Flyboy: A Cancer Story

Chapter 1

I first started reading blogs about 4 years ago. I got hooked on a Caringbridge blog first - it was written by the parents of one of my piano students in Iowa, named Heidi. Heidi had been diagnosed with a Wilms tumor (an agressive cancer that starts in the kidney) and her parents used Caringbridge (a website where people undergoing a health crisis can start a blog - www.caringbridge.org) to keep people updated without having to repeat the latest news over and over everytime someone asks. I checked their blog every day, and felt so very connected to them even though we had moved far away. They tried absolutely everything, and in the end, after two long years, Heidi died. Her family posted one more entry and then posted no more. Feeling such a part of their story, even from afar, and then having it abruptly end, with no more communication was harder than I imagined. I felt her loss like no other.

On a Caringbridge site (as in any blog), there are opportunities for readers to leave comments. It is through this mechanism that people network with others who are going through similar situations and find support. I had learned about several other cancer families on Heidi's site, and after her loss, I found myself reading their updates as religiously as I had Heidi's. In the blogging world, someone who reads anonymously without ever revealing himself in the comment section is known as a "lurker". I became a lurker and really got hooked. I don't even remember who I got hooked on first. Flyboy thought I was nuts, as if I didn't have enough hardship in my own life and needed to suffer vicariously through others. I didn't even know why I was doing it, but just losing Heidi had seemed so hard, and continuing my daily blog reading ritual, for some unknown reason, seemed therapeutic.

I have learned a lot about cancer from reading blogs. One of the most gut-wrenching aspects is what people go through trying to save the life of their child. No expense is too great, no treatment is too extreme. At the end of it all (and childhood cancer ends a life more often than not), families find a very small measure of comfort in the fact that they know they have done everything humanly possible. What some cancer patients go through in treatment is unthinkable and as you read, you find yourself wondering why they don't just accept the reality of their situation and let the child go...at the same time, you know that if you were in their shoes, you'd most likely be driven to go to the very same lengths. I think this is particularly true with children. Through the years, I've often wondered how I would respond if cancer ever visited our family.

I guess we get to find out.

Flyboy has struggled with any number of mystery maladies in the past year, which I won't get into here. This week, he had a neurological workup where, happily, it was determined he does NOT have MS, though a recent MRI seemed to indicate thus. We celebrated with frozen custard (a local delicacy). Yesterday (the day after dodging the MS bullet), he went in for a follow-up with his surgeon, who had removed a lump from his leg last week. This little surgery had been quite innocuous...the lump has been around for a couple of years, and his dr. figured it was a varicose vein or a cyst...nothing to be worried about, but if it bothered him, he could have it removed. It was bothering him enough that we figured it was time. Last week's surgery happened in the office - nothing but a local - and Flyboy watched him do the whole thing. He wouldn't even let me come along, and he stopped in to visit a parishoner at the hospital next door to the clinic after he was done. No big deal.

Well, apparently it wasn't a varicose vein after all. It was cutaneous leiomyosarcoma (I think I spelled that right), which affects a whopping 4 out of a million...that's how rare it is. I always knew Flyboy was special. There are no specialists in the entire state that deal with this cancer. So we went from no MS (hooray!) to LMS (stink!) in 24 hours. There is a real irony to that...

I was at work (it didn't seem necessary to accompany him to the follow-up either) and when he got back to church, I knew as soon as I saw his eyes that something was up. I was meeting in the sanctuary with a guy who is hanging a cable for a curtain across the platform when Flyboy walked in. He joked around and acted like it was another normal day...normal for just a couple more minutes...just a few more minutes of relief that it wasn't MS before having to spill it, and then begin to live in a new reality.

Neither of us got much work done the rest of the day. Lots of reading about this rare cancer, and intermittent periods of hope (his showed up on a leg, and these tumors are easily dealt with) and concern (what if there are more tumors internally?), and most of all, questions upon questions with no answers.

Today, we go see his primary care dr., and hopefully, we'll arrive upon a strategy. The surgeon was ready to operate again right away and THEN recommend an oncologist. Maybe we're wrong, but that approach feels sort of backwards to us. Plus the fact that this surgeon has been removing lumps from people for the past 13 years and this is the first one that was malignant. Is he the right guy to be going back in?

So - we are at peace, interestingly enough. Flyboy put a post on our church email prayer chain yesterday - thought it was better for it to come from him than through the grapevine - and we can already sense the power of prayer. Partly we are numb, partly we are sort of floating until we have a better understanding of what is going on, and mostly we are resting in the arms of our heavenly Father, who was not in anyway surprised by what surprises us. He is our sustainer and our hope for eternal life, and we need not fear. Not a bad place to be after all.

Chapter 2

The first thing we read on the Leiomyosarcoma Foundation webpage was that after an LMS diagnosis your life is never the same. We thought that was a little melodramatic when we read it and now after a couple of days of settling in, we still don't know what the life-changing part will look like, but we're moving ahead. We can say the "C" word out loud and it sounds less shocking and more normal. It's really amazing how quickly one can adjust to a new reality. It is what it is, and we just have to deal with it. If we don't waste a bunch of time and energy worrying or wondering why, we're left with more to constructively cope.

Flyboy had an appointment with his primary care physician (PCP) yesterday, who referred him to an oncologist and has a lot of faith in his surgeon. I have since talked to a nurse friend who also knows said surgeon and agrees he is very good. His PCP said they have better luck with insurance companies paying for PET scans when they're ordered by the oncologist than by him, so the next step is to get into the oncologist. We'll tackle that on Monday. We'll need to ascertain if the oncologist seems competent with this rare cancer or if we need to look somewhere else. There is a sarcoma clinic in Ann Arbor, MI, and a specialist at Mayo Clinic. Both seem so far away, and we're leaning toward just hanging on until after the scan and surgery to have a better idea what we're dealing with. Then, if the prognosis calls for aggressive treatment, it might be time to call in the big guns. If it doesn't, and the surgery gets it all, we'll probably just stay close to home. That's the strategy (for today, anyway).


That was yesterday. Today, we find ourselves feeling stuck between two worlds - the one where we don't have enough information to know be too worried, and the one where we are being bombarded with information that is a little too far on the scary continuum for comfort. Our dear, dear friend Roommate talked to his oncologist friend who strongly recommended finding a sarcoma specialist without delay and NOT waiting until Aug. 22 to have surgery. This is difficult on several counts, but the biggest obstacle is the fact that there is not one (no, not even one) sarcoma specialist in our entire state listed on any of the sarcoma websites. Flyboy is calling the cancer center at a local hospital to see if they have a recommendation. From there, I'm not sure what will come next.

We are both struggling today. Roommate knows Flyboy better than just about anybody, and he knows what it will take to get Flyboy's attention. Believe me, he got it. We know what we know about the faithfulness of God and truly are sustained by it. We feel the prayers of many on our behalf. But in the middle of the night when I'm awakened by whatever and can't go back to sleep because I just want to hear the sound of Flyboy breathing next to me, it's a little harder. Nighttime is the worst, when irrational fear (which doesn't really seem so irrational in the middle of a cancer diagnosis) reaches in and all I can think about is not wanting to be alone.

Chapter 3

Present day:  The waiting is still the hardest part of cancer, even today post-treatment.  You just want forget the monster ever attacked but they won’t let you.  There are appointments with the oncologist, appointments with the radiation oncologist, physical therapy appointments to deal with the effects of the radiation, regular scans to see if it’s coming back anywhere, and bloodwork.  We’re still playing the waiting game.

Thank you, Roommate, for the push to move in a new direction. We called two of the major cancer centers in the city and found that one of them has two sarcoma specialists! This is after looking at all the sarcoma websites and finding NONE in the entire state. Our local teaching hospital has a brand new sarcoma center, and boy are we glad to be able to stay here for evaluation and possible treatment. They can get him in within a week - better news yet! The first thing they want to do is to get the slides that were studied from his biopsy and have a sarcoma pathologist re-test them. Then, they'll most likely have their own specialist operate there. Hopefully, we'll sleep a little better tonight.
This is the weirdest combination of the best and worst times to start a new job. It's the worst time because August is the busiest month of the year in children's ministries and I worked grueling hours trying to finish well at church. It's the worst time because I feel spent between finishing at church and dealing with cancer and like I don't have anything left to give a new job. It's the best because what all of this is going to cost is unknown and some extra money will undoubtedly come in handy. And it's the best because it gives me something else to think about.

Because it feels like a lifetime has passed since Tuesday. Monday and Tuesday were big test days for Flyboy at the hospital: a bone scan, 3 CTs, and a rather involved set of MRI shots covering every last inch of his tumor leg. I told him that after last year's heart cath, his recent head MRI and all these tests, there's probably not a single centimeter of the inside of his body that has gone unseen. He tolerated it all pretty well for the most part, save some wild blood sugars as a result of having to lay off the diabetes meds for a couple of days while his body processed the FOUR different contrasts he was given to light up his insides.

And this coming Tuesday feels like it's another lifetime away. (That's when we go back to get the results of all the above tests.)

I sort of hit a wall on Thursday - it was like my body was screaming, "ENOUGH ALREADY!!!" and "WHAT PART OF STOP DO YOU NOT UNDERSTAND???" I left work early with a big migraine, pulling over along the way to throw up, and when I (thankfully) made it home, when straight to bed until morning. Friday was only marginally better, and today a bit better yet, with traces of headache still lurking and just enough energy to do some laundry and pick up a bit.

Flyboy was off this week on vacation, and believe me, spending two days of it at the hospital was not his first choice. But it was better than missing more work, and he did get one project done around the house, so all in all, a good week.

Did I mention that Tuesday is looming large and taking forever to get here?

I would say that up until yesterday we have handled the not knowing pretty well. Our faith is sustaining, and we know that no matter what happens, it is a win-win. That being said, Flyboy felt the need to talk yesterday about some of the "what-ifs" and I just lost it. I have avoided going there because it seems like a huge waste of emotional energy when things could just as easily go the other way and have a happy ending. I realized that for all my brave talk, I am in no way ready to deal with that sort of thing. After I recovered, we did have a productive conversation and while I'd rather be in denial, he did feel better verbalizing his feelings about it all.

Waiting is the hardest part of what we've faced so far. If waiting is the hardest thing we have to endure, we'll be celebrating come Tuesday.

Chapter 4

So as not to draw out the suspense, our news at the hospital couldn't have been better. There is NO cancer anywhere else in Flyboy's body! Long story short, he'll be having surgery to clean out the tumor site, and he'll stay overnight as they will be putting a drain in his leg for a time. He'll be off of it for about a week, and will start radiation once it heals up. Five days a week for five weeks...that will be a haul, but after that, he's DONE.

I think I'll be living at work between now and the time school starts (when I'm not at the hospital), but it's a small price to pay for such good news. Girlfriend plans to stay with us next week, since with her laptop she can work from anywhere she can get an internet connection. She'll play nursemaid to Dad once he's home, which of course, he insists he does not need. (But he WILL appreciate the help.)

We are all emotionally wrung out after the drama of the past few weeks, but in every other way we're flying high. Pebble's dad is a physicist and works on the cutting edge of medical technology. He told me something I hadn't known before (which happens almost every time I talk to him). Did you realize (I sure didn't) that in 1977 there was no such thing as a CT scan or an MRI or chemotherapy or radiation therapy? Back then if it was suspected that you might have a brain tumor they just drilled a hole in your skull to have a look see. It's really amazing to think how far we've come. It was fascinating to look at the scans this week with Pete's oncologist - we saw "hot spots" on his neck, indicating degenerative arthritis (but no cancer!). And we saw unbelievable pictures of every part of his insides. They had one "slice" view of his leg that looked like a ham shank. And they could determine a prognosis with a high degree of accuracy and create a plan of action. It's a good time to be alive. Flyboy's surgery was a success in that clear margins were achieved. He came back with his leg bandaged from his toes all the way up, with a drain from the wound, and his leg immobilized in a brace. The dr. was pleased with how it went and explained that the *portion* he removed was 11 cm long, 7 cm wide and 3 cm deep. Being a little slow in metric conversion, it took me awhile to calculate (actually I found a conversion site online) that he was really saying 4.33 inches long by 2.75 inches wide by 1.81 inches deep. It was the 1.81 inches deep that took my breath away once I figured it out. It bled quite a bit in the night and when they changed the dressing this morning it looked rather like he'd been bitten by a shark...a little shocking at first look. The dr. originally indicated he might call in a plastic surgeon, but didn't. He just stretched the skin and put in a heck of a lot of stitches underneath and a lot of staples on top.

We had hoped that Flyboy could come home today, but the dr. said no, and so after a room finally became available this afternoon, he was moved up to the surgical ward from day surgery. He felt good for much of today but late this afternoon started feeling bad again. His leg hurt and his back hurt and his hip hurt. We tried everything and every position possible to make it more bearable, but nothing was helping. He also got a little behind on the pain curve, which certainly didn't help. So, a couple more doses of pain meds, and he was hoping for an early night.

Chapter 5

There is an odd science fiction aspect to the passing of time when you're at the hospital. Like a vortex or a taglian loop or a time warp or something...it's like time stands still. Or moves in a repeating loop. Or maybe it's moving backwards - that's what it felt like when Flyboy would call  for pain meds and the nurse took 30 minutes to get there. Or when we called for "transport" to take him to the car today and it took 45 minutes.

It is not easy to get into a vehicle when you can't bend your leg. Thankfully, I had the presence of mind to bring the van, and after realizing the front seat was NOT going to cut it, we pulled over and repositioned him behind the front passenger seat with his leg between the two captains seats propped on my bag. Much better. But what an ordeal! He is happily snoozing in his recliner after a miserable two days trying to find some way to lie where he could find relief for his back and his leg at the same time.

The hospital said they'd be sending a survey to find out if we were satisfied with their patient care. We're not too sure which expectations are reasonable and which are not and want to ponder that a bit before responding. One thing I do know for sure is that no one should ever be alone as a patient in the hospital. Right after surgery Flyboy was unable to articulate what was bothering him, but because I know him so well, I was able to ask the right questions and find out immediately. If I hadn't been there, I'm not sure anyone else would have been able to figure out how to help him (at least not easily).

So, it's good to be home, and hopefully, we'll both get a good night's sleep. Girlfriend is here, at the other end of the couch, typing away on her laptop as I type on mine. I didn't know if was physically possible for a person to type as fast as she does, but apparently she really is doing it. She can work from anywhere if she has internet access and a phone, and this reality makes it possible for her to be here tomorrow (and for the next few days) so I can go back to work. I'm really thankful for a quiet afternoon to kick back and relax. And hey, after two days at work I get a three-day weekend for Labor Day.

Flyboy has to go back to the dr. on Tuesday for a check-up and at that time they'll remove the drain. The brace stays on for at least two weeks (maybe longer) and the staples won't come out for a good two weeks either. With the skin stretched like it was to close the wound, it will need to be seriously healed before he can be bending his leg.

Thank you (again!), Linda, for bringing supper. Not having to figure that out tonight is a great big blessing. Rumor has it more food is on its way from some other ladies at church. I'm good with that.

Chapter 6

Flyboy had his follow-up check on Tuesday and the first clue that something wasn't quite right was the look on the PA's face when she removed the dressing. Flyboy's leg was every shade of black and blue and swollen and tender, probably more than it should have been after a week. She suggested this could be a problem.  Not the encouraging word we were hoping for.

His oncologist seconded the motion and ordered him to the hospital for a second surgery to clean out the wound to remove a hematoma, which obviously made Flyboy very sad, having just spent his first day in a week feeling, well...he was almost afraid to admit it...somewhat good. His surgery was yesterday afternoon, and we brought him home this morning. I stayed with him last night, trying unsuccesfully to sleep in the recliner in his room, which I would liken to an instrument of torture. One plus was the ability to watch two quarter final matches at the US Open aired on cable in "primetime". Who knew that "primetime" means starting a tennis match in the late evening, finishing before midnight and then turning around and starting another? We watched Serena barely beat Venus and then Rafa Nadal take down Mardy Fish, a player with lots of game who is a little short on mental toughness. So the night was not a total loss.

Girlfriend is here this afternoon, working from a much more comfortable recliner. Flyboy is sleeping, and I'm afraid to sleep any more (I got in a couple of hours) for fear I won't sleep tonight.

It seems that the hematoma was a bit bigger than first expected. When Dr. H. held out his hands (as in the commercial "you're in good hands with Allstate") he was holding the imaginary blob. His PA said, "Well you should be having some extra pain tonight. I had my hand inside your leg." Ouch. Dr. H. took a picture of the monster laying on the table next to a ruler and it was 5" long and 3" high.

I think it's safe to say Flyboy should begin to feel better now, providing he doesn't have any more hematoma issues. Dr. H. said this morning that it looked like a huge pile of grape jelly. I'll never eat another PBJ, and thanks to me, you may not either. There is a bigger drain tube in his leg, and we got some new instructions on how to "strip" it (move the blood along to the receptacle to avoid clots forming and blocking the way).

I just have to say that my new boss (and the HR head) has been terrific in this difficult time, giving me time off at the beginning of the school year to be at Flyboy's side. This week, half the middle school is at a nearby camp having an "outdoor education" experience, so that helps things be a little less crazy at school.

Needless to say, "there's no place like home", and we're certainly happy to be here.

Chapter 7

Finally, some good news. It's probably not fair to start out as if we haven't had any good news in years. Not too long ago we were blessed to learn that Flyboy is cancer-free again and that was really good news. But two surgeries in two weeks WAS rather depressing, prolonging the staple removal and the ability to take a shower even longer. It's amazing how long three weeks feels when you have a leg full of staples (22 the first time - and only 19 the second time...Flyboy complained he'd been short changed). Personally, I think that two weeks is an awfully long time to leave staples in, remembering the difficulty of staple removal after a week following my third c-section. Just to clarify - Flyboy had surgery to remove the margins around his tumor site, and one week later had to go back for the removal of a hematoma. The staples had to stay in two weeks following surgery #2, thus the three week staple marathon.

But I WAS going somewhere with all of this...oh yes, the good news. We were admittedly a little nervous about yesterday's appointment as the wound site seemed a little pink and a little warm to me the other day, and the thought of MORE surgery was absolutely and in every way unthinkable. Well, thankfully, we don't have to think about it, because yesterday's news was good. Dr. H. removed the drain (and yes, that did hurt a bit), and said Flyboy can take a shower on Friday and the staples will come out next week. Hip hip hooray! I felt almost as relieved yesterday as I did when the scans came back clean. Yippee!

Flyboy has taken off his leg brace long enough to drive himself to work a couple of days this week. Today was a not so good day (he has good days and less than good days lately) and so he came home early and put himself to bed. He was careful to point out that he'll count this as his day off and work Friday (his regular day off) instead. Ever the over-achiever.

The days are flying by and soon the wedding excitement will begin. I haven't cleaned the house in a month and am thinking it's probably time, before the company starts arriving. We are all SOOOO excited - Elasti-girl & family, my parents and two brothers are coming, as are my aunt and cousin, Flyboy's spiritual parents, friends from college/Air Force, friends from our last church, and more. (No, they're not all staying here.) And we're all so stressed. I've started a new job, lived through a cancer diagnosis and three surgeries, and Bamm-Bamm's wedding is around the corner. But weddings are such a fun reason to get together, and we're looking forward to it. The bride and groom are getting a little nervous about the planning of the service since Dad has been down for so long, but it will all come together in the end.

Chapter 8

The next step, according to the experts, is radiation. In the beginning, Flyboy thought that after surgery this thing would just be "over". I think the word "over" was taken out of the cancer dictionary. My boss is a two-time breast cancer survivor and after 12 years of being cancer free, she is still injected quarterly with a pellet containing preventative chemotherapy. Flyboy goes in for his "dry run" for radiation on Thursday, and then presumably, will start soon after that. I can't wait to tell Bamm-Bamm that his dad got a tattoo (though you have to look really hard to find it). They marked his leg with ink in a needle (doesn't that qualify as a tattoo?) and made a mold which will be secured to the table so his leg doesn't move during radiation. He has to go 5x a week for 7 weeks. He struggled for awhile with the REAL necessity of submitting to radiation as he tested cancer-free after surgery. The clincher was the revelation that if the cancer were to recur in the same place he would possibly lose the whole leg. We'd obviously rather not go there...

With Bamm-Bamm and Pebble's wedding over and Flyboy getting settled with his daily trips to the hospital for radiation, life is falling into a routine again. He's found a nearby coffee shop where he rewards himself for making it another day. The beginning was easy, with no side effects whatsoever. As the time is dragging on (he's almost halfway done), it's getting harder to stay the course. He keeps reminding himself that compared to chemotherapy, radiation is a walk in the park and he has it so much easier than so many others. But the daily drive during morning traffic is starting to get to him, and he is getting tired, and his leg is starting to bother him. It is beginning to look sunburned, and there is no hair in the radiated area anymore.

I had a day off of school and accompanied Flyboy to his treatment and then out for coffee. It was my first and last opportunity to go along, so I wanted to see where he'd been going every morning for the last month. He changed into his basketball shorts and we went into the room where it all happens. He climbed up on the table, pulled up the left leg of his shorts, tucked a towel in his groin to hold his manhood out of the way of being radiated, and they strapped him in so his leg wouldn't move. They left him on the table without any lead vest or any other protection, and we left, the tech closing the 6" thick door securely behind him. I felt a sudden panic sweep over me as they excused me to the waiting room and they proceeded with the controls to begin the treatment. You wonder how on earth this can be good for a person...

We're down to the last week of radiation, and Flyboy told the technician this morning that he doesn't think he's going to make it. What, after all, is the REAL difference between 30 and 35 radiation treatments? His leg is on fire and he hasn't been able to put anything on it to soothe it without risking interference with the final treatments. The tech finally gave him something to use "sparingly", but it's not really cutting it. (To use too much during treatment is to risk magnification of the radiation. Not a good idea.) After a pep talk and reminding Flyboy that he does NOT want this cancer to return, he has agreed to finish the course. Not happily, not willingly, but he has agreed...

Today is momentous at our house because as of 8:00 this morning, Flyboy completed the last of 35 radiation treatments. Bring on the balloons, confetti, streamers, sirens, fireworks, and crazy running around in circles. He even gets a certificate! I told him it had better be framed and hanging on the wall by the time I get home from work. He took this week off to lay low and give his body a chance to recuperate, and it was the best decision ever. And now that he's done, he can slap that magic cream on his leg with abandon. Go to town, honey!

Cancer reminds us everyday that it is a silent enemy, lurking in the dark places, threatening to strike out at any moment. We count every single cancer-free day a victory and will celebrate it with joy. Others we know have fought the good fight but are not winning the cancer war, and our hearts and prayers are with them...

Tomorrow is Thanksgiving. We have so very much to be thankful for. Today, more than anything, I'm just thankful for today. We've made it this far and come to appreciate each and every day as the gift it truly is...

It's December now, and Flyboy has had his first post-treatment scans. They did CTs with contrast of his trunk, and said an MRI of his leg will have to wait six months because his radiated leg would just look like "mush" (their word). Funny, they never mentioned that before... He met with his surgical oncologist today who reviewed the scans with him. No "hot" areas were indicated, meaning he can still be considered cancer-free. That was the best news of the year! They did find something on a rib, which the dr. said is a fatty tumor. The word "tumor" made Flyboy about jump out of his skin, but he was assured it is nothing. And, they saw a spot on his bladder, which they again said was nothing. "Nothing" sounds quite good to us, thank you very much. We'll take "nothing". We won't argue with "nothing". We like "nothing". "Nothing" is our new favorite word.

Chapter 9

I've been telling Flyboy's cancer story, going back to the beginning, and sharing from the journal I was keeping at the time. The thing about cancer, though, is its story can be ongoing, and one never really knows for sure when the next chapter will write itself, or where things will end up. I'm not even close to the present day in my story, but the present is here and things are happening here in the present. I've contemplated pushing the rest of the chapters through to their completion, but think that I'll let it continue to unfold a little at a time.

In the meantime, the present stops for no story, and I am feeling the need to get it down in real time.

Last month, Flyboy had his three month scans (his first set since the end of treatment, and his second since diagnosis). Interestingly enough, they won't be able to scan his leg until summer, as it was damaged during radiation and will just look like "mush" (their word) in an MRI until it's had adequate time to heal. So for now, they just scan his trunk. A "spot" showed up on his latest scans, and needless to say, that's not a word you want to hear. Ever again.

Flyboy has had leiomyosarcoma, which is a rare smooth muscle cancer and affects only 4 in a million. They say that if you have it in a limb your chances are pretty good. It's when it shows up somewhere else - somewhere harder to treat - that things get dicey. We were feeling pretty good about things when Flyboy was pronounced "cancer free" following his treatment. And then the "spot" showed up...in his bladder.

We've known about this for about a month. The next recommended step is a cystoscopy, where a camera will be inserted into his bladder for a look-see. And yes, you guessed it...you're right...that's how they get it there. He's already cancelled the procedure once (he was sick) and now today is the big day. I've pretty much been able to set this all aside for the past month, but I have to say that now it's here, I'm a bit on edge. It's every cancer patient's worst nightmare - the possibility that it's back again. And for every cancer patient's spouse, it's equally terrifying.

I know what I know. I am a person of faith and I know that no matter what happens, God has promised to sustain us. He has proven Himself, and we have no reason whatsoever to doubt His provision ever again. I know that no matter what happens, God can and will use it for good. It is one of the more amazing aspects of redemption - His ability to redeem any situation, no matter how seemingly impossible, for good. We have been on the receiving end of this phenomenon more than once and know it to be true. It's not what I know that I have trouble with. I know that no matter what happens, we'll be okay in the end. Whether here on earth or with Jesus in heaven, it will all be good.

What I have trouble with is what is inbetween now and then. Mostly because I don't know what that is. For me, not knowing is the hardest part of all. That, and the serious desire for Flyboy to not be invaded by recurring cancer, one body part at a time.

So today, we find out what's going on, and if something is indeed going on, what they recommend he do next. I have come to a place of peace on the one hand...wanting to let Flyboy choose his own way in all of this and being willing to live with whatever he decides - to be treated or not to be treated. On the other hand, after having spent the better part of my life with this man, I can't even begin to imagine life without him. I really hope I don't have to.


Chapter 10

Flyboy survived both the humiliation and the discomfort of the cystoscopy. It really didn't take too long at all, and I was praying non-stop while sitting in the waiting room. After about 20 minutes, the nurse called me back to the room, where I figured he would be recovering. But instead, the dr. wanted to show me what he was looking at on the screen...a tumor. And one that is most likely malignant.

They did not do a biopsy today, because the local they gave him wouldn't have been enough. Surgery will be scheduled, where they will biopsy the tumor, resect it, and cauterize his bladder. All without an incision. Yep, they'll be going in the same way they did today. Except, thankfully, this time he'll be out. Then, the pathology will reveal what kind of cancer it is and then they'll know what to do about it.

The dr. today said that most bladder cancer is easily treated - just cut it out and be done with it. That sounds nice, and as Girlfriend said, "I'm just going to believe that this is what is going to happen." Bamm-Bamm was equally optimistic. Me? Not so much. Not because I'm negative by nature...quite the opposite. I usually see the silver in every lining, the sun behind every cloud. Today, all I could think about was leiomyosarcoma. Raising its ugly head once again in a new and unsuspecting place. Taking Flyboy's cancer from a measly Stage 1 to a menacing Stage 4.

But no matter what my fears, you can't know what you can't know. So, in the meantime, it really does no one any good at all to imagine the worst. Especially me. Life goes on, whether we like it or not, and the responsibilities of every day must be attended to. So, I am determined to live one day at a time, caring for the tasks at hand, grateful for every single day we have together.

Chapter 11

We were happily emptying our nest, launching the last of our birdlets out on their own. I decided to begin this website, with the help of my lovely daughter-in-law, Pebbles, to talk about the ins-and-outs we've experienced through the years. Getting started as a young adult these days is harder than ever, and our kids have had a couple of crash landings along the way, necessitating a trip back to the nest to regroup and relaunch. I figured this conversation could keep me busy for quite a while, and I think it will, but in the meantime, life has been interrupted with that ugly "c" word we thought we were rid of. For me, it becomes immediately important at times like this to process out loud (or in this case, on paper, meaning it might as well be here) in order to deal with what is going on and cope effectively.

Call me weird, but I've sort of figured out my cycle of coping, having had some practice just last summer. I realized today that I am repeating the very same responses I had when Flyboy was diagnosed with leiomyosarcoma in July. The feelings of "how could this happen to US?" are virtually non-existent. I'm not even tempted to ask why, already knowing the answer to that question. We live in a fallen and broken world where nobody is promised a free ride. I get it that "He causes the sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous." I don't think we deserve preferential treatment because we are in ministry, and I believe with all my heart that God will, somehow, in the end, redeem this suffering for good.

So, with the "whys" out of the way, I tend to live in the possible reality of the worst case scenario for a few days before settling into the present reality of the unknown. Yesterday, I thought I might skip the I'm-going-to-lose-him step and really be okay with it all right up front this time. That was yesterday.

The hurry-up-and-wait aspect of cancer treatment is maddening. The urologist acted like this was no big deal, we'll just cut the tumor out, cauterize it and check you every three months. End of story. We'll call you to set up your surgery. Today, they called and scheduled Flyboy's surgery for June 2, with a female urologist. This did NOT go over well with Flyboy. He wrestled with himself for awhile, reasoning that maybe it shouldn't matter since he'll be asleep for the surgery anyway, but then remembered the follow-up care part and decided that this indignity was the last straw. He called back and told them he would wait as long as it takes to have a male doctor operate on him. That pushed things out until the end of June. Okay, he said, no problem.

Well, the very same guy he saw last week who made this all seem matter of fact (like every person who has a cystoscopy has bladder cancer and you just clean it out and come back in three months and forget it), is all of sudden VERY concerned that this surgery and subsequent pathology happen SOONER and not later. So they got him in with a boy doctor on May 29.

Flyboy is taking the approach "I figure it could just as easily be nothing, or at least be a different kind of cancer, so I'm not going to worry about it. I'm just going to wait and see what it is and then we'll figure out what to do next." I, on the other hand, have buried him, sold the house and bought a condo closer to work. We talk about this a lot, just like we did last summer, and he knows I don't WANT him to die - on the contrary, I can't imagine life without him. Which is why I force myself to try. I think I might need therapy...but it is how I cope. After I get it out of my system, I'll be at peace with the waiting and will lean into the unknown rather that bouncing off it.

I guess the point is we all deal with life's interruptions in our own way, according to our individual bent (and in my case, a certain amount of warpedness). I affirm Flyboy's cycle of coping (which includes some anger, some denial, and some good old common sense) and he affirms mine. We are here for each other, we have locked arms, and we are facing the monster together.

Chapter 12

There is nothing like the words "there is a tumor and it is most likely malignant" to sober you up...particularly for the second time in less than a year. I've considered my coping mechanisms and processing stages somewhat weird, but they seem to work for me. And come to find out, after confessing my propensity to live in the worst case scenario for a time, I'm not alone in this approach to dealing with a cancer diagnosis (or in our case, an impending diagnosis).

A week has passed since those fateful words were uttered and I've pretty much exhausted all the what-ifs in my head to the point that I'm ready to move on toward an action plan.

We've talked on numerous occasions about the impact of diet in good health, and while I've considered a radical approach since last summer when Flyboy was first diagnosed, it seems so very daunting. Flyboy doesn't just have cancer. He has diabetes, and the cancer-fighting diets recommend a high intake of complex carbohydrates. He has to limit his carbs, and while complex carbs also provide fiber (which offsets carbs) I haven't taken the time to figure out how this could work for him. Next, he has reflux, and an extremely touchy stomach. He generally doesn't tolerate fresh veggies well, save a few, and the cancer diets push fresh vegetables like there's no tomorrow. In fact, they are the mainstay of said diets. That, right there, had been enough reason for me throw my hands in the air and declare the whole cancer diet idea too hard to pursue.

But now, we're back to the beginning. Next Friday, Flyboy will have surgery (again - number four in the past nine months) and looking at what we can do to help him from our end returns to the forefront of my thinking. I don't have any delusions that a cancer diet will "cure" him, though there are plenty of testimonies out there that claim it can. For us, what has been as hard as cancer is the impact the treatment has had on Flyboy's immune system. This week, for the first time in months, he is well - no cold, no cough, no temp. Since Thanksgiving (when he completed radiation therapy), he has caught every bug out there and has been sick almost non-stop. We are becoming more convinced that a proactive plan to help keep him healthy is where we need to be focused right now. Because if his body is generally healthy, he'll have more resources for fighting off illness and, most importantly, will feel better on a day-to-day basis.

I picked up a book in the 90s written by a couple who testify to having beaten a terminal cancer diagnosis through diet alone. This book "Healthy Habits" by David and Anne Frahm is the companion book to "The Cancer Battle Plan" which outlines the steps they took in fighting Anne's stage IV cancer. Now that I'm past the "omigosh, I'm going to lose him" stage (which is admittedly an overreaction), I'm moving to "let's focus on what our part should be". I fully recognize that his ultimate prognosis is in God's hands, but I'm ready to make some healthy changes on our end and see if it helps him feel healthier and stronger.

I'm sure there is a way to find a balance between fresh whole foods and his inability to process them well. And I'm sure with a little practice, I can figure out how to get more complex carbs into him without negatively impacting his blood sugar. While admittedly there are many things about this battle we can't control, we can control our response to it, and there's nothing like developing a plan to keep us positive and moving forward. So for now, if my plan to spend the day in the yard cleaning out beds is rained out, I'll be in the library.

Chapter 13

We're home, and happy to be here. It was a long day, but then again, any day spent at the hospital is a long day because it is the one place in the universe where time seems to stand still, or at least move slower than anywhere else.

Flyboy's surgery was successful - the tumor was biopsied and removed and will reveal its secrets next week at his follow-up appointment. The urologist believes it is malignant, but didn't think it looked like leiomyosarcoma. That is a relief. But there is some sort of weird irony to the thought that a 2nd type of cancer could be considered good news. How can one person just somehow be lucky enough to get two kinds of cancer in eight months? If you believe in fate or voodoo curses, you might be getting nervous about now. I stand on Providence, and will trust in the goodness of God no matter how many cancers show up.

Elasti-girl came from Indiana to keep us company through the day. Realizing that with her time being short before they leave for England, supporting her parents today seemed extra important to her, and we were happy to have her with us. She was indeed a blessing. The boys are back home with their daddy and we are enjoying a quiet evening at home resting in front of "Raiders of the Lost Ark", which is apparently enjoying quite the revival with the release of the latest sequel...

Today is Flyboy's follow-up appointment after his surgery last week. And because we're nothing if not proactive, I've decided upon a diet plan and we're embarking on some serious changes. The comment about being proactive is actually tongue in cheek, because I'm by nature a big-time procrastinator...just call me Procrasti-Gigi for short. After Flyboy's diagnosis last summer, I considered the likelihood of maybe doing some possible looking into some likely nutritional solutions and never quite got around to it. Now that we're faced with a second diagnosis in eight months, it seems time to go from theory to practice, from ideal to implementation.

So, after doing some reading in the past week, I'm formulating a strategy. Some endorse a vegan approach, sans dairy, sugar, and anything processed. Others seem to be more concerned about avoiding chemicals and going completely organic. I think I've struck a happy medium, because a diet you can't live with is going to make it about three days before you give it up altogether. I'm not ready to throw out every possible offending food in my pantry and freezer (call me cheap), so I'm trying to use them up as we go while introducing new things a little at a time to break us in to a new way of eating.

There are some fairly agreed upon foods that are cancer-fighting. Yesterday when I went to the grocery store, I looked for them and bought only the ones I could find in that had been grown organically: almonds, avocado, broccoli, cauliflower, tomatoes, zucchini, yellow squash, cherries, peaches, carrots, oranges, spinach, strawberries. I'm going to try to work these foods in regularly.

Second, it seems pretty universal that refined sugar feeds cancer and steering clear of it is a good idea. We are quasi-careful in this area since Flyboy is diabetic, but no where as near disciplined as he needs to be. We do use Splenda, but there is some indication in early studies that it is carcinogenic. Like we need more carcinogens in our life. There are several sweeteners on the market that are organic and natural and less processed than white sugar, which used in moderation, would be a better choice. I found Sucanat at the grocery store yesterday, which is simply cane juice (pressed from fresh sugar cane) and dried into a granulated form. It is lower in carbs than sugar and can still boast a few nutrients.

Third, I'm trying to incorporate more whole grains in our daily diet. I paid an arm and a leg for a loaf of organic sprouted wheat bread, which is supposed to be the healthiest on the market. Fortunately we don't eat much bread and will keep it in the freezer, pulling out a slice here and there. I found a box of organic quinoa, which is high in protein and fiber, and plan to try the recipe on the label for quinoa stuffed tomatoes. I'll let you know if it's any good. I also found some buckwheat groats and am anxious to try them out.

Fourth, we'll be starting with one vegetarian meal a week, and adding another here and there as we go along. Flyboy orders meat-lovers pizza, the meat-lovers breakfast at IHOP and would just as soon shoot himself right now than give up meat. A completely vegetarian diet would never fly in this house, and I'm okay with that. Meat has its own nutritional value and we're not going so radical as to give it up completely.

Fifth, we're really going "whole foods", as opposed to the overly processed choices it's easy to get sucked in by when you work all day. We're buying organic cereal (processed) and organic bread (processed) because I don't have time to make every last thing from scratch, but generally speaking, we're trying to stick to the basics, adding fresh fruits, vegetables and whole grains to our diet.

And finally, we're upping our daily water intake. We have a Pur water filter which gets rid of toxic chemicals and we're trying to choose water first before other beverages. We're cutting out the coffee and opting for herb tea. And soft drinks? You can just forget about it.

We went out for lunch after church yesterday and only wanted to snack for supper, so I got my first chance to try out some of the things I bought. I made a quick guacomole with fresh avocado, salsa and lime juice to go with the whole grain-flax baked tortilla chips and made smoothies with organic plain yogurt, a handful of frozen strawberries, a spash of organic milk and a tablespoon of Sucanat. And of course, a glass of water. Just the right amount of food, and healthy, healthy, healthy.

Chapter 14

Flyboy had his follow-up appointment today with the urologist who did his surgery last week. A true good news/bad news scenario, the day hit us both pretty hard. The good news is that it is NOT leimyosarcoma. And yet, it seems wildly ironic that having two different kinds of cancer in eight months could be considered "good" in any way, shape or form. The pathology was back and he was diagnosed with high grade papillary urothelial carcinoma, or in English, fast-growing bladder cancer. The dr. seemed a little surprised that it was "high grade", but nothing surprises me anymore.

More appointments will follow with a bladder cancer specialist and most likely another surgery to create "clean margins". There is a recommended protocol that we'll have to learn more about, which includes filling his bladder with a solution including a bacteria (called Bacillus of Calmette and Guerin Vaccine) to encourage his immune system to fight against it, and thus, fight against future cancer. It's obviously not a cure, but a strategy. The downside to this tactic is that it requires a strong immune system to start with, and Flyboy's is still pretty shot after radiation on top of the fact he is diabetic. So, further education will be in our future.

When the going gets tough, the tough go shopping. I was at work while Flyboy was at the hospital. After he called me with the update, he stopped by his favorite bicycle shop and drooled over a $4800 mountain bike. It was on sale for $3600 and he called me back to tell me he had bought it, as it's on his bucket list (just kidding!). In the meantime, back at school, our dear school nurse had stopped in to hear about the appointment, and while I had been very strong up to that point, had a hard time holding it in. I kept telling her I was fine, but after she left, I decided I really wasn't fine after all and went home. Flyboy and I went shopping :) and then out to dinner. We figured that after all the money he had saved by not really buying the mountain bike (Clintonomics at its best) we could splurge a little.

And so, we choose to treasure every single day. We choose to focus on living well, including trying to find a level of simplicity in the midst of a very complicated life. We choose to do what we can to eat well, sleep well, and play well. We choose to believe that no matter what happens God is in control and will use us to bring about His good through it.

Chapter 15

Yesterday was the appointment with Flyboy's new oncologist. It was just a consult and there was no new news, no big revelations, but for some strange reason, as I was asking a not-so-emotionally-laden question, I started to cry. I immediately apologized and Flyboy gently said, "you don't have anything to be sorry for. It's okay to cry." Which, of course, made me cry more. Upon reflection, I think it was just WHERE we were - sitting (again) in an oncologist's office, talking (again) about cancer and what to do about it. You do the drill once and you think you should be done. But no, we get to do it again.

I mentioned to the new guy that Flyboy has a tumor that has shown up on two scans that to this point no one has been concerned about ("That little thing? It's just a fatty tumor. Nothing to worry about.") Me? I think it's time to take a closer look. I jokingly told Flyboy we should shoot for the trifecta, hit the talk show circuit and make a little money for some exotic trip somewhere. The new guy burst that bubble, though, and said that for people with whatever genetic abnormality makes them cancer-prone in the first place, having multiple malignancies isn't uncommon at all. In fact, he mentioned the possibility of exploring the genetic end of this multiple cancer thing...not that it would change anything for Flyboy, but for the purpose of perhaps identifying whatever anomaly there is and checking the kids for it. Something else to think about...

So, back to yesterday...we were given three options to ponder:
1) do nothing (for now). Have another cystoscopy in 3 months and if something new is growing, do another surgery, create clean margins, test the bladder muscle tissue, and stage the cancer.
2) Do another surgery right now to create clean margins from the last surgery, taking some muscle tissue and testing it, giving them the ability to stage the cancer now.
3) Do the bacteria treatment outlined here. As mentioned earlier, the effectiveness of this treatment depends upon a healthy immune system to fight the bacteria introduced to the bladder. Not liking that idea, since Flyboy is on week three of wellness for the first time in seven months.

We're sort of waffling between door number one and door number two, but will get through the weekend first before entertaining any more discussions on the matter. Elasti-girl and family are here for the big sale tomorrow and our lives are very full of three year olds right now in the very best possible way. Dash and JackJack joined me for lunch at work today (with their mom and dad) and they are soooo much fun. Tomorrow during the sale, Gigi and Papa are taking them out for a trip to the zoo and perhaps some mini-golf. Happy, happy days...

Chapter 16

A week ago Wednesday, we visited with Flyboy's new bladder oncologist, who gave him three basic options listed here. The next day, the Incredibles arrived for an action packed couple of days including a rummage sale and a trip to the zoo. Then things were quiet again, except for the fact that I threw my back out, laid flat for three days, had an MRI and got better on my own (it figures...). We then spent my first summer Friday off getting new glasses and laying low, and Saturday working in the yard. Sunday, the marathon week began with work every day and VBS every evening through Thursday, and then we get on the plane for Charleston on Friday.

Whew.

The point being, we've obviously not had much opportunity to process the options presented at Flyboy's last appointment. Yes, I know there was time when I was down for the count, but I WAS on drugs sleeping my life away, and even when I was awake, I wasn't. So, yesterday, while we were out in the yard, we talked about it a bit, and came up with another option. If the dr. agrees, it could possibly cut out one cystoscopy, which, believe you me, is nobody's idea of a good time.

We were thinking...what if instead of having the further-exploration-create-clear-margins surgery now (option 2), he had it three months from now in place of a regularly scheduled cystoscopy? He'd be "under" and the regular cysto could wait three more months. Seems like a win-win to us, but as we're not oncologists (nor do we play one on t.v.) we'll have to wait and see what the real one says. Flyboy will call him this week.

A little more "wait and see" which in cancer-ville, is the name of the game.


Chapter 17

It's been a nice little break from thoughts of cancer, but like lunch recess, it does come to and end and you do have to go back to class.  Because Flyboy is feeling so good, and because our vacation was such a true respite, it's been really nice to live in the make-believe land of good health for awhile.  But recess is over, and we have to go back to real life.  Cancer never lets you forget for too long because during and after treatment, there are regular appointments/tests/scans to check to see if it's slowing down/going away/staying away/coming back, and in the beginning, you go through this whole routine pretty regularly.

This week, Flyboy had his first MRI on his leg since before radiation, and the day after the scan, he had an appointment with his radiation oncologist (RO).  Nobody has really explained the purpose of continued meetings with the RO (since he's no longer being radiated), yet they make more appointments anyway.  So, the RO said that although the radiologist had not yet read the MRI there is no "official" report, but at first blush, he thinks it looks pretty good.  My boss (a two-time breast cancer survivor) says cancer is the only disease where the treatment is "they cut you, they burn you, and they poison you."  After surgery and radiation, even I would have been surprised if any cancer cells could have survived that kind of eradication, and nothing surprises me these days.  We will gladly receive any and all good news.  Next on the appointment docket is his surgical oncologist (who operated on his leg) for a check-up, a review of the official MRI report, and a discussion about checking out the spot on his rib.  I plan to attend this appointment because we think it might take a double-teaming effort to get some action.  "It's just a fatty tumor" does not cut it anymore.

On the bladder front, Flyboy has an appointment with the urology oncologist to make a decision on the next course of action.  He got quite the lecture from his RO this week on the serious nature of his bladder cancer and how it is the more deadly of the two and he'd better quit messing around and do something about it.  Hmmm.  The urology oncologist didn't seem that concerned, and we specifically remember him saying that even waiting three months and taking another look-see before making a decision was an acceptable course of action. Thus far, we've seen bladder cancer as more of an annoyance than anything else.  In fact, that was the word the doctor used when he it was suspected during his first cystoscopy.  But I guess that's before the tumor was sent to pathology and before the word "high grade" came into the picture.  Now there seems to be a little greater sense of urgency.  Or so they say, because he can't get in to see the urology oncologist for three weeks.

It's so interesting how life has changed in the course of one short year.  We will soon be coming on the anniversary of Flyboy's first diagnosis.  You never think the word "cancer" will become a part of your vocabulary, you never envision having regular appointments with an oncologist (much less three oncologists), and you never stop to think about how fast your life can change.  It just does.  And you adjust.  And along with it all, the new normal includes an uncertainty that can easily jump to the level of foreboding if not held in check.  But none of us have guarantees in life.  Even if you're never sick a day in your life, you are not immune to cancer, heart disease or getting run over by a bus.  We each have to play with the cards we're dealt and remember that our sovereign God is the dealer.  And no matter how much we may feel like life is careening out of control from time to time, He's still at the helm.

Chapter 18

What a wonderful summer it has been...it has been almost three months since Flyboy's last surgery and he has been healthy and it's been a blessed relief to be free of appointments and the like.  Yesterday, Flyboy, at the order of his new primary care physician, had a clinic record THIRTEEN vials of blood taken from his arm, the tech, yammering on and on about how she had never, ever taken that much blood from anyone before.  And if that's not a reminder of where we've been and a question about where we're going, I don't know what is.  He goes in tomorrow to meet with the dr. and get the low down on all those test results.  I think I'm going to like this guy.  He seems to be as interested in Flyboy's health as he is his multiple issues.  And that is refreshing.

Today, he saw his urologic oncologist, and the news there was encouraging.  There were two options for the immediate: 1) do a cystoscopy and see if anything has grown back (this does not require going "under", but if anything is there, they can't do anything about it - this is purely a reconnaissance mission);  2) schedule a surgical procedure to go in and biopsy the spot where the tumor was removed, digging a little deeper in the bladder wall.  The dr. was completely comfortable with option #1, saying that if nothing had grown it would be best to just keep checking every couple of months until it does, and then re-biopsy.  Flyboy decided he like that choice, too, and that's what they agreed to do.  Every time they knock him out it is a risk to his heart and lungs, and no sense to do that when you can afford to wait.

Today was a pretty benign visit (pun intended), and that's just the way we like it.  I have struggled a little with some anxiety and some associated heart palpitations lately, a result, I'm sure, of this protracted venture into the unknown.  I haven't "felt" anxious, but it is showing up in my body, so Flyboy and I are trying to talk through whatever I might be holding inside with the goal of getting it out on the table instead of buried deep.  It took him about three times explaining what the dr. had said before I could see the wisdom in waiting.  I don't want to not know what is going on a millisecond longer than I have to.  After being told that the spot on his rib is too small to hit accurately with a needle to biopsy it, I struggled with having to wait to know what that one is, and now, we have to wait some more to know if there is cancer imbedded in the wall of his bladder.  I think it's fair to say that I'm having a hard time with wondering when the shoe is going to fall next.

And so we pray.  And pray some more.  Because at the end of the day, it is not my determination to be a strong soldier that gets the job done.  It is the grace of God showering on us and reminding us of what we know to be true and finding rest in it.  Having to trust God with an unknown future is really not such a bad place to be.

Chapter 19

God only knows that since this exact time last year, when Flyboy was about to go in for  surgery on his leg following the removal of a sarcoma, doctor visits have been hard and have brought more bad news than good.  Since the start of all this, he has had surgery to remove the lump (which turned out to be cancer), surgery to make sure they got it all, surgery to remove a monster sized hematoma, 35 radiation treatments, and surgery to remove a tumor in his bladder.  As if one cancer wasn't enough, he was blessed with two.  His radiation oncologist scared the bejeebers out of him with a downright scolding for not having begun therapy on his bladder right after the resection.  We had been under the impression that it wouldn't hurt to wait a couple of months, take another look-see, remove any new growth and THEN reconsider the treatment.  But after that conversation, we were really beginning to wonder if waiting had been a mistake.

Until today.

Today was Flyboy's three month check-up and the cystoscopy revealed that NO new growth, yes, that's right, NO new growth was evident in his bladder.  This is certain cause for celebration, because the prescribed therapy was of great concern to us considering his compromised immune system.  His oncologist does not feel that the treatment is necessary at this point, and they'll see him again in three months.

Whew.

<em>Thank you, God Most High, for blessing us with this good news today.  We have purposed in our hearts to trust You no matter what and to except whatever You choose to give us.  Today, we are so very thankful for a reprieve and we thank You for holding us in the palm of Your hand.</em>

Chapter 20

It's that time again - every three months Flyboy goes in for a cystoscopy, a CT, an MRI and more...  ahh, the joys of cancer.  Just when you hope you're done, it's time to go in and be poked, prodded, and crammed into a little tube all over again.

Flyboy had good reports the last time around and we're rather getting used to the words "cancer-free". Those are very nice words and we like them very much.  This round of tests will include an extra MRI,though, because there is one more spot of interest to be investigated.  Nothing like a little drama around the holidays to keep things exciting, that's what I always say.

All kidding aside, there is no better place to be than resting in the arms of God.  He knows all, sees all, and has it all under control.There is something comforting in knowing that no matter what happens, God will use it for good.  This brings purpose and hope to the hard things we have to go through.  And this is what we cling to at times like this.

And, on top of that, we are reminded that many others have had to endure far worse than us.  What's two cancers in a year?  We still have each other.  We have children who are following God.  Our married children chose well.  We have amazing grandchildren.  We are blessed in every way imaginable.  We have everything we need and everything we want.  We lack for nothing.  Not everyone can say that.  And to top it all off?  We have a promised eternity in heaven, where we'll look back on this itty bitty sliver of time and marvel that everything we believed in was true, only more beautiful than we could have possibly imagined.

I'm reminded again of the clarity cancer has brought.  The little things that bothered us about each other are no longer important.  Being "right" has lost its sense of urgency.  We don't take a single day for granted anymore but are thankful for each and every one.  We are living the dream, and enjoying each other's company more and more.

And so we wait....again.  His tests are between now and the end of the month and then the appointment to review all the results is after the first of the year.  Waiting doesn't freak me out anymore.  It's really okay.  It's just a part of the process and I think I'm finally starting to get it.  For the longest time, I found comfort in what I believe, and then I realized that the greater comfort is found in the ONE I believe in.  I can be comforted by the facts for just only so long.  The comfort of God is not just a head thing, but a heart thing.  He reaches down to the depths of me and assures me that He hasn't left.  He's still here, still in charge, still loving me.

Chapter 21

I've been just a touch surly this week, and tonight at worship rehearsal it all started to make sense.  We were singing two songs, back to back.  The first one, "You Never Let Go" by Matt Redman, has these words:

<em>Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth
</em>
Then, the second one, "Blessed Be Your Name", interestingly enough also by Matt Redman, has these words:

<em>Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

I found myself thinking about Flyboy's upcoming appointment on Friday, where he will learn the results of his latest rounds of scans. During this first year after treatment, he is scanned 3-4 times a year to see if any cancer is growing back in his leg or popping up somewhere else. Leiomyosarcoma is a rare smooth muscle cancer, and while it first showed up in his leg, it could show up anywhere. We are filled with smooth muscle tissue, including all our internal organs. Last month, a routine cystoscopy showed his bladder is still clear of cancer, remarkable in and of itself as his bladder cancer was a "high grade" (or fast growing) variety. That was great news. Of his two cancers, this is the one they expect will grow back. And it hasn't.

I don't know why, but waiting for this appointment, I'm a little rattled. You'd think after last month's good report I'd be filled with happy thoughts. If he was feeling like a million bucks, I think I'd be confident that everything is just fine and could shush the little voice in my head. But he has never ever felt "good" since treatment, tiring easily, having to ever readjust to whatever his new normal looks like. It has been a hard couple of years, and times like this remind me of that fact. Everything I know in my head about "all things work together for good" and "with God all things are possible" is put to the test in my heart. I know what I know and I do believe, but this week, I must confess to being a little afraid.

And it took these songs to make me realize it. At rehearsal I jokingly remarked, "Flyboy has appointments on Friday. I certainly hope I don't have to sing these words on Sunday like I mean them." I was singing with good friends and they knew I was just kidding and didn't overreact, but even as I said it, I realized there was probably more truth there than I cared to admit in a more serious moment.

So, here's to hoping and praying that I can sing these words with joy on Sunday, no matter what the outcome of Friday's appointment.


Flyboy - A Cancer Story, Chapter 23

My boss is a two-time breast cancer survivor.  She recently celebrated the 10-year anniversary of her second diagnosis.  She still goes back for periodic check-ups, and continues a pro-active chemotherapy regimen, administered several times a year, a pellet injected into her belly.  She is one strong woman, and even though this many years have passed, she still has to face periodic check-ups, scans, and blood work.  It is what being a cancer survivor is all about.  It's not like the flu, where you can get over it and forget about it.  You are periodically reminded of the whole thing when they go back to see if it has reared its ugly head again.  It's like you can never really get far enough away from it to put it in the past.

Especially in the early years.  We're coming up on Flyboy's one year anniversary of his bladder cancer diagnosis.  And today is his cystoscopy, which by the way is several months late, thanks to his bout with CMV.  It is the oncologist's opportunity to take a look-see inside the bladder to determine if the cancer has started growing back.  They fully expect that it will.  It's more a matter of when.  He is barely recovered from his latest illness and is finally starting to feel human again.  In fact, we went for a two mile walk on the bike path near our home yesterday afternoon.  It was glorious and sunny and beautiful and crisp and fresh and reminded us how good it is to be alive and together.

I certainly don't want to turn into a fatalist, but the past couple of years have been anything but easy.  I find myself on this day looking in from the outside, not wanting to fully participate in our own story, but rather observe from a safer place.  I don't want to get a phone call at work telling me it's back, and I don't want to spend the day waiting for it.  I want to exercise the faith I claim, but if I'm honest with myself and with God, I have to admit that I'm struggling a bit.  I just want life to be normal, where you get up in the morning and go to work and come home, fix supper, do what needs to be done, go to bed, and lather, rinse, repeat.  I want to look forward to many more years of normal life.  I want to enjoy seeing new thing and watching our grandchildren grow up TOGETHER.

I am fully aware that we don't always get what we want.  And I am fully aware that today could just as easily reveal a cancer-free bladder.  It's that we, as a couple who has survived cancer (not once, but twice) get to go back to this place of waiting and not knowing every couple of months, and in fact, though he may get a clean report, it guarantees nothing for the future.  Which, I suppose, is no different that anyone else on the planet who gets up every morning not knowing if this day is their last. None of us are promised anything in this life.  I think that cancer is just more in your face.  Constantly looking for the little monster reminds you over and over that his return is not only possible but somewhat expected.

And so, here we are again.

Monday Update...
Bladder Oncology Appointment: $2500
A Clean Report: PRICELESS

<em>To be continued...</em>