" t-shirt signed by my office mates with all kinds of words of encouragement! Opening the gift basket made Robin "verklempt" (otherwise known as "choked-up") and it gave her the biggest smile she has had in weeks!

One of the quotes from the gift t-shirt is that "strength comes from within. Be strong and you'll be fine". Even though I agree that strength comes from within it's wonderful to know so many generous, giving folks are cheering us along! By this evening I'm feeling like I could run a 26-mile marathon and then just keep going! Thank you!

BTW - smirkishness

BTW - as morose as it sounds for her to be feeling sick, she still manages to get right back to having a smile or at least a weak smirk on her face as soon as the feeling passes!

Time warped

These days I spend a lot of time rubbing her head, her feet or her back. My perception of time has changed completely. It's kind of like when you were growing up and there was no schedule to your day. Days last forever and they meld one into the other. Time focuses on the present, often because it's too overwhelming to think too far into the future. I know we're moving to the city next Monday but it seems so far away and too complicated to consider when Robin's looking so weak today. Normally by now I'd have a checklist of things to do and stuff to bring with us but it doesn't seem important enough to merit attention yet. There are also too many other things to get done. Having Dad around allows me to get some work done, make some calls and send some e-mails. How a couple could do this alone doesn't seem fathomable and it seems incomprehensible that some people out there must go through this experience all on their own.

Well, she went to bed 30 minutes ago, but now she's out of bed and having some dry heaves, so got to go…

The Robin Roadshow Schedule

Fri 9/15 - overnight trip to the city for a Friday appointment

Mon 9/18 - travel to the city to start Radiation Therapy (RT). She'll have a standing appointment Monday thru Friday to receive a daily RT treatment for 6 to 7 weeks. If she is up to traveling then we may be able to drive home for the weekends otherwise we'll be living in the city fulltime (it's about a 3 hour drive home if there is no traffic).

Things are better, I guess

Today things got better, I guess. Robin has experienced less gagging than yesterday! Today her throat started feeling sore as if she had a really bad cold, plus the sides of her tongue hurt. It makes eating a bit more of a challenge so she's only eating soft foods. She also has the cancer patient's "magic mouthwash" which contains Lidocaine. You gargle and swish it around your mouth and everything starts to go numb. Kind of like when the dentist gives you Novicaine, except it’s the whole inside of your mouth that's affected. Apparently it's not quite strong enough so she's going to start taking Tylenol more regularly.

She walked down the street past six houses and back! She's still pretty low on energy but getting back a little more each day. She needs to get as much strength as possible before next Wednesday when Radiation Therapy starts.

Her hair is a growing in a bit spotty, and not as fast as mine - we might have to shave her head again… As you can see Dad's hair is growing just fine - looks like he needs a head shaving if you ask me!

Every day things will get better

Well, we did eventually get out of the house to go for a walk on Sunday. Robin and I went down the street past four houses and then turned around and came home. Even though she felt sick throughout the day she kept saying that every day things will get better.

Nearly slept

Well, at 11:00am Robin tried going back to bed, then she took a shower, and then a bath. After all that she was still having dry heaves and decided maybe a little food would help. A little cinnamon toast seems to have decreased the gagging - Yea!

By noon she was on the couch again and I rubbed her feet until she fell asleep. After twenty minutes I tried to extricate myself but only succeeded in waking her up again. She did say she felt a little more comfortable! Maybe we'll have to wait until tonight for her to really fall asleep.

Dad will arrive today from Florida today and will stay until next Sunday. Last week our high temperatures were around 80 which I'm sure he would have enjoyed, but now the weather has changed to high 60's for the days and mid-40's for the nights. Even if he brought his Florida "winter coat" it won't be heavy enough to fight off the morning temperatures! :)

Restless Robin

Yesterday Robin was unable to sit still. She doesn't have all lot of energy to begin with and she hasn't been sleeping well, but her body feels very unsettled so all day long she shuffled from one room to another in slow motion, cleaning up small items, making the bed in the morning. (She looks like a Buddhist monk shuffling through the house in slow motion and sporting a shaved head.)

This morning I found her on the couch in the living room still trying to sleep with a "hello kitty" blanket pulled right up to her chin. She would say something to me and then her eyes would begin to close and her jaw would begin to relax. Then a new thought would come to her, and her eyes would slowly start to open, she'd lick her lips and she would say something more. It was like watching a toy doll whose batteries had run too low. After a couple of minutes she was struck with another round of dry heaves. Usually she gets three to five heaves in a row then settles down. This time she had about a dozen. On the last one it sounded like she was just about to start crying - as if one more dry heave would break her spirit. She took her anti-nausea meds just two hours ago so there is no more medication to help her this morning. We put her to bed upstairs and I hope she can eventually sleep today.

This past week she had asked the oncologist if the future chemo would be easier. She will still receive chemo every 21 days, but in the future she will only get a three hour drip of Cisplatin and not the 96 hours of 5FU. He noted that the Cisplatin generally creates the worst side effects, but she is getting heavy doses of each chemical so next time *it has to be easier*.

Well, it seems this weekend she will not complete a walk around the block. I guess we'll just focus on getting her to walk part way down the street as soon as we can.

Finished chemo #2

Here is Robin getting chemo this morning. She had a very sleepy week. Being with her Tuesday was like spending the day with someone who had a hangover - she wanted the lights outs and the room quiet. By Thursday night she had improved and was even able to eat some of the hospital food (overcooked chicken breast - ick), plus she was able to walk about fifty yards!

We finally started getting on each others nerves on the way home - but we were able to joke about it. Halfway home we took a break from driving and shared a large order of French fries. The break seemed to help and Robin finally fell asleep for the rest of the trip (no wonder we got along so well on the second half of the drive!). ;)

The tumor still bleeds in her sinus so she coughs up blood every hour or two (unfortunately it usually makes her gag when it happens) but the tumor has shrunk so it is not currently causing her facial pain. We're hoping that by Sunday she will have enough energy to walk around the block! The chemo effects will probably bother her through mid-week, and her white blood cell count will bottom out around Thursday. She should have much of her energy back by the time Radiation Therapy starts on September 20th…

For now, the good news is that we get to sleep at home tonight!

Robin's been feeling OK

On Wednesday Robin slept most of the day. Today she has been awake most of the day. During this round of chemo she has had a few periods of nausea, but the medications are controlling it pretty well. She receives four IV bags of chemo drugs over four days. She's started her last bag today and it will be finished around noon on Friday.

Her short hair seems to be growing back, but it also continues to fall out. Now we find tiny little hairs on her shirt and pillow all the time.

She's got a little bit of appetite and is eating regular food today!

When I die and when I'm gone

"When I die and when I'm gone, there will be one child born to carry on". Well, statistically the population is growing so maybe "1.01 children will be born".

Anyway, lest the last entry leave you with the impression that the hospital is a dreary place let me tell you about the elevator babies. We're on a floor that handles oncology, hematology and cardiac care, so adults of all ages are here, some looking ill, some looking refreshed (the refreshed ones must be the new inductees). But on the floors below are where the babies arrive.

On our first visit here I had an elevator ride in which we stopped on a lower floor and a nurse pulled a basinet onto the elevator. In the center of the little white mattress was a tiny little lump of rolled blanket with a baby's stocking covered head sticking out of one end. Next to the baby was a small pile of papers, the top sheet an official looking piece of paper with little baby footprints on it - kind of like a convict's booking sheet ;) I asked the nurse when the baby was born and she said nonchalantly "just now". Well, I've never heard that before - happy birthday - you're 5 minutes old!

Now I notice that there are in inordinate number of pregnant women entering the building each day. Yesterday a woman who was petit everywhere except around her distended midsection stepped out of a limo and stretched her back - thrusting out her abdomen. As I walked in the entrance I passed a couple security folks (a man and a woman) who were smiling and joking - obviously amused by the ability of this woman's small body to stretch to such unusual proportions.

Now I see the babies every couple of days. They are infrequent enough elevator travelers that it is a surprise to see one rolled in. I don't have to ask about their age anymore since they all carry their little baby rap sheets onboard - obviously new arrivals. On the elevator where so many people ignore one another and adopt blank stares, no one looks away from the new arrivals and everyone smiles.

Easy come, easy go

This morning I was looking out Robin's door and down the hall where I could see a group of about eight folks (mostly in white coats) standing outside one of the rooms. I asked Robin if they ever had rounds here where a bunch of residents come into the room. She said "no" and I said either they're doing it today, or someone was in big trouble.

I left a minute later to get coffee and as I walked down the hall I noticed that not everyone was in white coats. There were a couple folks in scrubs and a maintenance guy in the group, and everyone had on gloves. Several folks leaned against the wall, waiting with what look like feigned disinterest and just the slightest sign of stress on their faces. A few of the younger looking folks in white coats stood by the door and peered into the room. It turns out it was the code team in the room and as I walked by I could see them doing vigorous CPR on a naked body which was bouncing up and down like a rag doll. Robin always told me that real CPR didn’t look like the TV version! At least I could only see the patient from the waist down. I just kept walking, but at the elevator I turned around and I could read the name tag on the room. I just acted like everyone in the silent hallway did, like nothing much was happening.

I started to get teary eyed as I crossed the street outside and I finally started to think about the scene upstairs. I wondered if the guy knew it was coming, or was it a complete surprise? Was he being treated for something and expecting to go home, or had he been deteriorating over the last few days? Did his family know what was happening in the room at this very minute? Had they left him last night saying they'll be back tonight for another visit?

On the way back to Robin's room I get off the elevator and think about going the long way around but I figure I'll face up to it and walk by the room again. Hmmm....no more name tag on the door just a blank spot where the name had been - that's not a good sign good. The hallway is empty now except for a few workers from the floor scurrying in and out of the room, moving equipment out to the hallway. As I pass by I look in - oops, the bed is still there, the bottom half of the patient still visible protruding from behind the curtain, but now the legs are covered by a blanket. The blanket covered legs looking strangely relaxed compared to earlier.

I wonder if it's easier to know that you're going to go soon, or easier just to be gone one day unexpectedly?

Puky Tuesday

Robin has been pretty nauseous this morning (8 on a scale of 10). We're getting her some extra anti-nausea medication to get her over it.

This week she chose to bring her own "lounging around" clothes instead of wearing the hospital gowns. Today she's wearing sweats and a soft Mickey Mouse sweatshirt. She may be feeling icky - but she's doing it in style!

Monday Night

Robin's been doing well today. After the nurse gave her meds this morning Robin took a long nap. She completed the 3 hours of Cisplatin and then started the 5FU in the evening. She's got some energy back and is joking around again. :)

The chemo meds for this week will be the same as last time. If they decide to make any changes it will be to the next round.

I had no shoes…

"I complained I had no shoes until I saw a man with no feet."

The last time we were in the Oncologist's office (last Monday) Robin had her blood drawn. There's a special room with several chairs and Robin was sitting in the small room next to an older, frail looking man who appeared to be in early seventies. They were each being attended to by a nurse who was tying off their arms and sticking them with needles to take a vial or two of blood.

I waited in the hall outside and was standing by a fairly spry but tired looking woman who appeared to be in her early 60's. We were both holding coats, bags and possessions belonging to our patients. In this sphere of families impacted by cancer when you see a couple it is not impolite to inquire who is the patient, what is their disease and where are they in the treatment process. The cancer is the common thread that brings us together in the doctor's office, in the hospital, in the housing for out-of-towners.

I asked quietly if the man in the room was her husband and she replied "yes". I inquired if he's just starting treatment, or if he's almost complete. (you never ask if someone is "near the end"!) She said that they were lucky because he was just completing his treatments. Then she added that they had a bit of bad luck. The prior week she had been diagnosed with cancer and she was now preparing to start her treatment in the coming week. I fumbled for something to say about that being "too bad". By that time we both had tears welling up in our eyes that we were suppressing. She went on to say that she thought she was up to fighting it, but she wasn't sure if her husband had the energy to support her. We talked a little bit about the roles of patient vs. caregiver. Our chatting seemed to fade away, but I felt that she'd been able to get something off her chest and I'd been there to help listen. Soon our patients were ready to move on to their next stops and we parted ways.

New record!

Robin set a new record by throwing up *before* they started chemo!

In early August she started getting sick each morning and then recovering in the afternoon. She thought it might have been because of the daily bloody nose. Apparently the size of the tumor or the bloody discharge makes her nauseous.

After the first round she was all better, but the last 10 days the bloody nose came back, and now the nausea hit her this morning - poor girl! The nurse went to get some anti-nausea meds stating "I'll be right back" to which Robin laughed and said "OK, I won't be going anywhere" :)

Stop playing with your tumor

We checked into the hospital this morning. We showed the doctor the photos of Robin's progress. The pictures show: the day before the first chemo, the week after the first chemo (smallest tumor size), and what she looks like now.

The doctor said we don't want to be "playing accordian" with the tumor making it smaller and then having it rebound to such a large size. He explained that in typical tumors only a few of the cells are replicating at any one time, but it SNUC *all* of the cells can be replicating *all* of the time. Chemo should be knocking down the size significantly and radiation should be keeping it small.

He said they will take a look at making changes to the future chemo and/or radiation therapy schedule because the tumor is growing so fast.

Girls day out

Last Saturday (when Robin still had hair) she spent the morning playing with the girls! After running rampant in the playroom everyone went shopping at the Mall where I taught the girls how to try on clothes and test the perfume at the cosmetic counter. Julie wrote later and said thanks for the wonderful smells - she enjoyed them on the stinky drive home!

(BTW - Julie makes *Excellent* Chicken Salad! She made some for our Sunday drive to the city.)

Bald is Beautiful!

Feel free to join us! :)

"Look at this!" - hair

(This hat is courtesy of Susan at work. Susan says to tell her what color Robin would like the next hat to be!)

This morning Robin came up to me like an inquisitive kid with her fist clenched saying "look at this" - she was holding about 15 hairs in the palm of her hand. Over the course of the week she has noticed an increasing rate of hair loss. This evening she stood over the bathroom sink running her hands through her hair and in about a minute she had over one hundred hairs in the sink.

I feel a little let down. If her hair was going to fall out I expected it to be in great big clumps. There would be *no question* that it was time to shave her head. Instead of a sense that a significant event has occurred, I feel like it's no big deal - just a few more hairs appearing each day.

In a way it's like the cancer itself. It first gave a clue of its existence in mid-June as a slight bloody nose. For three days in a row Robin experienced just a brief nosebleed. By the third day I expect she was beginning to adjust to the idea of having daily nosebleeds, but that evening a headache began which grew and grew until it was the most severe pain she had ever experienced. I was out of town at the time. She called the next morning at 8:00am to tell me the pain had been so bad that she had taken seven Advils in ninety minutes and that it had minimal impact on her level of pain.

I was already due to fly home at 1:30pm that day, after a moment of reflection on priorities I called the travel agent and changed to 10:30am. I then tried to tell my boss that I had rebooked and was leaving, but I was already so upset he thought I was simply trying to ask his advice about whether or not to leave early. It's funny to think back now and wonder why I had been so upset when we did not even know what was going on yet. By 2:00pm we were in the office of Robin's primary care doctor, starting this process.

Our alarm thresholds are much higher these days. For instance Robin's right cheek continues to grow in size since the chemo. In addition, her nose has begun bleeding daily again. We have been keeping the doctors informed, but we have seen the tumor grow so rapidly before that it doesn't seem to warrant alarm. The oncologist said that it's of concern only if it gets to be as large as it was before the last round of chemo.

Well, it's going to be close. It's obvious now that chemo alone can only slow this tumor but cannot keep it contained. I'm starting to feel like this coming week we're going for a "band-aid" chemo treatment. What other damage is the tumor doing? Where else is it spreading while we buy a few more weeks? Initially we couldn't wait to see Robin start chemo. Now we can't wait to see her start radiation therapy! The doctors say the combination will possibly expel all signs of the tumor - so the surgery can focus simply on reconstruction!

Biker chick!

On Monday the oncologist said Robin could exercise within her comfort level, just no abdominal exercises due to the feeding tube. Well he unleashed a monster! Thursday she biked 10 miles. It took an hour, but she got it done :)

"Uncle Sam wants tumor gone"

Connie came with us on the very first trip to New York City. Since that trip her son Christopher drew the following picture for Robin: