I can't remember now what it was, but something caused me tonight to go back and revisit the blog that Joe and I kept during his short, 4 month battle with cancer . I wish there had been somebody here to yell "STOP, STOP, DON'T DO THAT!", or it would have been great if there was caution tape across the front page of his blog that read "WARNING - Do Not Click Further - Lots of Tears and Ugly Crys Ahead."
Honestly, I don't know if I would have heeded any of the warnings anyhow (yes, I'm such a rebel...ask my sister about the girl who tried to cut in front me at Target on BLACK FRIDAY), because I clicked on his page, and I read every post and every comment, and I cried the ugly cry......and then I cried some more.
When Joe and I started writing this blog, it forced us to put some of our emotions about what was happening down on paper (or I guess on a computer screen, but whatever...). This blog became a bit cathartic for us. So re-reading his blog tonight has inspired me to give it another try. Frankly, I don't know if anyone will even see this, but it is more for me than anybody else, so I am ok with that...
It has been 8 1/2 months since Joe passed away. Some days this seems like it was so long ago, and other days it seems like it was just yesterday. Everything happened so fast once Joe was diagnosed. We were trying to take in all the Dr. mumble jumble and get from appointment A, to appointment B, to appointment C, so on and so forth. And oh yea, we were also trying to keep our already semi-chaotic household in order.
When I casually think back on those first few weeks, they seem like a blur, but last week happened to be the one year anniversary from when Joe was diagnosed, and it turns out that I remember every painful conversation we had with the numerous doctors we met with that week. I also remember the mix of emotions running through both our heads, and I remember us just sitting together quietly, neither of us saying anything. We were both so consumed with the all the information the doctors had given us, but more importantly all the information the doctors didn't give us and we really wanted to know.
As dull drum as that sounds, I also remember Joe getting into his fighting mode so quickly, and was ready to take on this Cancer bitch right away. Joe drank the green smoothies, walked when he could, and prayed like he has never prayed before (those were his words - not mine). Unfortunately I think that his brave and positive attitude really masked how much pain he was in during this time, and I would bet that he did this on purpose for the kids and I :(
Don't get me wrong. Joe did have moments, many moments, when he was CLEARLY not feeling well, and was in a lot of pain. And there many times that mentally and emotionally he was challenged to find that bright spot to focus on.
Overall, Joe was still braver than most, and more positive than most in this situation. It is hard to believe that he has been gone for so long already, and it is hard to believe that he has been gone for longer than he was even given the chance to fight back.
I miss him every day, every hour, every minute of the day. I am sometimes afraid that my missing him will always hurt like this, but I am more afraid that someday it wont hurt this much.
- Jess
Monday, April 8, 2013
Sunday, July 29, 2012
Service Information
For all of you requesting information regarding services for Joe:
Visitation:
2:00 pm to 8:00 pm on Tuesday, July 31, 2012 at Potere-Modetz Funeral Home 339 Walnut Boulevard Rochester MI 48307 (map/driving directions)
Service:
11:00 am on Wednesday, August 1, 2012 at Woodside Bible Church - Troy 6600 Rochester Road Troy MI (map/driving directions)
with an instate time of 10 a.m.
http://www.modetzfuneralhomes.com/
Visitation:
2:00 pm to 8:00 pm on Tuesday, July 31, 2012 at Potere-Modetz Funeral Home 339 Walnut Boulevard Rochester MI 48307 (map/driving directions)
Service:
11:00 am on Wednesday, August 1, 2012 at Woodside Bible Church - Troy 6600 Rochester Road Troy MI (map/driving directions)
with an instate time of 10 a.m.
http://www.modetzfuneralhomes.com/
Peace
Joe passed away peacefully yesterday evening surrounded by his loved ones.
For all that have spoken with, or visited with him this past week, don't forget that he made you promise that you would smile instead of cry upon hearing this news.
He was truly at peace with what was happening, and we should all get some comfort from that.
Please continue to pray for Grace, Joey and Cooper.
For all that have spoken with, or visited with him this past week, don't forget that he made you promise that you would smile instead of cry upon hearing this news.
He was truly at peace with what was happening, and we should all get some comfort from that.
Please continue to pray for Grace, Joey and Cooper.
Wednesday, July 25, 2012
Update
Just wanted to give everybody a quick update on Joe.....
He has been doing well and enjoying lots of company. He still has his sense of humor and is keeping all of his visitors along with the hospice staff entertained with his snarky comments. He is able to sit up in a chair and even takes a few laps around the hospice wing once a day (he keeps looking for someone to race, but isn't finding much competition!). While there is a lot of laughter, there is also definitely a lot of tears. It is quite the roller coaster of emotions.
The staff here is A-MAZ-ING! Several of the nurses that he has met over the last four months have stopped by. They are all sporting his CANCER NINJA bracelets and rallying for him. He has honestly touched so many people with his ability to hold his head high throughout this that even the nurses are leaving in tears.
He is at peace with everything that is happening, but is concerned for the kids and I. We try to reassure him with the fact that we are surrounded by great family and friends and it helps some.
The kids are understandably confused, scared and sad....as are we all. When the kids were leaving the hospital last night, Joey convinced me to let him get something out of the vending machine. A few minutes later, as we were walking down the hall, Joey opened his hand and showed me the pack of Life Savers he had chosen and said "I wish I could just give dad one of these and it would work." (insert tears!!) My heart just breaks for them.
Right now, all signs show that his body is continuing to fight the infection, but he is sleeping much more and eating/drinking less. We are bringing him home tomorrow and will be getting hospice care from the house. This was a tough decision, but Joe wants to be able to see the kids during the time when he is awake and feeling good.
We are both overwhelmed by the outpouring of love he is receiving. Know that all the text messages, voice mails, and Facebook comments are beings heard. Please continue to pray for him to be at peace and free of pain, also please pray for our 3 AWESOME kids who are hurting.
- Jess
Below are some pics from the last few days (many of your have probably already seen these on Facebook)
- The kids sending some prayers up
- His Cancer Ninja bracelet (all the cool kids have one!)
- One of his awesome nurses reloading his super powers
- His opinion of cancer is pretty clear
He has been doing well and enjoying lots of company. He still has his sense of humor and is keeping all of his visitors along with the hospice staff entertained with his snarky comments. He is able to sit up in a chair and even takes a few laps around the hospice wing once a day (he keeps looking for someone to race, but isn't finding much competition!). While there is a lot of laughter, there is also definitely a lot of tears. It is quite the roller coaster of emotions.
The staff here is A-MAZ-ING! Several of the nurses that he has met over the last four months have stopped by. They are all sporting his CANCER NINJA bracelets and rallying for him. He has honestly touched so many people with his ability to hold his head high throughout this that even the nurses are leaving in tears.
He is at peace with everything that is happening, but is concerned for the kids and I. We try to reassure him with the fact that we are surrounded by great family and friends and it helps some.
The kids are understandably confused, scared and sad....as are we all. When the kids were leaving the hospital last night, Joey convinced me to let him get something out of the vending machine. A few minutes later, as we were walking down the hall, Joey opened his hand and showed me the pack of Life Savers he had chosen and said "I wish I could just give dad one of these and it would work." (insert tears!!) My heart just breaks for them.
Right now, all signs show that his body is continuing to fight the infection, but he is sleeping much more and eating/drinking less. We are bringing him home tomorrow and will be getting hospice care from the house. This was a tough decision, but Joe wants to be able to see the kids during the time when he is awake and feeling good.
We are both overwhelmed by the outpouring of love he is receiving. Know that all the text messages, voice mails, and Facebook comments are beings heard. Please continue to pray for him to be at peace and free of pain, also please pray for our 3 AWESOME kids who are hurting.
- Jess
Below are some pics from the last few days (many of your have probably already seen these on Facebook)
- The kids sending some prayers up
- His Cancer Ninja bracelet (all the cool kids have one!)
- One of his awesome nurses reloading his super powers
- His opinion of cancer is pretty clear
Saturday, July 21, 2012
Joe
As many of you already know, Joe has taken a turn for the worse, and unfortunately it looks like there is no turning back this time.
This past week Joe has been in a lot of pain. When he went in for his infusion on Wednesday, his white blood cell count was high, his heart rate was high and he had a low grade fever. All signs of infection. The doctor loaded him up with antibiotics but told him to go straight to the ER if he started to feel worse. By the time Friday morning rolled around, he was definitely feeling worse, so off to the ER we went. On our way to there we both thought that this was the quickest way to get the GOOD painkillers, and get some of the pressure taken off of his stomach by way of another paracentisis. We THOUGHT this would be a fairly quick (at least by ER standards) trip to the emergency room. We never would have thought that once Joe was admitted, he likely won't get the chance to leave.
The first half of the day in the ER on Friday went by pretty quietly. In the afternoon, they did a paracentisis. During the paracentisis, air/gas started coming through the tube. Apparently, this was a red flag for the doctor and a CT scan was done to get a better idea of what was going on. On the CT Scan they detected a perforated bowel, and a surgeon was immediately called in.
We had met with this surgeon once before after Joe's initial diagnosis, and new that he was a very straightforward sort of guy. In no uncertain terms, he told us that this was not an ideal situation, and that there was a chance that once they got Joe opened up, the cancer would be too invasive and they wouldn't be able to do anything. If that was the case, there were no other options, and the perforated bowel would make Joe septic. Lastly, the surgeon said that the surgery would take 3-4 hours.
This was all happening so fast. Just two weeks ago, we were boating Up North, enjoying the Cherry Festival, and Joe had gone fishing and ACTUALLY caught a fish (this was a big event because he does a lot of fishing but not a lot of catching!). I couldn't (and really still can't) wrap my head around how he could be feeling so good just two weeks ago, and now be feeling so bad and needing emergency surgery.
Joe was taken back for surgery around 7. It had already been a long day, and I knew that the night was far from over. My emotions were all over the place. Joe's sister, Elayne, and I were a mess of nerves as we waited for the doctor to come get us. We knew that the longer it took, the better, because that would mean that they were actually able to perform the surgery. Close to 8, the waiting room attendant came over to tell us that the surgery was over and the doctor would be right out to talk to us. My heart dropped as I looked at the clock and saw that it had only been an hour since they started. That could only mean one thing.
Once the doctor finally came out to talk to us, he told us what we had already figured out. The cancer was everywhere, and if they had done the surgery, he would have died on the table. The only option now was hospice care. I can't even describe my emotions at this point..fear, sadness, anger, confusion. You name it, I am sure I was/am feeling it. The most overwhelming feeling was dread. I dreaded telling Joe. Could there be anything worse?
Once we were finally able to go back and see him, the nurse told us that the surgeon gave Joe the news that they weren't able to do anything. Seeing him the first time was horrible, beyond horrible really. I couldn't describe my emotions when I was told that he had to have emergency surgery in less than ideal circumstances, and I REALLY can't describe how it feels to know that they couldn't do the surgery and there are no more options for him.
Fast forward 24 hours, and I sit here tonight in hospice care and watch Joe relax peacefully. They are keeping him out of pain and taking great care of him. We don't know if it will days or maybe weeks before he passes, but are comforted in the fact the he is not in pain. He has been in great spirits today and enjoyed lots of visits from friends and family.
As a parent, I don't think there could be anything harder than having to explain that daddy isn't coming home from the hospital. All I can say is that it was gut wrenching horrible, but Joe and I sat with them and got through it together. I am sure there will be dozens or even hundreds of equally painful conversations in the days, weeks, months and years to come but at least I got to do this one with Joe and he could tell them each how much he loves them.
Lastly, I want to say how proud of Joe I am. He has fought so hard these last 4 months and endured more pain than most of us will ever have to face. On the days that I stress, he calmly tells me to relax and that it is out of our control. He truly believes this and it has brought him so much comfort. Late last night/early this morning he told me that he wasn't scared of dying. He is so brave and so strong and I am so lucky.
- Jess
Some pics from our weekend Up North just two weeks ago....
This past week Joe has been in a lot of pain. When he went in for his infusion on Wednesday, his white blood cell count was high, his heart rate was high and he had a low grade fever. All signs of infection. The doctor loaded him up with antibiotics but told him to go straight to the ER if he started to feel worse. By the time Friday morning rolled around, he was definitely feeling worse, so off to the ER we went. On our way to there we both thought that this was the quickest way to get the GOOD painkillers, and get some of the pressure taken off of his stomach by way of another paracentisis. We THOUGHT this would be a fairly quick (at least by ER standards) trip to the emergency room. We never would have thought that once Joe was admitted, he likely won't get the chance to leave.
The first half of the day in the ER on Friday went by pretty quietly. In the afternoon, they did a paracentisis. During the paracentisis, air/gas started coming through the tube. Apparently, this was a red flag for the doctor and a CT scan was done to get a better idea of what was going on. On the CT Scan they detected a perforated bowel, and a surgeon was immediately called in.
We had met with this surgeon once before after Joe's initial diagnosis, and new that he was a very straightforward sort of guy. In no uncertain terms, he told us that this was not an ideal situation, and that there was a chance that once they got Joe opened up, the cancer would be too invasive and they wouldn't be able to do anything. If that was the case, there were no other options, and the perforated bowel would make Joe septic. Lastly, the surgeon said that the surgery would take 3-4 hours.
This was all happening so fast. Just two weeks ago, we were boating Up North, enjoying the Cherry Festival, and Joe had gone fishing and ACTUALLY caught a fish (this was a big event because he does a lot of fishing but not a lot of catching!). I couldn't (and really still can't) wrap my head around how he could be feeling so good just two weeks ago, and now be feeling so bad and needing emergency surgery.
Joe was taken back for surgery around 7. It had already been a long day, and I knew that the night was far from over. My emotions were all over the place. Joe's sister, Elayne, and I were a mess of nerves as we waited for the doctor to come get us. We knew that the longer it took, the better, because that would mean that they were actually able to perform the surgery. Close to 8, the waiting room attendant came over to tell us that the surgery was over and the doctor would be right out to talk to us. My heart dropped as I looked at the clock and saw that it had only been an hour since they started. That could only mean one thing.
Once the doctor finally came out to talk to us, he told us what we had already figured out. The cancer was everywhere, and if they had done the surgery, he would have died on the table. The only option now was hospice care. I can't even describe my emotions at this point..fear, sadness, anger, confusion. You name it, I am sure I was/am feeling it. The most overwhelming feeling was dread. I dreaded telling Joe. Could there be anything worse?
Once we were finally able to go back and see him, the nurse told us that the surgeon gave Joe the news that they weren't able to do anything. Seeing him the first time was horrible, beyond horrible really. I couldn't describe my emotions when I was told that he had to have emergency surgery in less than ideal circumstances, and I REALLY can't describe how it feels to know that they couldn't do the surgery and there are no more options for him.
Fast forward 24 hours, and I sit here tonight in hospice care and watch Joe relax peacefully. They are keeping him out of pain and taking great care of him. We don't know if it will days or maybe weeks before he passes, but are comforted in the fact the he is not in pain. He has been in great spirits today and enjoyed lots of visits from friends and family.
As a parent, I don't think there could be anything harder than having to explain that daddy isn't coming home from the hospital. All I can say is that it was gut wrenching horrible, but Joe and I sat with them and got through it together. I am sure there will be dozens or even hundreds of equally painful conversations in the days, weeks, months and years to come but at least I got to do this one with Joe and he could tell them each how much he loves them.
Lastly, I want to say how proud of Joe I am. He has fought so hard these last 4 months and endured more pain than most of us will ever have to face. On the days that I stress, he calmly tells me to relax and that it is out of our control. He truly believes this and it has brought him so much comfort. Late last night/early this morning he told me that he wasn't scared of dying. He is so brave and so strong and I am so lucky.
- Jess
Some pics from our weekend Up North just two weeks ago....
Tuesday, July 3, 2012
Sucks to be Cancer
Last Monday, Joe met with the oncologist. As usual, I was pretty freakin' nervous before hand. Joe kept reminding me that he has been feeling good and he hasn't had any tests done lately that would bring bad news. Still....I was nervous. Can't help it.
Joe has been feeling better....much, much better! The ascites (cancer juice) has been accumulating at a slower pace, therefore he is eating more and has more energy. Also, this means that he doesn't need to get 'drained' as frequently. He was drained last Tuesday before chemo, and it had been 8 days since the previous draining. A new record!
His only frustrations lately, have to do with swelling in the ankles and knees, and oral thrush (a common side effect of the chemo). The first time he noticed his cankles caused a bit of concern, and the doctor sent him in for an ultra sound to ensure that it wasn't a blood clot. Luckily, there were none, and it is probably just the crazy hot weather we have been having.
Overall, the doctor was very happy with the progress that is being made. The plan is for Joe to get another scan at the end of the month to see if anything is shrinking. Fingers crossed!
***************************
Last Tuesday, Joe had round 3 of his chemo treatment. Three down and nine to go. Honestly, he doesn't mind these too much. The chemo appears to be doing something, and the side-effects haven't been too bad (knock on wood). One of the pre-meds they give Joe is a steroid, so he has a bunch of energy for the 2nd and 3rd day following his treatment. Usually it is on the 4th and 5th day that he just crashes from exhaustion. The plan is to go up north for the weekend, so he is just praying that he has enough energy to get some fishing in!
- Jess
Joe has been feeling better....much, much better! The ascites (cancer juice) has been accumulating at a slower pace, therefore he is eating more and has more energy. Also, this means that he doesn't need to get 'drained' as frequently. He was drained last Tuesday before chemo, and it had been 8 days since the previous draining. A new record!
His only frustrations lately, have to do with swelling in the ankles and knees, and oral thrush (a common side effect of the chemo). The first time he noticed his cankles caused a bit of concern, and the doctor sent him in for an ultra sound to ensure that it wasn't a blood clot. Luckily, there were none, and it is probably just the crazy hot weather we have been having.
Overall, the doctor was very happy with the progress that is being made. The plan is for Joe to get another scan at the end of the month to see if anything is shrinking. Fingers crossed!
***************************
Last Tuesday, Joe had round 3 of his chemo treatment. Three down and nine to go. Honestly, he doesn't mind these too much. The chemo appears to be doing something, and the side-effects haven't been too bad (knock on wood). One of the pre-meds they give Joe is a steroid, so he has a bunch of energy for the 2nd and 3rd day following his treatment. Usually it is on the 4th and 5th day that he just crashes from exhaustion. The plan is to go up north for the weekend, so he is just praying that he has enough energy to get some fishing in!
- Jess
Cleveland Clinic
A few months ago, shortly after Joe was initially diagnosed, he went to the Cleveland Clinic for a consultation on a procedure that is pretty aggressive and fairly controversial in the medical world. This procedure is called HIPEC (Hyperthermic Intraperitoneal Chemotherapy). Basically, this is heated chemotherapy that is delivered directly to the abdominal cavity. Before HIPEC is done, a surgeon goes in and removes all visible tumors (this is known as cytoreductive surgery).
From what we have been told, this is a pretty rough surgery with a long recovery period, and is only available for very select patients as the cancer has to be contained to the abdominal cavity. During the initial consultation, Joe met with a surgeon and a medical oncologist. The surgeon was adamant that Joe was a great candidate, and this should be done 6 weeks following the completion of the radiation. The medical oncologist wasn't so certain that Joe was a good candidate, and thought it would be best for Joe to complete the multi-agent chemotherapy first. Ughhh.... why can't anything be easy or straight forward!
The differing opinions between the surgeon and medical oncologist is what brought us back to Cleveland this past Friday for a follow up meeting. Joe was a dreading the onslaught of questions regarding his diagnosis and symptoms. The night before we left he was already putting together snarky responses for the typical first question that a doctor asks: "What brings you in today," or "What can I do for you?" Luckily, the surgical oncologist we met with asked neither of these questions, and as a result, she quickly won Joe over. Dr. Wey was very nice, and spent a long time reviewing Joe's case and discussing the facts with us. Ultimately she decided that she thinks it is best to wait a while until we can see how Joe progresses on the current chemotherapy regimen. While it is nice to have the option available to have this HIPEC treatment, it is a pretty big deal, and we aren't sure we were ready to take that risk yet, especially since Joe has been feeling much better.
All in all the trip to Cleveland went very well and we were happy to have went. We tried to find cool things to take pictures of on our drive there and back, but were completely unsuccessful. There was lots of farm land for the majority of the ride, and then some nice Cleveland ghettos closer to the hospital.
- Jess
From what we have been told, this is a pretty rough surgery with a long recovery period, and is only available for very select patients as the cancer has to be contained to the abdominal cavity. During the initial consultation, Joe met with a surgeon and a medical oncologist. The surgeon was adamant that Joe was a great candidate, and this should be done 6 weeks following the completion of the radiation. The medical oncologist wasn't so certain that Joe was a good candidate, and thought it would be best for Joe to complete the multi-agent chemotherapy first. Ughhh.... why can't anything be easy or straight forward!
The differing opinions between the surgeon and medical oncologist is what brought us back to Cleveland this past Friday for a follow up meeting. Joe was a dreading the onslaught of questions regarding his diagnosis and symptoms. The night before we left he was already putting together snarky responses for the typical first question that a doctor asks: "What brings you in today," or "What can I do for you?" Luckily, the surgical oncologist we met with asked neither of these questions, and as a result, she quickly won Joe over. Dr. Wey was very nice, and spent a long time reviewing Joe's case and discussing the facts with us. Ultimately she decided that she thinks it is best to wait a while until we can see how Joe progresses on the current chemotherapy regimen. While it is nice to have the option available to have this HIPEC treatment, it is a pretty big deal, and we aren't sure we were ready to take that risk yet, especially since Joe has been feeling much better.
All in all the trip to Cleveland went very well and we were happy to have went. We tried to find cool things to take pictures of on our drive there and back, but were completely unsuccessful. There was lots of farm land for the majority of the ride, and then some nice Cleveland ghettos closer to the hospital.
 |
| I was really wishing we could turn towards Chicago instead of Cleveland :( |
 |
| Close to the hospital was a pink and blue house, turned BBQ restaurant, with a drive through window called Hot Sauce Williams. It was so completely ghetto, and Joe SO wanted to stop. Luckily I was driving, and my stomach was safe! I wish I had mastered the art of driving and picture taking, so that I could have gotten a picture of the house as well. |
- Jess
Tuesday, June 19, 2012
Day to Day
"How's Joe doing?"
I am asked this question all the time and it is such a tough question to answer, because it really changes from day to day. To those who haven't seen him lately, and happen to catch him on a bad day, it can be a bit scary. I try to reassure them that not every day is bad, but it is hard to believe unless you see it with your own eyes.
Last week wasn't one of Joe's best. He had his second infusion of Erbitux on Tuesday, and was sick ALL day Wednesday. As a result, he was a bit dehydrated and had to spend a few hours on Thursday in the infusion center getting an IV of fluids. It is really important for Joe to maintain his weight right now, and the side effects from the drugs make it nearly impossible to do so (he has lost close to 50 pounds in the last 3 months - YIKES!).
On the flip side - over the weekend, Joe started feeling much better, was eating more and taking daily walks. We have found this awesome frozen yogurt place by our house, and have been making nightly trips there (oh the sacrifices I have to make to fatten Joe up!).
More good news....
As we have mentioned before, the fluid that builds up on Joe's stomach has been his biggest problem all along. It stretches out his muscles, makes it difficult to breath, and constantly has him feeling full so he has no appetite. Lately he averages .75 liters of fluid build up per day. When Joe had his first infusion of Folfiri+Erbitux 2 weeks ago, the doctor mentioned that we might notice some improvement in the fluid build up in 2 weeks. Well over the past weekend, Joe did notice that less fluid seemed to be building up. This morning was his paracentesis, and they only drained off only 1.1 liters (average of .25 liters/day since he was drained last Friday)!!!!
That was huge news!!! It means that the chemo is doing SOMETHING!! The timing of this news was great too, as today was Joe's long day at the infusion center. He definitely doesn't look forward to infusion days (they are LONG BORING days), and dreads the few days following even more (when the side effects kick in), but knowing that the chemo is working makes the long days and the side effects totally worth it! Hopefully the fluid will continue to decrease and he can starting getting the paracentesis' only once a week instead of twice (and eventually maybe not at all!).
Woohoo for more good news!!!
- Jess
I am asked this question all the time and it is such a tough question to answer, because it really changes from day to day. To those who haven't seen him lately, and happen to catch him on a bad day, it can be a bit scary. I try to reassure them that not every day is bad, but it is hard to believe unless you see it with your own eyes.
Last week wasn't one of Joe's best. He had his second infusion of Erbitux on Tuesday, and was sick ALL day Wednesday. As a result, he was a bit dehydrated and had to spend a few hours on Thursday in the infusion center getting an IV of fluids. It is really important for Joe to maintain his weight right now, and the side effects from the drugs make it nearly impossible to do so (he has lost close to 50 pounds in the last 3 months - YIKES!).
On the flip side - over the weekend, Joe started feeling much better, was eating more and taking daily walks. We have found this awesome frozen yogurt place by our house, and have been making nightly trips there (oh the sacrifices I have to make to fatten Joe up!).
More good news....
As we have mentioned before, the fluid that builds up on Joe's stomach has been his biggest problem all along. It stretches out his muscles, makes it difficult to breath, and constantly has him feeling full so he has no appetite. Lately he averages .75 liters of fluid build up per day. When Joe had his first infusion of Folfiri+Erbitux 2 weeks ago, the doctor mentioned that we might notice some improvement in the fluid build up in 2 weeks. Well over the past weekend, Joe did notice that less fluid seemed to be building up. This morning was his paracentesis, and they only drained off only 1.1 liters (average of .25 liters/day since he was drained last Friday)!!!!
 |
| Joe relaxing to some Pearl Jam during his infusion; He is pretty tight with the nurses now and they have started bring him their special band-aids :) |
That was huge news!!! It means that the chemo is doing SOMETHING!! The timing of this news was great too, as today was Joe's long day at the infusion center. He definitely doesn't look forward to infusion days (they are LONG BORING days), and dreads the few days following even more (when the side effects kick in), but knowing that the chemo is working makes the long days and the side effects totally worth it! Hopefully the fluid will continue to decrease and he can starting getting the paracentesis' only once a week instead of twice (and eventually maybe not at all!).
Woohoo for more good news!!!
- Jess
Friday, June 8, 2012
Thanks
Last Monday, while in the waiting room at the oncologists office, we received and email from a friend who was forwarding a message from their friend. This friend of a friend had recently completed the Relay For Life. For those not familiar with Relay For Life, it is a fundraising activity put on by the American Cancer Society where teams of people take turns walking around a track over a 24 period. During the nighttime portion of the relay, luminaries are placed around the track to light it up. The luminaries are decorated in memory/support of cancer survivors. The friend of a friend was so thoughtful and decorated a luminary in support of Joe. The email we received were pictures of this luminary.
This email couldn't have come at a more perfect time. Before each oncology appointment, I am sick with nerves. Reading the email while waiting for the doctor was a reminder of how many people are praying for Joe and really lifted my spirits.
We have been so touched by all the prayers and offers of help that we have received. We have had people bring dinners, come with Joe to his appointments, offer to watch the kids, and the best one yet was a friend offering to mow our lawn. The friend offering to mow the lawn said that he would even do it while wearing a speedo for entertainment (this would have been much more appealing to Joe if the friend were a she! - thank goodness we have a lawn service!!).
We can't say than you enough for all the prayers and support that we are getting!
This email couldn't have come at a more perfect time. Before each oncology appointment, I am sick with nerves. Reading the email while waiting for the doctor was a reminder of how many people are praying for Joe and really lifted my spirits.
We have been so touched by all the prayers and offers of help that we have received. We have had people bring dinners, come with Joe to his appointments, offer to watch the kids, and the best one yet was a friend offering to mow our lawn. The friend offering to mow the lawn said that he would even do it while wearing a speedo for entertainment (this would have been much more appealing to Joe if the friend were a she! - thank goodness we have a lawn service!!).
We can't say than you enough for all the prayers and support that we are getting!
The Results Are In.....
The results from Joe's CT Scan on Tuesday are in.......and they show NO new growths!! Woohoo!!!
More specifically..."no lung or liver metastasis is identified", "...gallbladder is grossly unremarkable. Spleen, adrenal glands, pancreas and the kidneys do not show any focal mass," and "bones do not show any focal metastatic lesion." Now, there wasn't necessarily much improvement, but the fact that it hasn't gotten worse is awesome.
Finally a bit of good news! Good news that we totally needed for the mental aspect of all this :)
We should note that the doctor hasn't discussed the report formally with us, but asked the nurse to share it with us, and let us know that there was no bad news.
On Tuesday when Joe had the scan, we weren't overly nervous about it because we knew that we wouldn't be getting the results right away. Today when the nurse told us she had the report and just had to get the doctor to sign off on it before she released it to us, I got totally nervous! Major 'scan' xiety!
Thanks to everybody praying and sending positive vibes Joe's way. It worked!!
More specifically..."no lung or liver metastasis is identified", "...gallbladder is grossly unremarkable. Spleen, adrenal glands, pancreas and the kidneys do not show any focal mass," and "bones do not show any focal metastatic lesion." Now, there wasn't necessarily much improvement, but the fact that it hasn't gotten worse is awesome.
Finally a bit of good news! Good news that we totally needed for the mental aspect of all this :)
We should note that the doctor hasn't discussed the report formally with us, but asked the nurse to share it with us, and let us know that there was no bad news.
On Tuesday when Joe had the scan, we weren't overly nervous about it because we knew that we wouldn't be getting the results right away. Today when the nurse told us she had the report and just had to get the doctor to sign off on it before she released it to us, I got totally nervous! Major 'scan' xiety!
Thanks to everybody praying and sending positive vibes Joe's way. It worked!!
Wednesday, June 6, 2012
Round 2
Thank you to everyone who sent us well wishes for Joe's scan yesterday. We probably wont find out the results until later this week, but when we do we will be sure to let everyone know.
We met with the oncologist on Monday and at the time Joe was feeling pretty crappy. His pain was horrible over the weekend and his stomach was so distended from the ascites. When they took his vitals his blood pressure and heart rate were through the roof. In some ways, I think it was good that the doctor could see Joe in so much pain, as Joe has a tendency to sugar coat how he is really feeling. The original plan was to let Joe rest up for 2 or 3 weeks after the first round of chemo/radiation, but in the spirit of being as aggressive as possible they are getting him started this week. Today actually.
This next regimen will consist of Folfiri + Erbitux. The side effects are supposed to be much worse (nausea, diarrhea and stomach cramps primarily, but one of the drugs also causes a crazy acne type rash), but it is also supposed to be much more effective as well. So today we are at the infusion center and it appears that we will be here a good portion of the day. They have to run his labs first thing to ensure that nothing is out of whack, then they give him pre-meds to counter-act the nausea, finally he will get the chemo. This afternoon he will go home with his bag of chemo for the next 72 hours. He will repeat this cycle every 2 weeks for the next 6 months. This is the plan for now, but we have quickly learned that plans change.
We have come completely prepared for our long day here........2 computers, iPad, kindle, movie from RedBox. This might our only chance to watch a movie or read a book with out the interruptions of the kids fighting or the dog needing to go outside!
We met with the oncologist on Monday and at the time Joe was feeling pretty crappy. His pain was horrible over the weekend and his stomach was so distended from the ascites. When they took his vitals his blood pressure and heart rate were through the roof. In some ways, I think it was good that the doctor could see Joe in so much pain, as Joe has a tendency to sugar coat how he is really feeling. The original plan was to let Joe rest up for 2 or 3 weeks after the first round of chemo/radiation, but in the spirit of being as aggressive as possible they are getting him started this week. Today actually.
This next regimen will consist of Folfiri + Erbitux. The side effects are supposed to be much worse (nausea, diarrhea and stomach cramps primarily, but one of the drugs also causes a crazy acne type rash), but it is also supposed to be much more effective as well. So today we are at the infusion center and it appears that we will be here a good portion of the day. They have to run his labs first thing to ensure that nothing is out of whack, then they give him pre-meds to counter-act the nausea, finally he will get the chemo. This afternoon he will go home with his bag of chemo for the next 72 hours. He will repeat this cycle every 2 weeks for the next 6 months. This is the plan for now, but we have quickly learned that plans change.
We have come completely prepared for our long day here........2 computers, iPad, kindle, movie from RedBox. This might our only chance to watch a movie or read a book with out the interruptions of the kids fighting or the dog needing to go outside!
Monday, June 4, 2012
Scan Tomorrow
Joe is getting scanned tomorrow. This is the first scan since he has begun treatment. Please pray that nothing new shows up and that the primary tumor has shrunk!
- Jess
- Jess
Sunday, May 27, 2012
Round one - Done!
Joe finished up his first round of treatment on Friday!
He is officially done with radiation, and he gets a 2 week break from chemotherapy to rest up and get a bit stronger before he starts a more potent cocktail of chemo drugs.
The doctors, nurses and office staff at the radiation office were awesome, and I think Joe will actually miss them a little bit (but definitely not enough that he wants to see them again!). They have a tradition in their office that when somebody completes their final radiation treatment, all the doctors and nurses gather around and watch as the patient rings a bell. Inscribed in the bell is the message "This bell rings for all who walked this path" and at the bottom of the bell are the words "Courage - Hope - Faith - Strength - Triumph - Love."
Seven weeks ago, when we met with radiation oncologist for the first time, we saw another patient ring this bell. At the time, it seemed like forever before Joe would be the one ringing the bell. Some days it does feel like forever ago that things were 'normal,' but some days it feels like these past few weeks have flown by.
Joe is anxious to start his next round of treatment. We are praying that it is an effective regimen and that the side effects are minimal.
-Jess
He is officially done with radiation, and he gets a 2 week break from chemotherapy to rest up and get a bit stronger before he starts a more potent cocktail of chemo drugs.
The doctors, nurses and office staff at the radiation office were awesome, and I think Joe will actually miss them a little bit (but definitely not enough that he wants to see them again!). They have a tradition in their office that when somebody completes their final radiation treatment, all the doctors and nurses gather around and watch as the patient rings a bell. Inscribed in the bell is the message "This bell rings for all who walked this path" and at the bottom of the bell are the words "Courage - Hope - Faith - Strength - Triumph - Love."
Seven weeks ago, when we met with radiation oncologist for the first time, we saw another patient ring this bell. At the time, it seemed like forever before Joe would be the one ringing the bell. Some days it does feel like forever ago that things were 'normal,' but some days it feels like these past few weeks have flown by.
Joe is anxious to start his next round of treatment. We are praying that it is an effective regimen and that the side effects are minimal.
-Jess
Friday, May 18, 2012
Paracentesis... What's all the hype about?
Right now I'm producing a little over a half a liter of fluid per day. One liter weighs approximately 2.2 lbs, so on an average week I gain just under 9 lbs. which is basically going from inception to the third trimester in a week. Leading up to my last paracentesis, I was so uncomfortable that I slept less than ten hours and took in less than 1500 calories over a 72 hour period. It was a sucky couple of days.
The man-idural.
They clean and prep the area before inserting the catheter. At this point I know relief is just minutes away, but conversely, I also know that what they are about to do isn't very comfortable, so my heart rate still jumps.
The man-livery.
The picture above is four liters worth of cancer juice, not exactly the bundle of joy you want to hand out cigars for. Once they started the pump it took about 20 minutes to drain my abdomen. It was such a relief that I actually fell asleep after the first half liter was removed.
I USUALLY feel pretty good when it's all said and done, but the problem is when you rapidly gain four liters and then take it out even faster, it tends to rearrange a few things as you can see in the "before" picture above.
Check your butts people, you don't want cancer juice!
Thursday, May 10, 2012
Side Effects Suck
When Joe started chemo a few weeks ago, they gave us a binder full of reading material on his treatments. It's basically the cancer patients equivalent of "What to Expect When You Are Expecting" .........but not nearly as exciting. Probably 85% of the material in this binder talks about the side effects of chemotherapy. We have all heard about these dreaded side effects ....nausea, hair loss, fatigue, etc, but after reading through the book we were made aware of so many other things (difficulty breathing, mouth sores, highly susceptible to infections, and on and on). Not going to lie...some of it is pretty scary.
Three weeks into his chemo regimen, Joe had yet to experience any of these side effects. We started to think that maybe he would get lucky and not have any at all, but unfortunately we must have jinxed him, because last week the side effects caught up with him. It has primarily been the nausea which is giving him the most trouble. He has since gotten a prescription for anti-nausea medicine that helps, but some days are still pretty sucky. His Doctors have been very adamant about him maintaining his weight, but that is difficult to do when your lunch consists of a pain pill and an anti-nausea pill :(
There is one other side effect that Joe just can't seem to shake....hiccups. After consulting with Dr. Google, we confirmed that this is a pretty common side effect. Apparently chemo has a sense of humor! (Seriously he is sitting next to me on the couch hiccuping away....I can't help but laugh!)
By the way, have I mentioned that the chemo regimen that he is on is called 5-FU. Kind of ironic right?
Even though the chemo totally sucks and is getting harder on Joe, we think/hope it is getting even harder on the cancer. Joe is happy to pop another anti-nausea pill, and hold his breath for 30 seconds to try and rid himself of these hiccups, if this is what it will take to beat this.
- Jess
There is one other side effect that Joe just can't seem to shake....hiccups. After consulting with Dr. Google, we confirmed that this is a pretty common side effect. Apparently chemo has a sense of humor! (Seriously he is sitting next to me on the couch hiccuping away....I can't help but laugh!)
By the way, have I mentioned that the chemo regimen that he is on is called 5-FU. Kind of ironic right?
Even though the chemo totally sucks and is getting harder on Joe, we think/hope it is getting even harder on the cancer. Joe is happy to pop another anti-nausea pill, and hold his breath for 30 seconds to try and rid himself of these hiccups, if this is what it will take to beat this.
- Jess
Friday, May 4, 2012
One Month
It has been only one month since Joe was diagnosed with cancer (sometimes it seems like forever ago). Since then, he has had:
While this is undeniably sucky, we have also had countless people sending prayers, good vibes, and well wishes our way. We believe that all this GOOD will definitely outweigh the sucky-ness. We are so appreciative for all the prayers, messages, and offers of help that we have received. It truly makes such a big difference in this journey.
-Jess
- 13 radiation treatments
- 13 days on chemotherapy
- 5 Paracentisis procedures
- 16.7 liters of fluid drained from his abdomen
- 11 doctors appointments
- 3 scans
- at least 20 needle pokes
While this is undeniably sucky, we have also had countless people sending prayers, good vibes, and well wishes our way. We believe that all this GOOD will definitely outweigh the sucky-ness. We are so appreciative for all the prayers, messages, and offers of help that we have received. It truly makes such a big difference in this journey.
-Jess
Monday, April 30, 2012
Please don't...
Here's a little common sense tutorial for anyone in the health care system.
If you work at a medical oncologist's office please don't ask "so what brings you in today?"
Please don't ask a cancer patient if they know the cause of their rapid weight loss.
If you wear a white coat with MD after your name please don't cross your fingers in front of a guy with cancer.
Please don't say "you're going to feel some pressure".
~ What they're really saying is "you're about to experience something so ridiculous and you may feel the urge to punch me when this is done"
Please don't say "would you mind if I gave you a physical exam?"
~ What the hell do you think I'm going to say??
And what ever you do please don't ever say "I hate to do this to you without a chance to sit down and get to know you a little better".
~ Dude you could be the best friend in the world and that would not make what you're about to do to me any better!
If you work at a medical oncologist's office please don't ask "so what brings you in today?"
Please don't ask a cancer patient if they know the cause of their rapid weight loss.
If you wear a white coat with MD after your name please don't cross your fingers in front of a guy with cancer.
Please don't say "you're going to feel some pressure".
~ What they're really saying is "you're about to experience something so ridiculous and you may feel the urge to punch me when this is done"
Please don't say "would you mind if I gave you a physical exam?"
~ What the hell do you think I'm going to say??
And what ever you do please don't ever say "I hate to do this to you without a chance to sit down and get to know you a little better".
~ Dude you could be the best friend in the world and that would not make what you're about to do to me any better!
Saturday, April 28, 2012
Take Your Kid To Work Day
While I was at the Cleveland Clinic meeting with more doctors (more to come on that later), Jess took all the kids to work for Take Your Kid to Work Day (I know what you are thinking, and yes, I agree that she is crazy for taking all of them!).
Apparently they had fun, but were frustrated that she didn't get recess or free choice time.
Apparently they had fun, but were frustrated that she didn't get recess or free choice time.
Saturday, April 21, 2012
Let's Talk Food
I have been on a liquid diet since my colonoscopy. When they saw how large this tumor is, they suggested going on a liquid diet until it starts shrinking as it is super close to being a complete obstruction. Now while this sounds like it would totally suck, the reality is that with all this fluid build up, I can hardly eat anyhow. The odd think is, I find myself watching the food network now and I have never watched it previously. Am I a glutton for punishment or what??
Remember when I said that we were continually looking for the positives in all of this, well I have 2 for you:
- This is the diet of all diets. I think my 2nd chin has finally started to go away.
- I have an excuse to not eat Jess's cooking...just kidding Jess... it is always great.... really it is :)
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| Looks Delicious Right? |
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