The last couple of weeks have been really busy. Almost not a moment to sit and relax until now. Monday, the 27th of April, my cousin from New York, Dawn, came in for the week for the event and to help out for the week. This was the week before chemo was scheduled to begin.
The event on Tuesday April 28th was a huge success! Both Katie and I were overwhelmed with all the people that came. Everyone had a great time, the food was amazing and you really couldn't have asked for better weather. I am sure that everyone has seen the photos via Facebook. If you haven't, here's the link:
http://www.facebook.com/home.php?ref=home#/photo_search.php?oid=70294957431&view=all
The rest of the week was jammed with doctors appointments. I think I had about six of them lined up for that week. Most of them were going to see other doctors to see if we were doing the right things medically or if maybe we should be going in some other direction. All of them gave reassuring answers.
One other exciting thing that we did that week was go to the Rockies game on Wednesday. Yes, I was well enough to ride the bus down and sit in the sun and enjoy the baseball game. Dawn enjoyed it all except for me not bringing the sunscreen. I should have known better.
Katie's Uncle Scott arrived on Thursday the 30th of April but didn't "move in" until Friday (May 1st). He was here for two and a half weeks, although it didn't feel like it. He brought his dog Gracie with him from his long trip from North Carolina. She and Macaroni got along great from the minute that they walked in the door. It almost makes me want to get a second dog.
The following week, the week of May 4th, my chemo was scheduled to start on Tuesday. We started around 7am and they administered both drugs (oxaliplatin and gemcitabine). They did the infusion as an outpatient therapy and we left there by 1pm. I didn't feel very good the rest of the day and for the next few days. That night I did end up vomiting a few times because we didn't stay ahead of the nausea. It wasn't until Thursday afternoon that I started to feel better and started eating food.
The week of May 11th was a pretty low key week as well. I had chemo on Tuesday of this week and it fairly well as I was able to eat later that afternoon with giving it back. During the weekend we went to Becky's House (Katie's sister) to celebrate Mother's Day and Jenny's Birthday (Katie's other sister). There was great food there that I was able to enjoy!
This past week I have had the week off from chemo and it has been great to have this week to relax. I went out to lunch with a few friends and met a few others for dinner during this week. My energy level during this week has been the best that it has been in a few months.
As I mentioned earlier, both Katie and I can't thank everyone enough for the show of love and support that you all have given us during this trying time. After going to a celebration of life on Friday from a friend that passed away it reminded me of how we should have more events like the one my friends and family put on for me. We should celebrate, love and support people more while they are here.
Monday, May 11, 2009
Thursday, April 23, 2009
Taking a few weeks....
This week and next I am taking time to unwind from the surgery and the radiation therapy that I endured during the last few weeks. I have some follow up appointments, MRIs and second opinions that we need to seek out during this time as well.
As far as how I am feeling physically, I actually am able to get out and drive and run some errands and do a few things around the house. I still can't lift anything over 15lbs. for at least another four weeks. I have been able to take a walk around the neighborhood with Macaroni (our dog) fairly easily. My appetite is getting better as well. I am actually eating three square meals a day!
We are scheduled to start chemo the first or second week of May. This is basically a clinical trial. Here's the link to the article that our doctor pulled...
http://jco.ascopubs.org/cgi/content/full/22/1/108
(The article is medical driven and may be a little hard to follow should you choose to click on the link and read it.)
Our doctor has consulted with the world's greatest minds on Testicular Cancer including Dr. Larry Einhorn (one of the doctors credited with saving Lance Armstrong's life). And all believe that this regimen of chemo is the way to go for me.
I am going to make the most of this next week. I still have quite a few appointments that I have to make and events to attend. It is going to be a very busy week!
As far as how I am feeling physically, I actually am able to get out and drive and run some errands and do a few things around the house. I still can't lift anything over 15lbs. for at least another four weeks. I have been able to take a walk around the neighborhood with Macaroni (our dog) fairly easily. My appetite is getting better as well. I am actually eating three square meals a day!
We are scheduled to start chemo the first or second week of May. This is basically a clinical trial. Here's the link to the article that our doctor pulled...
http://jco.ascopubs.org/cgi/content/full/22/1/108
(The article is medical driven and may be a little hard to follow should you choose to click on the link and read it.)
Our doctor has consulted with the world's greatest minds on Testicular Cancer including Dr. Larry Einhorn (one of the doctors credited with saving Lance Armstrong's life). And all believe that this regimen of chemo is the way to go for me.
I am going to make the most of this next week. I still have quite a few appointments that I have to make and events to attend. It is going to be a very busy week!
Monday, April 20, 2009
Been home for about a week...
I love being in the comforts of home. Especially after an unexpected trip to the hospital, admission and surgery on my abdomen for the 4th time. So for the past week or so, I have been resting and doing little things around the house. Last Thursday evening, we had some friends over and Edwin made some noodles. A good Asian noodle dish was just the right medicine. It was the biggest meal that I had had since well before surgery. We had some leftovers until Saturday. That was good because Saturday was a great noodle day. (It rained and snowed here on Friday and into all day Saturday.)
We went to Katie's sister's house on Saturday evening and spent some quality time with them and the family. We finally got to see their new home. I guess I wouldn't quite call it a home yet because their is still a little unpacking that needs to be completed. Katie cooked up a nice organic chicken dish that was really flavorful. Dave put the kids to bed around eight and we had the rest of the evening to kick back. We played a little Mario Kart on the Wii and Katie was excited that her Wii Fit age is her actual age! We left their house pretty late that night -- after midnight.
The next morning the sun came out and it was a gorgeous day! Katie's other sister Becky called and wanted to come over with Ben and Quinn and set up my birthday present -- an organic garden! They got here around 11:30am. I am really excited that I am going to have a little garden this year! Russ came over at around the same time and I whipped up a little brunch.
This morning the cleaners came over and cleaned some areas that needed to be done -- badly! With all the shuffling back and forth to the hospital, the emergency surgeries, trips to the ER, who has time to clean? A friend of ours got us a maid service for a couple of hours! How great was that! Wish they would have gotten to a little more of the house but the rooms they did look great!
I kicked back and took a nap this afternoon. I haven't napped in a while. As a matter of fact, my sleeping habits haven't been great since I got out of surgery last Wednesday. I find myself getting up at 5am everyday. I am taking a sleeping pill and a natural sleep agent and still I can only seem to get maybe six hours of sleep per night. Once my body calms down from the surgery, I think sleeping will get better.
Tonight happened to be the 'Man Dinner'. Once a month, the boys get together for a night and shoot the breeze and to catch up. Tonight was the Happy Noodle in Boulder and the special sandwich was really good! It was a crab tempura sandwich with a dipping sauce. Need to find a way to get that on the menu for awhile.
We went to Katie's sister's house on Saturday evening and spent some quality time with them and the family. We finally got to see their new home. I guess I wouldn't quite call it a home yet because their is still a little unpacking that needs to be completed. Katie cooked up a nice organic chicken dish that was really flavorful. Dave put the kids to bed around eight and we had the rest of the evening to kick back. We played a little Mario Kart on the Wii and Katie was excited that her Wii Fit age is her actual age! We left their house pretty late that night -- after midnight.
The next morning the sun came out and it was a gorgeous day! Katie's other sister Becky called and wanted to come over with Ben and Quinn and set up my birthday present -- an organic garden! They got here around 11:30am. I am really excited that I am going to have a little garden this year! Russ came over at around the same time and I whipped up a little brunch.
This morning the cleaners came over and cleaned some areas that needed to be done -- badly! With all the shuffling back and forth to the hospital, the emergency surgeries, trips to the ER, who has time to clean? A friend of ours got us a maid service for a couple of hours! How great was that! Wish they would have gotten to a little more of the house but the rooms they did look great!
I kicked back and took a nap this afternoon. I haven't napped in a while. As a matter of fact, my sleeping habits haven't been great since I got out of surgery last Wednesday. I find myself getting up at 5am everyday. I am taking a sleeping pill and a natural sleep agent and still I can only seem to get maybe six hours of sleep per night. Once my body calms down from the surgery, I think sleeping will get better.
Tonight happened to be the 'Man Dinner'. Once a month, the boys get together for a night and shoot the breeze and to catch up. Tonight was the Happy Noodle in Boulder and the special sandwich was really good! It was a crab tempura sandwich with a dipping sauce. Need to find a way to get that on the menu for awhile.
Sunday, April 12, 2009
Wow!... We are really lucky to have so many great people in our lives!
All of the offers of help and energy and everything coming our way is amazing!! We have several options of places to take Mac where he is really happy. People come to the hospital and spend time. We get calls and sometimes it feels like grand central station. People are bringing Katie food since she doesn't like to leave me in this boring place. We have so many people behind us and rooting for us and it is such an amazing feeling that sometimes when I think about it, it gets me a little teary eyed and overwhelms me with positive emotion.
So... I wanted to let you all know that we really appreciate all of it and THANK YOU from the bottom of our hearts! It makes us fight that much harder to know how you all feel. We also appreciate all the help that is coming in from so many angles.
... the Easter Bunny came to my room too... in the form of Katie's family and Russ and Ronan ... pictures below.
So... I wanted to let you all know that we really appreciate all of it and THANK YOU from the bottom of our hearts! It makes us fight that much harder to know how you all feel. We also appreciate all the help that is coming in from so many angles.
... the Easter Bunny came to my room too... in the form of Katie's family and Russ and Ronan ... pictures below.
Another ''bump'' in the road...
Well, we have hit another bump in the road.
Early last week, I was having abdomen pain and was unable to keep anything down. During our daily visit to Radiation on Tuesday, we talked to the radiation oncologist and described what I was feeling. They sent us to the ER for X-rays of the abdomen, gave me some fluids via IV and because there was nothing evident, we were sent home with some laxitives.
That night, I still didn't feel well and the laxitives weren't working and I was still not able to keep anything down. Russ took me back to the hospital on Wednesday and they admitted me. Using a CT scan they found I had a bowel obstruction - due to scar tissue in the area - and they scheduled me for emergency surgery last Wednesday night.
They went through the same incision and removed the obstruction/scar tissue. I am back in the hospital - probably until Wednesday or Thursday of this week. One dose of radiation was skipped. (still TBD if the missed treatment from last Thursday will be tacked onto the end, making the end of radation be 4/16 instead of 4/15.)
They had an NG Tube down my nose and throat to give my digestive system a rest and that was very annoying. That was taken out yesterday and I couldn't stop grinning! Today I am "eating" clear liquids and so far so good.
This time I have been a lot more awake and it seems like in a lot less pain so hopefull recovery will be quick! I am sitting up and walking around a lot.
Early last week, I was having abdomen pain and was unable to keep anything down. During our daily visit to Radiation on Tuesday, we talked to the radiation oncologist and described what I was feeling. They sent us to the ER for X-rays of the abdomen, gave me some fluids via IV and because there was nothing evident, we were sent home with some laxitives.
That night, I still didn't feel well and the laxitives weren't working and I was still not able to keep anything down. Russ took me back to the hospital on Wednesday and they admitted me. Using a CT scan they found I had a bowel obstruction - due to scar tissue in the area - and they scheduled me for emergency surgery last Wednesday night.
They went through the same incision and removed the obstruction/scar tissue. I am back in the hospital - probably until Wednesday or Thursday of this week. One dose of radiation was skipped. (still TBD if the missed treatment from last Thursday will be tacked onto the end, making the end of radation be 4/16 instead of 4/15.)
They had an NG Tube down my nose and throat to give my digestive system a rest and that was very annoying. That was taken out yesterday and I couldn't stop grinning! Today I am "eating" clear liquids and so far so good.
This time I have been a lot more awake and it seems like in a lot less pain so hopefull recovery will be quick! I am sitting up and walking around a lot.
Back to the hospital again
You can see exactly where they are radiating. It is peeling a little bit now - just some "sun"for that area. Our friend Melissa said that since it is just like the sun - we should go to Florida sunscreen up everything but that spot and just lay in the sun all day. (though I think the 5 mins on the table is a little more intense - it sounds like a good theory!)
The new incision was about 2/3 of the previous one. (time #4 through that scar)
NG Tube - Yuck, painful, all around uncomfortable.
The Vargas' visited... the future's so bright I gotta wear shades.
The new incision was about 2/3 of the previous one. (time #4 through that scar)
NG Tube - Yuck, painful, all around uncomfortable.
The Vargas' visited... the future's so bright I gotta wear shades.
Clearing my mouth with the "Yankgour" no clue how to spell it... just like the dentist tool.
NG Tube out AND I am eating! (well - clear liquids - so drinking)
Sunday, March 29, 2009
Some pictures
All of the Prescriptions ended up on one counter, and it was kind of overwhelming, so Katie took a picture
Also - pictures of the marks they made on my body for the radiation. These are all stickers. The second one shows the where the tumor is located in my spine. The machine rotates, so the radiation is both in front and in back.
4th Time?
Sorry it has taken me so long to post an entry. A LOT has happened... here is a quick update:
Since Feb 10th... I have been recovering from Surgery. We left Indiana on the 24th (after the chest tubes were out - (see previous post - it sounds worse than it looked).
Since we've been at home, I have just been taking pain killers, mostly because I still have back pain (The back pain is the reason I went to get the original CT Scan), but, after the operation, it seems as though the the back pain had moved around.
We had our follow up on March 10th and we did a blood test. The AFP levels were down (tumor markers for testicular cancer) we were excited, BUT I still had a lot of back pain. The doctor believed it was residual from the surgery and was actually surprised that I wasn't in MORE pain (the thoracotomy does that). We requested a bone scan and did that Friday March, 20th. I also saw a Physical Therapist to see if she could do anything... but the back pain continued, AND got worse through the weekend. The pain settled in a different part of my back on the other side and around to my chest.
Monday we called the doctor and I went down at 1pm to talk to them. They did more bloodwork and an EKG. They ordered a CT Scan to see if it was a Pulmonary Embolism, but were not able to do it at University of Colorado Hospital (UCH) because the ER was swamped and we would have waited at least 6 hours. So we went to Boulder Community ER and got right in. The CT scan was negative for Pulmonary Embolism (PE). They offered to admit me for pain management, but I wanted to go home. UCH docs said that an MRI would be the next step if the PE was negative.
Tuesday AM after a long night of little sleep, I had Katie call the doctor's first thing in the morning. We went in and they started IV fluids and pain killers. They also gave me anti-nausea medicine that put me to sleep on the exam table. The MRI was scheduled fairly quickly, but it takes about an hour to complete and then we were back to the exam room.
At around 5pm, the doctors and nurse came in to tell us that there was another tumor. This tumor did not show up on the CT scans OR the bone scan. The location of the tumor is the most alarming. It is in the T4 of the spine (think top of breast bone but on the back - there will be a picture later to see more) The tumor is IN the bone, destroying the bone and pressing on the spinal cord. AHA - finally the source of the pain?
Immediately they gave me a high dose of steroids to shrink the swelling and provide some pain relief. Then I was admitted to the hospital. The docs from radiation came in to talk about the next steps in treatment. I have been prescribed 10 doses of radiation. These happen 1x/day on weekdays.
We finally got to a room at 11pm and found that it was a shared room and was not on the oncology floor (sigh). Russ and Katie found uncomfortable places to sleep and camped for the night. I didn't get much more sleep in the hospital bed because Neurosurgeons were in and out every 1-2 hours to make sure that my motor function was OK. (testing strength, feeling, movement) I passed with flying colors!!!
Wednesday we saw a ton of doctors, asked them a lot of questions. (see last post for some FAQs) the steroids seem to be working because the back pain is much less now.
Since Feb 10th... I have been recovering from Surgery. We left Indiana on the 24th (after the chest tubes were out - (see previous post - it sounds worse than it looked).
Since we've been at home, I have just been taking pain killers, mostly because I still have back pain (The back pain is the reason I went to get the original CT Scan), but, after the operation, it seems as though the the back pain had moved around.
We had our follow up on March 10th and we did a blood test. The AFP levels were down (tumor markers for testicular cancer) we were excited, BUT I still had a lot of back pain. The doctor believed it was residual from the surgery and was actually surprised that I wasn't in MORE pain (the thoracotomy does that). We requested a bone scan and did that Friday March, 20th. I also saw a Physical Therapist to see if she could do anything... but the back pain continued, AND got worse through the weekend. The pain settled in a different part of my back on the other side and around to my chest.
Monday we called the doctor and I went down at 1pm to talk to them. They did more bloodwork and an EKG. They ordered a CT Scan to see if it was a Pulmonary Embolism, but were not able to do it at University of Colorado Hospital (UCH) because the ER was swamped and we would have waited at least 6 hours. So we went to Boulder Community ER and got right in. The CT scan was negative for Pulmonary Embolism (PE). They offered to admit me for pain management, but I wanted to go home. UCH docs said that an MRI would be the next step if the PE was negative.
Tuesday AM after a long night of little sleep, I had Katie call the doctor's first thing in the morning. We went in and they started IV fluids and pain killers. They also gave me anti-nausea medicine that put me to sleep on the exam table. The MRI was scheduled fairly quickly, but it takes about an hour to complete and then we were back to the exam room.
At around 5pm, the doctors and nurse came in to tell us that there was another tumor. This tumor did not show up on the CT scans OR the bone scan. The location of the tumor is the most alarming. It is in the T4 of the spine (think top of breast bone but on the back - there will be a picture later to see more) The tumor is IN the bone, destroying the bone and pressing on the spinal cord. AHA - finally the source of the pain?
Immediately they gave me a high dose of steroids to shrink the swelling and provide some pain relief. Then I was admitted to the hospital. The docs from radiation came in to talk about the next steps in treatment. I have been prescribed 10 doses of radiation. These happen 1x/day on weekdays.
We finally got to a room at 11pm and found that it was a shared room and was not on the oncology floor (sigh). Russ and Katie found uncomfortable places to sleep and camped for the night. I didn't get much more sleep in the hospital bed because Neurosurgeons were in and out every 1-2 hours to make sure that my motor function was OK. (testing strength, feeling, movement) I passed with flying colors!!!
Wednesday we saw a ton of doctors, asked them a lot of questions. (see last post for some FAQs) the steroids seem to be working because the back pain is much less now.
FAQs
Katie sent this email to the email list, and it seemed helpful... so here is a repeat for some:
FAQs:
Is this the same cancer?
A: it is very unlikely that it is something different (we will be pushing this issue a lot), there is no indication that this is anything different) - one of the reasons is that we are measuring the AFP Levels, which are an indicator for testicular (and one other kind) of cancer. We cannot be 100% certain that it is unless there is a biopsy. (which we are not sure if they are going to try to take) also, it is extremely uncommon for a cancer to Start there.
After radiation - is that it?
A: no, but the next course of treatment is not yet determined. It could be more chemo, it could be another surgery, it could be something else.
Wait - you said Chemo - I thought this wasn't reacting to chemo
A: yes, this would be a different chemical regimine... though that is still TBD
Why all these TBDs?
A: because radiation comes first. After radiation, we have to understand what we still believe we are up against.
Are you going back to Indy?
A: probably not. Dr. Glode is in touch with Dr. Foster and Dr. Einhorne in Indy and they are consulting about the treatment (we also understand that there was another Dr. consulted who is an expert nationally, though I do not know his/her name.) On the other hand, we may want to consult with these doctors ourselves. ... so I guess we have another TBD.
What about those great test results you were bragging about last week (AFPs)?
A; The results are still good - the AFP levels changed because MOST of the tumors were removed. The next test that I thought would be normal ... probably wouldn't have been... but we are finding this out earlier than if we had waited for them to do the next test. Basically, they still shouldn't have been that high if all cancerous tumors were removed.
Why Radiation and not Chemo - or Radiation and then chemo? and - what about surgery?
A: because of the location and the size of the tumor. (location - in the vertebrate and pushing on the spinal cord, size - like the tip of your thumb beyond the joint) radiation is the first step. This will stop growth of the tumor, give Allen some pain relief and potentially shrink/destroy the tumor. Radiation is used when there is a specific target (chemo will target the whole body) the tumor is in a dangerous place and this is the fastest way to attack it (surgery is risky because of the location of the tumor)
What are the side effects of Radiation?
A: very little. There is not pain associated with the treatment. Side effects are sore throat, cough, adema around the tumor (which is being treated with steroids)
Why didn't they catch this before? / Was this Missed?
A: This only showed up on an MRI scan. They only do MRIs on very specific parts of the body, and until he had a major complaint, there was no reason to do one.
Wait a second - he has had back pain this whole time - he HAD a complaint.
A: this was answered with the CT scan... or so they thought ... OR this is a new growth and wasn't there 6 weeks ago. (they CAN grow that fast!)
What about other tests? What else can they do?
A: Allen had a PET scan today (results not back yet) we will continue to test everything possible to get this GONE!!
Is Allen still in Pain?
A: the steroids they gave him were for 2 reasons. This is common pre-radiation and also reduces swelling which has given him some relief. He IS still complaining of pain, but it is much less than before and meds are helping.
Are you still seeing NeuroSurgeons often?
A: they are coming by more like once/day and their visits are less intensive... fewer tests on his body functions (strength, if he is feeling specific sensations, if when he closes his eyes, does he know what they are doing to him - get your minds out of the gutter - this is all G rated)
When are you leaving the hospital?
Friday - depending on the time of radiation treatment and how he is doing to make sure they are OK with him going home. (due to the blizzard out here in Colorado, Allen may not get a radiation treatment tomorrow - but they will still send us home)
Can we come visit (the hospital)?
A: Totally - We are not in a private room (which is a huge exercise in patience)
Can we come visit you at home?
A: Totally - as long as you are OK with the mess of a house... absolutely. Allen loves his people and would love to see anyone who would like to visit.
What about the Blog?
A: this is on Allen's list of things to do. Right now (literally - right now) he is sleeping and he NEEDS it!!
How are you guys doing?
A: this is a challenge. we are frustrated and tired. We really love all the positive messages you are sending because we really need it (well I should speak for me - I really need the reminder... this feels like a roller coaster - I thought the ride was over, but here we go again.)
FAQs:
Is this the same cancer?
A: it is very unlikely that it is something different (we will be pushing this issue a lot), there is no indication that this is anything different) - one of the reasons is that we are measuring the AFP Levels, which are an indicator for testicular (and one other kind) of cancer. We cannot be 100% certain that it is unless there is a biopsy. (which we are not sure if they are going to try to take) also, it is extremely uncommon for a cancer to Start there.
After radiation - is that it?
A: no, but the next course of treatment is not yet determined. It could be more chemo, it could be another surgery, it could be something else.
Wait - you said Chemo - I thought this wasn't reacting to chemo
A: yes, this would be a different chemical regimine... though that is still TBD
Why all these TBDs?
A: because radiation comes first. After radiation, we have to understand what we still believe we are up against.
Are you going back to Indy?
A: probably not. Dr. Glode is in touch with Dr. Foster and Dr. Einhorne in Indy and they are consulting about the treatment (we also understand that there was another Dr. consulted who is an expert nationally, though I do not know his/her name.) On the other hand, we may want to consult with these doctors ourselves. ... so I guess we have another TBD.
What about those great test results you were bragging about last week (AFPs)?
A; The results are still good - the AFP levels changed because MOST of the tumors were removed. The next test that I thought would be normal ... probably wouldn't have been... but we are finding this out earlier than if we had waited for them to do the next test. Basically, they still shouldn't have been that high if all cancerous tumors were removed.
Why Radiation and not Chemo - or Radiation and then chemo? and - what about surgery?
A: because of the location and the size of the tumor. (location - in the vertebrate and pushing on the spinal cord, size - like the tip of your thumb beyond the joint) radiation is the first step. This will stop growth of the tumor, give Allen some pain relief and potentially shrink/destroy the tumor. Radiation is used when there is a specific target (chemo will target the whole body) the tumor is in a dangerous place and this is the fastest way to attack it (surgery is risky because of the location of the tumor)
What are the side effects of Radiation?
A: very little. There is not pain associated with the treatment. Side effects are sore throat, cough, adema around the tumor (which is being treated with steroids)
Why didn't they catch this before? / Was this Missed?
A: This only showed up on an MRI scan. They only do MRIs on very specific parts of the body, and until he had a major complaint, there was no reason to do one.
Wait a second - he has had back pain this whole time - he HAD a complaint.
A: this was answered with the CT scan... or so they thought ... OR this is a new growth and wasn't there 6 weeks ago. (they CAN grow that fast!)
What about other tests? What else can they do?
A: Allen had a PET scan today (results not back yet) we will continue to test everything possible to get this GONE!!
Is Allen still in Pain?
A: the steroids they gave him were for 2 reasons. This is common pre-radiation and also reduces swelling which has given him some relief. He IS still complaining of pain, but it is much less than before and meds are helping.
Are you still seeing NeuroSurgeons often?
A: they are coming by more like once/day and their visits are less intensive... fewer tests on his body functions (strength, if he is feeling specific sensations, if when he closes his eyes, does he know what they are doing to him - get your minds out of the gutter - this is all G rated)
When are you leaving the hospital?
Friday - depending on the time of radiation treatment and how he is doing to make sure they are OK with him going home. (due to the blizzard out here in Colorado, Allen may not get a radiation treatment tomorrow - but they will still send us home)
Can we come visit (the hospital)?
A: Totally - We are not in a private room (which is a huge exercise in patience)
Can we come visit you at home?
A: Totally - as long as you are OK with the mess of a house... absolutely. Allen loves his people and would love to see anyone who would like to visit.
What about the Blog?
A: this is on Allen's list of things to do. Right now (literally - right now) he is sleeping and he NEEDS it!!
How are you guys doing?
A: this is a challenge. we are frustrated and tired. We really love all the positive messages you are sending because we really need it (well I should speak for me - I really need the reminder... this feels like a roller coaster - I thought the ride was over, but here we go again.)
Pictures from Indy
Monday, we went to the hospital to get Allen a CT scan and to meet with Doctor Foster and Doctor KesslerPlaying boggle on the iPhone...
Preparing to meet with Dr. Foster....
Tree arrives - and we wait to meet with Dr. Kessler...
The day of surgery...
they wait... they play cards, Katie knits.
The sticker tells them who Katie is so they can disclose medical information and status updates.
Katie is trying to help me exercise...
Katie is trying to help me exercise...
And a little ET tribute ... oooouuuuch
Friday, February 27, 2009
Friday, February 20, 2009
AFP levels
I forgot a very important point in the last post... we did the first test for the Alpha-Feta Protein levels post-surgery. They have decreased by more than 1/2 as of Sunday (and should have decreased another 1/2 as of today - but we aren't in the hospital, so we won't get them tested every five days) This will be part of the follow up in Colorado next week.
This is great news and is one indicator of a successful surgery and a cancer-free recovery.
As of right now, we are still in Indy awaiting chest tube removal and are not sure at this point when we will get on a plane.
This is great news and is one indicator of a successful surgery and a cancer-free recovery.
As of right now, we are still in Indy awaiting chest tube removal and are not sure at this point when we will get on a plane.
Tuesday, February 17, 2009
the short story... (again by Katie)
Allen has progressed and is currently out of the hospital... but we are not able to fly home yet. Allen still has a chest tube that he is draining fluid into and it can't be taken out until the flow slows down, so we are staying at Grandma and Grandpa's for a few days. It is hard to wait for it to slow down and we can't really do much to help it.
Allen has had a rough couple of days with the pain meds catching up to him making it difficult for him to poop. So he feels a little stopped up. We have switched to Tylenol and Advil which shouldn't effect him in that way, but they are not as strong. The pain in his belly from the indigestion is worse than the surgical pain right now.
The rows of stiches that Allen has are pretty impressive. Probably 14-16 inches long on the belly and about the same along the ribs on the right hand side. He normally hides the scars well with chest and belly hair - but the chemo has thinned that out and it is slow growing back (but this is getting better as well)
SO, we are in a holding pattern right now.
Allen has had a rough couple of days with the pain meds catching up to him making it difficult for him to poop. So he feels a little stopped up. We have switched to Tylenol and Advil which shouldn't effect him in that way, but they are not as strong. The pain in his belly from the indigestion is worse than the surgical pain right now.
The rows of stiches that Allen has are pretty impressive. Probably 14-16 inches long on the belly and about the same along the ribs on the right hand side. He normally hides the scars well with chest and belly hair - but the chemo has thinned that out and it is slow growing back (but this is getting better as well)
SO, we are in a holding pattern right now.
Thursday, February 12, 2009
A Katie Update - but just through 2/10/2009
I thought I would update the BLOG for Allen since he is definitely out of it, but doing great!
I will back up a bit though - to Sunday (so this may be kind of a monster post)
We left for Indy on Sunday. Friends were flying BACK from Las Vegas and met us in the terminal in passing which was very cool. The flight was painless except for the landing... we were about 6 feet from the ground when the plane took a sharp turn back into the air. After a few minutes (and lots of people chatting) the pilot gets on the intercom and says "we are going to circle the airport again because there was another plane still on our runway... welcome to Indianapolis". We headed to my Grandma and Grandpa's house and the planning began (Grandma is a planner like me - but I think it gets worse as you get older - the little 82 year old scurries around making sure everyone is comfortable) By the end of the night Russ was as comfortable as could be with comfort food (chicken noodles), tea and plenty of card playing (Euchre is the game in my family and we kept Grandpa up way past his bedtime playing - a good time was had by all)
Monday I bolted out of bed at 5am starting the list in my head of all the things I wanted to make sure we asked the doctor (I had been told that he will give you all the information you request, but to have your questions ready) We went for a donut run (a tradition when staying with Grandma and Grandpa) - Grandma made eggs for Allen - since donuts aren't on his list. We went on the adventure of finding the hospital. After getting the contrast Allen and Russ went to Whole Foods to get some fruit and nuts and peanut butter and bread (which has been awesome to have around the hospital). They returned JUST in time to get the CT Scan and we set off to find Dr. Foster's office.
Dr. Foster came in with a surgical cap on (I have yet to see him without one), sat down on the chair and started talking about the surgery... as Russ likes to say it he said "We are going to kick ass, this is how I am going to kick ass, this is how you are going to kick ass and with all that it will be a kick ass time" (alright - that is not the words he used - but close) After that meeting we all felt SO high. We agreed it was the best we had felt about Allen and his prognosis since he was diagnosed. Dr. Kesler was in the middle of a case and requested we return later to speak with him, so we went to eat at Jenny's friend's restaurant right here on Campus - Creation Cafe. We spoke with Dr. Kesler and found out there was a third tumor which would require a chest tube and a thoracotomy to remove... which adds 2+ days to the hospital stay. The personalities of the 2 docs could not be more different. Foster was dynamic and straightforward. Kesler was ready to get out of there and go to the next case too.
We went back to Grandma's house with one more person (Russ picked Tree up from the airport while we were eating) A few family members came by and we played more cards and talked.
Russ, Tree, Allen and I all decided to sleep in Tree and Russ' hotel room that night so that we were close to the hospital (which is a good thing because my alarm didn't go off and we were 20 minutes late when we woke up but only 25 minutes late by the time we got there) The docs and nurses got everything done and took Allen back by 7:20 and we were off to the waiting room.
Since we had been in such a rush to leave the room Tree and Russ went back to get their computers - but Tree came back with fewer hairs on his head! (Russ has the pictures - maybe I can bargin with him to send some this way!)
We had a nurse coming by every 90 mins with a report on what was going on and a beeper for when the doctor was coming down to talk to us so we were updated throughout. I am surprised that the time actually went pretty quickly. (I blame it on the expectation that I would be waiting for at least 8 hours)
Dr Foster took about 3 hours and helped Kesler with the first part of his surgery. Kesler took a quick hour to do the thoracotomy and clean out the third tumor. (a 4-6 hour estimate took 5 hours - not bad)
The first part of the waiting was over... we thought it wouldn't be that long BUT there was a little bit of a bed shuffle. We went up to the floor they directed us to and waited for him there for about 2 hours (the nurses said not to worry about this - and sometimes it happens... but we finally asked and he was still in recovery) ... they sent us back down and said that we could have 2 people go see him for 5 mins in recovery and it was a one time thing. Tree and I went to see him. He was itching like crazy and it was hard to hear. My emotion came in waves and after seeing him then having to leave him - that was the biggest wave. A little later we got a room and finally were able to settle in.
The nurse was great and got me a chair that allowed me to lay flat to sleep in there and was as quiet as possible throughout the night.
(ok, I lied - a day or two update at a time.... more to follow)
Russ took most of the pictures - I will request he send it this way - we have a picture of the stomach incision (we haven't seen the other one under the bandage) - but pictures of him will be posted soon and hopefully he will update when we get closer.
- by the way - a little preview - he is doing AWESOME and eating solid foods now AND walking around quite a bit.
I will back up a bit though - to Sunday (so this may be kind of a monster post)
We left for Indy on Sunday. Friends were flying BACK from Las Vegas and met us in the terminal in passing which was very cool. The flight was painless except for the landing... we were about 6 feet from the ground when the plane took a sharp turn back into the air. After a few minutes (and lots of people chatting) the pilot gets on the intercom and says "we are going to circle the airport again because there was another plane still on our runway... welcome to Indianapolis". We headed to my Grandma and Grandpa's house and the planning began (Grandma is a planner like me - but I think it gets worse as you get older - the little 82 year old scurries around making sure everyone is comfortable) By the end of the night Russ was as comfortable as could be with comfort food (chicken noodles), tea and plenty of card playing (Euchre is the game in my family and we kept Grandpa up way past his bedtime playing - a good time was had by all)
Monday I bolted out of bed at 5am starting the list in my head of all the things I wanted to make sure we asked the doctor (I had been told that he will give you all the information you request, but to have your questions ready) We went for a donut run (a tradition when staying with Grandma and Grandpa) - Grandma made eggs for Allen - since donuts aren't on his list. We went on the adventure of finding the hospital. After getting the contrast Allen and Russ went to Whole Foods to get some fruit and nuts and peanut butter and bread (which has been awesome to have around the hospital). They returned JUST in time to get the CT Scan and we set off to find Dr. Foster's office.
Dr. Foster came in with a surgical cap on (I have yet to see him without one), sat down on the chair and started talking about the surgery... as Russ likes to say it he said "We are going to kick ass, this is how I am going to kick ass, this is how you are going to kick ass and with all that it will be a kick ass time" (alright - that is not the words he used - but close) After that meeting we all felt SO high. We agreed it was the best we had felt about Allen and his prognosis since he was diagnosed. Dr. Kesler was in the middle of a case and requested we return later to speak with him, so we went to eat at Jenny's friend's restaurant right here on Campus - Creation Cafe. We spoke with Dr. Kesler and found out there was a third tumor which would require a chest tube and a thoracotomy to remove... which adds 2+ days to the hospital stay. The personalities of the 2 docs could not be more different. Foster was dynamic and straightforward. Kesler was ready to get out of there and go to the next case too.
We went back to Grandma's house with one more person (Russ picked Tree up from the airport while we were eating) A few family members came by and we played more cards and talked.
Russ, Tree, Allen and I all decided to sleep in Tree and Russ' hotel room that night so that we were close to the hospital (which is a good thing because my alarm didn't go off and we were 20 minutes late when we woke up but only 25 minutes late by the time we got there) The docs and nurses got everything done and took Allen back by 7:20 and we were off to the waiting room.
Since we had been in such a rush to leave the room Tree and Russ went back to get their computers - but Tree came back with fewer hairs on his head! (Russ has the pictures - maybe I can bargin with him to send some this way!)
We had a nurse coming by every 90 mins with a report on what was going on and a beeper for when the doctor was coming down to talk to us so we were updated throughout. I am surprised that the time actually went pretty quickly. (I blame it on the expectation that I would be waiting for at least 8 hours)
Dr Foster took about 3 hours and helped Kesler with the first part of his surgery. Kesler took a quick hour to do the thoracotomy and clean out the third tumor. (a 4-6 hour estimate took 5 hours - not bad)
The first part of the waiting was over... we thought it wouldn't be that long BUT there was a little bit of a bed shuffle. We went up to the floor they directed us to and waited for him there for about 2 hours (the nurses said not to worry about this - and sometimes it happens... but we finally asked and he was still in recovery) ... they sent us back down and said that we could have 2 people go see him for 5 mins in recovery and it was a one time thing. Tree and I went to see him. He was itching like crazy and it was hard to hear. My emotion came in waves and after seeing him then having to leave him - that was the biggest wave. A little later we got a room and finally were able to settle in.
The nurse was great and got me a chair that allowed me to lay flat to sleep in there and was as quiet as possible throughout the night.
(ok, I lied - a day or two update at a time.... more to follow)
Russ took most of the pictures - I will request he send it this way - we have a picture of the stomach incision (we haven't seen the other one under the bandage) - but pictures of him will be posted soon and hopefully he will update when we get closer.
- by the way - a little preview - he is doing AWESOME and eating solid foods now AND walking around quite a bit.
Monday, February 9, 2009
Friday, February 6, 2009
Off we go...
After juicing and eating healthy for a couple weeks.... we are almost there... We are getting ready for the next couple days and getting on a plane.
We're leavin' on a jet plane don't know when we'll be back again (we want to be back Feb 17th!)
After digging a little through the packet of info we got from Dr. Foster's asst - we found an order for bloodwork that needs to be done before we head out. Thank goodness we saw it Thursday and UCH was able to get us in Today!!
No big plans for tonight or tomorrow.... just getting ready and cleaning the house so we come back to a clean house.
Who is "we" - well we have a troupe... Katie, Jenny (Katie's sister), Russ and myself. Katie's grandparents and most of her mom's side of the family are in or around Indy also. After that Tree, Mom, Taryn, Becky (Katie's other sister), Chuckie and possibly others will be coming in and out.
Tuesday is the big day for surgery. Based on past surgeries we expect 8 hour surgery and based on another person we met's surgery with Dr. Foster (they went out in December) they expected a 6 hour surgery and he was out in 2! - Katie is expecting 8 hours so that she is less fidgety. (Katie has started knitting - I wonder how many scarves we will be taking home from Indiana!)
I don't know how the internet is in the hospital there, from what I hear, it is on a different floor, but Katie or I will try to post as much as we can.
We're leavin' on a jet plane don't know when we'll be back again (we want to be back Feb 17th!)
After digging a little through the packet of info we got from Dr. Foster's asst - we found an order for bloodwork that needs to be done before we head out. Thank goodness we saw it Thursday and UCH was able to get us in Today!!
No big plans for tonight or tomorrow.... just getting ready and cleaning the house so we come back to a clean house.
Who is "we" - well we have a troupe... Katie, Jenny (Katie's sister), Russ and myself. Katie's grandparents and most of her mom's side of the family are in or around Indy also. After that Tree, Mom, Taryn, Becky (Katie's other sister), Chuckie and possibly others will be coming in and out.
Tuesday is the big day for surgery. Based on past surgeries we expect 8 hour surgery and based on another person we met's surgery with Dr. Foster (they went out in December) they expected a 6 hour surgery and he was out in 2! - Katie is expecting 8 hours so that she is less fidgety. (Katie has started knitting - I wonder how many scarves we will be taking home from Indiana!)
I don't know how the internet is in the hospital there, from what I hear, it is on a different floor, but Katie or I will try to post as much as we can.
Wednesday, January 7, 2009
Surgery Date
Sorry it has been so long since my last post. Nothing was happening for awhile over the holidays while the doctors got their schedules in order so we could make our next plans.
Surgery is scheduled for 2/10. Unfortunately we have to wait that long.
The surgery will be in Indianapolis, IN at IU Medical Center. Katie, Russ, Jenny (Katie's oldest sister) and I will fly out on the 8th.
Katie's grandparents live in Indianapolis and a few other of her mom's side of the family, so there is some other support out there.
Monday (the 9th) I will get a CT scan and we will all meet with the Drs. (Dr. Foster and Dr. Kessler (the thoracic surgeon).
Others will filter in and out later and throughout the week and my mom and sister will come out to Colorado after we get back.
Katie and I have tickets back on the 17th (which are changeable if necessary - I think I really like Frontier Airlines new model).
The holidays were nice, very relaxing. We didn't do much exciting for New Years, watching movies and vegging. I am spending my time playing video games, reading more on different types of cancer diets and talking to people about cancer prevention. I am taking hikes daily with Macaroni (our dog) and making those more challenging the more I do. It is good for me and the dog.
I am feeling pretty good, all things considered and trying to keep busy.
This past weekend was pretty exciting. My friends from home, Marc and Lindy came into town. It was the first time that they had been to Boulder so naturally I showed them around. I did take them on a few hikes (Marshall Mesa and Bluebell at Chautauqua). We did hit up a Jax and Brasserie 1010 during the weekend for dinner and drinks. All in all, we all had a great time!
In previous posts I talked about starting a macrobiotic diet. That may still be the way I go, but I am unsure at this point if that is totally the way to go. I have been getting lots of advice and a few people suggested I start juicing (no, not steroids). My mom got me a juicer for Christmas. It was delivered on Friday and started juicing on Tuesday. I have been having fun with it and trying to figure out some recipes. I go to the store to keep getting more fruit and veges. Most of the results have been tasty, but some haven't been great. I make enough for Katie to take to work with her.
Over the course of the past few months, since my diagnosis, I have received numerous messages, recommendations, Facebook posts and such from friends and family saying that they are thinking about me and thinking positively for a speedy recovery and similar sentiments. I can't express in words how great all that support has been through this time. I truly appreciate it all. Paige posted pictures on her blog: Paige Elizabeth Portraits (we are at least an entry down now) but it is pretty powerful.
Again, thank you all - I can truly feel the love from far and near. I will try to do my part and post more often - even if there is less to say (maybe my latest favorite juice combo!)
Surgery is scheduled for 2/10. Unfortunately we have to wait that long.
The surgery will be in Indianapolis, IN at IU Medical Center. Katie, Russ, Jenny (Katie's oldest sister) and I will fly out on the 8th.
Katie's grandparents live in Indianapolis and a few other of her mom's side of the family, so there is some other support out there.
Monday (the 9th) I will get a CT scan and we will all meet with the Drs. (Dr. Foster and Dr. Kessler (the thoracic surgeon).
Others will filter in and out later and throughout the week and my mom and sister will come out to Colorado after we get back.
Katie and I have tickets back on the 17th (which are changeable if necessary - I think I really like Frontier Airlines new model).
The holidays were nice, very relaxing. We didn't do much exciting for New Years, watching movies and vegging. I am spending my time playing video games, reading more on different types of cancer diets and talking to people about cancer prevention. I am taking hikes daily with Macaroni (our dog) and making those more challenging the more I do. It is good for me and the dog.
I am feeling pretty good, all things considered and trying to keep busy.
This past weekend was pretty exciting. My friends from home, Marc and Lindy came into town. It was the first time that they had been to Boulder so naturally I showed them around. I did take them on a few hikes (Marshall Mesa and Bluebell at Chautauqua). We did hit up a Jax and Brasserie 1010 during the weekend for dinner and drinks. All in all, we all had a great time!
In previous posts I talked about starting a macrobiotic diet. That may still be the way I go, but I am unsure at this point if that is totally the way to go. I have been getting lots of advice and a few people suggested I start juicing (no, not steroids). My mom got me a juicer for Christmas. It was delivered on Friday and started juicing on Tuesday. I have been having fun with it and trying to figure out some recipes. I go to the store to keep getting more fruit and veges. Most of the results have been tasty, but some haven't been great. I make enough for Katie to take to work with her.
Over the course of the past few months, since my diagnosis, I have received numerous messages, recommendations, Facebook posts and such from friends and family saying that they are thinking about me and thinking positively for a speedy recovery and similar sentiments. I can't express in words how great all that support has been through this time. I truly appreciate it all. Paige posted pictures on her blog: Paige Elizabeth Portraits (we are at least an entry down now) but it is pretty powerful.
Again, thank you all - I can truly feel the love from far and near. I will try to do my part and post more often - even if there is less to say (maybe my latest favorite juice combo!)
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