Posted to Facebook this morning, Saturday, December 29 --
Glorious news:
Cam was discharged from the hospital last night around 10pm!
His brother Mike did an awesome job of getting our room settled with all our things at the SECU Family House (think Ronald McDonald House for non-kids). It's about a third of the price of a decent hotel room, and much more like a home environment with a huge communal kitchen and a few comfortable sitting/TV areas.
Cam continues to be an angel. If adversity reveals the true man, then I have married the truest gem conceivable.
He's had 10 dialysis treatments in 12 days, most averaging 3 or more hours. Now he gets the weekend off and dialyzes again Monday morning.
We anticipate we'll be here in North Carolina for at least 10 more days in order to have a one-week follow up with our surgeon, 3 dialysis treatments next week, and make arrangements for dialysis treatments to continue without a gap at home in Los Angeles.
I continue to feel confident that Cam's kidney failure is temporary -- the kidneys are just resting after the hot chemo -- but they'll be fully back soon enough.
Please keep sending your wonderful words of encouragement! Dialysis is extremely hard on a person, not to mention recovery from a HIPEC and having the diaphragm stripped.
Several kind hearts have asked where to send mail and I know I haven't responded to each one, so here's where we are for at least 10 days:
Cameron Deaver
SECU Family House
1970 Baldwin Lane
Winston Salem, NC
27103
Our unending thanks for all your support! He's managed to field a couple calls from siblings but is still pretty much just needing to rest full time. He sent a short, time-sensitive email to get a Christmas wish granted for his brother, and that first, short shot on the computer took . . . um . . . we'll just say it took a really long time.
But I'll give you the word when he's ready for phone calls, because he's certainly going to need peppy cheerleaders like all you angel friends to share your actual voices with him. For that and all you've done, again, you have my undying gratitude.
By the way, its been fairly unnerving that no one marches in and out of our room here at the family house. Going more than 15 minutes without an interruption during the day (I'm not exaggerating) and more than 40 minutes during sleeping hours is really foreign. Almost creepy even. ;)
Go live a wonderful day! Love, love, love, Krish — at SECU Family House- Winston Salem.
Saturday, December 29, 2012
Thursday, December 27, 2012
Certainly love Cam (& Dr. Levine's news!)
Yesterday morning (which feels like several days ago), I thought it was still Monday (it was Wednesday). And since I was sure it was Monday -- or Sunday? -- Friday was a long time away. And so my reaction was, "Who knows? Maybe. We'll at least humor the doctor about this possibility of only five more days."
But yesterday was, as I keep telling myself and you, Wednesday. And when someone pointed that out, I revised my inner response to Dr. Levine. "He's nuts," I said knowingly.
I said this to myself, of course. There's so little certainty when one lives in a hospital room, that I long ago gave up asserting certainty about anything -- even and especially what day of the week it is at any given moment. So I thought, somewhat certainly (because Dr. Levine saved his life, but I was the one actually monitoring Cam's every moment,) "Cam won't be leaving by Friday."
Good thing I didn't say it out loud. Oh, wait, I think I did. To Cam's brother, Mike. See what I mean about certainty? If it's not recorded in my blank book of thorough notes, it's haze, all haze.
Anyway, this afternoon Dr. Levine announced, "Well, we need to get you outta' here."
He's a pretty straight-shooter.
He says Cam will be discharged tomorrow!
We're not sure -- now that Dr. Levine has left our room of course -- exactly when tomorrow, seeing as another 3-hour dialysis is on the docket, and from check-in to check-out, the dialysis process is really more like 5 hours . . . buuuuut, details, schmetails.
How do we feel? Thrilled. I think. (Again, the certainty thing . . .). Also, we know that we're still tied to the hospital for awhile, as Cam will be treated as an "out-patient" for his "acute renal failure."
In non-doctor speak, that means this: no one has a reliable crystal ball with which to learn how long Cam will need dialysis. "Acute" is being used in its third definition: (for a disease), brief and severe (as opposed to chronic).
So, Cam will continue to return to the hospital for dialysis treatments three times a week.
But you live in Los Angeles, some astute (not to be confused with acute) reader reading this is saying.
Indeed. Could be a brutal commute to Winston Salem, North Carolina. Especially since qualifying for release from a hospital after one has been disemboweled and filled with poison does not necessarily mean one will feel robust enough to withstand a six-hour journey on a pressurized aircraft. Not only that, Dr. Levine and any decent HIPEC surgeon won't allow travel for about a week after discharge, and almost every HIPEC patient does have to travel, since there are few facilities in the country who can offer HIPEC.
Luckily, there are really wealthy people who are philanthropists, and a local philanthropist set up a "family house" for people who need to travel to hospitals. It's cheaper than a hotel, only a few years old, a few miles from the hospital, has a comfortable room waiting for us, a communal kitchen, and several "living" areas. As our mothers, who stayed there a week and two weeks, said about a hundred times, "You will just love it there."
So there you go. We will just love it at the SECU Family House in Winston Salem until Cam is thoroughly convinced, with certainty, that he's ready for the cross-country trip that generally genuinely wears out a healthy person.
And more certainly than I know that today's Thursday, I know there's NO WAY I'm putting him on an aircraft until he feels ready . . . you've mainly heard details of his kidney failure, but there were other unglorious details that as yet have not been published, including but not limited to severe breathing problems (he was still off and on oxygen all day yesterday), acute (as in severe but not permanent) nausea, and we shouldn't forget the pain from being disemboweled and filled with poison and having part of his diaphragm removed and a tube stuck through the remaining diaphragm with which to put in the hot poison, in order to kill the other poison growing in him.
So yeah, I'm not rushing the guy.
By the way, Dr. Levine -- who's a straight-shooter, remember -- consoled Cam in an interesting way the other day when Cam had a tiny moment of "I was healthy before I came in here, and you've nearly killed me." For the record, Cam would never say "You nearly killed me." That's me getting to his point and invoking poetic license.
So here's how Dr. Levine "consoled" Cam about being healthy and then having an 8-hour surgery and hot chemo bath: "Let me tell you a story I heard from a professor. A man decides he wants to see what it's like to jump off the top of the Empire State Building. So he does.
"About the time he's falling past the 40th floor, another guy sticks his head out a window and yells, 'Hey! How's it going?'
"The man falling yells back, 'It's GREAT so far!!' Obviously, we know what he'll be feeling very soon.
"Cam, you were that guy, and when you came in here, you were passing the 40th floor. You were feeling great, but if you had not come when you did for this procedure, you maybe would have had a year."
Sobering, right? If it's not, you weren't paying attention and should re-read, or you're heartless and should see a shrink.
Well, if you think that's sobering, you should hear how it was that we even ended up getting Cam to this hospital for this procedure.
But I'm tired of writing, so that will have to be another day. We'll generously call this a cliff-hanger that will hopefully get you to read the next post, since the story of the past four months preceding Cam's surgery are really quite inspiring and I really feel compelled to share them with anyone who has been following Cam's harrowing adventures, and quite frankly, to anyone who's mortal.
So tune in next time.
Oh. The Pee Report? About a tablespoon per trip the last couple of days (about a 1/2 cup total each day). But this morning we both nearly cried with gratitude when his first trip to the bathroom produced as much as the entire day yesterday. A whopping 50 cc's. (Half cup.)
And there wasn't water in my eyes at the time, but I swear my whole body was metaphorically crying during another cherished moment this morning. Cam and I experienced something that I've longed for these 17 days that I've been beside his bed.
He was able to hug me.
Monday, December 24, 2012
Christmas Eve Dialysis
Day 14 at Wake Forest Baptist Medical Center
Only half an hour left of tonight's dialysis. Three and a half hours total for today's session.
This is the 7th session in 9 days since he first began dialysis.
He's sleeping for the most part, which is a big improvement over his early sessions. It helps for him to have the permanent port in his chest, rather than the temporary one in his neck that was sensitive to movement and thus setting off alarms for the dialysis staff every other minute. No wonder dialysis was anxiety filled for him in those first days.
They're letting me sit by his bedside for this session. It's pretty empty and quiet here, so they can fudge the rules for Christmas Eve.
Dr. Ahmed and another doctor from our surgical team tracked me down to report news: no evidence of infection detected in the CT scan taken a few hours ago!
There is still some fluid in the areas that they aspirated and drained a few days ago (by the liver, where the spleen was, and near a lung), but it seems to be less fluid than last week and not indicative of infection.
They are still "aggressively worrying" about what has elevated his white blood cell count so drastically. Hopefully the 4 a.m. blood draw will shed some light before they visit on their 6:30 rounds -- apparently, baby red blood cells can look like white cells. Perhaps it's just been a miscount. They suspect (and I agree, with expert insight on this one) that he has a urinary tract infection (UTI). They won't know for a few days, after cultures have had chance to reveal if there's bacteria to grow . . . that is, if there was enough urine for a proper urinalysis! Until they know if and what bacteria they're dealing with, he'll get a broad spectrum antibiotic.
It's a relief to rule out a massive abdominal infection. It's disconcerting, though, that permanent dialysis may have been the cost (see my earlier post today for info on that). Of course, permanent dialysis may have already been in the cards. "Only time will tell," our surgeon Dr. Levine says. "Hopefully function will come back in a couple of months . . . it will never be 100%, but they could eventually come back 90%."
There's a beautiful scripture in the Book of Mormon that I recently texted to a friend in need. It says that there is no witness until after the trial of our faith.
Now, I could make a decent argument that our faith had been tried plenty before any of this cancer nonsense cropped up, but nevermind the past. What matters is what we're doing with the present.
With each new challenge or complication that pops up -- many of which there hasn't been time to share -- I go back to the time Cam and I shared in the LDS temple three weeks ago. I know that in response to our prayers about our decision to move forward with the HIPEC on December 10, we had a clear answer from our Heavenly Father. And He spoke in a way I could understand: the motor of anxiety that had been running full speed in my chest and frequently making it hard to breathe in previous weeks -- it went away as we sat and prayed in the temple. Without a semi-effective anti-anxiety pill. Just gone. Completely. It was the first time in at least three weeks that I had felt peace -- but not just peace. I felt such awesome, sublime, serene peace, that I was sad that the temple had to eventually close for the night and we had to leave.
It was so clear to me that everything would be okay. That was the feeling, and those were the words that repeatedly came into my mind.
So there you go. I'd prefer to be at the home of one of our dear mamas in Utah for Christmas, surrounded by our siblings and nieces and nephews. But I have what I want most. Cam is still with me, and everything will be okay. That's not just what I want most. That's everything.
Merry Christmas, dear family and friends! We love you as much as children love Christmas morning!
Only half an hour left of tonight's dialysis. Three and a half hours total for today's session.
This is the 7th session in 9 days since he first began dialysis.
He's sleeping for the most part, which is a big improvement over his early sessions. It helps for him to have the permanent port in his chest, rather than the temporary one in his neck that was sensitive to movement and thus setting off alarms for the dialysis staff every other minute. No wonder dialysis was anxiety filled for him in those first days.
They're letting me sit by his bedside for this session. It's pretty empty and quiet here, so they can fudge the rules for Christmas Eve.
Dr. Ahmed and another doctor from our surgical team tracked me down to report news: no evidence of infection detected in the CT scan taken a few hours ago!
There is still some fluid in the areas that they aspirated and drained a few days ago (by the liver, where the spleen was, and near a lung), but it seems to be less fluid than last week and not indicative of infection.
They are still "aggressively worrying" about what has elevated his white blood cell count so drastically. Hopefully the 4 a.m. blood draw will shed some light before they visit on their 6:30 rounds -- apparently, baby red blood cells can look like white cells. Perhaps it's just been a miscount. They suspect (and I agree, with expert insight on this one) that he has a urinary tract infection (UTI). They won't know for a few days, after cultures have had chance to reveal if there's bacteria to grow . . . that is, if there was enough urine for a proper urinalysis! Until they know if and what bacteria they're dealing with, he'll get a broad spectrum antibiotic.
It's a relief to rule out a massive abdominal infection. It's disconcerting, though, that permanent dialysis may have been the cost (see my earlier post today for info on that). Of course, permanent dialysis may have already been in the cards. "Only time will tell," our surgeon Dr. Levine says. "Hopefully function will come back in a couple of months . . . it will never be 100%, but they could eventually come back 90%."
There's a beautiful scripture in the Book of Mormon that I recently texted to a friend in need. It says that there is no witness until after the trial of our faith.
Now, I could make a decent argument that our faith had been tried plenty before any of this cancer nonsense cropped up, but nevermind the past. What matters is what we're doing with the present.
With each new challenge or complication that pops up -- many of which there hasn't been time to share -- I go back to the time Cam and I shared in the LDS temple three weeks ago. I know that in response to our prayers about our decision to move forward with the HIPEC on December 10, we had a clear answer from our Heavenly Father. And He spoke in a way I could understand: the motor of anxiety that had been running full speed in my chest and frequently making it hard to breathe in previous weeks -- it went away as we sat and prayed in the temple. Without a semi-effective anti-anxiety pill. Just gone. Completely. It was the first time in at least three weeks that I had felt peace -- but not just peace. I felt such awesome, sublime, serene peace, that I was sad that the temple had to eventually close for the night and we had to leave.
It was so clear to me that everything would be okay. That was the feeling, and those were the words that repeatedly came into my mind.
So there you go. I'd prefer to be at the home of one of our dear mamas in Utah for Christmas, surrounded by our siblings and nieces and nephews. But I have what I want most. Cam is still with me, and everything will be okay. That's not just what I want most. That's everything.
Merry Christmas, dear family and friends! We love you as much as children love Christmas morning!
CALLING ALL ANGELS!
"I foresee a Christmas miracle," someone said in a post last week.
There are new developments here, and a miracle is what we need.
The Pee Report: Since that 1/2 cup on Friday, there's been virtually nothing. Last night the nurses did an "in and out" urinary catheter and extracted 3 cc's -- maybe half a teaspoon. I never knew how precious pee is. Of course I knew that without it, we can't expel toxins from our body . . .
But we have an even bigger challenge than renal failure now . . .
I know -- what could possibly be more serious than kidney failure?
Well, Cam's white blood cell count spiked last night to 41,000. (Remember, it's been 31,000 for about 12 days, and someone who's had his spleen removed should only be up to 15 or 20,000 for a couple weeks. Normal count is about 5,000).
In addition, he and a fever of 101.9 during the night.
These two pieces of information bring up the question of infection . . . again.
Another CT scan is happening this very moment. It's scary because this time (unlike the last), they feel it's essential to use contrast dye to get the most accurate picture possible to spot infection (abscess, etc). The nephrologist (kidney doctor) stopped by to say that they usually say "never" to contrast dye for a dialysis patient.
But Cam's surgical oncologist says that missing (overlooking) an abdominal infection right now is more serious than kidney damage.
But the nephrologist says there's a risk of permanent dialysis.
Okay. It's done. So now let's pray the kidneys are doing ninja kicks to that contrast dye.
There are new developments here, and a miracle is what we need.
The Pee Report: Since that 1/2 cup on Friday, there's been virtually nothing. Last night the nurses did an "in and out" urinary catheter and extracted 3 cc's -- maybe half a teaspoon. I never knew how precious pee is. Of course I knew that without it, we can't expel toxins from our body . . .
But we have an even bigger challenge than renal failure now . . .
I know -- what could possibly be more serious than kidney failure?
Well, Cam's white blood cell count spiked last night to 41,000. (Remember, it's been 31,000 for about 12 days, and someone who's had his spleen removed should only be up to 15 or 20,000 for a couple weeks. Normal count is about 5,000).
In addition, he and a fever of 101.9 during the night.
These two pieces of information bring up the question of infection . . . again.
Another CT scan is happening this very moment. It's scary because this time (unlike the last), they feel it's essential to use contrast dye to get the most accurate picture possible to spot infection (abscess, etc). The nephrologist (kidney doctor) stopped by to say that they usually say "never" to contrast dye for a dialysis patient.
But Cam's surgical oncologist says that missing (overlooking) an abdominal infection right now is more serious than kidney damage.
But the nephrologist says there's a risk of permanent dialysis.
Okay. It's done. So now let's pray the kidneys are doing ninja kicks to that contrast dye.
Saturday, December 22, 2012
Rough Week Gives Way to Baby Steps
Hi, Everyone --
It's been a busy week. Thanks for your patience about getting an update . . .
Monday, Dec. 17
It's been a busy week. Thanks for your patience about getting an update . . .
Monday, Dec. 17
- CT scan of chest & intestines. Purpose: make sure his lungs aren't wet and intestines aren't bloated because his white count is too high, even for someone who's just had his spleen removed
- Dialysis
- These 2 events took from 2:30-10:30 p.m. Transport people come wearing their yellow and black scrubs, help him get on a stretcher, wheel him to one place, put him on yet another bed, doctors perform a procedure, then the transport people switch him back to a stretcher and finally to his own bed . . . and then the Dialysis department has a bed available . . . and so the whole bed-swapping begins again. It was very painful and exhausting.
- Really rough night. Cam shares with me (wife Krish) that since his first dialysis Saturday night, he's felt that everything in his body is completely shutting down.
Tuesday, Dec. 18
- Monday's CT scans revealed fluid by liver and where spleen had been.
- Back to Radiology department: they do an ultrasound-guided aspiration of these fluids. This means they use a long needle to get to the fluid and begin drawing it out. Then they insert a drainage tube in each side of his chest; the tubes drain into a fluid collection bag on the outside of each side of his chest.
- White count is up to 31,000. We're praying fluids found in the CT scans aren't from infection.
- Cam's bowels begin to function for first time.
- Dialysis -- 3 hours, including removal of 4 pounds of fluid.
- Cam frequently reports having constant and lengthy deja vu.
- Cam's mom works magic and gets a bed that he can be transported in and weighed in (weigh-in's are necessary before and after dialysis).
Wednesday, Dec. 19
- White count mostly the same: 31,900.
- In and out catheter: nurse is able to extract 100 cc's (1/2 cup) of urine for the past 48+ hours. Urine production is a sign as to whether the kidneys are working . . . so "some is better than none."
- Dialysis: 3 hours of isolated ultra filtration -- this means they only pull fluid off him, as opposed to dialyzing him, which is when they remove the toxins from the blood like a kidney would do. They're able to pull 8 more pounds of fluid off him by doing only isolated ultra filtration.
- Hemoglobin is low -- 6.6, but should be 12 or 13. During dialysis they give him a blood transfusion to boost his hemoglobin.
- Because bowels seem to function, he's finally permitted something more than sips of water: he's approved to have clear fluids, then all fluids, and so 9 days after surgery he has broth, juice, etc.
Thursday, Dec. 20
- Cam makes it to bathroom to sponge bathe mostly by himself for first time, 25-foot oxygen tube is necessary for the big venture.
- Dialysis: 3 hours. In last hour, I (Krisha) am called from waiting room to visit per Cam's request (they only allow 5-10 minutes.) I jump out of sleeping on a loveseat, visit Cam for 2 minutes, detect signs of fainting and request help -- each time I black out, I'm propped upright again. Once I'm taken to the waiting room I ask to lie down, don't get to, and I barf instead.
- Security comes, tells me that I have to go home or to Emergency Room in case I have the flu.
- I go to the Secu Family House where our moms have been staying. I sleep for most of the next 23 hours.
Friday, Dec. 21
- Cam gets "perma cath" for dialysis. The temporary port in his jugular vein was sensitive to movement, but a permanent catheter couldn't be inserted until cultures taken from extracted fluid by liver had been given 2-3 days to reveal if there was infection or not. No infection! The perma cath was inserted below the skin in his upper chest. He can go home with it when the time comes, and it can remain in him for weeks or months, and it allows quick hook up for dialysis.
- During perma cath procedure, Cam's also given a PICC line which will help with all the times they draw blood, since finding veins for IV and blood draws has been extremely challenging.
- Drainage tubes on each side of his chest are removed.
- Feeding tube removed. This was great joy to Cam, since he's had so much trouble breathing; he hated the tube taking air space up his nose and down his throat.
- And . . .
wait for it . . .
He peed! 100 cc's, the old-fashioned male way.
Dear kidneys, we love you. Please do more to show us that you'll come back to us.
Monday, December 17, 2012
Monday Morning, December 17
First, if you don't know what HIPEC is, please follow this link for an explanation -- it will only take about 4 minutes to watch, and until you do, you'll be pretty lost about Cam's situation. Nothing I explain below will make a whole lot of sense until you watch this:
http://www.hipectreatment.com/index.php
Cam's current status:
Cam still has not urinated or passed gas since his surgery last Monday, December 10. The organs don't like to be messed with and disrupted, and his were all literally man-handled while Dr. Levine looked and palpated for little tumors. So, the kidneys and bowels are taking a long time to "wake up."
Cam's had catheters off and on (mostly on) and in the past 24 hours has had less than 100 cc's of urine successfully extracted by the catheter (I should look at a conversion chart online, but my guesstimate of that amount by looking at the urine bag is that yesterday it collected half a cup at the most.) A grown man should be expelling more around 2 liters (8 cups).
Cam continues to be on oxygen and an IV. He's fed nutrition through a tube but is permitted to sip water or suck on ice chips.
Part of his diaphragm was removed during surgery,which is apparently very painful. Further, when the necessary drainage tube in his chest was finally removed on Thursday (maybe Wednesday?), it deflated part of his lung. So, he's struggled to breathe all week, first because of the drainage tube's presence in his chest and its irritation of everything around it, and now because of a partially deflated lung.
The enormous swelling throughout his body also makes it difficult for him to breathe. He's puffier than the Pillsbury Doughboy most of the time. He received about 10 liters of fluid during the surgery, which would cause anyone swelling. The first few days, the catheter drained decent amounts of urine, but that urine output pretty much suddenly stopped and by Saturday, the catheter drained next to nothing, leading to his first dialysis treatment.
We just had a visit from Dr. Levine, Cam's surgeon. We hadn't seen him since Friday night, although other members of the surgical team stop by on their rounds everyday at 6:30 a.m.
Here's the upshot of Dr. Levine's visit today:
Cam's white count is going up. Normal white count is 5,000. Someone who's had their spleen removed like Cam can expect to have white counts at 15-20,000 for a couple weeks. Cam's count is up to 30,000 this morning. Dr. Levine's ordering a CAT scan to make sure that we're not missing an infection or an abscess.
You may know that up until now I've been putting updates on Facebook. I've left my profile open, so I think even people without a Facebook account should be able to look at my page and see not only what I'm posting but also how friends around the world are responding. I knew Cam was loved and respected, but it's been humbling to learn through public and private messages the incredible impact he's had on people that frankly, I've never even heard of. It seems that he's been living beautifully and soulfully his whole life and with everyone he's ever associated with.
Anyway, if you have been on Facebook, you probably know by now that the heated chemotherapy part of Cam's surgery damaged his kidneys. Just now Dr. Levine said that kidney damage doesn't happen very often with HIPEC, but when it does, it's very serious.
Dr. Levine went on to say that kidney function usually restores itself in a couple of months. Personally, he's only had one case of someone needing dialysis after HIPEC, and that person did not need it permanently.
Cam's scheduled to have another round of dialysis in about 15 minutes. The physical therapist came by and helped Cam (who leaned on a walker) to make it about 4 feet down the hall and back -- way more moving than the minutes of walking in place or standing that he's managed so far. He's pretty exhausted now, and the dialysis will probably really wipe him out.
He's been pretty down this morning, although his presentation of being down still doesn't include anything close to complaining. His temperature was back up to 99.5, so we tried swabbing him down with cold washcloths again to cool him. As for being down: more of me praying over him and I kinda pushed watching something funny. Thank goodness for hulu.com and Modern Family.
Cam was trying to explain to Dr. Levine how over-stuffed he feels (and truly, his belly is much more distended than it was last night), and Dr. Levine reminded him that without the HIPEC he had last week, most people with Peritoneal Mesothelioma would have a prognosis of about a year.
We're lucky.
Thank you for the prayers and well wishes! We need them . . . and we also need humor. I think you can post comments here on the blog (I'm new to this), but if you aren't able to, send anything you wish Cam to receive to krishadeaver@gmail.com. And of course, I'll continue to read Cam every single wonderful post on Facebook.
Below is a place where you can enter your email address so that you receive a notification every time I post a new update here. I'll also put a notification on Facebook.
Mucho thanks to my sweet sister-at-heart, the uber-talented graphic designer Kristen Johnson for whipping together a cool blog design in no time flat. She has a full-time job, but I know she takes on free-lance jobs. Pretty sure she'll be okay with you having her contact info for those needs you may have to design cool things: kristenjohnson@gmail.com.
Thanks again everyone. We love you all!
P.S. We're all going to totally ignore any incoherence or type-o's in this or any future post, right?
http://www.hipectreatment.com/index.php
Cam's current status:
Cam still has not urinated or passed gas since his surgery last Monday, December 10. The organs don't like to be messed with and disrupted, and his were all literally man-handled while Dr. Levine looked and palpated for little tumors. So, the kidneys and bowels are taking a long time to "wake up."
Cam's had catheters off and on (mostly on) and in the past 24 hours has had less than 100 cc's of urine successfully extracted by the catheter (I should look at a conversion chart online, but my guesstimate of that amount by looking at the urine bag is that yesterday it collected half a cup at the most.) A grown man should be expelling more around 2 liters (8 cups).
Cam continues to be on oxygen and an IV. He's fed nutrition through a tube but is permitted to sip water or suck on ice chips.
Part of his diaphragm was removed during surgery,which is apparently very painful. Further, when the necessary drainage tube in his chest was finally removed on Thursday (maybe Wednesday?), it deflated part of his lung. So, he's struggled to breathe all week, first because of the drainage tube's presence in his chest and its irritation of everything around it, and now because of a partially deflated lung.
The enormous swelling throughout his body also makes it difficult for him to breathe. He's puffier than the Pillsbury Doughboy most of the time. He received about 10 liters of fluid during the surgery, which would cause anyone swelling. The first few days, the catheter drained decent amounts of urine, but that urine output pretty much suddenly stopped and by Saturday, the catheter drained next to nothing, leading to his first dialysis treatment.
We just had a visit from Dr. Levine, Cam's surgeon. We hadn't seen him since Friday night, although other members of the surgical team stop by on their rounds everyday at 6:30 a.m.
Here's the upshot of Dr. Levine's visit today:
Cam's white count is going up. Normal white count is 5,000. Someone who's had their spleen removed like Cam can expect to have white counts at 15-20,000 for a couple weeks. Cam's count is up to 30,000 this morning. Dr. Levine's ordering a CAT scan to make sure that we're not missing an infection or an abscess.
You may know that up until now I've been putting updates on Facebook. I've left my profile open, so I think even people without a Facebook account should be able to look at my page and see not only what I'm posting but also how friends around the world are responding. I knew Cam was loved and respected, but it's been humbling to learn through public and private messages the incredible impact he's had on people that frankly, I've never even heard of. It seems that he's been living beautifully and soulfully his whole life and with everyone he's ever associated with.
Anyway, if you have been on Facebook, you probably know by now that the heated chemotherapy part of Cam's surgery damaged his kidneys. Just now Dr. Levine said that kidney damage doesn't happen very often with HIPEC, but when it does, it's very serious.
Dr. Levine went on to say that kidney function usually restores itself in a couple of months. Personally, he's only had one case of someone needing dialysis after HIPEC, and that person did not need it permanently.
Cam's scheduled to have another round of dialysis in about 15 minutes. The physical therapist came by and helped Cam (who leaned on a walker) to make it about 4 feet down the hall and back -- way more moving than the minutes of walking in place or standing that he's managed so far. He's pretty exhausted now, and the dialysis will probably really wipe him out.
He's been pretty down this morning, although his presentation of being down still doesn't include anything close to complaining. His temperature was back up to 99.5, so we tried swabbing him down with cold washcloths again to cool him. As for being down: more of me praying over him and I kinda pushed watching something funny. Thank goodness for hulu.com and Modern Family.
Cam was trying to explain to Dr. Levine how over-stuffed he feels (and truly, his belly is much more distended than it was last night), and Dr. Levine reminded him that without the HIPEC he had last week, most people with Peritoneal Mesothelioma would have a prognosis of about a year.
We're lucky.
Thank you for the prayers and well wishes! We need them . . . and we also need humor. I think you can post comments here on the blog (I'm new to this), but if you aren't able to, send anything you wish Cam to receive to krishadeaver@gmail.com. And of course, I'll continue to read Cam every single wonderful post on Facebook.
Below is a place where you can enter your email address so that you receive a notification every time I post a new update here. I'll also put a notification on Facebook.
Mucho thanks to my sweet sister-at-heart, the uber-talented graphic designer Kristen Johnson for whipping together a cool blog design in no time flat. She has a full-time job, but I know she takes on free-lance jobs. Pretty sure she'll be okay with you having her contact info for those needs you may have to design cool things: kristenjohnson@gmail.com.
Thanks again everyone. We love you all!
P.S. We're all going to totally ignore any incoherence or type-o's in this or any future post, right?
Posted to Facebook, Saturday, December 16, 7:26 pm EST
Cam's in ICU getting a dialysis port. They're worried about his breathing when they have to lay him back to find a major vein -- please pray for his lungs and his kidneys and his peace. Thanks everyone. We feel your prayers. I've known since we went to our church's temple two weeks ago tonight that everything is going to be alright. But part of that process is what we do to show our faith, and that means declaring it and praying. Eager to be allowed to be with him again, but I'm visualizing a beautiful procedure and his beautiful lungs supplying deep breaths.
Cam's in ICU getting a dialysis port. They're worried about his breathing when they have to lay him back to find a major vein -- please pray for his lungs and his kidneys and his peace. Thanks everyone. We feel your prayers. I've known since we went to our church's temple two weeks ago tonight that everything is going to be alright. But part of that process is what we do to show our faith, and that means declaring it and praying. Eager to be allowed to be with him again, but I'm visualizing a beautiful procedure and his beautiful lungs supplying deep breaths.
Dialysis
Posted to Facebook Saturday, December 16, 6:17 pm
Dialysis soon tonight. It will be a definite challenge for doctors to put in the "dialysis catheter" or line for the dialysis -- which we're headed to the ICU to do.
Dialysis soon tonight. It will be a definite challenge for doctors to put in the "dialysis catheter" or line for the dialysis -- which we're headed to the ICU to do.
Not Kidding . . . It's the Kidneys
Okay. That title isn't exactly a bad pun, it's just bad.
Posted to Facebook, Friday, December 14, 2012
From Krisha, Cam's wife: Please say some more prayers for Cam. It's been a rough few days. The challenge of the moment is that the hot chemotherapy damaged his kidneys and we need them to resume function by morning or he'll need dialysis. Your comments help him enormously, too -- I've read him all of them. Thanks, everyone! The friends that together pray and send positive energy into the universe work miracles! xo
Posted to Facebook, Friday, December 14, 2012
From Krisha, Cam's wife: Please say some more prayers for Cam. It's been a rough few days. The challenge of the moment is that the hot chemotherapy damaged his kidneys and we need them to resume function by morning or he'll need dialysis. Your comments help him enormously, too -- I've read him all of them. Thanks, everyone! The friends that together pray and send positive energy into the universe work miracles! xo
Saturday, December 15, 2012
Cyto-Reductive Surgery + HIPEC Updates: THE Eight Hours
Posted to Facebook, Monday, December 10, 2012:
First call from the nurse in surgery; 7:40 EST: "surgery has begun and he's doing well."
Cam checked into the hospital at noon yesterday for pre-op. He characteristically kept all the staff chuckling with his good-natured ways, and he took all the pre-op stuff like a champ. Literally didn't even make a sour face about all they put him through.
Unfortunately, he had a really rough night. The antibiotics they gave him made him horrifically ill. He was as miserable as I've ever seen him before they wheeled him in, but the nurse who just called assured me that he finally indicated a little relief from the anti-nausea meds before they put him under.
Keep those wonderful calls, texts, posts, emails, prayers, and good thoughts coming! Let's send Cam enough messages to give him a full-day's worth of reading when he's well enough to read and listen to them!
---------------
Posted to Facebook:
2nd call from a nurse in surgery; 9:45 EST: "everything is progressing well and his body is responding well."
Since Peritoneal Mesothelioma doesn't show up well on CAT scans/PT scans, we've known that we wouldn't know the extent of Cam's disease until he was cut open. I asked the nurse if the doctor was seeing a lot of disease (it starts as a bunch of grains-of-sand-size nodules and spreads through the mucus/liquid/gel it creates).
But the nurse hadn't heard the doctor say yet how much disease he was seeing . . . she said that they go very slowly opening him up and getting in.
But it's progressing well! I've been praying all week that this will be a BEAUTIFUL surgery. It's happening. Prayers for Dr. Levine and his amazing staff. How grateful am I that a man has dedicated his life to this?
You're amazing, Cam!
----------------
Posted to Facebook:
The HIPEC is the hot chemo bath that they do inside the abdominal wall for 90 minutes to 2 hours AFTER they've removed all the cancer they can see/are able to remove. They've started the infusion of chemo now. So, in two hours they'll start closing him up!
The nurse couldn't say, but this likely means that there wasn't a lot of disease to extract because this surgery can take as long as 12 hours . . .
But not my Cam! He's a rockstar. Rockin' this surgery! HIPEC king Cam! Doin' a little HIPEC dance sitting here in the waiting room . . . so is his mom Dorothy, which is way cuter I'm sure.
-----------------
Posted to Facebook:
Last update from the nurse in the surgery before the doctor will come out at the end; 1:40 pm EST: they finished the infusion and said the doctor would be out in about an hour. He's still doing well!
We've loved that families in the waiting area get a call every two hours with an update. BRILLIANT. A little prevention and good communication quells a million doubts and worries. It's helped the day to speed along -- not to mention the company of two good mamas and Robert and Scott, two dear family friends who live here.
I think this means that the scariest part is past; now we pray for clean sutures and closure, and that not a single invisible cancer cell has been left behind.
First call from the nurse in surgery; 7:40 EST: "surgery has begun and he's doing well."
Cam checked into the hospital at noon yesterday for pre-op. He characteristically kept all the staff chuckling with his good-natured ways, and he took all the pre-op stuff like a champ. Literally didn't even make a sour face about all they put him through.
Unfortunately, he had a really rough night. The antibiotics they gave him made him horrifically ill. He was as miserable as I've ever seen him before they wheeled him in, but the nurse who just called assured me that he finally indicated a little relief from the anti-nausea meds before they put him under.
Keep those wonderful calls, texts, posts, emails, prayers, and good thoughts coming! Let's send Cam enough messages to give him a full-day's worth of reading when he's well enough to read and listen to them!
---------------
Posted to Facebook:
2nd call from a nurse in surgery; 9:45 EST: "everything is progressing well and his body is responding well."
Since Peritoneal Mesothelioma doesn't show up well on CAT scans/PT scans, we've known that we wouldn't know the extent of Cam's disease until he was cut open. I asked the nurse if the doctor was seeing a lot of disease (it starts as a bunch of grains-of-sand-size nodules and spreads through the mucus/liquid/gel it creates).
But the nurse hadn't heard the doctor say yet how much disease he was seeing . . . she said that they go very slowly opening him up and getting in.
But it's progressing well! I've been praying all week that this will be a BEAUTIFUL surgery. It's happening. Prayers for Dr. Levine and his amazing staff. How grateful am I that a man has dedicated his life to this?
You're amazing, Cam!
----------------
Posted to Facebook:
The HIPEC is the hot chemo bath that they do inside the abdominal wall for 90 minutes to 2 hours AFTER they've removed all the cancer they can see/are able to remove. They've started the infusion of chemo now. So, in two hours they'll start closing him up!
The nurse couldn't say, but this likely means that there wasn't a lot of disease to extract because this surgery can take as long as 12 hours . . .
But not my Cam! He's a rockstar. Rockin' this surgery! HIPEC king Cam! Doin' a little HIPEC dance sitting here in the waiting room . . . so is his mom Dorothy, which is way cuter I'm sure.
-----------------
Posted to Facebook:
Last update from the nurse in the surgery before the doctor will come out at the end; 1:40 pm EST: they finished the infusion and said the doctor would be out in about an hour. He's still doing well!
We've loved that families in the waiting area get a call every two hours with an update. BRILLIANT. A little prevention and good communication quells a million doubts and worries. It's helped the day to speed along -- not to mention the company of two good mamas and Robert and Scott, two dear family friends who live here.
I think this means that the scariest part is past; now we pray for clean sutures and closure, and that not a single invisible cancer cell has been left behind.
Before They Wheel Him In , Dec. 10
Cam’s Facebook Post, 12/10/12, 3:11 a.m.
Lovely People of the World ~
I'm signing off for a bit -- not sure when I'll be human again, probably sometime after Tuesday.
I cannot begin to say how much your kind messages, calls, letters, visits, smiles, hugs, kisses and other communications have meant to me over the last months.
I've been calm and confident and surprisingly at peace, and I can only credit all the grace and strength and be
I'm signing off for a bit -- not sure when I'll be human again, probably sometime after Tuesday.
I cannot begin to say how much your kind messages, calls, letters, visits, smiles, hugs, kisses and other communications have meant to me over the last months.
I've been calm and confident and surprisingly at peace, and I can only credit all the grace and strength and be
auty I
see in the people around me.
I know I owe many of you a reply -- forgive me -- but know that you have already made my day today easier than I could have imagined.
Okay, no more paragraphs beginning with "I" -- just a monstrous THANK YOU!
More to come...
Hugs all around ~
I know I owe many of you a reply -- forgive me -- but know that you have already made my day today easier than I could have imagined.
Okay, no more paragraphs beginning with "I" -- just a monstrous THANK YOU!
More to come...
Hugs all around ~
Cam
------------------------------------------
Krisha’s Facebook Post, 12/10/12, 5:27
a.m.
Wonderful
friends ~
I need your continued prayers, positive thoughts and beautiful energy. Cam goes into surgery in about half an hour here at Wake Forest Baptist Medical Center in North Carolina.
Regular chemo-therapy is ineffective for Peritoneal Mesothelioma, so he will undergo a cyto-reductive surgery and HIPEC procedure. If you want a new level of admiration for this good man and his incredible, serene attitude towards this cancer, watch this 4 minute illustrated video of what will happen during his probably 8-hour surgery:
http://www.hipectreatment.com/index.php
I need your continued prayers, positive thoughts and beautiful energy. Cam goes into surgery in about half an hour here at Wake Forest Baptist Medical Center in North Carolina.
Regular chemo-therapy is ineffective for Peritoneal Mesothelioma, so he will undergo a cyto-reductive surgery and HIPEC procedure. If you want a new level of admiration for this good man and his incredible, serene attitude towards this cancer, watch this 4 minute illustrated video of what will happen during his probably 8-hour surgery:
http://www.hipectreatment.com/index.php
Rest
assured that we are both at peace about this treatment, this doctor, this
timing. My hope is to spend some of the time he's cut open today to record some
of the many little but not little miracles that have happened in the last four
months as we've endeavored to find help and resources. I'm becoming of the mind
that God inspires miracles by putting little thoughts in the minds of
individuals -- ways to reach out that they may think are insignificant -- and
that those many hearts and hands generate an energy and circle of connectedness
that produce the miracles.
Again, thank you for the thoughts and prayers and endless kindnesses. We have felt your prayers, and that goodwill has sustained us . . . particularly me in the difficult moments.
I've been thrilled to reconnect with so many dear friends once I finally got on FB, and I know I still owe many of you a personal response. Please forgive . . . we've been a little preoccupied. ;)
The entourage is arriving -- time to change these slippers for some walking shoes.
Again, thank you for the thoughts and prayers and endless kindnesses. We have felt your prayers, and that goodwill has sustained us . . . particularly me in the difficult moments.
I've been thrilled to reconnect with so many dear friends once I finally got on FB, and I know I still owe many of you a personal response. Please forgive . . . we've been a little preoccupied. ;)
The entourage is arriving -- time to change these slippers for some walking shoes.
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