Hey everyone. Did you think that we fell off of the face of the earth?
Rather than posting "He is still breathing" over and over again, I thought that I would just update when there are changes (i.e. when he has scans or when he stops breathing).
Monday, Rob had his 3 month PET scan. Yesterday, we met with Dr. Greg Litton (oncologist) to discuss the scan.
The scan showed some increasing of the scary masses I posted about in September. Additionally, there are more of said scary.
In essence, he said that Rob is not dying right now. Phew! (I guess the fact that the only thing is, is that he is tired, but still breathing is a good indicator...) He is not curable, but we are looking at different treatments further down the road to slow the growth of the growthssss (heehehe).
Rob will have another scan in four months.
Friday, December 18, 2009
Thursday, September 17, 2009
Phew??
Well. Yesterday we met with Rob's oncologist.
The nasty that was on the right lobe is almost gone - what the?? I know! Amazing. We are going to celebrate that and not think about it (well, for at least another three months).
There is a bit of nasty on the left lung now. The doc is concerned about it, but the three of us decided not to think any more about it - until his next scan in December. At that time he will have a more detailed CT to help identify what exactly is showing in his left lung.
Right now, we are just counting our blessings and are sooooo grateful for the many prayers that have been said in Rob's behalf.
We are enjoying each other's company and are making many memories - regardless of what will happen. We don't want to take the time we have for granted.
The nasty that was on the right lobe is almost gone - what the?? I know! Amazing. We are going to celebrate that and not think about it (well, for at least another three months).
There is a bit of nasty on the left lung now. The doc is concerned about it, but the three of us decided not to think any more about it - until his next scan in December. At that time he will have a more detailed CT to help identify what exactly is showing in his left lung.
Right now, we are just counting our blessings and are sooooo grateful for the many prayers that have been said in Rob's behalf.
We are enjoying each other's company and are making many memories - regardless of what will happen. We don't want to take the time we have for granted.
Sunday, September 13, 2009
PET Scan tomorrow
Tomorrow, Rob will be going to IMED for his PET scan. He needs to be there bright and early.
He is taking a nap now. Today, he had a full day: got up at 7:30, ate breakfast, went to church (3 hours), and ate lunch. Just like most people, he is taking a Sunday afternoon nap.
I think that some of his tiredness is rubbing off on me. I am exhausted. I am ready for a month-long vacation with nothing to do, but sit on a beach somewhere.
Rob's family will be in town over the next week and one-half. One-third of his siblings live in Florida, so it will be fantastic to see them. Hopefully, Rob can keep up with the festivities and not sleep mid-sentence (in case you are wondering, he is not that bad, yet - but he has an uncanny ability to fall asleep during an action-packed-nail-biting movie).
Anyway...We will be meeting with his oncologist on Wednesday. I will update then.
He is taking a nap now. Today, he had a full day: got up at 7:30, ate breakfast, went to church (3 hours), and ate lunch. Just like most people, he is taking a Sunday afternoon nap.
I think that some of his tiredness is rubbing off on me. I am exhausted. I am ready for a month-long vacation with nothing to do, but sit on a beach somewhere.
Rob's family will be in town over the next week and one-half. One-third of his siblings live in Florida, so it will be fantastic to see them. Hopefully, Rob can keep up with the festivities and not sleep mid-sentence (in case you are wondering, he is not that bad, yet - but he has an uncanny ability to fall asleep during an action-packed-nail-biting movie).
Anyway...We will be meeting with his oncologist on Wednesday. I will update then.
Wednesday, August 12, 2009
X-ray Vision
As you know (or don't), Rob had an X-ray and met with his oncologist this week.
As Rob and I thought, there really wasn't any reason to get our knickers in a twist regarding the X-ray. In June, the spots that had magically appeared on his PET scan were relatively small - didn't really see much on the X-ray. I think that the X-ray was more like a security blanket for all parties involved.
So, my thinking is that since X-rays are not as sensitive as say, for instance, PET scans, they will not show as much. (My friend Ann told me that an X-ray is how lung cancer used to be diagnosed - aren't we glad that we have much better tools nowadays?)
The plan for the next little while is to get another PET scan in September and see what is going on in that itty-bitty thing we call Rob's right lung.
P.S. He is still breathing. He's ALIVE!
As Rob and I thought, there really wasn't any reason to get our knickers in a twist regarding the X-ray. In June, the spots that had magically appeared on his PET scan were relatively small - didn't really see much on the X-ray. I think that the X-ray was more like a security blanket for all parties involved.
So, my thinking is that since X-rays are not as sensitive as say, for instance, PET scans, they will not show as much. (My friend Ann told me that an X-ray is how lung cancer used to be diagnosed - aren't we glad that we have much better tools nowadays?)
The plan for the next little while is to get another PET scan in September and see what is going on in that itty-bitty thing we call Rob's right lung.
P.S. He is still breathing. He's ALIVE!
Sunday, July 5, 2009
I'm Not Dead Yet
On the way home from church today, Rob said to me, "I think that people think that I am close to dying. They seem surprised to see me walking around. They think that I should be on death's bed because the cancer is back."
I was talking to Elaine about it and she got the same feeling while talking to others. I was concerned that I said something in the blog, that he has one foot in the grave and the other is hanging perilously close to the edge. She assured me that I have not.
I know that recurrent cancer is not always a good thing, but seriously, he is not dead yet.
Dead men don't hike to Lake Katherine (or is it Catherine???) (three-hour round trip hike - uphill both ways! hehehe). We did this on Friday. He did, however, take a nice nap when we returned - but he did hike well.
To illustrate this, please read the the following quote from the immortal movie "Monty Python's Holy Grail:"
"The Dead Collector: Bring out yer dead. [a man puts a body on the cart]
Large Man with Dead Body: Here's one.
The Dead Collector: That'll be ninepence.
The Dead Body That Claims It Isn't (Rob): I'm not dead.
The Dead Collector: What?
Large Man with Dead Body: Nothing. There's your ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: 'Ere, he says he's not dead.
Large Man with Dead Body: Yes he is.
The Dead Body That Claims It Isn't: I'm not.
The Dead Collector: He isn't.
Large Man with Dead Body: Well, he will be soon, he's very ill.
The Dead Body That Claims It Isn't: I'm getting better.
Large Man with Dead Body: No you're not, you'll be stone dead in a moment.
The Dead Collector: Well, I can't take him like that. It's against regulations.
The Dead Body That Claims It Isn't: I don't want to go on the cart.
Large Man with Dead Body: Oh, don't be such a baby.
The Dead Collector: I can't take him.
The Dead Body That Claims It Isn't: I feel fine.
Large Man with Dead Body: Oh, do me a favor.
The Dead Collector: I can't.
Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won't be long.
The Dead Collector: I promised I'd be at the Robinsons'. They've lost nine today.
Large Man with Dead Body: Well, when's your next round?
The Dead Collector: Thursday.
The Dead Body That Claims It Isn't: I think I'll go for a walk.
Large Man with Dead Body: You're not fooling anyone, you know. Isn't there anything you could do?
The Dead Body That Claims It Isn't: I feel happy. I feel happy. [the Dead Collector glances up and down the street furtively, then silences the Body with his a whack of his club] (Rob has since banned all clubs in our home.)
Large Man with Dead Body: Ah, thank you very much.
The Dead Collector: Not at all. See you on Thursday.
Large Man with Dead Body: Right."
I was talking to Elaine about it and she got the same feeling while talking to others. I was concerned that I said something in the blog, that he has one foot in the grave and the other is hanging perilously close to the edge. She assured me that I have not.
I know that recurrent cancer is not always a good thing, but seriously, he is not dead yet.
Dead men don't hike to Lake Katherine (or is it Catherine???) (three-hour round trip hike - uphill both ways! hehehe). We did this on Friday. He did, however, take a nice nap when we returned - but he did hike well.
To illustrate this, please read the the following quote from the immortal movie "Monty Python's Holy Grail:"
"The Dead Collector: Bring out yer dead. [a man puts a body on the cart]
Large Man with Dead Body: Here's one.
The Dead Collector: That'll be ninepence.
The Dead Body That Claims It Isn't (Rob): I'm not dead.
The Dead Collector: What?
Large Man with Dead Body: Nothing. There's your ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: 'Ere, he says he's not dead.
Large Man with Dead Body: Yes he is.
The Dead Body That Claims It Isn't: I'm not.
The Dead Collector: He isn't.
Large Man with Dead Body: Well, he will be soon, he's very ill.
The Dead Body That Claims It Isn't: I'm getting better.
Large Man with Dead Body: No you're not, you'll be stone dead in a moment.
The Dead Collector: Well, I can't take him like that. It's against regulations.
The Dead Body That Claims It Isn't: I don't want to go on the cart.
Large Man with Dead Body: Oh, don't be such a baby.
The Dead Collector: I can't take him.
The Dead Body That Claims It Isn't: I feel fine.
Large Man with Dead Body: Oh, do me a favor.
The Dead Collector: I can't.
Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won't be long.
The Dead Collector: I promised I'd be at the Robinsons'. They've lost nine today.
Large Man with Dead Body: Well, when's your next round?
The Dead Collector: Thursday.
The Dead Body That Claims It Isn't: I think I'll go for a walk.
Large Man with Dead Body: You're not fooling anyone, you know. Isn't there anything you could do?
The Dead Body That Claims It Isn't: I feel happy. I feel happy. [the Dead Collector glances up and down the street furtively, then silences the Body with his a whack of his club] (Rob has since banned all clubs in our home.)
Large Man with Dead Body: Ah, thank you very much.
The Dead Collector: Not at all. See you on Thursday.
Large Man with Dead Body: Right."
Wednesday, July 1, 2009
Surgery, again?
We met with Michael Collins (surgeon) tonight.
Unless he is convinced that surgery will add longevity to Rob's life or cure him, he will not do it. He feels as though there is no reason to put Rob through the surgery again.
When Dr. Collins performed surgery in January, he made sure that the margins were clean (the known cancer and its surrounding area was surgically removed).
He did give us some hope: he is not convinced that one of the spots is cancer - it could be some healing from the parietal lining that was removed in January. We like hearing good news.
The plan right now is to wait until the beginning of August for the X-ray and in September get a PET scan again. Hopefully, things won't have grown.
He suggested that we talk to Dr. Litton (oncologist) and see about the possibility of Tarceva (remember the post about the nasty rashes because of this targeted drug???). He thought that even though Rob's cancer did not show the markers needed to utilize this drug, ten percent of the time it will work.
Based on the kind of odds that Rob has shown during the last four years, he would have to be included in the ten percent. Doncha think?
Unless he is convinced that surgery will add longevity to Rob's life or cure him, he will not do it. He feels as though there is no reason to put Rob through the surgery again.
When Dr. Collins performed surgery in January, he made sure that the margins were clean (the known cancer and its surrounding area was surgically removed).
He did give us some hope: he is not convinced that one of the spots is cancer - it could be some healing from the parietal lining that was removed in January. We like hearing good news.
The plan right now is to wait until the beginning of August for the X-ray and in September get a PET scan again. Hopefully, things won't have grown.
He suggested that we talk to Dr. Litton (oncologist) and see about the possibility of Tarceva (remember the post about the nasty rashes because of this targeted drug???). He thought that even though Rob's cancer did not show the markers needed to utilize this drug, ten percent of the time it will work.
Based on the kind of odds that Rob has shown during the last four years, he would have to be included in the ten percent. Doncha think?
Thursday, June 25, 2009
The Meet
Rob and I met with Dr. Litton today.
- He doesn't think that surgery will be of any benefit, but he would like us to meet with Dr. Collins to get his opinion. I plan on making the appointment tomorrow. (The 'spots' are in hard-to-reach places [one next to his heart], so he would have to perform a thoracotomy to get to them.)
- Rob will have an x-ray done and meet with Dr. Litton in six weeks.
- Rob will have another PET scan in three months.
Saturday, June 20, 2009
SUVs: No, We Are Not Getting a New Car
I am not going to wax poetical. I am copying and pasting the 'findings' and 'impression' from the PET scan results.
Rob's comment was, "Looks like we've got a bunch of SUVs and it is not cars."
(SUVs are the level of uptake from the radiation - the higher it is, the greater chance of cancer. Last time, he had two sites with SUVs of: 5.5 and 3.7 [which, incidentally, they said that the 3.7 score was too low to be cancer, HA! Rob proved them wrong, didn't he?] and this time: 8.4, 6.5, and 5.2).
Looks like we are going to get a biopsy or two.FINDINGS: There is hypermetabolic activity noted at the site of multiple surgical clips along the medial aspect of the right lower lobe [the doctor is referring to his lone lobe - since the other two were removed, in case you are getting confused] where soft-tissue prominence is evident. This has a maximum SUV of 8.4 and is quite concerning for recurrent tumor. Additionally, contiguous with this site of abnormal activity islobulation of the posterior pleural margin on the right with associated hypermetabolic activity identified on the PET/CT scan with a maximum SUV of 6.2. One additional site of hypermetabolic activity is noted anteriorly along the pleural margin (image 107) where additional pleural-based lobulation is noted.
This has amaximum SUV of 5.2.
IMPRESSION: Hypermetabolic activity associated along the right lung base at the site of surgical clips and with the lobulated pleural thickening, predominantly observed posteriorly although a focus is also noted anteriorly. The appearance is quite concerning for recurrent/metastatic lung cancer.
Rob's comment was, "Looks like we've got a bunch of SUVs and it is not cars."
(SUVs are the level of uptake from the radiation - the higher it is, the greater chance of cancer. Last time, he had two sites with SUVs of: 5.5 and 3.7 [which, incidentally, they said that the 3.7 score was too low to be cancer, HA! Rob proved them wrong, didn't he?] and this time: 8.4, 6.5, and 5.2).
Friday, June 19, 2009
Hurry Up and Wait
Can I tell you how difficult it is to 'hurry up and wait'?
With all of Rob's previous scans, the report was posted quickly and I was able to contact his doctor's office the next day to hear the findings.
His doctor's office called me today at and told me that the report has not posted because the nuclear medicine radiologist hasn't looked at the scan.
So. We wait. Hopefully, he will know that there are a bunch of people waiting on pins an needles for him to read, dictate, and post his findings.
With all of Rob's previous scans, the report was posted quickly and I was able to contact his doctor's office the next day to hear the findings.
His doctor's office called me today at and told me that the report has not posted because the nuclear medicine radiologist hasn't looked at the scan.
So. We wait. Hopefully, he will know that there are a bunch of people waiting on pins an needles for him to read, dictate, and post his findings.
Tuesday, June 16, 2009
Dog, Snake, and Rat
You are asking me, "What is with the title of this blog?"
Oh, oh, oh! Let me tell you. A dog, snake, and rat have something in common. They are all pets. Yes. Rob will be getting his PET scan on Thursday this week.
In my rush to get the information posted last night, I didn't really answer the burning questions that I posed to the doctor's office.
So, thank goodness for pets. They tend to calm us when we are stressed. (Or is it the other way around?)
Oh, oh, oh! Let me tell you. A dog, snake, and rat have something in common. They are all pets. Yes. Rob will be getting his PET scan on Thursday this week.
In my rush to get the information posted last night, I didn't really answer the burning questions that I posed to the doctor's office.
- We don't know whether his cancer is back. "It is never a good thing when something that size shows up in a scan. It would be a good idea to get a PET scan to see what kind of uptake the nodule shows," said the PA to the worried wife.
- Yes, the chances are pretty high that he has a broken rib. Remember the pneumonia he had in May? Well, with all of the coughing and hacking he did, I'm surprised that he didn't break more of them. Poor guy had to hold onto his side for dear life during every cough, for fear his remaining lobe would shoot out through his healed incision.
- Liver? Don't know. Hopefully, there is no cancer in that organ. The PET scan will let us know how much metabolic activity is happening there.
So, thank goodness for pets. They tend to calm us when we are stressed. (Or is it the other way around?)
Monday, June 15, 2009
Deja vu?
"Ahhhhh!"
No, that is not me breathing a sigh of relief.
So. As you may remember from the last blog entry, Rob had his three-month CT this morning. Luckily, we were able to read the report online. Unluckily, we don't speak 'doctor.'
Let me relate to you some of the phrases that were in the report:
Bottom line: what the, huh? Rob's oncologists office called me at 4:30 tonight to answer questions. (I called the office this morning upset, I guess six hours is a decent amount of time to call someone back when they are falling apart.)
Rob will be getting another PET scan (remember the drinking of nasty Kool-aid-type drink and then getting a super-duper powerful shot of radioactive isotope to see what kind of paranormal activity he has roaming around in his body?). We should find out soon when he will get his PET scan.
More information to follow.
Does this feel like deja vu to you?
Seriously.
No, that is not me breathing a sigh of relief.
So. As you may remember from the last blog entry, Rob had his three-month CT this morning. Luckily, we were able to read the report online. Unluckily, we don't speak 'doctor.'
Let me relate to you some of the phrases that were in the report:
There is a nodular feature at the periphery of the right upper lobe best seen on image #34 and this measures 5 mm in diameter. There are a few associated linear densities. This was not definitely visualized on the prior exam from 01/07/09. There is some volume loss and a few coarse linear changes in the right base and there is a tiny effusion at the right base. The left lung is clear and no left effusion. So, he has more cancer?
On the prior exam there has been resection of a portion of the posterolateral aspect of the right 7th rib. The remaining ribs had appeared intact. On the current exam again noted is resection of the right 7th rib but there now is a fracture with some displacement in the 8th rib posterolaterally and then a nondisplaced fracture through the medial most aspect of the left 9th rib with some callus formation in that region. So, he has a broken rib?
A portion of the upper abdomen was included, and there appears to be an enhancing lesion in the lateral segment of the left lobe of the liver best seen on image #55. This was not appreciated on the exam from January 2007 which was a noncontrast exam. There is a questionable subtle low attenuating lesion in that region on the prior exam. On the contrast enhanced exam from 09/02/08 this was not seen. There is an old contrast enhanced CT of the abdomen from 12/30/05 and there is a subtle lesion in this region on that exam. Suspect this is a hemangioma though is not as well seen on that prior exam. (History: he did have a spot on his liver 3.5 years ago, but they thought it was just fine - so, is this getting bigger? Is it really cancer?)
Bottom line: what the, huh? Rob's oncologists office called me at 4:30 tonight to answer questions. (I called the office this morning upset, I guess six hours is a decent amount of time to call someone back when they are falling apart.)
Rob will be getting another PET scan (remember the drinking of nasty Kool-aid-type drink and then getting a super-duper powerful shot of radioactive isotope to see what kind of paranormal activity he has roaming around in his body?). We should find out soon when he will get his PET scan.
More information to follow.
Does this feel like deja vu to you?
Seriously.
Thursday, June 11, 2009
The Weekend Countdown
Today, Rob is going to give blood. This is something that he has to do prior to his CT scans to make sure that his liver is still functioning. (Heaven forbid something else breaks down, right? We already know that he is a defective model and since we forgot to purchase the extended warranty on him, we are out of luck. hehehe)
Just in case you were wondering what we are going to do the next week, I thought I would lay it out for you...
(He did go 3.5, well, 3.2 years without it coming back - so I am thinking that it would be abnormal if it came back this soon - RIGHT??? It has only been five months since his surgery.)
So, what I am trying to say is this: if you pray, please do so. If you don't, think about doing so.
What is even better than this? Doing it again in September! YAYAYAYAYAY! (I can hardly wait.)
Just in case you were wondering what we are going to do the next week, I thought I would lay it out for you...
- Thursday: 4 pm - give blood
- Friday: all day - think about the scan
- Saturday: all day - think about the scan
- Sunday: all day - take a break from thinking about the scan - since it is a day of rest
- Monday: 8:15 am - get the scan
- Monday: all day - think about the scan
- Tuesday: 9 am - Jessica to call oncology office to find out the results of the scan
- Tuesday: until 5 pm - wait until the doctor calls back
- Tuesday: 12 noon-ish - go online to myhealth.com (Intermountain's super-cool website that allows their patients to go and look up their some of their medical information, including, but not limited to, x-rays, scans, blood work, did I mention scans?) -- This will only work, if the radiologist gets it in the system ASAP, otherwise, see the above step.
- Wednesday - July 31: all day/night - breath a sigh of relief, since everything will be just fine.
(He did go 3.5, well, 3.2 years without it coming back - so I am thinking that it would be abnormal if it came back this soon - RIGHT??? It has only been five months since his surgery.)
So, what I am trying to say is this: if you pray, please do so. If you don't, think about doing so.
What is even better than this? Doing it again in September! YAYAYAYAYAY! (I can hardly wait.)
Friday, May 29, 2009
There and Back Again
Rob went to Germany had productive meetings and had a delightful time. The best part of the whole trip is that I went with him! We didn't decide until four days before his departure that I was going to accompany him.
The flight was less that it would cost to go from Salt Lake City to New York - so how could we pass it up?
It was time well spent and I feel very much needed - for both of us.
By the time it was seven most nights, Rob was exhausted from walking all over (cobblestones, need I say more?) - but we had a fantastic time being with each other.
The flight was less that it would cost to go from Salt Lake City to New York - so how could we pass it up?
It was time well spent and I feel very much needed - for both of us.
By the time it was seven most nights, Rob was exhausted from walking all over (cobblestones, need I say more?) - but we had a fantastic time being with each other.
Tuesday, May 12, 2009
Two Months Later
Well, in case you are all wondering, Rob is still breathing. The last two months have been a little rough what with all his coughing and hacking. He had pneumonia. He ended up being on antibiotics two different times. He is almost done with this last course and is feeling better.
He is still tired (you should see the naps that man can take and then still go to sleep at night - it is amazing!), but he is working and doing things around the yard (planting a garden so we can enjoy the fruits of his labor in the summer).
Rob is going to Germany on Saturday for a super-fast trip for his work. I think that he will be in the plane longer than he will be in the Vaterland (Fatherland). I told him that I want him to bring me home a dirndl (see picture below). This one only costs $269! What a bargain!
No need to worry about whether he will get sufficient naps on the plane. I am sure that he will.....zzzzzzzzzzzzzzzzzz
He is still tired (you should see the naps that man can take and then still go to sleep at night - it is amazing!), but he is working and doing things around the yard (planting a garden so we can enjoy the fruits of his labor in the summer).
Rob is going to Germany on Saturday for a super-fast trip for his work. I think that he will be in the plane longer than he will be in the Vaterland (Fatherland). I told him that I want him to bring me home a dirndl (see picture below). This one only costs $269! What a bargain!
No need to worry about whether he will get sufficient naps on the plane. I am sure that he will.....zzzzzzzzzzzzzzzzzz
Tuesday, March 31, 2009
Back to Work?
Well. Last week Rob worked half-days. He says that he is doing well. So, when he falls asleep at 8 pm - I tend not to believe him.
Yesterday and today he worked a full day. We shall see how early he passes out at the end of the week.
Does anyone want to take any bets?
Someone gave me a great idea to change the blog name (thanks, Rustin!), since Rob is not going to receive chemo. His idea was:
breathlessinsaltlake.blogspot.com
Another idea is:
lobelessinsaltlake.blogspot.com
Does anyone want to put in their two pieces?
Yesterday and today he worked a full day. We shall see how early he passes out at the end of the week.
Does anyone want to take any bets?
Someone gave me a great idea to change the blog name (thanks, Rustin!), since Rob is not going to receive chemo. His idea was:
breathlessinsaltlake.blogspot.com
Another idea is:
lobelessinsaltlake.blogspot.com
Does anyone want to put in their two pieces?
Monday, March 16, 2009
Good News & Markers
We've got some good news and some good news...
Rob's CT came back clean! See! No sense in worrying, right??? (We shall see how well I am doing before the next scan in June.) The report was hilarious: "There is evidence for prior right lower lobe and right middle lobe resection." Really? What gave that away?
The other good news (or bad?): Rob does NOT have the EGFR marker in his tumor. By the way, if you are interested, the tumor was sent to the University of Colorado Health Sciences Center. The actual wording was: "This tumor expresses EGFR weakly by immunohistochemistry and is FISH negative. No predictive mutations are identified. This tumor would appear to be unlikely to respond to EGFR blockade." EGFR blockade is the Tarceva (not having to take that is the good news, or if you are thinking the other way, not having to take that is the bad news).
If you are wondering what FISH is, it is not an underwater thingy that has gills and swims constantly. It is "fluroescence in situ hybridization" which means it is a process which looks at the internal structure of the cell.
So, we have made the decision to not have adjuvant chemotherapy or radiation. At this point, Rob will have CTs every three months, CTs with a PET scan every eight months. The PET scan picked up Rob's second tumor whereas the regular CT did not. However, PET scans often have false positives - no need for the added stress of thinking there is a tumor when there really isn't. Regular CTs have a finer resolution.
Are you thinking, "Well, if the regular CT has a finer resolution, why didn't it show the second tumor?" Yeah, that was my thinking as well. Apparently, the tumor was too small to see on a regular CT, but it showed up with 'hypermetabolic activity' (after Rob was pumped full of radioactive isotopes). I guess anything will show up if one has enough radioactive materials in their body.
Rob hopes to start work soon, if his boss and co-workers will have him back : ). (Call me if you don't, just in case, so we can let him down lightly...) hehehe.
He would love to get back into school as well - provided he can make it through an eight-hour work day and an additional seven hours of school/study time. Can you believe the schedule he was keeping? Yeah, neither can I. It has been fantastic having him home and around (even when he was taking many, many naps).
We are so grateful for the many, many prayers, thoughts, cards, meals, and calls on our behalf. We love you and feel so blessed to have so many wonderful people in our life!
We are not safe yet, but we are glad that the surgery part is over and that there is no chemo or radiation in the near future. YAY!!!!
Rob's CT came back clean! See! No sense in worrying, right??? (We shall see how well I am doing before the next scan in June.) The report was hilarious: "There is evidence for prior right lower lobe and right middle lobe resection." Really? What gave that away?
The other good news (or bad?): Rob does NOT have the EGFR marker in his tumor. By the way, if you are interested, the tumor was sent to the University of Colorado Health Sciences Center. The actual wording was: "This tumor expresses EGFR weakly by immunohistochemistry and is FISH negative. No predictive mutations are identified. This tumor would appear to be unlikely to respond to EGFR blockade." EGFR blockade is the Tarceva (not having to take that is the good news, or if you are thinking the other way, not having to take that is the bad news).
If you are wondering what FISH is, it is not an underwater thingy that has gills and swims constantly. It is "fluroescence in situ hybridization" which means it is a process which looks at the internal structure of the cell.
So, we have made the decision to not have adjuvant chemotherapy or radiation. At this point, Rob will have CTs every three months, CTs with a PET scan every eight months. The PET scan picked up Rob's second tumor whereas the regular CT did not. However, PET scans often have false positives - no need for the added stress of thinking there is a tumor when there really isn't. Regular CTs have a finer resolution.
Are you thinking, "Well, if the regular CT has a finer resolution, why didn't it show the second tumor?" Yeah, that was my thinking as well. Apparently, the tumor was too small to see on a regular CT, but it showed up with 'hypermetabolic activity' (after Rob was pumped full of radioactive isotopes). I guess anything will show up if one has enough radioactive materials in their body.
Rob hopes to start work soon, if his boss and co-workers will have him back : ). (Call me if you don't, just in case, so we can let him down lightly...) hehehe.
He would love to get back into school as well - provided he can make it through an eight-hour work day and an additional seven hours of school/study time. Can you believe the schedule he was keeping? Yeah, neither can I. It has been fantastic having him home and around (even when he was taking many, many naps).
We are so grateful for the many, many prayers, thoughts, cards, meals, and calls on our behalf. We love you and feel so blessed to have so many wonderful people in our life!
We are not safe yet, but we are glad that the surgery part is over and that there is no chemo or radiation in the near future. YAY!!!!
Thursday, March 12, 2009
Blood Draws & Scans
Yesterday Rob had some blood drawn because of his upcoming CT tomorrow. He has to get his levels checked out to see if he has any elevated levels (cancer, radation damage to his kidneys - from his constant CTs).
Tomorrow morning he will go have a CT to see if there is any cancer present. Funny thing, I am not even concerned about it. I figure that there is no way that any cancer could show this early on. Right?????
Before, I would have SO much anxiety two weeks prior to the scan and I would call the doctor's office first thing the next morning to find out the results, feeling much better afterward.
Rob's work called and invited him to a lunch meeting (a man has come into town to discuss the current projects). He sounded excited to have something to look forward to and to get out of the house. He left not long ago - yes, he drove himself! It will be great for him - thanks, Sarah!
Tomorrow morning he will go have a CT to see if there is any cancer present. Funny thing, I am not even concerned about it. I figure that there is no way that any cancer could show this early on. Right?????
Before, I would have SO much anxiety two weeks prior to the scan and I would call the doctor's office first thing the next morning to find out the results, feeling much better afterward.
Rob's work called and invited him to a lunch meeting (a man has come into town to discuss the current projects). He sounded excited to have something to look forward to and to get out of the house. He left not long ago - yes, he drove himself! It will be great for him - thanks, Sarah!
Wednesday, March 4, 2009
It's Not A Tumor - say it with an Austrian accent (think 'Kindergarten Cop')
Rob is continuing to gain strength. He still gets tired very easily, but tries his hardest to be fully functional while around the kids and me. That sounds really bad, doesn't it? Let me rephrase. He is very tired. If he doesn't take a nap, he wears out easily. He is generally ready to go to bed around 8:30 pm. I guess it will be easier for him to retire at a decent hour next week with the arrival of Daylight Saving Time.
Today he played "Phase 10" with Gabrielle - he told her that she was just like her Mom (that's me). She said, "Thank you!" Yes, she beat him at the game, just like I do. That was the highlight of my day!
My boss, Brent, heard back from his colleague at MD Anderson. Brent had outlined Rob's history, surgical, and pathology reports and other necessary information. This was the colleague's response:
At some point, we have to decide whether the treatment outweighs any possible benefit.
I have these nagging thoughts in the back of my mind, (I wonder how many people would feel this way, if they had to make this decision) that if we do nothing, it implies we are giving up, giving in to the cancer. Analytically, I know that by just being seen and having scans it does not mean that we are giving up. I just know how nasty the treatment is and what statistics are for another recurrence, etc.
We still have to wait for the tumor to come back from Denver (or at least the report - do you think that they will stick the tumor in an envelope and mail it back to Salt Lake? Hmmm, think on that. FRAGILE - do not bend, do not squish.).
I know, from watching Rob, that chemotherapy is an ugly beast, just waiting to take hold and consume its prey. It is awful. I think that he is tired now. Right. Chemotherapy exhaustion is just as bad, if not worse. Not to mention the side effects.
So, what does that mean? Basically, MD Anderson doctors are giving us the same information that the Cancer Review Board at Intermountain gave us. They just don't have enough data, enough science, to really make an informed decision to pass on to us.
So, we wait for the tumor.
While waiting, you could read the following story: Rob could have a worm in his lung instead of a tumor...THAT would be funny!
Today he played "Phase 10" with Gabrielle - he told her that she was just like her Mom (that's me). She said, "Thank you!" Yes, she beat him at the game, just like I do. That was the highlight of my day!
My boss, Brent, heard back from his colleague at MD Anderson. Brent had outlined Rob's history, surgical, and pathology reports and other necessary information. This was the colleague's response:
No additional advice internally. It is as I suspected. No additional benefit from adjuvant chemotherapy.Brent pointed out that the key phrase is "No additional benefit from adjuvant chemotherapy." He assured me that just because they are saying 'no additional benefit...' does not equate a death sentence. Well. That's good. Not quite ready for that juncture in life. He also said that doctors will often throw everything in the book at you to get you better - because they can - not because it is best for you.
At some point, we have to decide whether the treatment outweighs any possible benefit.
I have these nagging thoughts in the back of my mind, (I wonder how many people would feel this way, if they had to make this decision) that if we do nothing, it implies we are giving up, giving in to the cancer. Analytically, I know that by just being seen and having scans it does not mean that we are giving up. I just know how nasty the treatment is and what statistics are for another recurrence, etc.
We still have to wait for the tumor to come back from Denver (or at least the report - do you think that they will stick the tumor in an envelope and mail it back to Salt Lake? Hmmm, think on that. FRAGILE - do not bend, do not squish.).
I know, from watching Rob, that chemotherapy is an ugly beast, just waiting to take hold and consume its prey. It is awful. I think that he is tired now. Right. Chemotherapy exhaustion is just as bad, if not worse. Not to mention the side effects.
So, what does that mean? Basically, MD Anderson doctors are giving us the same information that the Cancer Review Board at Intermountain gave us. They just don't have enough data, enough science, to really make an informed decision to pass on to us.
So, we wait for the tumor.
While waiting, you could read the following story: Rob could have a worm in his lung instead of a tumor...THAT would be funny!
Thursday, February 26, 2009
Slacker
It has been pointed out to me that I have been negligent in updating my blog.
Other than saying "Rob is doing well, he continues to eat, sleep, and poop." I don't know what else to say. Hehehehe (again, like a baby). Well, that's not entirely true.
He is having lovely walks up Millcreek Canyon with his Dad every day to get his lung (and legs) working again. This morning, I spoke with Elaine (Rob's Mom) about the walk Steven (Rob's Dad) and Rob had yesterday. She had a conversation with Steven and asked if Rob had to stop at all during the 'walk' (more like hike) and he responded, "No, but I wanted him to." That is so like Rob - nonstop working until the task is done. He is a work-horse.
Good work, Rob! I don't think that his lung capacity will be what it used to, but I think that he will try his hardest to get it as high as he can. Breathe Deep!
Other than saying "Rob is doing well, he continues to eat, sleep, and poop." I don't know what else to say. Hehehehe (again, like a baby). Well, that's not entirely true.
He is having lovely walks up Millcreek Canyon with his Dad every day to get his lung (and legs) working again. This morning, I spoke with Elaine (Rob's Mom) about the walk Steven (Rob's Dad) and Rob had yesterday. She had a conversation with Steven and asked if Rob had to stop at all during the 'walk' (more like hike) and he responded, "No, but I wanted him to." That is so like Rob - nonstop working until the task is done. He is a work-horse.
Good work, Rob! I don't think that his lung capacity will be what it used to, but I think that he will try his hardest to get it as high as he can. Breathe Deep!
Friday, February 20, 2009
Belated Update or No New Information
DISCLAIMER: I started this entry late on Friday. I had to go to bed before finishing. I was going to complete it on Saturday and then again on Sunday, but since today is Monday, you can see that I didn't get around to it - hopefully, my mind will cooperate and I will sound somewhat intelligible. This entry is long: BEWARE...
It was a very long day today. We started off the day with a nice long meeting with a geneticist, Janet Williams, whom so graciously agreed to meet with us. After giving the medical history of Rob's family, it was determined that there really isn't a familial correlation with the cancer. They cannot rule out our children being high risk, but they also cannot rule out them having no risk. (How is that for an answer?)
At this time, there are no studies (that she could find) in which Rob can enroll. However, there is one study in which he could qualify if he has at least two other members of his immediate family with the same cancer. I may be completely off base, but I am guessing that none of his siblings or parents want to volunteer. (Let me know if you start having back pain, weird breathing, or other known lung cancer symptoms such as coughing up blood. We know an amazing pulmonologist.)
After the informative meeting, we met with Rob's radiation oncologist, John Thomson. Thursday evening, he held a meeting with other radiation oncologists from Logan to St. George (the northern to southern regions of Utah - in case you are not familiar with our geography). After presenting Rob's case, there was some discussion as to what these doctors would do, if Rob was their patient. They voted six to one in favor of NOT administering radiation again - at this time. That is to say, they are not ruling it out for the future.
I suppose that, that is good news??? When administering radiation, they are very careful to only use a 'safe' (I use that term loosely) levels for treatment. Last cancer go-round, Rob's heart received a quarter of that safe amount and his spinal column received half of the amount. Since, more than likely, they would radiate the same area, it would be a little risky (this is me talking, not the doctors).
To top off the day, we met with Rob's oncologist, Greg Litton. We got a little more information on the tumor that was sent to Denver. 'They' are looking to see if the tumor has certain EGFR markers:
If Rob's tumor has these markers, there may be a targeted medicine that he can take. It is called Tarceva - targeted means that the drug is meant for the tumor only; whereas, chemotherapy targets fast dividing cells (hair, tumor, hair, other organs, hair). One of the side effects is that he will have a face, chest, and back like a teenager, though (severe rash that looks a lot like acne).
Basically, we have a few options at this point:
1. Follow (if there are no markers)
2. Chemo (if there are no markers and/or if there are markers)
3. Tarceva (if there are markers)
So, needless to say, Rob and I have a lot to think about in the next few weeks. He still has another four weeks before he is completely healed and is able to tolerate any kind of treatment. His oncologist wanted him to keep the March CT and appointment (we scheduled these in September) and perhaps we may have the results for the EGFR mutation by then.
On another note, my boss, Brent James, has contacted his colleagues at MD Anderson (the highest rated cancer center in the United States) to see what their first thoughts are. At first glance, they have no data to suggest anything. (This sounds vaguely familiar...).
I said to Brent, "Wow. Not surprising, right?" His response was that it isn't, but it is. MD Anderson sees so many more cancer patients than us (they are located in Texas) - he was hoping that they might have some more data than Utah. He has asked them to look at Rob's case more closely and to see if there are any trials for which he might qualify. He will forward the response to me.
Below are a few links to find out more about the drug Tarceva, if you are interested.
EGFR Gene and Lung Cancer Drug Tarceva
Biomarkers Found That Predict Lung Cancer Patient Response To Therapy
Tarceva Side Effects
It was a very long day today. We started off the day with a nice long meeting with a geneticist, Janet Williams, whom so graciously agreed to meet with us. After giving the medical history of Rob's family, it was determined that there really isn't a familial correlation with the cancer. They cannot rule out our children being high risk, but they also cannot rule out them having no risk. (How is that for an answer?)
At this time, there are no studies (that she could find) in which Rob can enroll. However, there is one study in which he could qualify if he has at least two other members of his immediate family with the same cancer. I may be completely off base, but I am guessing that none of his siblings or parents want to volunteer. (Let me know if you start having back pain, weird breathing, or other known lung cancer symptoms such as coughing up blood. We know an amazing pulmonologist.)
After the informative meeting, we met with Rob's radiation oncologist, John Thomson. Thursday evening, he held a meeting with other radiation oncologists from Logan to St. George (the northern to southern regions of Utah - in case you are not familiar with our geography). After presenting Rob's case, there was some discussion as to what these doctors would do, if Rob was their patient. They voted six to one in favor of NOT administering radiation again - at this time. That is to say, they are not ruling it out for the future.
I suppose that, that is good news??? When administering radiation, they are very careful to only use a 'safe' (I use that term loosely) levels for treatment. Last cancer go-round, Rob's heart received a quarter of that safe amount and his spinal column received half of the amount. Since, more than likely, they would radiate the same area, it would be a little risky (this is me talking, not the doctors).
To top off the day, we met with Rob's oncologist, Greg Litton. We got a little more information on the tumor that was sent to Denver. 'They' are looking to see if the tumor has certain EGFR markers:
EGFR
The protein found on the surface of some cells and to which epidermal growth factor binds, causing the cells to divide. It is found at abnormally high levels on the surface of many types of cancer cells, so these cells may divide excessively in the presence of epidermal growth factor. Also called epidermal growth factor receptor, ErbB1, and HER1. http://www.cancer.gov/templates/db_alpha.aspx?CdrID=44397
If Rob's tumor has these markers, there may be a targeted medicine that he can take. It is called Tarceva - targeted means that the drug is meant for the tumor only; whereas, chemotherapy targets fast dividing cells (hair, tumor, hair, other organs, hair). One of the side effects is that he will have a face, chest, and back like a teenager, though (severe rash that looks a lot like acne).
Basically, we have a few options at this point:
1. Follow (if there are no markers)
2. Chemo (if there are no markers and/or if there are markers)
3. Tarceva (if there are markers)
So, needless to say, Rob and I have a lot to think about in the next few weeks. He still has another four weeks before he is completely healed and is able to tolerate any kind of treatment. His oncologist wanted him to keep the March CT and appointment (we scheduled these in September) and perhaps we may have the results for the EGFR mutation by then.
On another note, my boss, Brent James, has contacted his colleagues at MD Anderson (the highest rated cancer center in the United States) to see what their first thoughts are. At first glance, they have no data to suggest anything. (This sounds vaguely familiar...).
I said to Brent, "Wow. Not surprising, right?" His response was that it isn't, but it is. MD Anderson sees so many more cancer patients than us (they are located in Texas) - he was hoping that they might have some more data than Utah. He has asked them to look at Rob's case more closely and to see if there are any trials for which he might qualify. He will forward the response to me.
Below are a few links to find out more about the drug Tarceva, if you are interested.
EGFR Gene and Lung Cancer Drug Tarceva
Biomarkers Found That Predict Lung Cancer Patient Response To Therapy
Tarceva Side Effects
Monday, February 16, 2009
All Tired on the Western Front
Rob is like a newborn baby. He is awake for a few hours and then sleeps for a few hours. Ahhh, it is so cute.
This is where the similarity ends, though (in case you are wondering).
He is enjoying his time off work. Nice vacation, right? (Too bad we aren't really somewhere WARMER!!!) Actually, I think that he would much rather be going to work and school now.
Not much to report now, other than the sleeping and the healing and the sleeping.
We hope to have appointments very soon with the oncologist & radiation oncologist.
This is where the similarity ends, though (in case you are wondering).
He is enjoying his time off work. Nice vacation, right? (Too bad we aren't really somewhere WARMER!!!) Actually, I think that he would much rather be going to work and school now.
Not much to report now, other than the sleeping and the healing and the sleeping.
We hope to have appointments very soon with the oncologist & radiation oncologist.
Thursday, February 12, 2009
Abby Normal
Let's start with a joke:
What do you get when you have a room full of specialty doctors discussing Rob's case?
Answer: stumped
HAHAHAHA! Funny, huh? I still cannot stop laughing.
OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...
* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now
So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.
(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)
What do you get when you have a room full of specialty doctors discussing Rob's case?
Answer: stumped
HAHAHAHA! Funny, huh? I still cannot stop laughing.
OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...
* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now
So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.
(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)
Monday, February 9, 2009
Long enough wait?
I apologize profusely for the lag between the last post and this. It has been the longest week EVER.
On a pain scale of one to ten, Rob's pain was an 18. Needless to say, he was OK with the dying option last week. It was really just awful watching him have so much pain and not really be able to do anything for him.
He has cut back on his pain meds (seriously? I think that he is a masochist). See justification below:
OK. After a trip to the ER (six blissful hours) last week, Rob was sent home with three prescriptions. One being the medicine that docs prescribe when they are preparing patients for a colonoscopy. His high dosage of narcotics for two weeks basically rendered his bowels useless. (Is this more information than you wanted to hear? I know that EVERYONE that is reading this, loves Rob, so in essence, you DO want to hear, right???) He had severe nausea and he looked a lot like Homer Simpson (think: HUGE stomach).
Well, yesterday was a great day! His pain level was at a tolerable level - he says that he refuses to rate it anymore. Things are moving again (hehehe). All systems, go. He is feeling like a human being once again. (Thank goodness!)
Tomorrow the Tumor Review Board meets (we assume once again). We will see Dr. Collins on Thursday this week to find out the verdict. Ahhh! The suspense is killing us!
Here is a funny story that will make you laugh: Noah was rummaging through Rob's closet where he keeps his CamelPak (a backpack that has a container for water with a long clear tube that connects to an apparatus that you drink from while hiking). He pulls out the long clear tube and says, "Hey! Here's Daddy's chest tubes!" He then placed the clear tube next to his side and made a face that looked like he was sick and included his tongue hanging out. Rob and I thought it was pretty funny.
On a pain scale of one to ten, Rob's pain was an 18. Needless to say, he was OK with the dying option last week. It was really just awful watching him have so much pain and not really be able to do anything for him.
He has cut back on his pain meds (seriously? I think that he is a masochist). See justification below:
OK. After a trip to the ER (six blissful hours) last week, Rob was sent home with three prescriptions. One being the medicine that docs prescribe when they are preparing patients for a colonoscopy. His high dosage of narcotics for two weeks basically rendered his bowels useless. (Is this more information than you wanted to hear? I know that EVERYONE that is reading this, loves Rob, so in essence, you DO want to hear, right???) He had severe nausea and he looked a lot like Homer Simpson (think: HUGE stomach).
Well, yesterday was a great day! His pain level was at a tolerable level - he says that he refuses to rate it anymore. Things are moving again (hehehe). All systems, go. He is feeling like a human being once again. (Thank goodness!)
Tomorrow the Tumor Review Board meets (we assume once again). We will see Dr. Collins on Thursday this week to find out the verdict. Ahhh! The suspense is killing us!
Here is a funny story that will make you laugh: Noah was rummaging through Rob's closet where he keeps his CamelPak (a backpack that has a container for water with a long clear tube that connects to an apparatus that you drink from while hiking). He pulls out the long clear tube and says, "Hey! Here's Daddy's chest tubes!" He then placed the clear tube next to his side and made a face that looked like he was sick and included his tongue hanging out. Rob and I thought it was pretty funny.
Tuesday, February 3, 2009
Down the hall and to the right
Rob is adjusting nicely to his new home. He doesn't seem confused when we tell him where the bathroom is located. (hehehehe)
Apparently, the Tumor Review Board was NOT held today as orginially thought. It will be held next week (unless of course it isn't). Regardless, we will have to wait until our follow-up with Dr. Collins.
Even though Rob will have to be fully recovered (six to eight weeks) before receiving treatment, it is driving me crazy with the waiting. Funny how one little piece of information is so powerful.
Apparently, the Tumor Review Board was NOT held today as orginially thought. It will be held next week (unless of course it isn't). Regardless, we will have to wait until our follow-up with Dr. Collins.
Even though Rob will have to be fully recovered (six to eight weeks) before receiving treatment, it is driving me crazy with the waiting. Funny how one little piece of information is so powerful.
Sunday, February 1, 2009
Home Again
Finally. About 2 pm, Dr. Collins came in. After a discussion as to whether Rob should stay another day while figuring out his pain medicine or go home with an increase in his pain meds and hope for the best, we decided that Rob should come home.
After figuring out everything (apparently, getting high-profile narcotics is difficult), getting Rob dressed, out to the car and picking up other meds at another pharmacy (IMED didn't have everything) we were able to have a little family reunion around 4:30 tonight.
The kids were so excited to see Rob. The dog just came and sat by Rob's feet (this is something she doesn't do - she likes to run around too much). It was fantastic. It has been great having him home.
The Tumor Review Board meets on Tuesday, but we don't see Dr. Collins for two weeks. We may not have any information as to what Rob's treatment will be until then (unless of course, we do).
I am grateful to have our family under one roof again.
After figuring out everything (apparently, getting high-profile narcotics is difficult), getting Rob dressed, out to the car and picking up other meds at another pharmacy (IMED didn't have everything) we were able to have a little family reunion around 4:30 tonight.
The kids were so excited to see Rob. The dog just came and sat by Rob's feet (this is something she doesn't do - she likes to run around too much). It was fantastic. It has been great having him home.
The Tumor Review Board meets on Tuesday, but we don't see Dr. Collins for two weeks. We may not have any information as to what Rob's treatment will be until then (unless of course, we do).
I am grateful to have our family under one roof again.
Saturday, January 31, 2009
Day Twelve
Yesterday, around 4 pm, Rob had his chest tubes removed. It was pretty cool to watch. He wasn't very interested in watching or even hearing his nurse's running commentary. I took some pictures, but decided not to post them. I KNOW that Rob wouldn't appreciate me posting him looking like he was in pain.
The plan was to start with oral meds at 6 am (today) and put a cap on his epidural (not remove it until the pain was under control). After that, he would go home after several hours of being on oral medicine to control his pain.
His pain scale today started out at a three (with epidural) and is currently at a 6.5. Dr. Collins came in earlier and said that since his pain is not being controlled, he would see him tomorrow. So much for going home today. He is disgustingly cheerful, for someone in that much pain. Seriously.
They have just increased his meds again - he has been in pain for the majority of the day. Apparently, Percocet just isn't a good enough drug for Rob.
The chest tube site seems to be healing nicely. Glad to see that his body is cooperating.
Thank you Steven for sitting with Rob all day (I had Arbonne business to attend to - I needed a little bit of normalcy for the day). I am sure that it was exhausting watching your son writhe in pain.
The plan was to start with oral meds at 6 am (today) and put a cap on his epidural (not remove it until the pain was under control). After that, he would go home after several hours of being on oral medicine to control his pain.
His pain scale today started out at a three (with epidural) and is currently at a 6.5. Dr. Collins came in earlier and said that since his pain is not being controlled, he would see him tomorrow. So much for going home today. He is disgustingly cheerful, for someone in that much pain. Seriously.
They have just increased his meds again - he has been in pain for the majority of the day. Apparently, Percocet just isn't a good enough drug for Rob.
The chest tube site seems to be healing nicely. Glad to see that his body is cooperating.
Thank you Steven for sitting with Rob all day (I had Arbonne business to attend to - I needed a little bit of normalcy for the day). I am sure that it was exhausting watching your son writhe in pain.
Friday, January 30, 2009
Day Eleven
Last time Rob had the surgery, he went home on Day Ten. Hopefully, he will be coming home tomorrow.
Yesterday, his chest tube was clamped shut to see how he would do with no suction or drainage. There was no pain associated with shutting it off this time (YAY!). They took an x-ray to see how his pneumothorax was healing. He did really well until later in the day - it was hard for him to cough; he felt as though he couldn't catch his breath. They unclamped his chest tube and he felt better.
Dr. Adams came in this morning and re-clamped it and told him that he would receive an x-ray in about four to five hours to see the progress. His doctors would really like to send him home without his chest tubes, so for now, we just wait.
Yesterday, his chest tube was clamped shut to see how he would do with no suction or drainage. There was no pain associated with shutting it off this time (YAY!). They took an x-ray to see how his pneumothorax was healing. He did really well until later in the day - it was hard for him to cough; he felt as though he couldn't catch his breath. They unclamped his chest tube and he felt better.
Dr. Adams came in this morning and re-clamped it and told him that he would receive an x-ray in about four to five hours to see the progress. His doctors would really like to send him home without his chest tubes, so for now, we just wait.
Thursday, January 29, 2009
Day Ten
Before I begin, I have had a request to post the name of Rob's cancer. The name is Adenocarcinoma. His stage is IB (so much better than stage IV or terminal!!!).
Good Morning! This is such a fun roller coaster! Up and down, up and down! Today, my emotions are up. Rob is in little pain and his nausea is close to nothing. YAY!!!
This morning, I stopped in to see Rob before I came into work. Dr. Danielle Adams (the surgical resident) said that Rob is looking well. Every time his doctors see him, they ask him to couch. They look at his chest tube container and watch for the bubbles to form during the cough. The more bubbles, the greater the leak; fewer is better.
This is the chest tube container.
Another view.
There are a few things that are going to happen today: they are going to unhook the vacuum again this morning and later today, Rob will receive an x-ray to see how his pneumothorax is healing.
If it is getting better, then they will remove the chest tubes out tomorrow and he will go home Saturday after making sure the dosage of his oral meds is correct.
If it does not get better, then they will send him home with a cute little portable drainage thingy that we will need to empty three times a day. If he does go home with that, then we will go to see Dr. Collins (surgeon) about a week later. I was worried that we would have to go to Collins' office everyday, so that is a relief.
This is the cute little drainage thingy...
We will not know anything until later this evening. I will update as soon as I know anything!
Good Morning! This is such a fun roller coaster! Up and down, up and down! Today, my emotions are up. Rob is in little pain and his nausea is close to nothing. YAY!!!
This morning, I stopped in to see Rob before I came into work. Dr. Danielle Adams (the surgical resident) said that Rob is looking well. Every time his doctors see him, they ask him to couch. They look at his chest tube container and watch for the bubbles to form during the cough. The more bubbles, the greater the leak; fewer is better.
This is the chest tube container.
Another view.
There are a few things that are going to happen today: they are going to unhook the vacuum again this morning and later today, Rob will receive an x-ray to see how his pneumothorax is healing.
If it is getting better, then they will remove the chest tubes out tomorrow and he will go home Saturday after making sure the dosage of his oral meds is correct.
If it does not get better, then they will send him home with a cute little portable drainage thingy that we will need to empty three times a day. If he does go home with that, then we will go to see Dr. Collins (surgeon) about a week later. I was worried that we would have to go to Collins' office everyday, so that is a relief.
This is the cute little drainage thingy...
We will not know anything until later this evening. I will update as soon as I know anything!
Wednesday, January 28, 2009
Day Nine
Chest tubes are still attached to Rob's personage. Vacuum is still sucking. He is still draining. Once that stops happening, he may be able to have some MacGyver'd contraption to allow him to go home until they remove them.
His pneumothorax is still there (that's why they hooked him back up to the vacuum). It takes some time for those to heal.
We are unclear as to how going home will work, since we were told earlier that as long as he has his chest tubes, he will have an epidural to control the pain.
Rob is in great spirits. He seems as happy as a clam (who wouldn't with the amount of drugs - what pain? hehehe). He is ready to get out of here and go home to be with his family. (We would love him to be at home with us, as well.)
The kids came with Elaine after school today to visit Rob. Tarali and the kids raided the 'nutrution room' and found some ice cream. They came back to the room and ate their 'plunder' with their Dad.
His pneumothorax is still there (that's why they hooked him back up to the vacuum). It takes some time for those to heal.
We are unclear as to how going home will work, since we were told earlier that as long as he has his chest tubes, he will have an epidural to control the pain.
Rob is in great spirits. He seems as happy as a clam (who wouldn't with the amount of drugs - what pain? hehehe). He is ready to get out of here and go home to be with his family. (We would love him to be at home with us, as well.)
The kids came with Elaine after school today to visit Rob. Tarali and the kids raided the 'nutrution room' and found some ice cream. They came back to the room and ate their 'plunder' with their Dad.
Tuesday, January 27, 2009
Day Eight
Well, I guess we were too excited for the vacuum to be gone. Rob had to be hooked back up to the vacuum pump for his chest tubes. It turns out that his pneumothorax was getting worse. (At least he can fall asleep to the relaxing sounds of water bubbling. - That is the sound the vacuum pump makes.)
Rob has spent his day sitting in the chair in his room, enjoying a different perpective. He has an amazing view of the Wasatch Mountains (and Costco's parking lot). He is in good spirits and has a little pain (good thing for drugs, right?). He still has his nausea, however, the drugs for that aren't working too well.
Rob has spent his day sitting in the chair in his room, enjoying a different perpective. He has an amazing view of the Wasatch Mountains (and Costco's parking lot). He is in good spirits and has a little pain (good thing for drugs, right?). He still has his nausea, however, the drugs for that aren't working too well.
Monday, January 26, 2009
Day Seven
I had to work all day (actually all week) so Steven, Elaine, and Tarali took turns to check in on Rob. He had a good day. Apart from some nausea that started last night Rob had a great day. (Someone was smoking cigarettes in the hall way close to Rob's room - all the nurses were racing everywhere to catch the culprit to no avail.)
I picked up my kids and sister from the airport tonight at six and we went straight to the hospital to see Rob. He looked good - even the kids thought that he looked much better than he did on Friday before they left town.
He still has his chest tubes in, but is no longer hooked up to a vacuum (wow, that sounds pretty gross). He will have an x-ray tomorrow to determine what will happen next.
The end is in sight (the end of the hospital stint, that is).
I picked up my kids and sister from the airport tonight at six and we went straight to the hospital to see Rob. He looked good - even the kids thought that he looked much better than he did on Friday before they left town.
He still has his chest tubes in, but is no longer hooked up to a vacuum (wow, that sounds pretty gross). He will have an x-ray tomorrow to determine what will happen next.
The end is in sight (the end of the hospital stint, that is).
Sunday, January 25, 2009
Day Six
After I signed off yesterday, Rob's pain level shot up rather quickly. His pain level early in the day was a pleasant 1.5. Around 5 pm, it rose to a five. Then, his nurse came in and changed out the container that holds the waste from his chest tube. When she was moving the tubes around (not the ones that are inserted into his body), he just about jumped off the bed in pain. His pain level increased to an eight in a matter of seconds.
Rob and I are convinced that his body went into some sort of shock-mode. He was pale, cold to the touch, and very wet. He couldn't even speak. It was a little upsetting to see him move from one extreme to another so quickly.
Needless to say, today has been a much better day with his pain level at a three.
Our kids are enjoying themselves in the Arizona heat. (It is 70 degrees - makes me want to be there, too. You KNOW how much I like being cold.)
I am exhausted (do you see a trend forming?). I am being force-fed and made to take naps. I feel like a three year-old. Nice, huh? Just when I thought that I was an adult.
Rob and I are convinced that his body went into some sort of shock-mode. He was pale, cold to the touch, and very wet. He couldn't even speak. It was a little upsetting to see him move from one extreme to another so quickly.
Needless to say, today has been a much better day with his pain level at a three.
Our kids are enjoying themselves in the Arizona heat. (It is 70 degrees - makes me want to be there, too. You KNOW how much I like being cold.)
I am exhausted (do you see a trend forming?). I am being force-fed and made to take naps. I feel like a three year-old. Nice, huh? Just when I thought that I was an adult.
Saturday, January 24, 2009
Treadmill
The pain scale for the day has been at 1.5. He hasn't even had to push the button that gives him an extra shot of drugs to boost his epidural since last night. Can you believe it? Rob has felt so good. His pupils are not the size of pin pricks anymore.
He has walked laps around the floor and on the treadmill. He is feeling great. I am exhausted. I am ready for bed.
'Night.
He has walked laps around the floor and on the treadmill. He is feeling great. I am exhausted. I am ready for bed.
'Night.
Friday, January 23, 2009
Temples, Tucson, and Pathology Reports
Well, all I can say is that this has been an eventful day. Rob had a rough morning due to another change in his pain medicine. The pain nurse was in and out of the room several times trying to get things under control. Rob is trying to get a little sleep right now. He is exhausted from the pain. On a scale of one to ten, he was an eight.
The kids skipped school today to go to the open house of the LDS Draper Temple with Steven & Elaine. They thought that it was neat and glad that they went. There are beautiful paintings everywhere and they liked the baptizimal font. The railings around the font were brass colored, and Jacob wanted to know if they were gold. Jacob wanted to know why the tour only went through the men's dressing rooms and not the women's. Noah liked the crystals hanging from the chandaliers. Gabrielle liked the bride's room, especially the beautiul carpet. She reported to me that the door is double wide so the bride could fit through. (Her dress, not her body.) They were excited when their Grandma told them that their Dad helped Karl Quilter with the Angel Moroni that sits atop the temple.
My sister, Megan, who is here from Tucson helping me with the kids, decided this morning to take Sabrina, her daughter, back home to get her back to her regular schedule of dancing queen! She performed her Teddy Bear Picnic dance with such precision - look out! Megan thought that it would be a nice diversion for my kids to go with her for the weekend. So after deciding on the departure time, I ran around the house like a mad-woman packing all the things that they would need for the weekend trip (and forgetting many items - calling Megan five more times to put more things in the suitcase).
I drove them out to the airport and the kids were extremely excited. Jacob told me, "I feel like an adult!" He could hardly contain his excitement. He just called me and told me that he was on the plane. They will come back Monday night (yes, they will miss school on Monday - their teachers have been awesome to give homework that they can do while away - plus I am making them read books at Megan's).
Dr. Collins just came in. He said that the tumor in his lung was confined - the margins were negative (which means that there was no cancer around the outer edges of the removed lobe). The old margins (the area where Dr. Collins removed the bottom lobe last time) had a tumor in it - this is the area by his heart we were concerned about (the one that was attached to the chest wall and looked clean the other day - THIS is why you wait for the pathology report), but the area around it looked clean. The tumor had metasticized from the first cancer three years ago. The cancer cells were just too small to see last time.
The bronchial tube were cancer free. Dr. Collins said that the important thing is that his lymph nodes were clean as well. We asked Dr. Collins about the funky breathing he had (the breathing that he has had for nearly a year now and the whole reason we found out about the cancer). We were convinced that after Dr. Collins told us about the 'freak of nature' that Rob is (the bronchial tube adhering to the chest wall), that, that was the reason for the cellophane-sounding breathing. Well, Dr. Collins proved our theory wrong. He said he thought that it was due to the tumor choking the airways in the middle lobe. Hmmm. Something to think about. (If you start breathing like you have cellophane in your lungs, you might want to get that checked out.)
The kids skipped school today to go to the open house of the LDS Draper Temple with Steven & Elaine. They thought that it was neat and glad that they went. There are beautiful paintings everywhere and they liked the baptizimal font. The railings around the font were brass colored, and Jacob wanted to know if they were gold. Jacob wanted to know why the tour only went through the men's dressing rooms and not the women's. Noah liked the crystals hanging from the chandaliers. Gabrielle liked the bride's room, especially the beautiul carpet. She reported to me that the door is double wide so the bride could fit through. (Her dress, not her body.) They were excited when their Grandma told them that their Dad helped Karl Quilter with the Angel Moroni that sits atop the temple.
My sister, Megan, who is here from Tucson helping me with the kids, decided this morning to take Sabrina, her daughter, back home to get her back to her regular schedule of dancing queen! She performed her Teddy Bear Picnic dance with such precision - look out! Megan thought that it would be a nice diversion for my kids to go with her for the weekend. So after deciding on the departure time, I ran around the house like a mad-woman packing all the things that they would need for the weekend trip (and forgetting many items - calling Megan five more times to put more things in the suitcase).
I drove them out to the airport and the kids were extremely excited. Jacob told me, "I feel like an adult!" He could hardly contain his excitement. He just called me and told me that he was on the plane. They will come back Monday night (yes, they will miss school on Monday - their teachers have been awesome to give homework that they can do while away - plus I am making them read books at Megan's).
Dr. Collins just came in. He said that the tumor in his lung was confined - the margins were negative (which means that there was no cancer around the outer edges of the removed lobe). The old margins (the area where Dr. Collins removed the bottom lobe last time) had a tumor in it - this is the area by his heart we were concerned about (the one that was attached to the chest wall and looked clean the other day - THIS is why you wait for the pathology report), but the area around it looked clean. The tumor had metasticized from the first cancer three years ago. The cancer cells were just too small to see last time.
The bronchial tube were cancer free. Dr. Collins said that the important thing is that his lymph nodes were clean as well. We asked Dr. Collins about the funky breathing he had (the breathing that he has had for nearly a year now and the whole reason we found out about the cancer). We were convinced that after Dr. Collins told us about the 'freak of nature' that Rob is (the bronchial tube adhering to the chest wall), that, that was the reason for the cellophane-sounding breathing. Well, Dr. Collins proved our theory wrong. He said he thought that it was due to the tumor choking the airways in the middle lobe. Hmmm. Something to think about. (If you start breathing like you have cellophane in your lungs, you might want to get that checked out.)
Thursday, January 22, 2009
ICU - Day LAST!!!!
I am so happy to tell you that Rob is being transferred to the 4th floor as I write.
Last night was a really bad night - his epidural stopped working. After a few times of fine tuning, he is much better and his pain is under control.
I can hardly contain my excitement! Last time, he was three days in the ICU. Practice makes perfect, right? (hehehe)
For now, it feels good. We have jumped through two hurdles - 1. surgery, 2. ICU. We have a few more to go, but I am pleased with the care he has received and how well he is recovering. He is such an amazing man. (No wonder I married him.)
I am grateful for the calls, notes, dinners, e-mails, and comments on this blog. We are surround by angels.
xoxo
Last night was a really bad night - his epidural stopped working. After a few times of fine tuning, he is much better and his pain is under control.
I can hardly contain my excitement! Last time, he was three days in the ICU. Practice makes perfect, right? (hehehe)
For now, it feels good. We have jumped through two hurdles - 1. surgery, 2. ICU. We have a few more to go, but I am pleased with the care he has received and how well he is recovering. He is such an amazing man. (No wonder I married him.)
I am grateful for the calls, notes, dinners, e-mails, and comments on this blog. We are surround by angels.
xoxo
Wednesday, January 21, 2009
ICU - Day One, Continued
Rob is doing fantastic!
He looks so much better than last time. He is off of his blood pressure medicine. the nurse thinks that he will be out of the ICU tomorrow!!! YAY!!!
While I was there today he had a few firsts:
First steps (awww so cute!) - I really wished I had my camera to take his picture. Francis Clark, Tarali, and I were walking behind him, just waiting for his gown to flip open. It didn't though. Darnit!
First Solid Foods (he fed himself, though) - He had corn, rice, buttermilk chicken (well, two bites of it), and Black Forest cake (few bites of that, too).
First Bath - well, this is the second bath there. He has bathed many times before today - in case you were wondering. (That is why he smells so sweet!)
Last time, he was in the ICU for three days. He seems bound and determined to leave there earlier this time (and to leave the hospital altogether).
The kids will be happy to have him home again. They have been able to talk to him on the phone a few times and it is the highlight of their day.
He looks so much better than last time. He is off of his blood pressure medicine. the nurse thinks that he will be out of the ICU tomorrow!!! YAY!!!
While I was there today he had a few firsts:
First steps (awww so cute!) - I really wished I had my camera to take his picture. Francis Clark, Tarali, and I were walking behind him, just waiting for his gown to flip open. It didn't though. Darnit!
First Solid Foods (he fed himself, though) - He had corn, rice, buttermilk chicken (well, two bites of it), and Black Forest cake (few bites of that, too).
First Bath - well, this is the second bath there. He has bathed many times before today - in case you were wondering. (That is why he smells so sweet!)
Last time, he was in the ICU for three days. He seems bound and determined to leave there earlier this time (and to leave the hospital altogether).
The kids will be happy to have him home again. They have been able to talk to him on the phone a few times and it is the highlight of their day.
ICU - Day One
Rob is doing well. Last night his blood pressure dropped pretty low. They had to give him some medicine to keep it above 70 (keep in mind that the "normal/average" is 120 (systolic - the upper one). I asked the nurse why his blood pressure would drop so low. She thought that it had to do with the fact that he is young and normally has low blood pressure (115/60) or it was from the narcotics. She didn't think it was because of the amount of blood loss during the surgery.
This morning he is itchy from his pain meds so they cut back on part of the cocktail and gave him some anti-itch medicine. He had the same reaction after his first surgery.
Rob's Mom, Elaine, has been sitting at the hospital this morning - going in to visit him every hour (we can only stay for about 15 minutes at a time so as not to tire him). She says he looks good.
Rob's sister and Dad will go later and then I will follow after that.
Our children are doing OK. Jacob (12) and Gabrielle (10) seem to be handling it better than Noah. He was convinced last night that Rob was not coming home. He was beside himself. It was just sad. He asked me if he "was alive when Daddy had cancer last time." Poor little guy doesn't remember any of this since he was just barely four. (Or should I say lucky???)
This morning he is itchy from his pain meds so they cut back on part of the cocktail and gave him some anti-itch medicine. He had the same reaction after his first surgery.
Rob's Mom, Elaine, has been sitting at the hospital this morning - going in to visit him every hour (we can only stay for about 15 minutes at a time so as not to tire him). She says he looks good.
Rob's sister and Dad will go later and then I will follow after that.
Our children are doing OK. Jacob (12) and Gabrielle (10) seem to be handling it better than Noah. He was convinced last night that Rob was not coming home. He was beside himself. It was just sad. He asked me if he "was alive when Daddy had cancer last time." Poor little guy doesn't remember any of this since he was just barely four. (Or should I say lucky???)
Tuesday, January 20, 2009
Dessert
Dr. Collins just came in at 4:45 pm. Because of the radiation and past surgery scaring it was a very hard surgery. He sat down and looked exhausted. He wanted to know how we were (I think that we looked exhausted!). I asked him how he was - he looked worse than us. He kind of freaked us out, actually.
The first thing out of his mouth was, "It was a difficult case and he lost a lot of blood."
One of the fears was that the spot by the heart was cancer. Dr. Collins found that it was not. He said that Mother Nature gave him a scare. The bronchial tube had adhered to his chest wall (from the scaring, maybe?). So the good news is, what we thought was cancer in that spot, is not.
He took a bunch of nodules out that looked benign and sent them to pathology - they look atypical likely due to the radiation (thanks a lot, Tarali!).
The middle lobe was removed along with the nasty cancer (which looks contained). Last time, it was it was protruding out out of his lower lobe.
He took a sampling of the upper bronchial tree and at first look, it looks cancer free. YAY!!!
Rob and I had a difficult time deciding whether to have the surgery at LDS Hospital or here at Intermountain Medical Center. Dr. Collins said that it really was a good thing that it was done here. He had to use some instrumentation that is not available at LDSH. In fact, he had to pull some tools from his cardiac kit during the operation.
We tried to ask Dr. Collins about how long he would be in the ICU. He said that we are not allowed to ask questions that begin with "how long or what if." That was just the bit of comic relief that we needed.
We will receive a full path report in two to three days to confirm everything.
All I can say is that I am so grateful for modern medicine and prayers (miracles do happen). This is what we were praying for.
Noah (six) has been very worried that I would have to find him a new Daddy. Good thing that I don't have to do that yet. Tarali still wants me to find a new uncle (for him). : )
There are still a lot of unanswered questions. (Keep praying, please!)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
They called us about 15 minutes ago to let us go back and see him.
Ironically, when we walked in, the television was on. The program was "House." Tarali asked Rob, "You didn't get enough of the operating room, you have to watch it here?"
My Mom followed with: "That's in case they got the diagnosis wrong." You know how smart that Dr. House is (the drug addict doctor!)!
He looks so good. (Last time, he was gray and really out of it.) He was pink and responsive and in no pain! He was able to talk and answer questions. Our family will be taking turns over the next few days to visit him during his 'vacation' in the ICU.
The first thing out of his mouth was, "It was a difficult case and he lost a lot of blood."
One of the fears was that the spot by the heart was cancer. Dr. Collins found that it was not. He said that Mother Nature gave him a scare. The bronchial tube had adhered to his chest wall (from the scaring, maybe?). So the good news is, what we thought was cancer in that spot, is not.
He took a bunch of nodules out that looked benign and sent them to pathology - they look atypical likely due to the radiation (thanks a lot, Tarali!).
The middle lobe was removed along with the nasty cancer (which looks contained). Last time, it was it was protruding out out of his lower lobe.
He took a sampling of the upper bronchial tree and at first look, it looks cancer free. YAY!!!
Rob and I had a difficult time deciding whether to have the surgery at LDS Hospital or here at Intermountain Medical Center. Dr. Collins said that it really was a good thing that it was done here. He had to use some instrumentation that is not available at LDSH. In fact, he had to pull some tools from his cardiac kit during the operation.
We tried to ask Dr. Collins about how long he would be in the ICU. He said that we are not allowed to ask questions that begin with "how long or what if." That was just the bit of comic relief that we needed.
We will receive a full path report in two to three days to confirm everything.
All I can say is that I am so grateful for modern medicine and prayers (miracles do happen). This is what we were praying for.
Noah (six) has been very worried that I would have to find him a new Daddy. Good thing that I don't have to do that yet. Tarali still wants me to find a new uncle (for him). : )
There are still a lot of unanswered questions. (Keep praying, please!)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
They called us about 15 minutes ago to let us go back and see him.
Ironically, when we walked in, the television was on. The program was "House." Tarali asked Rob, "You didn't get enough of the operating room, you have to watch it here?"
My Mom followed with: "That's in case they got the diagnosis wrong." You know how smart that Dr. House is (the drug addict doctor!)!
He looks so good. (Last time, he was gray and really out of it.) He was pink and responsive and in no pain! He was able to talk and answer questions. Our family will be taking turns over the next few days to visit him during his 'vacation' in the ICU.
Third Course
Another call.
The nurse just called. She said that they were just closing up - it would be another 30 to 45 minutes. Phew! I am sure that Rob is relieved. I know that I am.
She mentioned that Dr. Collins would come out and talk to us when he is done.
Seriously, I am on pins and needles waiting!
Did I mention to you that yesterday I was doing a "Chief Inspector Dreyfuss" with my face? It was hilarious to Rob. Not so much to me. Rob and I were playing Phase 10 (I was winning, as usual) - totally minding my own business when my left cheek started making with the tick. Soooo annoying. I think that it was my body's response to all this UNWANTED!!! stress.
CLOUSEAU!
(OK, for all of you who don't understand my aforementioned reference: This is from the Pink Panther movies. Rob and I had a Pink Panther marathon when we were dating. During one of the movies, we held hands for the first time. Rob's sister, Angie, walked in and noticed the hand-holding and with an embarrased face, turned right around and exited the room. We thought that it was funny.)
Elaine tells me that it is awful that I have to explain my references - I have been reading the blog entries to Steve, Elaine, Gloria, and Megan to make sure that I am making sense - you should have seen the blank stares as I was reading this one - thus the explanation.
The nurse just called. She said that they were just closing up - it would be another 30 to 45 minutes. Phew! I am sure that Rob is relieved. I know that I am.
She mentioned that Dr. Collins would come out and talk to us when he is done.
Seriously, I am on pins and needles waiting!
Did I mention to you that yesterday I was doing a "Chief Inspector Dreyfuss" with my face? It was hilarious to Rob. Not so much to me. Rob and I were playing Phase 10 (I was winning, as usual) - totally minding my own business when my left cheek started making with the tick. Soooo annoying. I think that it was my body's response to all this UNWANTED!!! stress.
CLOUSEAU!
(OK, for all of you who don't understand my aforementioned reference: This is from the Pink Panther movies. Rob and I had a Pink Panther marathon when we were dating. During one of the movies, we held hands for the first time. Rob's sister, Angie, walked in and noticed the hand-holding and with an embarrased face, turned right around and exited the room. We thought that it was funny.)
Elaine tells me that it is awful that I have to explain my references - I have been reading the blog entries to Steve, Elaine, Gloria, and Megan to make sure that I am making sense - you should have seen the blank stares as I was reading this one - thus the explanation.
Second Course
Got another call.
He is doing well. They removed the scar tissue. They haven't removed the lobe yet.
Dr. Michael Collins (his surgeon) took some samples of the tissue from his chest wall. The sample is not from his lobe or the mediastinum. I was told that this is precautionary, because Dr. Collins likes to take samples from the surrounding areas just to be thorough.
He is doing well. They removed the scar tissue. They haven't removed the lobe yet.
Dr. Michael Collins (his surgeon) took some samples of the tissue from his chest wall. The sample is not from his lobe or the mediastinum. I was told that this is precautionary, because Dr. Collins likes to take samples from the surrounding areas just to be thorough.
Today's Special
After a night of semisleep, Rob awoke at 4 am, I followed suit at 4:30. (YUCK!!!) We were able to fall back asleep just to receive the wake up call from the nurse at 5:50 am. Wahoo! The day has started! Rob can hardly contain his excitement. (hehehe)
He had to shower with the "special cleanser" and then we waited the two hours for someone to get Rob for his 8:30 am date with the knife.
They just called to let us know that he is doing well. The surgery started about an hour ago (about 9:45 am). They will give us a call in a few hours to update.
Steve, Elaine (Rob's parents), Gloria (my Mom), and Megan (my sister) are here with me to keep me company.
Will post again when the next course is served (hehehehe). Poor Rob, he doesn't know how much fun I am having without him. ; )
The family last night - the kids wanted to say good night to their Daddy.
This picture is from this morning during the wait for the free ride to surgery! I really wanted to post the picture of Rob's half shaved upper body. He threatened me that if I did, he would post pictures of me (no, not what you are thinking - childbirth - I think that we have come to an agreement).
What you are reading is gallows humor. Trying to make light of an awful situation. (In case you think I am a) crazy, b) insensitive, or c) lame - I just wanted to let you know where I am coming from...)
He had to shower with the "special cleanser" and then we waited the two hours for someone to get Rob for his 8:30 am date with the knife.
They just called to let us know that he is doing well. The surgery started about an hour ago (about 9:45 am). They will give us a call in a few hours to update.
Steve, Elaine (Rob's parents), Gloria (my Mom), and Megan (my sister) are here with me to keep me company.
Will post again when the next course is served (hehehehe). Poor Rob, he doesn't know how much fun I am having without him. ; )
The family last night - the kids wanted to say good night to their Daddy.
This picture is from this morning during the wait for the free ride to surgery! I really wanted to post the picture of Rob's half shaved upper body. He threatened me that if I did, he would post pictures of me (no, not what you are thinking - childbirth - I think that we have come to an agreement).
What you are reading is gallows humor. Trying to make light of an awful situation. (In case you think I am a) crazy, b) insensitive, or c) lame - I just wanted to let you know where I am coming from...)
Thursday, January 15, 2009
Getting Ready
Alrighty. The surgery is now set officially for Tuesday at Intermountian Medical Center. We will need to be at the hospital before noon on Monday so Rob can get prepped for the big day.
We are busy cramming in as much family-time as possible since Rob will be incapacitated for six to eight weeks healing from his surgery.
We are keeping things as normal as we can for the kids. They are still going to school and keeping occupied with normal activities.
Rob is super-excited for Tuesday. It is all he can think and talk about. (I think that I would need to use water torture to get anything out of him regarding the surgery. He just told me that he is blocking it out of his mind. "Why would I want to think about it?")
I will add another post on Tuesday - surgery day.
Until then. xoxox
We are busy cramming in as much family-time as possible since Rob will be incapacitated for six to eight weeks healing from his surgery.
We are keeping things as normal as we can for the kids. They are still going to school and keeping occupied with normal activities.
Rob is super-excited for Tuesday. It is all he can think and talk about. (I think that I would need to use water torture to get anything out of him regarding the surgery. He just told me that he is blocking it out of his mind. "Why would I want to think about it?")
I will add another post on Tuesday - surgery day.
Until then. xoxox
Wednesday, January 14, 2009
Surgery Consult
We met with Dr. Michael Collins today. He will be the cardiothoracic surgeon that will remove Rob's right middle lobe.
He looked at the scans and biopsy results and came in to talk to us. He told us that Rob should do well with the surgery. Because Rob already had one lobe removed, his left lung is "primed" or is compensating for the loss. Now that he will be down to 1 1/3 lungs (hehehe) he should be ok with the surgery and recovery - it will not be as huge a shock as before to his body.
He is planning on removing the scar tissue from the last surgery and then he will remove the offending lobe. Additionally, after he removes the lobe, he will juggle everything that is left in Rob's cavity to take out the node (medical speak for the thingy that may or may not be cancer) in his mediastinum (the place by his heart). The doctor didn't seem worried about getting to the spot; it will be difficult, but it can be done. We asked him if he was concerned about the other node (the one not in his lung) and he said that he was, but he will remove it. A pathologist will be there at that point in the surgery to take a look at the two nodes to see if 1) the margins are clean (did they get it all??) and 2) whether the node in the mediastinum is cancer.
The surgery is scheduled for Tuesday, next week - we don't know which hospital yet. It will either be at IMED or LDSH. We will find out tomorrow.
Maybe I should have called this blog "lobeless in salt lake" instead of "hairless." Hmmmm. I recalled his last experience with the whole losing all his hair thing when creating the name of the blog.
We will not know until after his surgery and the Tumor Review Board looks at his case to see whether they (a group of docs) think his treatment should be.
Tuesday, January 13, 2009
PET Scan
All I can say is that this PET Scan experience was sooooo much better than the one three years ago.
There was no leaking IV, no bladder exploding. YAY!!! We got in at 7 am and we left about 9 am. Nice and easy. Ahhhh, the joys of radioactive isotopes!
We spoke with Dr. Pearl earlier than expected to learn the results of the PET Scan. His cancer seems to be only in his lung (sigh of relief). There is a 'hot spot' near his heart that is suspicious. We are not sure when we will find out whether it is cancer-related or an infection (as they present the same way on scans).
Tomorrow, we meet with Dr. Michael Collins. He is the cardiothoracic surgeon that performed the thoracotomy with lobectomy three and one-half years ago on Rob (opened him up and removed his right lower lobe).
The kids are doing their best to hang in there. They are having a rough time. Rob and I are plugging along as well. This seems surreal. I am sure that everything will work out for the best.
I am grateful to you; we have had an outpouring of love and support from so many people. Thank you, thank you, thank you.
Until tomorrow...
Monday, January 12, 2009
The Beginning
For the past year, Rob has been breathing kind of weird - it sounds as though he has cellophane in his lungs.
In the beginning of December he met with his pulmonologist, Dr. Jim Pearl (extraordinare) - the doc wanted Rob to have a bronchoscopy to see what what was going on. On the 12th, he had it. The procedure showed that nothing was wrong. Dr. Pearl told Rob that he wanted him to come back and have a CT in January.
Wednesday (January 7), Rob had a CT and met with Dr. Pearl again. It was an interesting visit. First he came in:
"Hi! How are you? How are you feeling? You look great! Didn't you get a CT today?"
"Yes, we brought it in. It is on your desk."
"Oh! That is why I couldn't see it - I will be back in a few minutes." (His desk is pretty messy.)
Ten minutes later he comes back in.
(note: tone is definitely different...)
"So, how are you feeling? Do you have any pain? Are you coughing up blood?"
"No, I really don't feel any different."
"Well, it looks as though the spot that showed up in September [we were told that it was probably due to the after effects of radiation] is double the size."
Many other questions asked. Blah, blah, blah...
"We can do one of three things:
1. wait and see what happens - I don't recommend this option.
2. Get a CT-guided biopsy, or
3. Get a bronchoscopy with a biopsy."
He then told us the pros and cons of the last two. We chose another bronch. We had the biopsy done on Friday. Dr. Pearl took 31 samples and personally walked them up to pathology.
Today, we had the follow-up appointment with Dr. Pearl to learn of the results.
It turns out that Rob's cancer is back.
Today, Rob had a lung capacity test done to see whether his lungs could take another lobectomy and then he had some blood work done to see his liver function.
Tomorrow at 7 am, Rob will get a PET scan to see where the cancer is (well, we know it is in his right middle lobe, but this is to see whether it has metastisized - spread throughout his body).
We will meet with Dr. Pearl on Wednesday to find out what the prognosis and plan of treatment will be (as far as surgery).
Three and one-half years ago, when Rob was first diagnosed, I developed an ulcer in my throat from talking so much. So rather than repeating myself over and over, I thought that I would update information in one place and let people learn about Rob's health this way. Of course, we still want to talk to all of you but rather than repeat all of the news about his cancer to each of you, we can save our phone/e-mail conversations for just the everyday talk that we usually do with our friends and family that love and care about us (and we, you).
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