2 - sided Blog

So, first I will update everyone.

We met with the oncologist yesterday.  I also had blood work done.  I am tired of blood work for two reasons: one, they stick you with a needle (Sorry Sweeney...  )  and two, it has yet to tell us anything as far as I understand it.  

2 Rounds of Chemotherapy, beginning this Monday (June 1st).  14 Times in the hospital - two intense weeks (this coming week, and then again in four weeks), and four non-intense weeks where I only go in once/week for about two hours.  The kind of Chemo I will be receiving is BEP, just if you feel like looking it up.  I'm not sure if that makes sense (Somebody make my wife blog...).  This next week I will be up there for 8-9 hours, M-F.  The two weeks after that it is just one day/week for two hours.  Then we start over again on June 21st: intense week, followed by two non-intense weeks.

The reason we are getting Chemo is that my cancer is a germ-cell, and while they will probably be unable to locate it in my body (that scan is tomorrow...  damn Contrast tastes like REALLY crappy Sunny Delight) after the surgery, because of the amount they found in the surgery it is nationally recommended that I receive some Chemo.  If the cancer were to come back I would have to have at least 3 rounds (9 weeks, instead of 6), so, we're going to reduce to almost nothing the chance it will come back.  This is one of the types of cancer that, once you know what it is, you know how to kill it.  We tried surgery, and it "worked", but now we need to make sure it won't come back.  

I will lose my hair (apparently some people don't, but the "b" makes it very likely).  I will probably feel lethargic and relatively nauseous.  I was THRILLED that I am not only allowed, but supposed to exercise - so I'm hoping to play ball on Monday night.  I will be next to worthless from beyond the arc but am still excited.  The fellow-Doctor said not to play hockey, but b-ball is okay!

The oncologist asked me (with Rachel in the room) to not impregnate "anyone" while undergoing Chemo.  It was a mixture of funny and awkward!

Part two of Blog.  This week two friends emailed and said that email (and the blog) are unacceptable to them as friends.  The point was: we need to hear your voice and talk to you - even if it is just for five minutes.  

I know that we have shut out a number of people - family included to some degree.  I want to ask your forgiveness if we have hurt you.  Rachel and I don't claim to know how to walk through this, and we're just taking steps.  I'm not necessarily apologizing, because I know all of you want us to be healthy.  At the same time, if you're in this boat - please call.  Seriously, it was funny how much it meant to me for people to say that - even as I thought one of them was somewhat off base in their request.  It means a lot, I have been in your shoes, etc.  So, if we have hurt you and you want to talk with one of us, go ahead and give us a call or tell us in email you would really like to talk (definitely have two family members that left messages last week) and we'll make time.  

Next week will begin some new craziness, but we're excited that in 7 weeks we will (most likely, roughly 1/2 of 1% chance of recurrence, which we would then kill) be cancer free.  

As always, ask questions, comment about whatever...  

My friend Tom

Sometimes I look back on times in my life and wonder if they are more or less important that other times. I was in a fraternity in college - Sigma Phi Epsilon. One of my pledge brothers, Robert Thomas Gunning the III (I will explain later - if you want - why I know all of their middle names), just sent me two photos that he framed. I took them our freshman year of college - one of our house when it was snowing and the lights were blurry in the snow, and one of the Columns on the Univ. of Missouri's Red Campus. This is not my pic - mine is better, it is at a fun angle, next time you're at my house I'll show it to you (with the picture of a snowy 405 S. Kentucky).

All this to say it has been a nice week. Saturday was good. I feel progressively better. I am cheating more and more in the amount I pick up my beautiful daughters.

We have realized there is some mystique with Chemotherapy that will go away when we simply do it. I talked at length with an older friend who went through it a few years ago. Meetings and appointments begin on Thursday, and continue until Chemo starts on June 1st. I hope you're well and also had a good weekend and Lord's Day. Thank you for the cigars (5 and counting - thanks Zach, Walker, and Robert), the phone calls, the emails, the prayers, the prayer emails, the food (non stop for two weeks... we are still eating it), and for being in our lives before this happened - so that we could more easily rely on you while it is happening.

Thanks.

The _______________ of Strangers

So, I was in Clayton today - which is a different part of STL, but where I meet with some guys to have coffee every couple of weeks. After studying for awhile I wandered into downtown Clayton in search of lunch. I found a Gellateria (sp?), and thought, "There's a snowballs chance in %^&* and I'll take it..." Meaning: I knew I couldn't have one, but I thought I would ask. I think I blogged about the diet, if not we can discuss it later. Well the short of it is that I could have had some kind of ice with raspberry, and the long of it is that I ended up having to tell the lady I have cancer. Her Fiance is a "T. Cancer survivor". I now know 3 in STL. Statistically that means I know 22-25% of the STL Metro Population who has had/has T. Cancer. She was also very nice. I think it is easier for strangers to know what to say.

When ordering my sandwich about 4 doors down the guy basically asked why I was being so careful, so I told him. He kept calling me sir, but other than that I really appreciated his sentiments.

I really don't have too much to complain about in regards to people saying dumb stuff or weird stuff, but it struck me as funny how relatively easy it was for strangers to just say they were sorry. I'll probably figure out what I think people should REALLY say in 10 years when I'm done thinking about it, but Mom says it is, "I'm so sorry for your loss." Of course, Mom hasn't re-exegeted my scenario. The other funny thing was that the Sandwich guy remarked that I seemed in good spirits. That is my dad's bottom line; the somewhat innocuous, "But, he seemed in good spirits..." I feel like it means, coloquially, "His life sucks, but he seems okay... " Or, "Such is life, but he has moved on well..." Never mind.

This is a good week. As soon as I finish writing this I will be 80% done with this Semester and 75% done with Finals. And Rachel swore I could see Star Trek after I finish... So, I've got that going for me. Which is nice. Hope you're having a pleasant Tuesday.

Time

It is interesting what time does.

I think we all simply feel better today.

We went on a walk yesterday, something clicked internally and I could start taking deep breaths at about 8 PM last night, and this morning I woke up with my pain almost totally gone and the tightness of abdomen surgery down at least 50%. This is what we were told would happen, but it was still nice. Mom left me a nice beverage that I tried - it was delicious, thanks mom.

We won't know how much Chemo until we get the test results back (tests are in late May), but we know it is out there and the reality is just easier to take after a few days I guess.

A good friend wrote and said he hoped I was not losing hope in my faith or in my healing. I am not. We are not. I firmly believe the Bible doesn't offer me a straight-forward explanation/purpose/meaning to sickness. After that I am filled with hope for what this will accomplish in our lives as we move through it. And, I am still fully convinced that by the end of the summer I will be cancer free.

Mom and I were getting a little edgey with one another and she kept offering explanations. I then offered that we might both be put off by me having cancer. So, she said I should stop having it. And I plan to, it will just be a few weeks. In the meantime we will keep loving our girls, I will continue in Seminary (they have been great by the way... literally offering me help in any number of ways and not waiting for me to ask or remind them I am sick), etc.

Caroline has about 20 stickers stuck to her self right now (bandaids), and all of the girls are in the front yard while i "study" (or blog). Hope you also have a nice Saturday, thanks again for the support, thoughts, prayers, etc.

June Plans

So, I was talking with a friend and mom was here, and I mentioned the probability that I would have chemo... Mom corrected me, "You're having chemo."

She is right. At the point of conversation we were waiting on some information - which we now have - but she was right anyway.

I can get technical if you want (and you don't, because I always confuse folks), and I can explain the movement of the disease from the beginning (February really... although no real diagnosis until April). But, what you want to know is, "What now?" Well, because of the amount of cancer they found they want to do Chemotherapy beginning June 1st. Tests will be run between now and then, we still covet your prayers between now and then, but that is the bottom line. After June we will know how much, but the therapy will begin then.

So many of you have offered help. Please hear me that we will ask, and that we appreciate so much that you have offered. It is hard to get more babysitters for the girls because they like babysitters even less (which is amazing) these days, and in many ways we have to figure out ways for people to actually help. So, thank you. What we hear when you offer help is, "We love you and want you to know it." Well, we do! I don't think we could be much more encouraged by all of the food, notes, phone calls, etc.

In other news, Caroline has packed all of her underwear into an easter basket. Julia couldn't be more pleasant. I (Matt) kicked the pain pills today because the side effects were more annoying than the pain. I start finals tomorrow, and could use prayer that I will stop doing the math on potential flunking (0% chance in all classes) and actually study!

How are we processing all of this? I don't know that we know any better than you do how to process it. The cancer is still 99% treatable/curable/killable - and Chemotherapy was always the most reliable way you just try to do the surgery before it becomes necessary. Only God (seriously... and we have some good doctors) knows when we would have had to have had surgery to accomplish that (what a great sentence!). Thanks again for all your thoughts, you can still ask questions, we appreciate the continued prayers, and we will ask for help when we realize what we need it with!

Mad Men

So, I am home (Matt writing) and I am getting better every few hours, but am still amazed that the most uncomfortable part is probably the gas in my shoulders. As Rachel said the surgery came and went, and we got bad news again. Everyone was sad yesterday except Julia - nothing really makes her sad except being hit in the head with sticks by her sister. Rachel and I have talked about it several times already because chances were pretty high that this is what would happen (that we would do surgery and still have to have Chemo), but when you're given an inch of hope you hold it I guess.

Now, as I re-read the last paragraph I don't want to surprise anyone. The news is simply that the tumors had grown, and so the doctor cleaned out the left side lymph nodes which are close to my kidney. There is still a chance he got all of the cancer, but there are basic guidelines of how to treat cancer, and I had enough that it is unlikely that we won't have to do chemo in a few weeks. I know that I don't communicate as well as Rachel. Bottom Line: cancer was still bigger when they took it out (relative to CT scan), so I will probably have a few rounds of Chemo this summer.

I manipulated my way home before noon (they made a list of things that had to happen, and I made them happen), the girls are doing well. Caroline just came in from playing in the yard and is refusing to watch the new movies grandma brought her - she wants Cars. Julia is happy, she has added "mama" and "Yum yum" to her spoken vocabulary. I'm trying to study, and relax my lower back.

Tonight, thanks to Casey's IPOD, we will watch the second season of Mad Men (some of it anyway). Thank you again for the food, thoughts, prayers, anger on our behalf, and tears. We will keep you posted when we meet with our oncologist, it will be a few weeks before the pathology report comes back and they won't want to start the Chemo until it has been at least 3-4 weeks since surgery.

update

i spoke with dr. figenshau (surgeon) a bit ago... matt is out of surgery & his vitals are all good.  but the surgery did not give us great news.  the lymph nodes that were enlarged have increased in size somewhat significantly.  the biopsy showed active germ cells, which is the same type of cancer found in his testicle.  so all the lymph tissue in that section was removed, but he did not want to risk damage to nerves & blood vessels by moving further.  there is still a chance they removed the majority of the cancerous cells, but matt will have to have some chemo to eliminate it completely.  while we kind of expected this, we were really hoping that it wouldn't be necessary.  how much chemo, when, etc will be determined later.

i'll be going up to see him in recovery soon- and if we get more info we'll let you know.  i'm pretty sad about the outcome, but i'm really relieved that the surgery is over.  i'm sure chemo will suck big time, but my biggest fears were for the surgery.  

thanks for your prayers- please continue.

so early

4:30 a.m. is SO EARLY!  that's when i got up to nurse julia & get ready to leave for the hospital with matt.  he really wanted coffee- but no food or drink after midnight for him!  i tried to be nice & not eat or drink in front of him- see what a good wife i am? : )

check-in is long & tedious because they have to be so thorough about every little detail- repeat your name, your SSN, your doctor, your procedure, have you eaten anything, no really have you eaten anything... but eventually they got it all covered & everyone was satisfied that they were ready.  they took him back at 7:30, and i just got confirmation that they have begun the surgery at 8:15.

holy cow- that's a little unsettling.  they explained the procedure in more detail than i really wanted, so now i know what they are doing to "begin the surgery."  

crap.

to be honest, i'm pretty scared.  i'm the youngest person in this waiting area by at least 15 years if not more... i feel like we shouldn't be here.  it seems "bad" to talk about, but i've been feeling afraid that matt will die.  i suppose that's natural in any case, and we have experienced a lot of death already the last year or so.  i have every reason to trust that he will be fine (statistics, reliable doctors, hope in Christ), but some emotions just won't give in to rationality.  i'm okay- just dealing with it all.  

a good friend (who is very far away!) sent me a message and said that she is confident that God is meeting us in this... and He is. i have said before that God is not changing our circumstances, but that I trust that He is no less good and no less loving in our lives than during the happiest moments.  He is still present with me, and His presence is stronger than my fear.  i don't know how to explain it better, but if you want to understand better i will try.  maybe over a cup of coffee in a few weeks when this is over...

and the family next to me was just discussing anal probes... awesome.

thanks for your prayers- i'll update again when they give me more information at 2 hours (10:15ish).

-rachel

10:16 PM

This is one of the cigars Robert dropped off. I doubt he reads the blog. Someone tell him it was a great cigar, even with the Izze (yes, Robert with the Dread-locks). Walker also sent cigars, and Holly wrote a note since she isn't old enough to buy cigars. If i wrote all of the names of those who have called and written, emailed and facebooked... Well, I couldn't, but it would be a long list. Thank you.

Tomorrow's surgery is at about 7:30, and I just finished my 3 final projects for school. None are amazing, but they are all at least B level. Maybe C, but my grades are fine. We will be leaving our house around 5, so in addition to me you can pray for our girls and for grandma Ginny who will be unapologetically showing videos and spooning out yogurt all morning at least.

And, let's hear it for Merecats - which Caroline and Grandpa Robbie love.

Thanks again everyone.

Good Shabbos

A good friend was in town today, and we had been goofing off, had lunch with all of my girls, his fiance', etc.

Last night we went and saw Wolverine. I must be growing up since I didn't go at Midnight the night before.

Anyway, at lunch I could sense his anxiety about my cancer and I asked if we needed to talk about it. So we did. At one point he said, "So... Is everything just different now?" And, I think it is. My worldview tells me that while purpose in a pure sense may not ever be revealed, God will use this in us to grow us. I don't think the Bible says I will be a perfect anything, or even necessarily a better anything. But, I do think the bible gives me ever reason to hope that nothing is purposeless, and that I can be fully confident that my cancer will change us for the better. I know that is abstract at best, but I appreciate that it is not trite. I keep writing more and then deleting it about the purpose of this. how about I just get to you about that one!

I alternate between saying "we" and "me" because it seems like it is happening to me, but other than being anesthetized on Monday - all of this is happening to Rachel as certainly as it is happening to me. Many of you have asked if we have told Caroline. I do not think we have "told" her, but she knows that I am sick. She knows that I go see doctors a lot lately. The other day she asked Rachel and I both how our visit to the doctors went. We thought about her context, and then told her it was good, I didn't get any shots, and they did not give me a sucker.

It was hard to write that. I have the most beautiful, amazing daughters ever - I hope if you have not met them you get to.

We are hopeful - in the Lord first and foremost. Simply in Him, and His provision - whatever that may mean. We are also thoughtful and believe we are making the right decision for surgery, and chemo if necessary after a few months of surveillance. We are excited that this surgery gives us the best hope for full recovery without chemotherapy.

It takes a good bit of energy for Rachel to write, so I'm trying to remember to keep people updated. Please ask more questions and feel free to comment.

Today was a good rest day. We played a lot this morning. I made Banana Muffins and let Rachel sleep in (the least I could after she stayed up until 11:30 watching Wolverine at the Moolah). We had lunch with great and old friends, and now I am finishing my schoolwork so that I can study for finals after the surgery. Tomorrow we are excited about corporate worship with our church family. They are like the rest of our family - loving, imperfect, but would lay down in traffic for us if we asked (loose Good Will Hunting Quote).

Surgery is Monday morning for those of you thinking and praying for us; 7:30 at Barnes Jewish. it is laparscopic - so not very invasive, but it is still our second surgery in about 6 weeks. It should take about 4 hours because they do some biopsying while I am on the table. The surgery is to remove two inflamed Lymph Nodes (assumedly cancerous) in my abdomen. I will stay the night, and should be up on Tuesday andable to drive by next Monday (for Finals - which I will happily make C's on!). The Seminary was great about offering me extensions - even encouraging it. But, I would prefer to finish, knowing I have almost no chance of failing any class. We are excited to move to the next stage, to be finished with this stage, and to fill you in on the details. Thank you again for your affection, prayers, phone calls and emails. We don't get texts anymore - but thanks for them too!