Tuesday, July 29, 2008
Today ended better than it started
Thank you, Dan, 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. Froedert 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.
Day 6 - When worlds collide
There is something maddening about where we are in this process. We are 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 Dan 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 the entire state of Wisconsin. Pete 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. Dan knows Pete better than just about anybody, and he knows what it will take to get Pete's attention. Believe me, he go 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 Pete's breathing next to me, it's a little harder. I've hardly cried, until today...today I'm feeling rather overwhelmed on all fronts.
So...thank you for your prayers, and by the way, if you've tried to call us and wonder why our line has been disconnected, we've gone to cell phones only. Leave a comment below if you want those numbers.
We are both struggling today. Dan knows Pete better than just about anybody, and he knows what it will take to get Pete's attention. Believe me, he go 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 Pete's breathing next to me, it's a little harder. I've hardly cried, until today...today I'm feeling rather overwhelmed on all fronts.
So...thank you for your prayers, and by the way, if you've tried to call us and wonder why our line has been disconnected, we've gone to cell phones only. Leave a comment below if you want those numbers.
Sunday, July 27, 2008
Saturday, July 26, 2008 - Day 3
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.
Pete 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. Our next step is to ascertain if the oncologist seems competent with this rare cancer or if we need to look somewhere else. There is 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).
We’ve talked about a Caringbridge site, but Pete is rather disinclined, so I’ll probably continue to document here for the time being…it seems to me that someday I’ll want to look back and remember the details of what we were doing and thinking and feeling. If this thing turns into a long, drawn out affair, I’ll most like move the cancer talk to Caringbridge, but for now, I’ll stay here.
The elders anointed Pete with oil and prayed him today for the umpteenth time in the past few years (he’s lost count). I would think that after so many health problems the slope to depression could be rather slippery. Please pray with me that he will be a conduit of God’s grace throughout. So far so good.
Pete 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. Our next step is to ascertain if the oncologist seems competent with this rare cancer or if we need to look somewhere else. There is 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).
We’ve talked about a Caringbridge site, but Pete is rather disinclined, so I’ll probably continue to document here for the time being…it seems to me that someday I’ll want to look back and remember the details of what we were doing and thinking and feeling. If this thing turns into a long, drawn out affair, I’ll most like move the cancer talk to Caringbridge, but for now, I’ll stay here.
The elders anointed Pete with oil and prayed him today for the umpteenth time in the past few years (he’s lost count). I would think that after so many health problems the slope to depression could be rather slippery. Please pray with me that he will be a conduit of God’s grace throughout. So far so good.
Friday, July 25, 2008
A new reality
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. Pete 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.
Pete 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 a trip to Oscars for 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 Pete 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 Pete was special. :) There are no specialists in the entire state that deal with this cancer, and not even any in Chicago. 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 Pete 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. Pete 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.
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. Pete 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.
Pete 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 a trip to Oscars for 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 Pete 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 Pete was special. :) There are no specialists in the entire state that deal with this cancer, and not even any in Chicago. 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 Pete 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. Pete 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.
Wednesday, July 9, 2008
Crazy, crazy summer
This summer has all of the makings of a forced institutionalization before it's over. That's the kind of crazy summer it is shaping up to be. Not just one too many backyard barbeques, no, I'm talking about THAT kind of crazy...the kind where they give you drugs and put you in a room with pink painted walls (it's supposed to be soothing) and play relaxation tapes with the therapist droning on in a monotone voice about breathing deeply and looking for your inner quiet place.
What could possibly be bad enough to threaten to put me over the edge? Well, nothing really. There is no singular crisis. It's just a whole lot of little things going on all at the same time requiring mental energy to process, make decisions about, prepare for or clean up after. For example, Monday was Pete's day off (his holiday for the 4th, since the 4th came on his regular day off) and I decided to stay home with him and get my hours in on another day this week. Boy, am I glad I did. A storm was rolling in and I was in the basement doing laundry when I heard a loud crack of thunder. I decided to make sure my laptop was unplugged and headed up stairs just in time to see Pete running out the patio door in horizontal rain. Our new screened pavillion was being lifted two feet into the air and I charged out after him. It took both of us to hold it down, being instantly drenched and not even stopping to consider the wisdom of this plan considering the high winds, driving rain and lightning/thunder cracking all around us. If we had not been home, I have no doubt the pavillion would have smashed through our bedroom window, torn off the gutter and been smashed to smithereens. But we saved it! It is bent in several places, but it is in tact. (And, thanks to that extra weight I'm carrying, I did not have to fear being blown away in the wind. I held my own, thank you very much. They say that extra weight is a good thing to have around during a famine. Same goes for high winds.) Another round was on its way, so we tore up several patio stones and further anchored the pavillion to the patio (it had been staked already for all the good it did.) This whole scenario took place shortly after we'd dropped off the dehumidifier at Sears, which picked this week to stop working. (When you live up north and have a basement, a dehumidifier is the only way to keep it dry enough to store stuff down there.) And this was a couple of days after we picking up my car from the second trip to the car hospital for air conditioner repairs. It's the summer for broken stuff, I guess.
Okay - so what's the big deal about a few bent poles and a damp basement? Nothing much, but add a ton of stuff on the plate at work, a new service coming at church with a bazillion details to iron out, three wedding showers this summer, wedding stuff (thank God I'm not the mother of the bride), uncertain health issues, and more, all on the heels of lots of company, and there you have it. I have a motto: "There's nothing wrong with me that a couple of weeks in the Bahamas wouldn't cure." Maybe a suite in a mental health facility is more like it...I think I feel a breakdown coming on.
What could possibly be bad enough to threaten to put me over the edge? Well, nothing really. There is no singular crisis. It's just a whole lot of little things going on all at the same time requiring mental energy to process, make decisions about, prepare for or clean up after. For example, Monday was Pete's day off (his holiday for the 4th, since the 4th came on his regular day off) and I decided to stay home with him and get my hours in on another day this week. Boy, am I glad I did. A storm was rolling in and I was in the basement doing laundry when I heard a loud crack of thunder. I decided to make sure my laptop was unplugged and headed up stairs just in time to see Pete running out the patio door in horizontal rain. Our new screened pavillion was being lifted two feet into the air and I charged out after him. It took both of us to hold it down, being instantly drenched and not even stopping to consider the wisdom of this plan considering the high winds, driving rain and lightning/thunder cracking all around us. If we had not been home, I have no doubt the pavillion would have smashed through our bedroom window, torn off the gutter and been smashed to smithereens. But we saved it! It is bent in several places, but it is in tact. (And, thanks to that extra weight I'm carrying, I did not have to fear being blown away in the wind. I held my own, thank you very much. They say that extra weight is a good thing to have around during a famine. Same goes for high winds.) Another round was on its way, so we tore up several patio stones and further anchored the pavillion to the patio (it had been staked already for all the good it did.) This whole scenario took place shortly after we'd dropped off the dehumidifier at Sears, which picked this week to stop working. (When you live up north and have a basement, a dehumidifier is the only way to keep it dry enough to store stuff down there.) And this was a couple of days after we picking up my car from the second trip to the car hospital for air conditioner repairs. It's the summer for broken stuff, I guess.
Okay - so what's the big deal about a few bent poles and a damp basement? Nothing much, but add a ton of stuff on the plate at work, a new service coming at church with a bazillion details to iron out, three wedding showers this summer, wedding stuff (thank God I'm not the mother of the bride), uncertain health issues, and more, all on the heels of lots of company, and there you have it. I have a motto: "There's nothing wrong with me that a couple of weeks in the Bahamas wouldn't cure." Maybe a suite in a mental health facility is more like it...I think I feel a breakdown coming on.
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