Happy Birthday Joey! Six years ago you made your mark on the world and the place will never be the same.

Tuesday when I got home with the kids Joe was on the phone with staff from Clinical Research at Cleveland Clinic. Plans are for us to go out the afternoon of May 26 for tests (CAT scan, blood work ect). The next day we will meet with the Clinical Research staff for what I hope is a schedule on drugs.

This will be Memorial Day weekend and our 12 year wedding anniversary weekend. Oh what fun!

Thanks to our friends M&C who bravely took our kids out for a while Friday. They took our 3 and their 2 kids for pizza and bowling. I'm told M was thrilled to have new shoes!

Happy Easter!

You will not believe this!! Joe was sleeping on the couch the night the Easter Bunny came into the living room and hid the baskets for the kids! Joe did not wake up but was a little creeped out he was in the room with the Easter Bunny.

Sunday was a big day. We all went to Easter Mass Sunday morning after the kids ate a sugar breakfast of Easter candy and waffles with M&Ms. Joe's parents joined us at Mass to help with the kids and I was thankful to actually hear part of Mass instead of drawing robots at the request of a certain 2 year old. Once we got home Joe was ready for a nap so the kids and I went to see HOP. The sign over the pictures on the wall is a Thank You note E made for the Easter Bunny.

Monday was another big day for Joe. Our friend Heather (who should start a personal shopper business) took Joe shopping for a suit. The last suit he had was 1999- 12 years and -50 pounds ago. He found what size he needs but were not able to find what he wanted. They were limited to just Elder Beerman in BG. Joe and I will look again when he is up for longer drives.

The staples came out today and we did not have to travel to the Cleveland Clinic! The urologist who first saw Joe at Wood County Hospital was able to take them out. They cleaned the area with some betadine swabs then went after all the staples. The tool crimps the staples as they are removed- not what I remember when my Mom had her back surgery in the mid 90s. It was not as painful as Joe feared. They cleaned him with some betadine swabs again, applied some steri strips and a gauze pad over the small area that seeps from time to time and we were on our way.

Joe has been able to reduce his pain pills and even take care of himself during the day (I'm still working shorter days). He even fixed his own lunch (and left the dishes for me to do!). We have not heard from the drug trail people- they are suppose to contact us. I did speak with Dr. K's PA last week and he was going to check that process. The drugs (as much as I know now) will target the renal cell carcinoma cells that may still be else where in the body. While all 10 lymph nodes removed were all clean there is still a chance some little part is trying to set up home someplace else in the body (but we are thinking positive!)

Until Joe's driving restriction is lifted (2 more weeks) he will not be doing much other than watching baseball, watching movies and reading books for his National History Day Normandy Institute. On a good day he might walk up and down the drive way some.

No easy way to say this so just going to say it. We have not used the word "cancer" when talking to the kids about this and ask others to respect that. We have just told them there was something "icky in Daddy and the doctor had to take it out". M knows that Daddy has a boo boo and he needs to be careful when sitting with him. I even feel weird using the word "cancer" because we did not know it was renal cell carcinoma until it was all removed during surgery. Yes we knew it was possible but I'm thinking positive. I see someone who has cancer as one who has to endure chemo and radiation and all the negative side effects of it. I think we got off with much less than that. I hope to just have to deal with be married to someone with one kidney and the extra caution that is with it.

Thursday J2 turns 6! SIX! VI Hard to believe it has been 6 years since our bathroom became a birthing room. Those new to our stories just know that J2 was born at home in our bathroom. I would need a whole blog to tell that story.

Sunday E has her First Communion. We are looking forward to her special day.

I counted 41 staples today. I was always guessing 20 so it was surprising there were so many.

Posted by Joe on his FB 4/19/11

I was waiting for him to say things in his own words because he is so good at it.-Katie

We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time.

--T.S. Eliot, Little Gidding

Overwhelming. If there’s one word I keep coming back to the journey of the past three weeks, it is ‘overwhelming.’ I can’t describe a lot of what has happened physically, psychologically, and spiritually over the past few weeks without using that word.

The lab results confirmed what was suspected in the CT scans; that the football-sized mass of starboard kidney, tumor, lymph nodes, adrenal gland, and fatty tissue taken out of my abdomen was, in fact, cancerous. You hold out hope right until the word comes out of his mouth – I can’t even explain it. Inside, I knew it was – hell, they told me it almost certainly was! It was certainly no surprise, in the technical sense of the word. But for the word ‘malignant’ to actually be used – well, it’s overwhelming. Even when you know it’s probably not that bad.

The lab results also showed that the cancer had NOT spread to the adrenal, to the fatty tissue, to any of the surrounding lymph nodes. These are all, to put it mildly, good things. Overwhelming things, when one thinks about what it would have meant if these neighboring tissues had, indeed, been invaded by the carcinoma. And it’s overwhelming to think of what it could mean some day; microscopic bits of cancer may still be floating around my body. And some day, they may take root in another dark little corner of my abdomen. I’ll never feel it if it happens; spinning magnets will find it in a picture, and we’ll figure out the next course of action. Absolutely overwhelming.

By Thursday, I was overwhelmed in another way, too. I had an absolutely amazing care staff at Cleveland Clinic; in particular, a nurse named Caryn. I am absolutely convinced that Caryn had more than a little of Nana’s spirit in her. On Wednesday morning, I was writhing in pain. She asked where I would rate my pain on a scale of 1-10. I told her seven. Bullshit, she said, your face says nine or 10. Where some of the nurses had taken care of me, Caryn took command of my care. She got my painkillers changed, and life in hospital got just a little more tolerable. She brought me grape popsicles, and made me smile.

That Friday, I dipped again – an overwhelming crush of being weaned off of the painkillers, and a complete lack of sleep. And the overwhelming support of friends and family made it all right again. More on that in a minute. But there was light at the end of the tunnel – it was decided that Saturday would be my release day, and I was most assuredly done with being in the hospital. Saturday, Katie and my mom and dad came back, and I was sprung from the Clinic a little after lunch, slept most of the way home, and frankly, I remember little else from the massive doses of painkiller they threw down the hatch before the long drive home.

Overwhelming, too, has been a very real spiritual presence in my darkest moments. Father Mark, and our friend Dee, describe it as taking in a big breath of God. My friend Kate describes it as breathing in a purifying light, and exhaling darkness. Again, it’s difficult for me put into words, but I know it and feel it when it happens. Father Mark encouraged me to think of it this way: If we accept that there are only two equal and opposite emotions, love and fear; and then accept that God is love; then the only prayer that makes sense when we feel fear is a prayer for the presence of God, who is love. Whether it’s God, the human spirit, or however you choose to conceptualize it, it’s been a very real presence for me in a manner I can only describe as, well, overwhelming.

Overwhelming in ways I can’t describe has been the depth I have found in relationships with my family throughout the past three weeks. Intangible things, relationships are, and in our relationships is that common thread of love. The past three weeks have taught me just how deep my family’s love for me is. My cousin Marybeth visited me every single day, even when I didn’t know she was there sometimes! My mom and dad have just been there every step of the way, with support and encouragement, with laughs, and with score updates when I couldn’t get the Indians games at the hospital. My sister, I simply don’t know if I’ll ever be able to repay. She was at my side every day, and was a pitbull to chase off the legion of housekeepers, student nurses, and nurses’ aides when I had a meltdown. She was there for everything. And reconnecting in a deeper way with my friend, and my brother (and her husband), Aaron, is a gift indescribable. But most importantly, I learned something about marriage over the past three weeks. Just as the words ‘support and defend’ took on a new and deeper meaning for people in the military just after 9/11, so too did the ‘sickness and health’ part of our marriage vows since this all began. Katie has been stronger than I could ever imagine being if our roles were reversed; she seems to be in 100 places at once in managing the logistics of child movement, maintaining her career, and taking care of me until I’m mostly vertical again. I always felt like I couldn’t love her more after our Encounter retreat three years ago this month, but I was wrong. My love and admiration for her could not be stronger than they are right now.

Most overwhelming, though, has been the love and support from all of you. Your comments on FB and the blog, your phone calls, your letters, have buoyed my spirits when they needed buoying. Those of you who are cancer survivors, you simply can’t know how much your counsel and courage has meant to me. Those who visited me in the hospital – Kennedy, Tom, Brandon, Ross, Janet, Uncle Bob, Ginster, Rick, Bets, Danny, Christine, Erik, Kim, Jessie – I may not remember a lot of details from when you came, but I remember that you came, and that meant everything as my mind wandered into dark little corners. Since I’ve been home, the companionship during the day has made life not just physically easier, but psychologically easier as I’ve had someone to talk with every day, and keep my spirits high. I’ve had more laughs than one should have with Peters and Randy the past two days (Randy, my side still hurts from the flying phone incident), and I have no doubt that’ll continue with Aunt Eileen, Mike, and Lisa the rest of the week. The meals you all have made; the contributions my coworkers made in the form of gas cards that allowed Katie and Mom and Dad to make the trips out to Cleveland in the face of high gas prices; and my legion of prayer partners – well, I think the Dropkick Murphys may have put it best, “thethoughts and prayers of a million strong might keep this fool from dying.”

So has this been overwhelming? You’d better believe it. As Kate W. said the day we went out for the consult, ‘This is going to change your life.” I am just smart enough to know that I’m just seeing the beginning of those changes. There are so many things I hope never to take for granted again, and all of your love and friendship is damn near the top of that list. My friend Kristin always had a signature line from Walt Whitman, “I no doubt deserved my enemies, but I don’t believe I deserved my friends.” I feel that saying in my bones tonight.

I hopefully fixed the issue some were having with comments.

Catheter removed- check

Walking the halls- check

Pain pump removed- check

Eating- check

One gnarly scar- check

Thursday

At 1pm Thursday my schedule opened up so I took off for Cleveland. I did not tell Joe I was coming because I knew he would say no. Kathy has been with him most of the time and she knew I was coming. He was sleeping when I got there so I visited with Christine, Joe's cousin's wife, and Kathy. Friends Kim and Eric stopped by. Many stories were shared from Joe's BG News and Ft. Wayne Journal Gazette days.

Earlier in the day the bandages were removed from Joe's abdomen. Dr. W removed the bandages by ripping them off all at once causing Joe much pain. He also had made the 5 walks in the hall requested by the staff and trips to the bathroom.

The kids and I were planning to go out tonight but since it looks like Joe will be discharged Saturday we are going to wait. I'll make the trip on Saturday to bring him home. The kids will be disappointed but it will be better if it is just Joe and I. Three kids in the van for 2.5 hours when one has not had major surgery is hard so for the safety of all it will just be Joe and I.

No concrete pathology reports from Dr. K yet but someone from his staff checked on Joe and used phrases like "got it all" and "looks good". I hope to get firm results today.

I just spoke with Joe (I'm back in BG). They changed his pain meds from fentanyl to dilaudid. He is a little nauseous- could be from the med change. He has not had food yet.

He sat in the chair for 30 minutes and took a walk from his bed to the door of his room. Running a 5K again is not far off.

We did get to talk with Dr. K yesterday. We asked how long the tumor was there and he said most likely years. Since Joe never had a reason for a CT scan it was never found. It could have continued until there were symptoms. It was expected that there has been blood in the urine for sometime but was over looked or just not tested for the times he had urine tests for insurance or work.
Pathology reports will dictate the next steps but there is still a chance it is benign. If not this type of cancer does not respond to Chemo or radiation but there are targeted drug therapies. A PET Scan would also not show if it is elsewhere in the body. Dr. K said if anything part of it could have come off in the vena cava and traveled to the lung like an embolism but chest x-rays does not show that as a concern.
He is not on food yet but thinks they are going to start him on tea and broth today. They also want to control the pain more because while he sleeps through the pain, when he wakes (and not pushing the pain pump button when he sleeps) it is hard to get the pain back under control when he wakes.
Other than the pain, Joe's other complaint is he can't watch Cleveland Indians games because the cable does not have Fox Sports Ohio. He thinks it is outrages that even though the Cleveland Clinic sponsors the Indians broadcast the hospital cables does not show it. I set up his iPhone with a stream of WTAM 1100 in hopes they will stream the game audio. If not he can enjoy all the ESPN Sports Center he wants.

Thanks for keeping us in your thoughts.

They got Joe up again yesterday afternoon. He sat in the chair for 30-40 minutes and was very sore. He was happy to get back to bed and get an extra dose of pain medication. The moving from bed to chair went better but sitting up took a lot of concentration to deal with the pain. I got back to BG about 10pm Tuesday night.

Again thanks for all the prayers.

Katie

They got Joe up and out of bed already this morning. Just to stand and sit up right in another chair. It hurt a lot and wore him out. He had a purple popsicle but no food yet other than the eucharistic minister stopping by and him taking part. He is sleeping again.

Thank you all for your continued prayers and kind thoughts.

I just saw Joe. He was aware of things around him but still groggy. Mentioned he wanted a Vernors- which is what he told me when I saw him last before surgery. He said he hurts a lot. Once he gets to his room we can see him.

Joe is out of surgery. It took just about 3 hours. All went well. The tumor was into the vena cava but was removed easily and vena cava was stitched up- no need for removal of part of the vena cava. It will take a few days to a week for pathology reports.

Thank you all for your prayers!

Joe enjoyed his magnesium citrate cocktails. We have been watching movies TNT we never would have given a second thought to. We are going to bed soon since we have to be at the hospital at 5am.

We are grateful for the prayers and the good thoughts from everyone.

Posted by Joe on his FB 4/8/11

Hi everyone,

I think this will probably be my one of my last updates until Tuesday or Wednesday, but I wanted to just put out a quick note. I want to preface this by saying that I know how religious/spiritual stuff is sometimes really awkward, and I've always tried to avoid it on FB because I don't ever want to come across as belittling someone else's belief system, or as if I have all the answers*. In fact, one of the things that has been completely overwhelming over the last week and a half has been finding the power of people of so many diverse traditions placing me in their thoughts and prayers. As Katie had put out on her FB, we've got people from dozens of different Christian denominations, Jewish friends, Muslim friends, atheist friends, secular humanist friends all exuding the same positive focus, whether you call it thoughts or prayers or something else. And that's a beautiful thing, no matter what you believe in.

So it's with a little reluctance, and with absolutely no slight intended toward our friends of other faiths that I share this story, and a request for a special prayer from those whose beliefs would allow them to do this.

I went to the National Shrine of Our Lady of Consolation in Carey, Ohio this morning to try to center myself a little bit before Monday. For those who don't know of the shrine, it's a place where miracles have happened since 1875. The lower basilica is filled with evidence of these miracles. I visited the shrine for the first time exactly 20 years ago this spring for my TEC (Teens Encounter Christ) retreat during my junior year in high school. My relationship with God changed on that retreat from something rote to something a little more adolescent, if not adult. And my experience of God there in the upper basilica was something probably a little out of the ordinary. Through my youth, I had always entertained the idea of becoming a priest. But during one night on retreat, I felt this overwhelming message come through me: You are supposed to have a family.

Time passed, and the shrine always had a place in my heart and soul. In the summer of 1997, I went to the shrine, and threw out my last full pack of cigarettes, and turned that corner (with fits and starts) of becoming a non-smoker. In the spring of 2000, Katie and I had an accident near the shrine and emerged unscathed, despite spinning a couple of 360s through two lanes of traffic. In 2007, Katie and I prayed over another situation, and emerged stronger on the other side. In 2008, we prayed at the shrine as we expected Mark's arrival. And so on, and so on. Miracles not of the Lazarus variety for us, but every time we have prayed at Carey, our petitions have been answered. Every time.

Throughout the past week, I have had a tremendous battle in my head between acceptance of God's will, no matter what it may be, and the necessity to maintain powerful positive energy. So I went to Carey today in search of God's presence, which I know is everywhere, but has always been particularly strong for us in that place. And I sort of woke up to the idea that it's OK for me to pray for recovery! And it's OK to pray for a miracle! And it's OK to pray to be cured, and it's OK to pray that I might live long enough to know my grandchildren! So I prayed for all of these things today, throughout the basilica. As I prayed at different stations around the church, I came across someone's novena note at the display of saintly relics.

Many of you have asked what you can do to help, and I have rather generically asked for prayers. I'm going to be a little more specific this time, and ask you to say a certain prayer in a certain way, and I truly believe, God put me at that place to see this note, and though I have been hesitant to ask for help, I'm asking now.

A novena is a form of prayer said over the course of nine days. This novena I found while praying near the sacred relics asks the person praying to visit church each day for nine days, and write down the following prayer, and leave a copy of the prayer in the church, and light a candle each day. The prayer reads:

"May the Sacred Heart of Jesus be praised, adored, blessed, and glorified throughout the world, now and forever. Sacred Heart of Jesus, I put my trust in Thee."

Again - and I apologize if this comes off like I'm in my classroom giving directions!

1.) Write the prayer on a piece of paper

2.) Go to church

3.) Say a prayer for complete recovery

4.) Light a candle so the prayer might continue

5.) Leave the paper with the prayer on it in the church

6.) Repeat for nine days

For those who are comfortable doing this prayer, I cannot thank you enough, because I know how difficult it is to fit one more thing into our schedules. If you would let me know who you are I want to personally thank you on the other side of this thing.

For those from other faith traditions that are not comfortable with this, I thank you for your thoughts, and prayers, and warm wishes, and positive energy just as intensely as I thank those who can perform the novena. Your prayers and thoughts mean JUST as much to me, and I am so very grateful.

Love to all,

Joe

* I am more aware than ever that this applies to politics as well. I will try really, really, really hard not to engage in political discussions on FB anymore. One of the things I find I just do not care about over the past week and a half is politics... which may not be a good thing for a social studies teacher.

Thank you all for your text, emails, phone calls with prayers, support, and offers to help. We truly feel the love of so many people.

Many of you have asked what you can do to help. On the right side of the blog you will find a place to sign up for meals. Thanks to Joe's sister Kathy for setting this up.

I also added a calendar of our schedule and when help is needed. If you can help leave a comment here or email me and I'll up date the schedule.

Posted by Joe on his FB 4/5/11

Dear friends,

I wanted to pass along an update tonight about my condition. I hope you will understand that my mind is being pulled in a million different directions; some are light, some are not. I waver back and forth after today’s news between euphoria because of the excellence of my surgeon, and fright because of the nature of this beast. So, I apologize if this is disjointed, and I also apologize to those whom I haven’t personally responded to by text, FB, or telephone. I also want to thank you ALL for your prayers and thoughts. I am telling you, I can feel them buoying me up, even when I am feeling sort of down.

This morning, Dr. Venkatesh Krishnamurthi went through my CT scan results with me, and showed me a large mass that is on my kidney, and into my vena cava. The size and the growth of it indicate that it is cancerous, but they won’t know that for sure until they yank it out and test it. Everyone’s always told me I’m ‘exceptional,’ and this is certainly no exception. Of the small population of humans who contract kidney cancer, only 5-10% develop it into the vena cava. So, I guess this is one of those times when I’d rather not be special. I’d like to think of it as having a midichlorian count even higher than Master Yoda’s, but alas, a tumor at this stage is identified as Stage III cancer.

Now, you can probably imagine the flood of emotions when someone uses the word “Stage III” to describe something within your body, and most of them ain’t good! But it’s not necessarily like that with this junk.

Dr. Krishnamurthi explained that, in a surgical procedure Monday at Cleveland Clinic, they will remove the kidney, the adrenal gland atop it, and all of the tumor mass that has grown into the vena cava. Then, the real fun begins when they sew up the vena cava (or replace a section of it, depending on how hard the tumor fights back); sew up the rest of my parts, and leave me with a scar that I think is going to look just totally badass when I run bare-chested late this summer. The surgery will take about five hours, and my recovery period will have me in the Clinic for a week, and then another three to five weeks of recovery at home.

The surgery is the solution with this form of cancer, and that means I don’t have to worry about radiation or chemo afterward. The doc uses the word CURABLE with this, and that's good enough for me. The boogeyman in the closet from here on out will be recurrence, which happens to about 40-50% of people with this sort of thing. That generally happens in the first three years after diagnosis, if it’s going to happen. I’ll be volunteering for some trials on medications designed to fight off recurrence.

I cannot even express to you the confidence I have in Dr. Krishnamurthi. He’s an Ironman triathlete, and judging by his CV, he’s about as good as they come. I enjoyed him personally, he has a great positive attitude, and I love the fact that we were able to talk running a bit!

So that’s where I’m at physically. In fact, physically there’s little difference between me today, and the way I was a week ago. I am thinking about even going to school this week to check in with my students one or two more times before I’m gone for four-to-six weeks.

To be honest, that’s the easy part (so far, which is easy to say before being chopped open!). Mentally and spiritually, I ebb and flow. As I have talked with cancer survivor friends, they say this is not unusual, but for those who haven’t been down this path, I have to tell you (even at the risk of sounding like a crazy person): I swear to you, I can feel it sometimes. I never felt it before, however long it was in my body. Keep in mind, it was found by providential accident because I was constipated last week, and I never had the slightest clue what was going on in there! But sometimes, I feel something in my side, and my brain convinces me that I can feel the tendrils of the tumor crawling up my vena cava. Talk about something to make you feel nuts.

Spiritually, this has me completely confused, and I don’t think that’s abnormal. When you quit drinking, the first thing you learn is that there are things you control, and things you don’t, and that God’s will shall be done, no matter what your plans might entail. One of the things I have loved in getting to know my Algerian and Tunisian friends is the phrase ‘insha’Allah,’ (if God wills it) tacked onto the end of any sentence that’s set in future tense, sort of like, “I’ll see you later, if God wills it.” It’s a beautiful declaration of our place in this world, and of living in the moment and accepting that the future is not guaranteed.

That’s something I am really grappling with for the first time at the life and death level. I think all of us know at a base level that we’re going to die someday, but this experience has taken in a bit further out of the abstract for me. It creates a dynamic tension in one’s soul between being a faithful servant accepting God’s will, and the absolute and necessary conviction I have that I’m going to kick this tumor’s ass and live a long life. I know what MY will is in this situation, and I am really hopeful that God’s will is the same as mine!!!!!

So I guess I’m going to leave it at that tonight. There comes a point when you’re all cancer-ed out for the day, and it’s really not very much fun to talk about. Thank you all again for your prayers, thoughts, and support. It means more than anything you can imagine.

Joe