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I am writing this from the infusion clinic. Yup, we are back at it. This time one of the five drugs will be different (bigger chance of hair loss - how fun?). We remain extremely hopeful and place our trust in the blessings of the Lord.

Prayers accepted and appreciated.

From NED to ED or is it PED? Either way, we miss NED!

Phil had his first post-chemo CT scan and CEA today. The news is mixed. The CEA was down a point (yay!) but the CT scan showed "several" millimeter-sized nodules in his left lung (well, what is left of his left lung). Is it cancer? Is it a bacterial infection? Is it some strange thing that we'll never know? The plan is to go back in five weeks and have more CT and CEA. The CEA has been a really accurate indicator in the past so the fact that it is down would seem to indicate it isn't likely to be cancer but you never know.

To celebrate this roller coaster ride we've been on we are headed to Six Flags over Atlanta tomorrow. It is what Phil wanted to do to celebrate the end of Chemo. So we're going by golly!

NED: no evidence of disease
ED: evidence of disease
PED: possible evidence of disease

Mixed Results

We met with the Oncologist (in record time too) and the results are a little mixed but mostly good - we are very grateful.

This is his last treatment - that is good.

His CEA is slightly up, to 4.7 (from 3.4), but seeing as how it was in the 180s at one point we're being told not to worry. We missed a treatment when our flight got delayed coming home from NY. I can't help but wonder if that is why it is up a bit and if so, what does that mean?

The game plan is to come back in six weeks for tests (CT scan and blood). As long as things remain stable (slightly elevated CEA is ok as long as it doesn't make a drastic turn upward), he will have these tests every three months for a year and then every four months for the next year and then every six months. At five years they will declare him "cured." We're looking forward to that! The Bambino will be in first grade!

I asked the oncologist how to define what stage he is in now. The answer is "no evidence of disease" Phil calls it "NED." We'll take NED. According to the web this is the same thing as "complete remission." We like the sound of that.

So, although I would love to see that CEA headed downward and hanging out at around 1, we'll count our blessings and increase our faith, and come back in six weeks.

Tomorrow's a Big Day

We head to B'ham tomorrow for more blood tests, oncologist appointment, and chemo. If everything looks good with his CEA it will be his last. We recognize that we have been so blessed in both large and small ways. Sometimes I feel so ungrateful but then I wonder if there is ever a way to feel grateful enough. It is like the people of King Benjamin in Mosiah 5 who realize that they are forever indebted, even for the air to breathe, to their Father in Heaven.

One of the small (but is any blessing really small?) blessings is that Eden was so young when this happened. She has been such a good baby to allow others to care for her. She still is but she is also becoming increasingly attached to her parents. I realized as I put her to bed tonight that I wouldn't see her again until we are home tomorrow evening. That makes us both sad. I am so grateful for the good women who will be caring for her tomorrow.

Stay tuned, I'll probably blog some from the clinic. If the CEA is good there will be much exultation and if it is bad, I will try to have faith and blog positive things anyway. Y'all can help me find ways to do that.

Thanks, friends.

Closer to normal...

3.2

Phil's most recent CEA
(better than last time at 3.4)

Here we go again

Right now I am sitting in the Infusion Clinic waiting room (mmm, stale coffee smells intermingling with rubbing alcohol smells...). Phil is in getting stuck for his blood tests. Then we are off to radiology (up a floor) for his CT scan. Then back down for his Dr. appointment. After that, we are back to infusion for his chemo. We are hopeful for good news today (although I always have to brace myself for not good news so that it doesn't come as a shock - is that lacking faith?).

Our RS president came early this morning to stay with Eden. I hope Eden wasn't too surprised or upset to wake up to her. Later both of my YW counselors are taking a shift. Good women, I'm so glad to have willing friends to help. I'm also grateful that Eden is pretty adaptable and hasn't had much "separation anxiety" (yet).

I'll post more as the day continues.

Ok, it is four hours later and he is finally in infusion (receiving chemo). We waited for three hours at the Oncologist's office. She is still on maternity leave but after three hours the nurse practitioner finally came in. She is a very nice girl (she looks about 18) but she was a bit insensitive. She first told us how busy she'd been and that it had been a crazy morning with scans that showed unexpected/bad information. Then she said, "oh, but your scan looks great! I was really glad because as I opened it I said to myself that I sure hoped it was good news because I couldn't take more bad news today." (Not, because I really care about you and hoped for good news for you!) Anyway, we are thrilled (for us as well as for her) that the CT scan was clean or "unremarkable" as they say. He will still have two more rounds of chemo (a round is two treatments). He starts a round today and will have the second part of this round on July 24 (happy birthday to him!). Then he will have a treatment while we are in Utah and his last (we hope for forever!) treatment back here at the end of August.

Poor guy, he was nauseated before things even began. The nurse said it is "anticipatory nausea." She said, you know you have it bad when you see your nurse at the mall and have to throw up. Indeed.

The report on Eden is that she is doing well. Because we are so far behind, I fear it will be bedtime before we get home. Poor kid, she wakes up and we are gone and then we get home and she's in bed. Let's be honest, she's probably fine with it, it is me that suffers separation anxiety! I miss that kid. While we were waiting for the CT scan there was a small child somewhere down the hall who was making Eden-like noises. I could barely stand it. Yeah, I like her quite a bit.

While we were waiting in the Onc. office I kept daring Phil to do obnoxious things. Here is a list of dares he DIDN'T accept:

"I dare you to mark OB-GYN related side effects on the form."

"I dare you to breathe deep like Darth Vader when she checks your breathing."

"I dare you to chew that Triscuit just before she checks your throat." (They don't even check his throat, but that would be funny!)

"I dare you to list 'annoying people' on the line for allergies."

I suppose we are glad that he didn't accept my dares but we got some nice (distracting) giggles out of the process.

A Day (or three) in the Life of Power Port Phil

Today Phil goes in for another infusion (the term used for intravenous drug therapy - chemotherapy in his case). For a while we thought this would be his last one. At his last appointment, two weeks ago, the Nurse Practitioner (NP) told him that she thought that the Oncologist wanted him to have chemo through August. It was upsetting news and frustrating to say the least. He asked her to check with the Oncologist (who is on maternity leave until mid-July). Imagine his complete frustration and just utter blah when the NP called and said that she'd discussed things with the Oncologist and actually she wants him to have chemo through October! OCTOBER???? Not the news we were hoping for. Of course they say, "it is ultimately up to you." I read in one medical journal that a patient who was having this type of chemo (preventative or adjuvant*) said, "so you want me to go through that hell to hopefully destroy cancer cells that you aren't sure are there and then when you are done you won't be able to tell me if it worked?" Phil says that is exactly how he feels.

So, today is not his last treatment. I thought it might be interesting to describe a bit of how this all works. I don't intend for it to be whiney but lets face it, you aren't going to come away from reading this and think, "wow, that Phil, what a lucky guy to get to do that every two weeks!" And with that warning, I will now proceed to describe what Phil will experience today (and the next two days).

He gets up at around 5:30 a.m. and showers (enjoying his last shower for three days), gets ready, eats (enjoying his last real meal for three or four days), and drives about 90 minutes to University of AL-B'ham.  He checks in. Then he waits.  He sits in a large room of other chemotherapy patients and their families.  The television is ALWAYS on the station that carries Tyra and all those court shows (like Judge Judy, et al). Not the most engaging programming.  In the air is the sickening smell of stale coffee (because they have free coffee for everyone who is waiting).  Finally after waiting for a while a nurse calls him back and they take samples of his blood so that they can make sure he is healthy enough for them to make him sick.  They test his white count and every-other-time his CEA. The blood is drawn through his Power Port so at least he doesn't have to be stuck.  When that is done, he returns to the waiting room and he waits.

Eventually he is called back to the infusion room and given either a chair or a bed (like a hospital bed) and his nurse begins the infusion.  He starts with decadron (a steroid meant to help him deal with the chemo).  Then they give him avastin (another drug that isn't chemo but runs interference so that the chemo doesn't do too much damage to healthy cells).  It has now been about an hour and a half since he's been in the chair.  The next drug is oxaliplatin (the platinum-based drug that does lots of damage to his tongue, his feet, and nose). After about two hours of the oxaliplatin, his pump is delivered along with the drug cocktail referred to as 5FU (this is the one that makes him nauseated). When that is all set up, he puts the pump in his fanny pack and drives home.  Once a month he also has an appointment with the Oncologist - I usually go with him on those weeks.

The smells of stale coffee, alcohol, and that distinctive-yet-unknown smell of hospitals are enough to make anyone nauseated.  Imagine someone who has poison being pumped into him and has made the emotional/psychological/physical association with being sick.  Yeah, he hates it.  He also hates all the waiting (even though he can take his laptop and do some work).

By the time he gets home his skin will be the color of radioactive yellow.  It is a hard color to describe but it is truly not a natural looking color. At first it really freaked me out.  By tomorrow he will have traded the yellow for pink (a color that I enjoy much better).

He'll spend the next three days taking three different anti-nausea medicines which won't completely do the job.  He will have to avoid all food and drink that is colder than room temperature.  He also will need to avoid touching anything colder than room temperature (oven mitts become refrigerator mitts). Increasingly, he will run out of the energy to hold and then to interact with Eden.  This is hard for him - they are great buds and adore each other. He will feel guilty because he thinks these weeks are hard on me emotionally and physically (and he won't be entirely wrong but I hate that he would feel guilty about it - I know he wouldn't have chosen this!).  He will lose between 5 and 10 pounds. 

He will have the pump and tubing of 5FU hooked up until I remove it all (including the needle!) 46 hours after the 5FU was started.  The pump will sound an alarm and we will go into the bathroom-turned-into-a-hospital-room and I will flush his line and remove the needle.  The Power Port really is pretty slick.  I'm grateful that we don't have to deal with blood.

After he gets unhooked he will spend the next two days trying to get his appetite back, hoping he's able to hold food down, and regaining his energy.  We both try hard not to think about the fact that he only has 10 days (at that point) until he gets to do it again.

We are grateful to live in a time when there are diagnostics and therapies available for cancer. We are especially grateful to live in a time when the priesthood has been restored and that the blessings of the priesthood power are available. Truly, we have both been very blessed in many ways throughout this ordeal.

...even so, cancer stinks!

*It takes approximately one million cancer cells to make a growth large enough to detect. Therefore the fact that there is no detectable cancer means he has less than a million cells - he could still have thousands. Therefore they do this adjuvant treatment in order to, we hope, reduce or destroy those cells that still may or may not exist in his body.

Better

This won't be a long post but I wanted to say that this chemo weekend went much, much better. Phil is a rock! The oncologist decided to only have Phil do chemo through June (instead of through July) and then have scans and tests in July to make sure things are good.

In Eden news...
Her latest thing is to say "hi." Last night we went for a drive and every time Phil caught her eye in the rear view mirror she would say, "hi" (with a little head cock and grin). She is so dang cute! Today we were at the store and she kept saying "hi" to everyone who made eye contact. She is our little socialite!

I'm just sayin'

I'm not really complaining (although this post may need a whiny warning) but our weekend wasn't the funnest.

Wednesday of last week, Eden had three little sores on her arm. At first I thought they were bug bites (we'd been outside the day before - working on our cute container garden) but after taking this picture and emailing it to my mom, we determined they were chicken pox (the pharmacist and pedi-nurse confirmed it). She'd had the vaccination the week before. The nurse had told us she might get a few pox. Yup - four of them. She didn't seem too miserable and wasn't supposed to be contagious but we kept her in most of the time anyway. I also kept her in long sleeves to prevent her scratching them. By the third day of long sleeves in the Alabama heat she just couldn't take it any more. As I put her shirt on she grabbed at the long sleeve and growled a frustrated growl. I think today may be the last day she needs the long sleeves. The other sad thing for Eden is that she didn't get to go to church and take the sacrament.

Friday of last week Phil went in for more chemo. He's been off for three months because of surgery but now he is supposed to have three more months of the poison (twice a month). The oncologist put him on a new drug that was supposed to help with the side effects. It didn't. In fact it had its own side effects (chronic, constant hiccups among them). Phil had a miserable weekend and today is the first he's been able to go to work. He's never missed two days after chemo (usually he doesn't miss any).

In spite of feeling miserable, he did manage to surprise me with a dozen beautiful roses, a couple of books, and a great DVD of Eden for Mother's Day. Obviously he didn't feel like making dinner (he didn't feel like EATING dinner until Tuesday).

Cancer sucks! ... I'm just sayin'

we are ... Fabulous, Grateful, Wonderful, Ecstatic!

Phil is now 7 weeks post-op and he received his CEA* results yesterday:

2.6!!!!
("normal" is anything below 3 for a non-smoker)

We are so grateful for this fabulous news. So many of our friends and family have been so prayerful for Phil. Our nieces and nephews have been especially diligent and fervent in their prayers. One nephew has prayed in each prayer that (1) Phil would not have cancer anymore, (2) Phil will get better, and (3) any future surgeries Phil may have to have will go well (he is 4).

We will meet with Phil's oncologist a week from tomorrow and will make some decisions about possible follow-up chemotherapy.

The Keslers are HAPPY, happy people!

*The carcinoembryonic antigen (CEA) test measures the amount of a protein that may appear in the blood of some people who have certain kinds of cancers, especially large intestine (colon and rectal) cancer. It is one of the indicators used to follow up with cancer patients. This and the fact that Phil's PET and CT scans look good, combine for very good news.

Phil's CEA has been as high as around 200 and was at 77 the last time it was taken (Feb.)

Smooth

Things went great today "better than hoped for" according to the surgeon.  They were able to remove the tumor and repair the hernia. We are so grateful! Eden is getting along great with Merilee and is having quite the week.  She finally got her first tooth (with others making their way soon), has begun to wave hello and good-bye, is nearly crawling (she gets up on all fours and will move a hand or knee and then chicken out), and is transitioning to formula (I quit pumping!).  She is such a cutie!  But I digress, this post is about Phil.  He has been up walking and is eating and will likely be able to go home tomorrow.  Thank you for all your prayers and faith and good thoughts.

Too Early for Me!

Well, we have a "report time" for Phil's surgery tomorrow (he is having his right adrenal removed - we hope it is the last of the cancer-removal surgeries). We have to be at the hospital (an hour and a half away!) at 5:15 a.m.! Last time we had to be there that early and then waited ten hours before they even started the surgery. I'm hoping it isn't that way this time!

Maybe if they had a more efficient check-in method people wouldn't be bringing in tents!

I'll keep you posted on how things go with the surgery. For now I'm headed to my bed for an abbreviated sleep.

Power Port Phil

Phil had his Power Port put in yesterday - it went really well. Now he has two more scars to add to his collection. He also gets to wear a cool bracelet (like the Lance Armstrong- LiveStrong ones) indicating that he has a Power Port. He's cool! He will receive his first chemo infusion tomorrow. We are pretty hopeful that it will be effective without causing too many of the side effects, the most likely being neuropathy.

Eden did really well with the ladies from our branch which makes it much easier to leave her again tomorrow.

Our friends in the Adam's Park Ward - in Logan, UT - fasted for Phil on Sunday, for which we are really grateful. It is just so wonderful to have family and friends all over the nation praying and adding their faith for Phil's successful treatment. Thanks everyone!