Looks like Kevin will be discharged from the hospital tomorrow. I'm not sure how long before we get to fly home, but it will be good to get out of here. It's a whole lot easier to get rest in a hotel than in a hospital. And hotels tend to smell better.
I can see Kevin getting stronger by the minute. Everything still exhausts him, but he's able to do more all the time. He went for three and a half walks yesterday. The half is because one walk got aborted after a few feet due to his IV pump battery dying, forcing us to return to the room for AC power. But Kevin insists on counting it! And he should; he still got himself out of and back into bed, and that’s the hardest part. Today he went for two pretty long walks already, with one more planned before bedtime.
His vital signs are good. He was taken off all IV completely until this afternoon, when they hooked him up temporarily to get a few more fluids into him. I imagine they’ll take the port out today or first thing tomorrow, and then he’ll be completely free of tubes.
He was graduated to solids foods this morning, and his digestive track is working again and good to go. (He he)
As always, thanks for all the emails and comments. I have a slew to read to him when he wakes up from his nap. And, we just got a mail delivery!! How exciting is that?!!
Roni
Friday, July 31, 2009
Thursday, July 30, 2009
The Road to Recovery
Since last night there have been some ups and downs, but Kevin's making progress overall. Our good friend who's an ICU nurse assures me that these ups and downs are normal, but that Kevin’s blood oxygen level needs to improve somewhat in order for him to be safely and steadily on that road to recovery. (Thank you Scott so much for the reassuring phone call and wise words of advice!)
In addition to blood oxygen levels, doctors had some concerns about the heart rate last night, which required some medication, but the heart rate has stabilized within normal range since early hours this morning. (Thanks Rabbi for the wee hours phone call/prayer!) Since last night his blood oxygen level has fluctuated between 88 and 92 – it needs to stabilize in the mid 90s. Kevin’s doing his best to work his lungs -- two walks so far today and hourly workouts with the incentive spirometer (or as I used to call it – the breathing tube thingie). Scott explained that it’s much better for the recovery process if Kevin can improve the level on his own. If he has to rely on an oxygen mask, it will set him back. Thankfully, even though improvement is still needed, so for far he’s been able to bring the level up enough to avoid the mask.
In terms of how he's feeling, his throat is feeling much better, especially since starting on a liquid diet at lunch. Thankfully his incision area is not giving him much pain and he's not having to use too much of the pain meds. In terms of how he feels overall, that goes up and down with the blood oxygen level. Mostly he’d sleep constantly if he could and feels really wiped out when we wake him for exercise.
He’s really pushed himself today to try and get past what can be a vicious cycle of: not feeling well; so staying in bed and just sleeping; so not getting enough oxygen; so not feeling well… He took two walks down the hall, has worked hard on hourly breathing exercises, sat up in a chair to eat his lunch – popsicle, some Jell-O and tea -- took a chair “bath” and changed his gown. To use a military analogy, I think today was something of a “forced march” day.
Please do continue to keep him in prayer for:
- his blood oxygen level to increase and stabilize
- his heart rate to continue to be normal
- his digestive system to continue to “wake up” so he can progress to a soft diet tomorrow
- his spirits. This is the 4th time he’s had to endure this recovery process, and I can see he’s feeling so DONE with it all. It’s not fair, it sucks big time, but he can’t give in to the emotions that go along with that; he has to keep fighting. And that’s what he’s doing. I’m very proud of him and grateful.
Discharge update: Doctor thought this morning that Kevin still may be on track for release tomorrow, but if his blood oxygen level does not reach the mid-90s and stabilize, that won't happen. We’ll see. It could turn around quickly.
Support our troops: One more military analogy – nothing helps a soldier’s morale like a letter from home. Keep those emails and blog and facebook comments coming. Just one or two lines are all it takes to get a smile out of him.
I’m not sure what time tomorrow I’ll post again. If I have either GREAT news or significant concerns, I’ll post ASAP. Otherwise, assume that no news is good news.
Thanks for reading, caring and praying,
Roni
In addition to blood oxygen levels, doctors had some concerns about the heart rate last night, which required some medication, but the heart rate has stabilized within normal range since early hours this morning. (Thanks Rabbi for the wee hours phone call/prayer!) Since last night his blood oxygen level has fluctuated between 88 and 92 – it needs to stabilize in the mid 90s. Kevin’s doing his best to work his lungs -- two walks so far today and hourly workouts with the incentive spirometer (or as I used to call it – the breathing tube thingie). Scott explained that it’s much better for the recovery process if Kevin can improve the level on his own. If he has to rely on an oxygen mask, it will set him back. Thankfully, even though improvement is still needed, so for far he’s been able to bring the level up enough to avoid the mask.
In terms of how he's feeling, his throat is feeling much better, especially since starting on a liquid diet at lunch. Thankfully his incision area is not giving him much pain and he's not having to use too much of the pain meds. In terms of how he feels overall, that goes up and down with the blood oxygen level. Mostly he’d sleep constantly if he could and feels really wiped out when we wake him for exercise.
He’s really pushed himself today to try and get past what can be a vicious cycle of: not feeling well; so staying in bed and just sleeping; so not getting enough oxygen; so not feeling well… He took two walks down the hall, has worked hard on hourly breathing exercises, sat up in a chair to eat his lunch – popsicle, some Jell-O and tea -- took a chair “bath” and changed his gown. To use a military analogy, I think today was something of a “forced march” day.
Please do continue to keep him in prayer for:
- his blood oxygen level to increase and stabilize
- his heart rate to continue to be normal
- his digestive system to continue to “wake up” so he can progress to a soft diet tomorrow
- his spirits. This is the 4th time he’s had to endure this recovery process, and I can see he’s feeling so DONE with it all. It’s not fair, it sucks big time, but he can’t give in to the emotions that go along with that; he has to keep fighting. And that’s what he’s doing. I’m very proud of him and grateful.
Discharge update: Doctor thought this morning that Kevin still may be on track for release tomorrow, but if his blood oxygen level does not reach the mid-90s and stabilize, that won't happen. We’ll see. It could turn around quickly.
Support our troops: One more military analogy – nothing helps a soldier’s morale like a letter from home. Keep those emails and blog and facebook comments coming. Just one or two lines are all it takes to get a smile out of him.
I’m not sure what time tomorrow I’ll post again. If I have either GREAT news or significant concerns, I’ll post ASAP. Otherwise, assume that no news is good news.
Thanks for reading, caring and praying,
Roni
Wednesday, July 29, 2009
Post Op Day 1 -- NG Tube Already Out!!
They pulled the NG (naso-gastric) tube out at about 10:00 this morning. Yippeeeeeee!! That thing has always been the worst part of recovery for Kevin. Gives him a horrible sore throat, which he can't sooth with liquid or lozenges since he's not allowed anything in his stomach yet.
They discontinued the shots they were giving him for pain and hooked him up with an IV that dispenses happy-feel-good dope at the push of a button.
Saw Dr. L on rounds. I mistook what he told me yesterday about the tumor markers. They won't tell us anything useful for a couple of weeks.
Kevin didn't sleep much last night and up until now, hasn't been able to rest this morning with all the activity -- early rounds, regular rounds, hooking up pain meds, antibiotics, fluids, electrolytes, etc. to the central line they put in during surgery and taking out the IV lines in his arms. But the last of the "fussing" ended about 25 minutes ago. Within 10 minutes of the last nurse leaving, Kevin was already lightly snoring -- a sound that makes me happy.
He's started reading the emails and facebook comments already and is grateful for all the expressions of love and friendship. I am so blown away by all the special people in our lives, especially you fellow PMPers -- your words of support have bouyed us up so much.
And thanks to my Beth El sistas who have called even though I couldn't really talk. Just hearing the voices makes it less lonely.
The love and support of our family and Rabbi Bruce are priceless.
When Kevin wakes up, it'll be time to get him on his feet and take a little walk; literally taking steps to getting him out of here.
That's the news for today. Keep those prayers and emails coming. Just don't mention food. I think he's dreaming of pizza. :-)
Roni
Tuesday, July 28, 2009
Surgery over -- Prognosis is good, but still some uncertainty ahead
Surgery was over at about 2:20 p.m. CT, and I spoke to the doc shortly after.
Kev is recovering so well that he did not have to go to ICU following surgery, as we all expected. I am writing from his room, trying to get this out before I am lulled to sleep by his soft snoring and the hum of the IV machine. He is experiencing minimal pain; it's being managed very well by a non-opiate drug -- he'll get his strength back sooner without opiates.
Out With the Spleen
It took five hours to get through the significant adhesions before they could even begin to remove the spleen.
Doc said it was enormous, making him sick. Depending on how long it’s been that big (remember, CT scans lie), it might have had something to do with how hard the chemo was on him.
Once the spleen was out, the platelet count went back up. Yay!
No Other Tumor Removed
Despite the encouraging report I received during the surgery, in the end the mesentery tumor was not removed. Too many adhesions, plus problems with blood supply it attached itself to would have resulted too much bleeding and too much small intestine coming out with it if removed. The loss of small intestine would have resulted in greatly diminished quality of life.
Though we would have preferred it out, Dr. L said after taking a thorough look at it, he does not think that the mesentery tumor poses a threat (read bowel obstructions) in the foreseeable future, if ever. Sigh of relief. We'll know more in the coming days.
Follow Up Chemo?
We will get results of pathology report next week, probably Wed. In the mean time, Dr. L. expects that we’ll see the tumor markers drop significantly in the next couple of days as he thinks it likely that the spleen activity was the sole cause of the rising markers.
Based on what he saw, Dr. L. thinks that the tumor was not only on the outside of the spleen, but also invaded it. If it turns out that there was disease inside the organ, I’m guessing that may mean more chemo to insure against systemic spread, but haven’t had that conversation with doctor yet. We’ll cross that bridge when we get to it. What Dr. L. did say was that if Kevin does have chemo in the future, he thinks that having that diseased spleen out will help Kevin tolerate it much better.
Oh No, You Need a Spleen…
Once when Kevin was telling someone about all the innards he had removed during his Feb. 2004 surgery they replied that they didn’t realize one didn’t need those things, to which Kevin replied, “Oh no, you need them, you can just live without them.”
The spleen serves to ward off big, nasty viruses (like swine flu); without a spleen one is more susceptible to those bugs and things like pancreatitis. Kevin will be getting some major antibiotic doses and will always have to keep up with vaccines and flu shots.
Getting Sprung and Coming Home
Dr. Loggie says he wants to shoot for getting Kevin discharged from the hospital on Friday! Woo hoo! We’d then check into a local hotel until he’s had some more post op follow up and is healthy enough to fly. If all goes well, we should be home in less than two weeks. I’m not sure about total recovery time. Another bridge we can wait to cross.
Thanks!!
For the emails and facebook messages. Words of encouragement are not just a gesture, they really are encouraging. Thanks for taking time out of your day to send them. I'm sorry I haven't been able to respond to most, but I've appreciated every one and saved all for Kevin to read when he's up to it.
And a special thanks to my new PMP Awareness friend, Rosemary S. who was in Omaha tending to her nephew who had recent surgery with Dr. Loggie for PMP. Before driving home to Chicago today, she ran around to local stores to find a robe for Kevin, bought me cereal and water, and brought me an air mattress! The visit and the hug were very welcome, too. Please pray for Tom, her nephew (in late 20s) who was only diagnosed in June and who, like Kevin, will be living with inoperable tumor. He has a lot to process as he recovers. And, pray that the disease stays in remission.
Okay. You’re now about as informed as I am. Time for a nap!!!
Love and gratitude for you,
Roni
Kev is recovering so well that he did not have to go to ICU following surgery, as we all expected. I am writing from his room, trying to get this out before I am lulled to sleep by his soft snoring and the hum of the IV machine. He is experiencing minimal pain; it's being managed very well by a non-opiate drug -- he'll get his strength back sooner without opiates.
Out With the Spleen
It took five hours to get through the significant adhesions before they could even begin to remove the spleen.
Doc said it was enormous, making him sick. Depending on how long it’s been that big (remember, CT scans lie), it might have had something to do with how hard the chemo was on him.
Once the spleen was out, the platelet count went back up. Yay!
No Other Tumor Removed
Despite the encouraging report I received during the surgery, in the end the mesentery tumor was not removed. Too many adhesions, plus problems with blood supply it attached itself to would have resulted too much bleeding and too much small intestine coming out with it if removed. The loss of small intestine would have resulted in greatly diminished quality of life.
Though we would have preferred it out, Dr. L said after taking a thorough look at it, he does not think that the mesentery tumor poses a threat (read bowel obstructions) in the foreseeable future, if ever. Sigh of relief. We'll know more in the coming days.
Follow Up Chemo?
We will get results of pathology report next week, probably Wed. In the mean time, Dr. L. expects that we’ll see the tumor markers drop significantly in the next couple of days as he thinks it likely that the spleen activity was the sole cause of the rising markers.
Based on what he saw, Dr. L. thinks that the tumor was not only on the outside of the spleen, but also invaded it. If it turns out that there was disease inside the organ, I’m guessing that may mean more chemo to insure against systemic spread, but haven’t had that conversation with doctor yet. We’ll cross that bridge when we get to it. What Dr. L. did say was that if Kevin does have chemo in the future, he thinks that having that diseased spleen out will help Kevin tolerate it much better.
Oh No, You Need a Spleen…
Once when Kevin was telling someone about all the innards he had removed during his Feb. 2004 surgery they replied that they didn’t realize one didn’t need those things, to which Kevin replied, “Oh no, you need them, you can just live without them.”
The spleen serves to ward off big, nasty viruses (like swine flu); without a spleen one is more susceptible to those bugs and things like pancreatitis. Kevin will be getting some major antibiotic doses and will always have to keep up with vaccines and flu shots.
Getting Sprung and Coming Home
Dr. Loggie says he wants to shoot for getting Kevin discharged from the hospital on Friday! Woo hoo! We’d then check into a local hotel until he’s had some more post op follow up and is healthy enough to fly. If all goes well, we should be home in less than two weeks. I’m not sure about total recovery time. Another bridge we can wait to cross.
Thanks!!
For the emails and facebook messages. Words of encouragement are not just a gesture, they really are encouraging. Thanks for taking time out of your day to send them. I'm sorry I haven't been able to respond to most, but I've appreciated every one and saved all for Kevin to read when he's up to it.
And a special thanks to my new PMP Awareness friend, Rosemary S. who was in Omaha tending to her nephew who had recent surgery with Dr. Loggie for PMP. Before driving home to Chicago today, she ran around to local stores to find a robe for Kevin, bought me cereal and water, and brought me an air mattress! The visit and the hug were very welcome, too. Please pray for Tom, her nephew (in late 20s) who was only diagnosed in June and who, like Kevin, will be living with inoperable tumor. He has a lot to process as he recovers. And, pray that the disease stays in remission.
Okay. You’re now about as informed as I am. Time for a nap!!!
Love and gratitude for you,
Roni
Surgery update -- 5 hours in
I got my last update a bit before noon CT. The liaison told me all is fine, and that they were getting ready to remove the spleen. Five hours to get to that point! When I asked if it was going slowly because of adhesions and/or bleeding, I was told that they are being “meticulous.” Ah yes, now I remember how this goes -- vague answers to specific questions.
The important thing is that I am told all is going well, and happy news – they have cleared their way to where they can see the mesentery tumor, and they plan to remove it once they’ve taken the spleen. Yay!! Thanks for all prayers that they could get that tumor during this surgery.
I neglected to ask how much longer the surgery is expected to take, but I’m sure I would have received a vague answer anyway. If I were in the surgeon’s shoes, I wouldn’t want to commit to specifics either, so I understand. I knew this day would be all about waiting,…
Assuming that the next update they give me doesn’t contain any surprising news, I’ll wait until the procedure is over and I’ve talked to the doc before I post again.
Thanks for all the emails and voice mails. It really helps me to know that despite sitting alone in a waiting room in Omaha, I’m not alone at all. You people are the best!
Roni
The important thing is that I am told all is going well, and happy news – they have cleared their way to where they can see the mesentery tumor, and they plan to remove it once they’ve taken the spleen. Yay!! Thanks for all prayers that they could get that tumor during this surgery.
I neglected to ask how much longer the surgery is expected to take, but I’m sure I would have received a vague answer anyway. If I were in the surgeon’s shoes, I wouldn’t want to commit to specifics either, so I understand. I knew this day would be all about waiting,…
Assuming that the next update they give me doesn’t contain any surprising news, I’ll wait until the procedure is over and I’ve talked to the doc before I post again.
Thanks for all the emails and voice mails. It really helps me to know that despite sitting alone in a waiting room in Omaha, I’m not alone at all. You people are the best!
Roni
Kevin went into surgery at 7:00 am
His spirits are good, considering… The entire staff here is so warm and gifted at putting people at ease. Not surprisingly, Kevin drew upon his humor to keep himself and the nurses laughing while waiting. But when he couldn’t think of a joke, he was pretty subdued, thinking about waking up with that NG tube and days of pain and weakness ahead of him. But I reminded him that though he feels helpless and weak lying on that gurney, he’s a warrior to be reckoned with.
The surgical staff informed us that blood tests showed that his platelet count is on the low side. Dr. L said that can either be caused by an unhealthy spleen (which is coming out) or be a marrow issue. It puts Kevin at extra risk for bleeding, so Dr. L. said he’s taking the IHCP option (heated chemo) off the table – it’s just too harsh. He’ll take the spleen out first and see if the platelet count goes up before determining what additional surgery he feels is safe to do. Please, please pray that the platelet counts come up and they are able to proceed with taking out the tumor on the mesentery. That’s the one that could cause real problems (bowel obstructions) down the road, so we want it out!!! Taking it out in a future surgery after getting platelets up I guess is an option, but Kevin has had enough surgeries. I really want this to be the last one he’ll need.
I’ll be getting my first update from the surgical team at about 9:00 CT.
Until then, thanks for the prayers!!!! Roni
The surgical staff informed us that blood tests showed that his platelet count is on the low side. Dr. L said that can either be caused by an unhealthy spleen (which is coming out) or be a marrow issue. It puts Kevin at extra risk for bleeding, so Dr. L. said he’s taking the IHCP option (heated chemo) off the table – it’s just too harsh. He’ll take the spleen out first and see if the platelet count goes up before determining what additional surgery he feels is safe to do. Please, please pray that the platelet counts come up and they are able to proceed with taking out the tumor on the mesentery. That’s the one that could cause real problems (bowel obstructions) down the road, so we want it out!!! Taking it out in a future surgery after getting platelets up I guess is an option, but Kevin has had enough surgeries. I really want this to be the last one he’ll need.
I’ll be getting my first update from the surgical team at about 9:00 CT.
Until then, thanks for the prayers!!!! Roni
Monday, July 27, 2009
What to expect -- it depends...
This is Roni writing from Kevin’s hospital room. He’s been admitted, fed Jello, pricked, EKG’d... All the usual pre-admission stuff with the usual result – “otherwise healthy”. It’s a blessing that he’s going into the surgery strong.
The reason for the wide range of possibilities is that the CT scans don’t:
- always show all disease; per Dr. L., CT scans “lie” a lot. But Kevin’s have been consistent enough that his are somewhat more reliable than most.
- show extent of scar tissue, which is a huge factor in what can be successfully removed
The good news is that even with worse case scenario – can’t successfully remove tumors – chemo is still an option. But we are praying that the outcome of the surgery will be cure, or at very least, remission and chemo will not be needed to keep the disease from progressing. Basically, we are asking G-d to restore quality of life as well as length of days.
It’s standard with these abdominal surgeries to give a private room and have the caregiver stay with the patient, so Kev’s hospital room is home base for both of us until the morning. They’ll come at about 6:00 a.m. Central time to take him to the OR. In between answering questions, getting X-rays, etc., Kev’s been listening to music, trying to rest some and battling his nerves. Just being in a hospital room and wearing the gown brings back a lot of memories, none of them pleasant. He has been buoyed up by the emails and facebook messages he’s received since we left home yesterday. What wonderful, caring people we have in our lives!!
Contacting us:
To reach Kevin, emailing (kevkersey@me.com) or leaving comments on this blog are best. That way he can read as he feels up to it. Plus, he’ll have the dreaded NG tube in for the first few days, so it will hurt to talk.
601 N. 30th St.
Omaha, NE 68131
We feel the love and prayers,
Sunday, July 26, 2009
Preparing For The Next Battle
So, everyone knows that I am going in for my 4th surgery to deal with my cancer, and if you didn’t know, you do now.
Today, Roni and I are flying to Omaha, and Monday, I check into the hospital. I’ll do the obligatory “pre-admission” testing, and hopefully no CT scan. Then in the afternoon start the “bowel prep”. Yes, that is as bad as it sounds. :-)
Tuesday morning, they’ll come get me, hook me up to an IV, wheel me into the OR and put me to sleep. This will be the hard part for Roni. Waiting.
The doctor believes there are two spots he can get easily, and two others he says he will try to get if there is not too much scar tissue. The amount of scar tissue will also determine if he uses heated chemo during the surgery.
What we are praying for, is that the doctor is able to get all of the tumor. That the recovery will be quick, and uneventful. That Roni will be able to get much needed rest, while at the same time, being able to keep an eye on me. And that in less than 2 weeks, we’ll be on our way home.
Roni will keep you all updated on my progress until I am able to take over.
To close on a personal note, I can’t help but remember my hospital buddy from my last two surgeries in Washington DC. Her name was Alice Hyland, and she was diagnosed with the same cancer I have. She had her MOAS just a day or so later then I did. She was back in the hospital in July 2004, for a follow-up surgery, just a week after I had mine.
I remember her parents visiting me every day, just to check in and see how I was doing. I remember sitting in her room, chatting. I remember walking the halls together, dragging our IV poles with us.
I remember finding out she passed away about two years ago. She was only 29 years old.
I told my wife that I would continue fighting. I’m fighting for Roni. For my family. For my friends. For my fellow PMP patients. And I’m fighting for the memory of those whose battle is over.
Please keep us all in your prayers.
Thank you,
Kevin
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