Beating cancer no matter what

It's hard to believe that the most challenging part of the journey started only four weeks ago when surgery was cancelled. Even harder for me was the following day when Robin decided to close her massage practice. In the ensuing ten days I lost ten pounds and I was slowly losing my ability to get things accomplished. The evening my Dad first arrived we ordered pizza for dinner and my appetite returned! That same week I started to meet with a counselor (Alex) who gave me (and Robin when she's had the energy) an outlet to start talking about what we have been going through and where we are going.

Over the years Robin and I have learned how to communicate as a couple and I expect we have enough skills that we could have learned how to talk about the cancer and talk about death - but we no longer know how much time we have to gain these skills. Having Alex guide us is like hiring a skilled outdoorsmen to teach you about backpacking - sure you could learn everything on your own, but hiring a specialist accelerates your learning and helps you avoid wasted time.

Robin seemed to be holding up better than me until just before Christmas. Her stress began to come out at the end of each day when she would start crying after getting into bed. Several nights we just held each other in the dark, oftentimes I massaged her face and arms until she fell asleep. She remained sullen through the first two weeks of December. Fortunately she got her positive energy back halfway through the month, and her positive spirit is once again visible each day in her smile and laughter! We seem to have concluded that no matter how much time we have left together there is no reason it still can't be positive! It seems like this attitude is how people beat cancer no matter what the outcome…

Super Dad!

My Dad traveled back home on Thursday. It was a godsend to have him arrive three weeks ago when our spirits had bottomed out! I felt like our ship was taking on water and listing (tilting to one side)! With his assistance we straightened things out, got our bearings and renewed our spirits!

Thanks Dad - for coming out on such short notice, for providing love and emotional support, for sharing your time with us, for all the wonderful cooking - and for helping us pull through the month of December!

:)

Planned vs. Actual

Well, I guess we can't say we really had a plan for how the three week chemo cycle would go. Based on past experience with other chemo drugs we were thinking maybe: first week - feeling sick and dopey; second week - feeling tired but thinking more clearly; and the third week getting up off the couch and puttering around the house.

The actual experience so far hasn't quite lived up to expectations. The first week went as expected with nausea and the daily dry heaves. The second week started with her getting her wits back (she started to seem like her old self) but her pain level also started to increase. Early in the second week the pain became constant so she increased to wearing two "pain med" patches at a time (a total of 50mcg/hr - which the doctor says is still not a high dose). Then the last few days she occasionally feels pain during the day, enough so that at bedtime she's taking extra pain meds orally. The clinical folks would describe her current experience as "break through" pain, meaning that the two patches are controlling her pain most of the day, but occasionally the pain "breaks through" and is no longer controlled. If the pain becomes persistent then soon she'll be wearing three patches.

Besides the pain, her nausea level had decreased at the beginning of the second week, but it's now increasing again. After many good days she got the dry heaves again Thursday, and then twice today (Friday). She still manages to smile each time after she recovers!

We had hoped she would have her energy back for New Year's which also happens to be our fifteen wedding anniversary. As usual, we'll just keep taking things day-by-day and we’ll see what the weekend brings us.

Health Care Proxy

On Friday we'll be meeting with a lawyer to finalize some documents including wills and healthcare proxies. I guess the way our lives had been going we would have gotten around to writing wills by the time we were fifty or sixty years old - you know, when it might be important to start thinking about that type of document.

Anyway, probably the more significant document we'll be preparing is the "Health Care Proxy". In the past an individual could create a document called a "Living Will" which would detail the types of health care they would desire if they were unable to communicate. For instance, the Living Will might state that "if I am unconscious then I don't want to be kept alive by a mechanical respirator". This document can give you peace of mind knowing that you were able to document your wishes ahead of time but it can also lack flexibility. Say you were in a nasty car accident which rendered you unconscious. The treating doctor might feel that you could be saved and rehabilitated, but it would require putting you on a mechanical respirator for one week. It appears the doctor may not be permitted that option if your "Living Will" prohibits that type of care.

Well, along comes the "Health Care Proxy". At least within New York state you don't need a lawyer to fill it out, just a few witnesses (see "NY health care proxy" listed under "Links"). Essentially the proxy states that you authorize a specific person to be able to make your healthcare decisions for you, in the event that you are unable to communicate. You can give the "proxy person" full authority, or you can limit their authority to only certain types of decisions. The proxy concept relies on the idea that you have discussed all the possible issues of importance with your proxy person. The types of decisions they can then make (with your pre-approval) are: whether mechanical means can be used to sustain your life, whether food and water can be provided thru IVs or feeding tubes to sustain your life, whether CPR can be administered if your heart stops, etc.

The proxy concept differs from the living will in that the appointed proxy can adjust decisions based upon your unique circumstances. In the example of the car accident, the proxy person has the flexibility to consider something like "I understood the patient didn’t want to kept alive by a mechanical respirator for years and years, but I know he would have accepted being on a mechanical ventilator for one week if it meant a likely full recovery". Basically the proxy person has the opportunity and flexibility to think and make the decisions which they believe you would have desired.

On Wednesday night we discussed Robin's view of what treatments she would want, and which treatments she would not want, in preparation for me to become her healthcare proxy, and for my Dad to be an alternate proxy if I'm not available.

Social Security Disability

On Thursday Robin filed for Social Security disability benefits which would provide a small monthly check. The criteria for acceptance are that either: (1) your disability must last, or be expected to last for at least one year; or (2) your disability must be expected to result in your death. Based on what we have read online "metastatic cancer" pretty much automatically qualifies a person under category "(2)".

The SSA folks had offered us the option to drive to their office, or to do a phone interview. We chose the phone interview and spent about forty-five minutes answering a series of questions mostly about Robin's work background, and the dates and types of treatment she has received. The Social Security folks will now follow up with the doctors. Typically a case may take 3-4 months to complete, but they said they would expedite this case and that they may reach a resolution in about a month.

Where's the funeral home?

Monday we enjoyed a great Christmas Day with Joe and Julie's family at their home! It was Robin's second or third venture outside the house since chemo. She later noted that it felt as if she had slept on our host's couch for half the time we were there. Even so, it was great exercise for her to get out of the house, and it was another day for us to enjoy her renewed propensity for smiling and laughing! Plus there was more (imaginary) toenail painting by Jenna and Mei Lei!

For today's exercise we offered Robin the chance to either go for a walk down the street, or to go for a trip to the grocery store. Robin chose to walk all the way down our street and back which is roughly two hundred yards roundtrip. As we sauntered down the street an automobile pulled up alongside us. The couple in the car was lost and the driver asked for directions to a nearby funeral home. Robin pointed him in the right direction and described the home so that it would be easy to identify.

No sooner had the car pulled away than Robin smiled mischievously at Dad and I and said with an infectious laugh "What? Do I look like someone who should know where the funeral home is?"


She's just too funny sometimes and there's really no option but to laugh with her!

Robin gets her groove back...

Well, almost... The last several days her jaw has been sore so she switched to getting most of her nutrition thru her feeding tube. She was getting out of bed so late it was hard to get five to six "cans" down in a day. Saturday we started getting her out of bed at 9am so she'd have time to have a couple of cans at 9am, 3pm and 8pm. So her routine the last couple days has been "wake - eat - nap"!

Her right cheek began to swell again Friday, but it's mostly soft and squishy - not so much like the "hard to the touch" tumor material we've seen in the past. Robin thinks it's probably just accumulated debris in the area getting cleared out of her cheek.

Her spirit and energy level was markedly improved by Saturday evening (all the beautiful cards, good wishes and prayers must be paying off!). You could see she had her smile back and she was becoming prone to laughing once again! The last three weeks have been pretty stressful and took a lot of energy out of her (actually, out of both of us), but this weekend she's becoming more alert, sleeping less and has her sense of humor back! Tonight we made scallops for dinner and Robin had a couple!

It's great to see her spirits lifted up once again, and especially at such a hopeful time of the year! We're wishing that you are able to spend this Holiday with Family and Friends and we wish you good health and good fortune for the coming year! :)

Elevated LDH

Robin's been doing OK this week compared to previous chemo treatments. The side effects have been increasing in intensity the last few days but they have still been pretty well controlled. She is starting to get out of bed a little earlier now (noon today!) and she's been on the computer a little bit (hey - solitaire can be good for you!). She's had some nausea, but today her stomach also began to feel achy.

We had a follow-up visit with the doctor this afternoon. During the visit the doctor mentioned that Robin's blood work two weeks ago was a little "out-of-whack" so they'll be keeping an eye on it. She explained that the reason they offered chemo early without finishing all the planned tests (i.e. liver biopsy) was because the blood test had indicated abnormally high levels of LDH (Lactate dehydrogenase). LDH is an enzyme which is present throughout the cells in our bodies, and high levels can indicate that cells are turning over at a higher rate. Observing a high level doesn’t exactly tell you what's going on (e.g. it can indicate a recent heart attack or meningitis within the body), but when it comes to cancer it usually indicates a high rate of tumor growth. The idea is that chemo could help put that growth rate in check.

We're looking forward to Robin feeling better over the weekend and regaining her energy! The doctor did warn that her white blood cell count is low (a condition labeled "neutropenia") which is normal after a chemotherapy treatment. For the next week or so she just needs to stay clear of crowds and of anyone who is sick with a cold. Two weeks until the next chemo treatment!

Napping again...

Robin has one medication that's good for anti-nausea and to calm nerves. She took that and now she seems to be napping OK!

So much for quiet…

Yep, went upstairs right after the last post and found Robin getting sick. Put in a call to the folks at the doctor's office to see if we might make any changes to her medications which might help make her feel better. She says it’s a good day if she happens to get sick, but then can still smile afterwards!

Quiet Days

The first week after chemo is usually very quiet (actually you *hope* it's really quiet!)

Robin has been napping every day. She is typically in bed until about 3pm and then she'll come downstairs and lay on the couch to watch TV or some movies until bedtime. She occasionally has some small aches and pains (e.g. one medication gives her a headache) - but it's nothing like the leg pain she was experiencing just last week! Mainly she is wiped out of energy. Luckily she hasn't exhibited any strong side effects yet. She had one brief episode of dry heaves Sunday and then last night just before bed another episode which lasted a few minutes. She'll typically sit until the feeling passes - then I usually end up standing over her giving her a light hug while she leans her head against me. Today she'll be sure to start taking the anti-nausea medicine around the clock

It's usually quiet around the house in the post-chemo days. We usually turn the telephone ringer off and we don't make many phone calls (it's like maintaining radio silence). However, when folks do leave messages we always make sure they get to Robin. I'm hoping she will be getting some energy back by later in the week and then we might actually be able to go outside for a walk (or at least to the local mall for an indoor walk)!

How to handle chemo…

Have friends paint your toenails! :)

Yesterday we had some visitors including Connie, Sharon and Ed. Connie was on a mission to brighten up Robin's toes! Robin had some tea, relaxed and got to hear Connie tell some wild stories!

In a show of empathy, Dad signed right up for toenail painting! Which he said made him feel special! At least, he said, it's not beach weather right now in Florida so no one will know when he gets back home. We've been told that Robin will loose her hair again and Dad said he wanted to give a sign of his support - maybe he was hoping to get it in before it came to shaving his head?! :)

The visit (just over an hour) was quite a lot for Robin. She's resting so much right now that having visitors can really wipe her out. I'm hoping her energy level will start picking up soon. She hasn't experienced much in the way of side effects yet, but the clinical folks said the effects would peak after about seven days (this coming Thursday). Between the possible side effects and her weakened immune system, she won't have too many vistors this week.

Here are the painted toes - Dad in the foreground and Robin with the Hello Kiity PJs:

Hydration Day

On Friday Robin went back to the oncology office for a "hydration visit". They gave her a couple of medications to help inhibit nausea, plus a half liter of normal saline (salt water) to help keep her hydrated.

It sure is a lot easier being at home these days. In New York City it used to take a couple of hours to travel to the doctor's office, get treatments, and then return to the Miracle House apartments. Now the hospital is less than a five minute drive from the house - plus Robin says she loves to sleep in her own bed!

She has been pretty sleepy the last two days. Usually the first few days after chemo she feels best if she just rests and sleeps on-and-off during the day. If she is going to experience side effects they usually start after about three days and then peak after about seven days. She still drinks a few cans of the "ensure" type drink each day, but she's also eating foods like melon, pasta and steak.

Remarkably, she's been free of aches and pains in her legs since the chemo yesterday. She assumes it's the anti-inflammatory action of the steroids she received. We had discussed increasing her pain meds yesterday morning, but she literally walked out of the hospital yesterday without any pain in her legs!

Robin's strength

I know the latest news might seem like a downer. Rest assured Robin still goes through each day with a positive spirit, a sense of hope and a remarkable sense of Peace! I can only assume that all of your positive energy continues to shine through her each day!

It may seem like a scary period. It may seem like an awkward time. But, please don't let that dampen your enthusiasm, or your show of support! Your continued cards, e-mails and words of encouragement help give both of us tremendous strength!

Remember - a positive spirit doesn’t come from what the doctor says - it comes from the inside!

Robin gets more chemo (long)

Bear with me here for a moment. I've got this weak feeling in my knees. It was two weeks ago today they called to cancel Robin's surgery. I had the same weak-knee feeling that night, but it was even more intense. After Robin and I had a long talk on the couch about the surgery cancellation I had asked if she wanted to go outside for a walk. But then I tried to stand and my legs wouldn't lift my butt off of the couch. I physically could not stand. I told her, "I guess that a walk wasn't such a good idea at the moment."

Thoughts are swirling in my head about our first visits to New York City back in August. The doctor's office is right at Union Square Park on 14th street. I remember walking through the park with Robin at noontime to go see the doctors. I was protecting a large portfolio under my arm which contained her initial MRI, CT-scans, and PET scan. I started looking at all the people swirling around us - going to lunch, going to work, thinking about what they had to do in the next hour, the next day, what they would do for dinner that night. I remember thinking "Don't these people know that they could die at any time? This could be their last day and they don't even know it yet? How could their thoughts be focused on such mundane things?"

That night two weeks ago on the couch I said to Robin "I was worried she could die". Her matter-of-fact response was "We're all going to die, that's what the human lifecycle is about." Wow - stopped me in my tracks, how could I respond to that?

Anyway, enough beating around the bush. We saw the doctor today. She went over the results of both tests. She actually took a little extra time getting to us because she went to the radiology department to view the CT images with her own eye.

The MRI of Robin's spine and pelvis - well, it showed damage on the inside of her bones. The damage wasn't at several specific points, it was in lines, up and down the inside of the bone.

The CT scan of Robin's liver - well, it shows multiple nodules just the like the PET-CT scan from two weeks ago. Unfortunately the nodules have doubled in size in the past 14 days. Two weeks ago the largest one was one-half inch across - so now it's more than an inch in diameter. Anyway, they won't be needing a biopsy of the tissue from her liver, because nothing normal grows *that* fast.

The doctor said she would understand if Robin didn't want chemo. Robin chose to pursue the chemo which will be eight treatments over about a six month period (so she'll receive the drugs every 21 days).

I asked if there would then be a break before Robin could receive the treatment again. The doctor noted that one of the drugs is toxic to the heart muscle, so there is a "lifetime" limit which any one person could receive, therefore Robin could never receive that drug again.

Having said that, the doctor stated to Robin, my Dad and I - "I'll be the fourth happiest person in the room if Robin can make it that far". Essentially, the cancer is so aggressive, the doctor doesn’t expect Robin to even complete the eight treatments.

I asked. "Is there some path we could expect here? Will more metastases appear over time? Will the current metastases grow in size over time?". The doctor's reply was "You know there are only about thirty total journal articles about this disease. [since 1985] There's no way to know and nothing I can predict."

Well, so Robin got her chemo today and we'll go back tomorrow for her to get some IV fluids for hydration.

Then we'll see what happens next…

I don't know how we get through this. I don't know how anybody gets through this. As far as I can tell we just soldier on day-to-day.

Last week after the doctor's visit when we learned that metastases were "really bad news", I remember saying to Robin in the car afterwards "there's nothing more they can say that will scare us anymore".

As the fog clears from my brain I'm already thinking of things I need to get done today and tomorrow…. I wonder if Dad has got any ideas for dinner tonight?

(BTW - Robin still has her sense of humor, but more on that later...)

Mental Weeks

It seems like the last two weeks have been the most mentally and emotionally draining period of the journey so far.

Wednesday morning I called the oncologist's office and let them know about the swelling of Robin's right cheek. The nurse I spoke with noted that they already planned to have Robin sign "chemo" consent forms Friday so she could start next week. I asked why they weren't waiting for all the tests to be complete (the CAT scan isn't until tonight at 5pm) but the nurse didn't know. Then I asked if they could plan to start chemo Friday - not just get the forms signed. Turns out they could start chemo tomorrow (Thursday)!

I thought Robin would be excited to hear the news, but she asked me the same question, "why do we no longer need all the testing information?". Plus, we haven't yet talked to the doctor about side effects of the chemo and the pros-and-cons. The doctor had wanted all the tests done before we talked about these things. Robin settled on agreeing to meet the doctor Thursday to ask questions before she decides what to do next.

In the meantime, Robin's pain level varies. She usually feels stiff sitting down or standing up. We usually get her out of the house for a trip once a day - either for tests, or to the store.

Dad arrived Monday

My father was planning to arrive next week, but he and I spoke on Sunday night and he changed his plans and arrived this past Monday. What better support could you ask for!

Had a good cry!

Last weekend was the toughest one for me so far. Sharon and Ed were arriving to play cards in the afternoon on Saturday. I went upstairs to get changed right before they arrived. In the process of getting ready I just started crying and couldn't stop. I guess it was about twenty minutes before Robin came up to check on me. I eventually stopped crying, but chose to stay in bed for a couple hours while Robin played cards with our visitors. I made it downstairs and had a chance to chat for a little bit before they left. Guess the stress of things had just piled up for too long. We'd been so focused on our original plan from August. Since the plan was upset two weeks ago we've been in limbo waiting to work out the next steps.

MRI done, CAT scan to go

Yesterday Robin completed the MRI. It was focused on her Thoracic spine (mostly the vertebrae of the upper back which are connected to ribs) and lumbar spine (the vertebrae of the lower back which - as far as I can tell - are not connected to ribs). We don't expect to hear anything about the MRI results until Friday when we meet again with the doctor. It's important to know of there are metastases in the spine, because if a tumor were to grow here, it could impinge on the spinal cord.

Tomorrow (Wednesday) she has the CAT scan of her liver scheduled for 5:30pm.

Her right cheek has been swelling, it appears to be the primary tumor getting bigger all over again. :( Can't wait to start chemo!

Just Chillin'

Just chillin' this weekend. Robin's been sending out some cards and we've been watching some movies.

Robin's mobility is much better with the pain med patch. Not only had her bones been aching last week, but Friday the doctor gave her a shot to boost her red blood cell count - unfortunately the shot can also make your bones ache!

We've been enjoying each day and we're in pretty good moods. Robin's sister Sharon, and Ed came over to play cards a little bit Saturday. My Dad's coming to visit later this week and my brother Corry and sister-in-law Michele will be visiting next weekend!

Robin says…LiveStrong!

Robin says it's normal to cry sometimes, but she says afterwards we need to "stay positive". We've got an entire week of testing to go so she says we might as well choose to be positive and happy each day!

Today she's wearing a LiveStrong hat and shirt sent to her from the family of Larry, Faye, Jacob and Fuzzy. Now I *really* understand what that saying means!

Wake up call

On Friday we met with our local oncologist. She began by asking us what the doctor's in New York City had told us earlier in the week. We said we understood that the PET scan indicated metastases and that another round of chemo would be an opportunity to see if the cancer could be put into remission (cured?), or could be slowed.

The local doctor began by saying that *if* there are metastases to bone and liver then there is no cure that the doctors can offer (I guess you had to work in the cancer community to know this…). They could only offer chemo to try to extend Robin's time. The doctor said pretty much that metastases are always bad news, except for a few cancers like testicular (the kind Lance Armstrong had) for which they can pretty effectively treat even after it spreads.

Well, that seemed to be a different message than we got earlier in the week in the City…..

The doctor went on to explain that PET scans are relatively new and sometimes are erroneous. She said that since this is a "life-and-death" decision point that we need more accurate evidence before we discuss options. So the very first thing to do is to verify beyond a reasonable doubt whether there are metastases. She described three steps:

1. Take regular x-rays to verify if there is any damage to Robin's skeletal structure that lead to her easily fracturing a bone.

2. Take an extensive MRI (80 minutes long) to get a good look inside her bones for any physical abnormalities which would indicate cancer in the bones.

3. Take a more extensive CT scan (with contrast dye) of her liver to detect any lumps (there did seem to be several lumps detected by the combined PET-CT scan done in New York). Wherever lumps are detected they will take biopsies of those spots and have the pathology folks make a determination if they are cancerous.

The x-rays would be completed during our visit (and they all turned out good!), the MRI is scheduled for Monday, and the CT scan for next Wednesday. If anything is found on the CT scan then the biopsy would be scheduled for later next week or the following week.

One downside to all this is that Robin is experiencing greater pain in her legs and hips each day. Bone pain is a symptom of cancer in the bones, so that's not so good. Since Robin's been taking pain meds with increasing frequency, the doctor prescribed a pain med patch for her to wear. Saturday morning she awoke feeling less pain - the patch must be kicking in!

"Miracle House"

For the next few months Robin will receive care in our hometown, but for the last few months we've been staying in the city. At the beginning of Robin's treatment (in August) it became clear that we were going to be in New York City on-and-off for a long while. We have been blessed in so many ways throughout this experience and when it came to the issue of lodging the blessing appeared in the form of the "Miracle House" whose slogan is "Hope away from Home".

The organization, which is funded through private donations, rents five furnished three-bedroom apartments in a high-rise residential apartment building located near Times Square. It offers the individual bedrooms in those apartments (for a nominal fee) to families who are traveling to NYC for medical care - so Miracle House can accommodate up to fifteen different families at a time. The organization offers a multitude of benefits, many of which are supported by a network of wonderful volunteers. For instance, Reiki practitioners volunteer to provide Reiki sessions (holistic energy healing) to guests at no charge!

Miracle House also provides breakfast every day and a few dinners each week - all free of charge. Families can simply show up in the apartment lobby at the designated meal time and a Miracle House volunteer will escort the group to a local restaurant. The sponsored meals provide an opportunity to meet even more families (besides the families with whom you share an apartment), and they also provide an opportunity to meet and get to know the volunteers who provide both emotional and practical support!

We initially discovered Miracle House while searching for reasonably priced accommodations, but we have found so much more than an inexpensive place to stay. Having been a guest, it's difficult for me to imagine a family traveling to foreign city and staying in a hotel for months while seeking healthcare treatment. Besides the financial stress it could cause (e.g. hotels in New York City can be $300/night) patients must feel isolated and frustrated feeling that no one else could understand their "individual" cancer experience. In the Miracle House guests are brought together specifically by the common experience of a family healthcare crisis. Though our individual circumstances vary, it's been an incredible relief the last few months for us to be able to meet and talk with other folks in similar circumstances - and to meet the wonderful staff and volunteers who share their knowledge and their time with the guests. The guests, volunteers and staff there truly do provide "Hope away from Home".

(http://www.miraclehouse.org/)

Uncharted territory

Well, it seemed like the doctors in New York were not giving us a lot of detail over the phone or in e-mail. Having extra support seemed like a good idea, so as we left the house Tuesday morning around 11am I made a call requesting my brother Corry from New Jersey join us for the 4:00pm doctor's appointment. Corry managed to leave work, go home, pack a bag and meet us four hours later in the city.

At the appointment we did get the full detail and it was more than we expected (and more than we really wanted to hear). The full report identifies multiple metastases in her liver and multiple metastases in her skeletal structure (hip, thigh and a few others). Well, that explains the hip pain which she has been experiencing! Apparently having cancer in your bones can be very painful. Fortunately, Robin's been able to tolerate some pain meds and has been using them once or twice a day.

The doctor explained that having metastases in the liver does not immediately impede its function, well I guess that's the good news??? The cancer which has taken up residence in her bones can lead to fractures. He recommended x-rays to check the integrity of the each of the bone sites.

He has suggested a chemo protocol which is geared toward fighting metastases. He was pretty blunt, explaining that he doesn't know if a fatal complication might arise in the next month or two. He said a patient can be on chemo for up to six months then would need to take a break. The new protocol is still administered every 21 days. He said after about eight weeks we could expect to do another PET-CT to document what impact the chemo is having. He said we might find signs of remissions, but we might also find that the cancer has continued to spread (thus the heading "uncharted territory").

Robin's teaching me to find at least one positive thing in each day. My positive finding for today is that these news sites don't appear to be growing as fast as the cancer had in her cheek!!

She (and her fellow cancer patients) still have their sense of humor. Robin suggested we might be getting dehydrated from having teary eyes. A fellow cancer patient from Atlanta wrote to Robin asking why she is wanting to develop these new "hot spots" in her body and accusing Robin of contributing to global warming!

We're still hopeful that we'll be able to have some impact on the cancer and can't wait to start the chemo! Friday we meet the oncologist in our hometown and then we'll have more details.

We arrived home today (Wednesday). We're going to make dinner and relax for the evening!

Increased humor quotient!

Robin says we're being too morbid and we need to increase our use of humor. Here are some of her examples from this afternoon:

-Since we're going to be around home for a while I asked Robin if she wanted to visit the local "Gilda Club" (an organization formed after Gilda Radner died of cancer). Robin said sure, at the club meeting she'll stand up and introduce herself - "Hello, I'm Robin, and I'm an alcoholic -- oh, I'm at the wrong meeting"

-I saw the temperature of "29" at the local bank today and I said "29 degrees, can they be serious?". Robin looked right at me with a smirk on her face and replied "dead serious" and started laughing!

Schedule this week

Tuesday - overnight trip to the city to meet with Robin's oncologist and review the new chemo plan.

Friday - meet our oncologist at the hospital near our home to finalize the arrangements for Robin to recieve chemo locally.

Solid food!

Last week while in the waiting room at the doctor's office we met another patient who had received head and neck radiation. He stated that he never wanted to give up on solid food, so even in his last week of radiation he was eating solids foods (including steak!) for dinner. He said it took a lot longer to chew food, but he was too stubborn to give it up.

Robin's not quite up to steak, but Saturday night she requested "tater tots, eggs and sausage" for dinner! Then for Sunday breakfast more eggs and sausage! She's still using about five cans of liquid supplement each day through the feeding tube, but it appears that she's ready to incorporate solid foods into her daily diet!She says some things still taste funny, but the greater challenge is that her tongue is still fairly sore. This makes it a challenge to chew and manipulate food. Just try to eat without using your tongue!

Robin lifts me up!

We were pretty stressed-out after we received the news about the metastases and the cancellation of surgery. I guess the first night I just swore and questioned how this could have happened.

What confused me the most was that we'd just met with the surgical team and they had copies of the PET-CT scan, so why did it take them 24 hours to call back and cancel surgery? We had hand carried the PET results to the appointment and on the way there we had opened the envelope and looked at the stack of images. I had immediately seen non-symmetric spots on the images of her body and thought the worst, but before Robin could see I put the images back in the envelope and said "we don't really know how to read these, so let's wait to have the doctors look at them". I honestly didn't know if I'd just seen metastases, but there was no reason to start speculating about it with Robin prior to the doctor's appointment. I'd been relieved at the conclusion of the appointment - the doctors had discussed the planned surgery and had said they would call if there were any issues with the final PET-CT reading. In retrospect we did leave with a sense that the discussion lacked some level detail, some odd feeling of commitment on the part of the surgical team. Though I hadn't considered it before, I guess it's likely that the surgical folks took time to confer with the oncology and radiation therapy folks in order to make the best, most informed decision about how to proceed. So they may have told us as much as they knew at the time of the appointment.

The evening we first received the news I talked to my dad, and to a friend. The first few conversations are the most difficult to get started. Robin and I talked on-and-off the next day and then late the second night we talked for about an hour just after midnight. When we ran out of tissues we switched to paper towels - wow those things really are exceptionally absorbent! Even at the end of our discussion Robin's still got her smile!

I was still feeling emotionally wound-up today. I finally had a conversation with Robin and I told her that one of the most stressful things for me was that she might feel fearful. She allayed my fears by stating that no matter when she leaves this world - next month, next year, or in forty years - she'll be ready to go in Peace.

We're quite the team, but I swear sometimes she's the rock in our relationship!

Houston, we have a problem (surgery cancelled)

Well, we did get a call from the surgeon regarding the PET scan results. The purpose of the PET scan was to confirm that the cancer had not spread and that it was confined to the original area in her cheek. The results of the PET scan were disheartening. The test showed "hot spots" in other areas of Robin's body such as her "liver, skeletal structure and a few other spots".

To treat many areas at once involves additional chemo for Robin. If they were to perform the facial surgery it would delay the application of new chemo. It also wouldn't make sense to put Robin through the trauma of surgery while letting cancer go unattended in other areas of her body, so Robin's surgery has been cancelled.

It's obvious that the first four courses of chemo did not halt the progression, so we expect a new regime of chemo drugs to be recommended. We now have an appointment in New York City on Tuesday, and an appointment with a hometown oncologist on Friday. I expect chemo would commence the following week, December 11th.

The treatment is expected to be chemo, but no radiation at this time. So it will be possible for Robin to receive the chemo treatment in her hometown, rather than in the city. Way back in August we were told that this was the standard type of care, i.e. if the treatment involved chemo without radiation it was typically administered in the patient's hometown.

I asked the New York oncologist if this treatment would be considered "palliative care" - meaning that they could only slow down the cancer and he said "No, he didn't think so at this time". I asked if her odds were less than 5%and he said "no, he thought they were better than that".

We have received feedback from several clinical folks who work (or have worked in oncology). They say that although the news is disheartening, they have seen patients recover from setbacks such as this, so keep up the fight. I asked Robin what she wanted to do and she said "I want to beat this %^&$" - so I've received my marching orders and we're moving forward!

Thank you all for your continued support! The many e-mails, reminders and prayers help immensly to us get through the days!