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!
Thursday, April 23, 2009
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.
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