23 December 2009
Vaseline
The nose dryness got to the point where I asked the doctor for more help. His suggestion: vaseline. Google seems paranoid that this will cause lung problems like pneumonia, but it’s been working amazingly well so far.
22 December 2009
Current Daily Symptoms
A muscle pain in my neck that sometimes almost feels like a bruise; dryness of the nasal cavities that sometimes leads to nosebleeds; and mouth sores of various shapes, sizes, and locations.
21 December 2009
Our Other Doctor — Dr. Mario
R plays Tetris to help manage his anxiety when it starts feeling a little out of control. He plays an interactive variation where he plays against other people over the internet on his Nintendo DS. Everyone joining the Tetris network gets a rating so they can be optimally matched. R was noticing today that he was playing someone with a much higher rating than his, but R was totally winning. R’s rating fluctuates a lot because of his health. On the worse days it drops, and on the better days it rises. Today his rating’s rising!
21 December 2009
Another Dose
Got my bleomycin today. The visit was quick and painless and I was probably the least lightheaded as I’ve been getting outpatient chemo.
18 December 2009
Flying
Back in July, we booked plane tickets to travel to see my folks for the holidays. We haven’t been sure in the last couple of months that we were going to be able to use them, but we are planning on it at this point (though everything is tentative until the plane takes off).
R’s estimated lowest day (day 10 in Round 2) was today — and he went in for a full day of work. Nothing like day 10 in Round 1, where he spent most of the day semi-conscious and in bed. So we think he’ll be in pretty good form to fly on Tuesday next week. It will still take a lot of energy and cause a bit of stress, though, so we’re trying to figure out how to maximally alleviate that.
I called the airline today and got special accommodations set up. The person who helped me put a wheelchair request in for R. Supposedly the wheelchair (and the person who pushes it) gets you in a special security queue, and lines you up for priority boarding. So R hopefully won’t have to wear himself out too much with flying.
Friday, December 25, 2009
Thursday, December 17, 2009
update 17 Dec
17 December 2009
HCG Counts
Called for the HCG counts today: 10,400! That’s basically an order of magnitude drop from last time. I’m getting less and less pregnant every day …
HCG Counts
Called for the HCG counts today: 10,400! That’s basically an order of magnitude drop from last time. I’m getting less and less pregnant every day …
Wednesday, December 16, 2009
Update 15 December
15 December 2009
Downside
Trouble swallowing; white spots on the back of the throat. Could be an infection—waiting to hear back from the doctor. Update: doctor thinks it’s a yeast infection. Great, add that to the list: mood swings, nausea, weird food cravings, pee-on-a-stick-test-positive … sheesh. J has gone to the pharmacy to pick up an appropriate prescription.
15 December 2009
Night Sweats
Last night was the first night, I believe since October, where I didn’t have any night sweats. Essentially none at all. I am in awe.
Downside
Trouble swallowing; white spots on the back of the throat. Could be an infection—waiting to hear back from the doctor. Update: doctor thinks it’s a yeast infection. Great, add that to the list: mood swings, nausea, weird food cravings, pee-on-a-stick-test-positive … sheesh. J has gone to the pharmacy to pick up an appropriate prescription.
15 December 2009
Night Sweats
Last night was the first night, I believe since October, where I didn’t have any night sweats. Essentially none at all. I am in awe.
Saturday, December 12, 2009
December 12 update
11 December 2009
Better
Slept much better last night; had some visitors; got some work done; worst day nurse EVAR.
Better
Slept much better last night; had some visitors; got some work done; worst day nurse EVAR.
Wednesday, December 9, 2009
Thank you everyone for your prayers
We believe in the power of prayer. We believe in miracles. R. is showing many signs of improvement. We are certain that is because of the many prayers of faith being offered in his behalf and for that we thank each and every one of you.
December 11 update
8 December 2009
Vital Statistix
When we checked in to the hospital this morning, R’s vitals were awesome. Blood pressure = 99/61 (on the low side, but that’s fairly normal for R). Temperature = 97.7ºF (tumor fevers long gone). My favorite: Oxygen saturation = 99%. Last time we were here, they could only get him up to the acceptable threshold for normal (92) with 3 or 4 litres of oxygen helping him out! (Mine was 97 last time I was at the doctor.) No oxygen tubes this time. The lung tumors must be dead.
8 December 2009
Successfully Checked In
Currently sucking down the first batch of today’s chemo.
Vital Statistix
When we checked in to the hospital this morning, R’s vitals were awesome. Blood pressure = 99/61 (on the low side, but that’s fairly normal for R). Temperature = 97.7ºF (tumor fevers long gone). My favorite: Oxygen saturation = 99%. Last time we were here, they could only get him up to the acceptable threshold for normal (92) with 3 or 4 litres of oxygen helping him out! (Mine was 97 last time I was at the doctor.) No oxygen tubes this time. The lung tumors must be dead.
8 December 2009
Successfully Checked In
Currently sucking down the first batch of today’s chemo.
Monday, December 7, 2009
December 9 update
At the moment, my primary symptoms are severe muscle tension (particularly left neck/shoulder and right arm), and depression at my beard’s unexpected departure. The only cancerous symptom is sweating through the night.
R is ready to start Round 2 Tuesday if all tests are ok.
R is ready to start Round 2 Tuesday if all tests are ok.
Saturday, December 5, 2009
5 December update
5 December 2009
Performance Status
The doc said that the more R can maintain or resume regular activities during treatment, the better his performance status, and the better the prognosis. When I was reading running stories a few months ago (in time BC), I found a story of a woman with cancer who wanted to keep running during her treatment. Now that I know what chemo is like, I understand the story on a new level. And I’m going to see if I can start running again. I haven’t run at all for two weeks, and haven’t run consistently for two months. But it feels like two years. It really does.
R told me a few weeks ago that his goal is to be able to do laundry through this whole thing. (He’s always done all the laundry. Laundry is my Moriarty.) It’s his way of keeping his stride. His way to run.
You said you had to get your laundry clean / didn’t want no one to hold you / what does that mean? / Ain’t nothing gonna break my stride, nobody gonna hold me down / oh no / I’ve got to keep on moving
And so I’m celebrating that, like every weekend, he’s doing laundry today.
Ain’t nothing gonna break my stride / I’m running and I won’t touch ground / oh no / I’ve got to keep on moving
4 December 2009
FAQ: Type
What type of cancer is it?
Type: Extragonadal, mediastinal germ cell cancer. Subtype: Nonseminomal. Sub-subtype: Choriocarcinoma.
What does that mean?
It’s testicular cancer that didn’t come from the testicles (they gave R a testicular ultrasound to rule out testicular origin). The origin of the cancerous germ cells is the mediastinum (between the lungs, above the heart). This site has some good explanations.
3 December 2009
Back
Some small back pains and aches; took some vicodin to hopefully get me through the evening.
Performance Status
The doc said that the more R can maintain or resume regular activities during treatment, the better his performance status, and the better the prognosis. When I was reading running stories a few months ago (in time BC), I found a story of a woman with cancer who wanted to keep running during her treatment. Now that I know what chemo is like, I understand the story on a new level. And I’m going to see if I can start running again. I haven’t run at all for two weeks, and haven’t run consistently for two months. But it feels like two years. It really does.
R told me a few weeks ago that his goal is to be able to do laundry through this whole thing. (He’s always done all the laundry. Laundry is my Moriarty.) It’s his way of keeping his stride. His way to run.
You said you had to get your laundry clean / didn’t want no one to hold you / what does that mean? / Ain’t nothing gonna break my stride, nobody gonna hold me down / oh no / I’ve got to keep on moving
And so I’m celebrating that, like every weekend, he’s doing laundry today.
Ain’t nothing gonna break my stride / I’m running and I won’t touch ground / oh no / I’ve got to keep on moving
4 December 2009
FAQ: Type
What type of cancer is it?
Type: Extragonadal, mediastinal germ cell cancer. Subtype: Nonseminomal. Sub-subtype: Choriocarcinoma.
What does that mean?
It’s testicular cancer that didn’t come from the testicles (they gave R a testicular ultrasound to rule out testicular origin). The origin of the cancerous germ cells is the mediastinum (between the lungs, above the heart). This site has some good explanations.
3 December 2009
Back
Some small back pains and aches; took some vicodin to hopefully get me through the evening.
Thursday, December 3, 2009
December update
3 December 2009
No hair for my hairbrush
I am now bald.
2 December 2009
Twinkle, Twinkle, Little Star
A couple people have pointed out that R’s Zodiac sign is Cancer. My Zodiac sign is Sagittarius. If there were any significance to astrology, then if R lost a battle to cancer, I would lose a battle to an archer. Highly unlikely, right? So there you go.
2 December 2009
Lunch Noodles
I had pho for lunch for the first time in ages. I stayed too long at work and got too tired but am recovering now.
1 December 2009
Bleomycin
Feeling a little funny/tired from today’s chemo, but with an extra Ativan or two I think I’ve mostly recovered and will be back up to full speed tomorrow. (I finished a cool work project, too!)
1 December 2009
Om Nom Nom
R’s appetite is starting to get back to normal. We’ve heard ubiquitously from both medical professionals and cancer survivors about how chemo wiggity-whacks your tastebuds and how it’s hard to want to eat anything even if you can keep it down. But, relatively speaking, it hasn’t been too horrible for R. Since last week he’s kept everything down and has even had a hankering for a few things in particular. A couple of days ago he told me that he was thinking about how good it would be to smell tacos cooking. So tonight we made tacos. Mmmmm.
Doc says it’s a marker that the treatment’s working.
1 December 2009
Outpatient Chemo
Didn’t get out of bed last night for the first time since pre-cancer (although I did wake up a few times), and was less sweaty than normal. Outpatient chemo was a lot of waiting because the office was backed up and they had to flush my matrix plug, but everything worked fine after that.
30 November 2009
Full Day of Work
First full day of work in the office since chemo—I even went to lunch with the team. Tired now though, but excited to do it again tomorrow.
30 November 2009
Poem #657
I found this poem in a book I read while we were on vacation two months ago. I’ve always loved Dickinson. In my reading notebook I wrote about how this is a poem of how R lives life. Creative, present, and with a rich, practical imagination of the Possible.
29 November 2009
Energy Levels Rising
Still sweating through the night, but I’m eating regular meals now and feeling pretty good most of the day.
29 November 2009
Ready Already
Monday, 7 December is the earliest that R can start chemo again, but last night he said he felt ready to start it again this Monday. Thanksgiving was his lowest day — he was wrung out and lethargic — but he didn’t stay low for long. (The typical chemo low is from days 10 to 14 after day 1 of chemo. Thanksgiving was day 10.) On Black Friday he was already starting to feel better, well enough to sit up at the table for some games. My mother sent Ticket to Ride, Europe to me as an early birthday present after I mentioned that we planned to stay in and play lots of games while my brother N and sister L were here for Thanksgiving. We’re so glad they came.
No hair for my hairbrush
I am now bald.
2 December 2009
Twinkle, Twinkle, Little Star
A couple people have pointed out that R’s Zodiac sign is Cancer. My Zodiac sign is Sagittarius. If there were any significance to astrology, then if R lost a battle to cancer, I would lose a battle to an archer. Highly unlikely, right? So there you go.
2 December 2009
Lunch Noodles
I had pho for lunch for the first time in ages. I stayed too long at work and got too tired but am recovering now.
1 December 2009
Bleomycin
Feeling a little funny/tired from today’s chemo, but with an extra Ativan or two I think I’ve mostly recovered and will be back up to full speed tomorrow. (I finished a cool work project, too!)
1 December 2009
Om Nom Nom
R’s appetite is starting to get back to normal. We’ve heard ubiquitously from both medical professionals and cancer survivors about how chemo wiggity-whacks your tastebuds and how it’s hard to want to eat anything even if you can keep it down. But, relatively speaking, it hasn’t been too horrible for R. Since last week he’s kept everything down and has even had a hankering for a few things in particular. A couple of days ago he told me that he was thinking about how good it would be to smell tacos cooking. So tonight we made tacos. Mmmmm.
Doc says it’s a marker that the treatment’s working.
1 December 2009
Outpatient Chemo
Didn’t get out of bed last night for the first time since pre-cancer (although I did wake up a few times), and was less sweaty than normal. Outpatient chemo was a lot of waiting because the office was backed up and they had to flush my matrix plug, but everything worked fine after that.
30 November 2009
Full Day of Work
First full day of work in the office since chemo—I even went to lunch with the team. Tired now though, but excited to do it again tomorrow.
30 November 2009
Poem #657
I found this poem in a book I read while we were on vacation two months ago. I’ve always loved Dickinson. In my reading notebook I wrote about how this is a poem of how R lives life. Creative, present, and with a rich, practical imagination of the Possible.
29 November 2009
Energy Levels Rising
Still sweating through the night, but I’m eating regular meals now and feeling pretty good most of the day.
29 November 2009
Ready Already
Monday, 7 December is the earliest that R can start chemo again, but last night he said he felt ready to start it again this Monday. Thanksgiving was his lowest day — he was wrung out and lethargic — but he didn’t stay low for long. (The typical chemo low is from days 10 to 14 after day 1 of chemo. Thanksgiving was day 10.) On Black Friday he was already starting to feel better, well enough to sit up at the table for some games. My mother sent Ticket to Ride, Europe to me as an early birthday present after I mentioned that we planned to stay in and play lots of games while my brother N and sister L were here for Thanksgiving. We’re so glad they came.
Friday, November 27, 2009
Updates from my son's wife 25 Nov 2009
My daughter-in-law decided to start a blog so we can now get more detailed updates on R:
25 November 2009
The Doc Called
HCG = 99,000 — down twenty percent! (HCG is the tumor marker. It was 125,000 on 4 November. Normal levels are 10.) R is now less pregnant than before!
24 November 2009
Today, Today, Work While you May
Today for the second day in a row R went in to the office for a few hours for work. Today all hair = still there. Today we went in to the doc to get an outpatient infusion of bleomycin. R got bloodwork done, too. They have a specialized, speedy machine for chemo work that does counts (of platelets and red and white blood cells) really fast, so we got the count results while we were still there.
* white blood cell counts were very low, so he got a booster shot;
* red blood cell counts are somewhat low, and when R’s digestion is back under control he’ll start using iron supplements;
* platelet counts are good.
Other bloodwork results will be back tomorrow.
R’s Aunt S and Uncle B visited before the appointment. Aunt S has a most soothing voice, a very peaceful cadence; it was lovely. She too has been through chemo.
23 November 2009
FAQ
When will you know if it (the treatment) is working?
There are a few indicators to look at — for example, it’s heartening that the fevers are lower and coughing is less constant and less bloody. They can also test R’s blood levels for HCG. But those are indications, not proofs. After all four rounds of chemo, R will get another CT scan and the surgeon will remove anything that is left (be it cancer or scar tissue). But the fact is, we will know we’ve really killed it only after chemo is complete and we see that the cancer isn’t. ever. coming. back!
23 November 2009
This is your brain on drugs
R was sent home with three anti-nausea drugs and one antibiotic. I write down all his doses on a white board: when he took one last and when he can take one next.
Anti-barf
The worst component of R’s nausea is anticipation anxiety. He’ll feel an obstruction in his airway or his throat, and he’ll panic. One of the anti-nausea drugs, Ativan, is specifically for anticipatory nausea and anxiety. Ativan was a miracle drug for R in the hospital, but it’s not working quite as awesomely at home.
a) It’s administered differently (pill, not IV).
b) It’s in a different cocktail, so the drug interactions are different. At the hospital he got a drug that he doesn’t get now that had a side effect of energizing him so it masked the somnolent side effects of Ativan.
So there’s a challenge between keeping food down and staying awake and alert. R’s doing good work to find that balance.
Anti-life
When the nurse de-accessed the portacath, the incision/scar on R’s right side looked a little iffy. Not infected, but almost infected. I politely insisted that she find the doctor, and he looked at it and prescribed an antibiotic. It’s a sulfa drug, and I’m horribly allergic to it. When I filled this Rx for R I conversationally mentioned my allergy to the pharmacist. She solemnly instructed me to “make sure you don’t take any.” I’ll make sure.
22 November 2009
Food, Glorious Food
R’s friend and co-worker brought us dinner tonight! Mmm. And my co-workers pitched in for a hearty handful of gift certificates to restaurants near our house so I can order food. We’re lucky. We have good peeps. Really good.
21 November 2009
Home
Round 1 of chemo is complete.
We were released from the hospital last night at 9:00. Getting ready for release was a day-long ordeal. In the morning they (“they” being the nurses under direction of the doc) started weaning R off of oxygen. In the afternoon after chemo they gave him diurectics to help his system dump all the fluids that they pumped into him all week to keep his kidneys healthy. (The fluids kept his kidneys safe but they got into his lungs and pooled in water weight at his ankles. Like most of treatment, there are tradeoffs.) They checked his vitals twice as much as usual.
The Red Pill, or R, Unplugged
The last step was unplugging R from the Matrix (what they call ‘de-accessing’ his portacath). R feels a little disoriented without his little beepy IV companion. He took it on a final lap around the oncology floor after he was unhooked.
20 November 2009
Coughing
Today pretty much everything R has coughed up was clear: just phlegm and phluid, no blood! And I am mending.
20 November 2009
Bleeping Beeping
R’s humor has been at full tilt. On Wednesday, the IV machine was especially tetchy; it would begin beeping at the slightest provocation. On Wednesday they gave him his first bleomycin, a chemo chemical he’ll get once a week every week until all four rounds of chemo are over. They gave him a test dose and carefully monitored for allergic reactions.
Nurse: Are you experiencing anything unusual with the bleomycin? Any side effects?
R, waving hands around as if disoriented: Yes, I’ve been hearing lots of loud beeping noises.
IV machine: *beep* *beep*
R: Ack! Nurse, the side effects are getting worse!
19 November 2009
Caretaker Caretaking
I am sick. This is awful. I feel terrible. A bad meal? A gut bug? Must. Get. Better. Must get back to R. Must take care of us.
18 November 2009
Fortnight of Fever — Broken
For the last two weeks, since the onset of symptoms on Halloween, R has spiked a tumor fever of 100ºF or higher every day around 4:00pm. Some of those days before chemo he never managed a temperature below 99ºF, not even in the gentler relief of morning when his fevers abated. Yesterday (chemo round 1, day 2) his fever was down and today (round 1, day 3) it’s down even more. At 5:00pm, 8:00pm, and 10:00pm today his temperature was 97.4ºF. This is a good sign.
25 November 2009
The Doc Called
HCG = 99,000 — down twenty percent! (HCG is the tumor marker. It was 125,000 on 4 November. Normal levels are 10.) R is now less pregnant than before!
24 November 2009
Today, Today, Work While you May
Today for the second day in a row R went in to the office for a few hours for work. Today all hair = still there. Today we went in to the doc to get an outpatient infusion of bleomycin. R got bloodwork done, too. They have a specialized, speedy machine for chemo work that does counts (of platelets and red and white blood cells) really fast, so we got the count results while we were still there.
* white blood cell counts were very low, so he got a booster shot;
* red blood cell counts are somewhat low, and when R’s digestion is back under control he’ll start using iron supplements;
* platelet counts are good.
Other bloodwork results will be back tomorrow.
R’s Aunt S and Uncle B visited before the appointment. Aunt S has a most soothing voice, a very peaceful cadence; it was lovely. She too has been through chemo.
23 November 2009
FAQ
When will you know if it (the treatment) is working?
There are a few indicators to look at — for example, it’s heartening that the fevers are lower and coughing is less constant and less bloody. They can also test R’s blood levels for HCG. But those are indications, not proofs. After all four rounds of chemo, R will get another CT scan and the surgeon will remove anything that is left (be it cancer or scar tissue). But the fact is, we will know we’ve really killed it only after chemo is complete and we see that the cancer isn’t. ever. coming. back!
23 November 2009
This is your brain on drugs
R was sent home with three anti-nausea drugs and one antibiotic. I write down all his doses on a white board: when he took one last and when he can take one next.
Anti-barf
The worst component of R’s nausea is anticipation anxiety. He’ll feel an obstruction in his airway or his throat, and he’ll panic. One of the anti-nausea drugs, Ativan, is specifically for anticipatory nausea and anxiety. Ativan was a miracle drug for R in the hospital, but it’s not working quite as awesomely at home.
a) It’s administered differently (pill, not IV).
b) It’s in a different cocktail, so the drug interactions are different. At the hospital he got a drug that he doesn’t get now that had a side effect of energizing him so it masked the somnolent side effects of Ativan.
So there’s a challenge between keeping food down and staying awake and alert. R’s doing good work to find that balance.
Anti-life
When the nurse de-accessed the portacath, the incision/scar on R’s right side looked a little iffy. Not infected, but almost infected. I politely insisted that she find the doctor, and he looked at it and prescribed an antibiotic. It’s a sulfa drug, and I’m horribly allergic to it. When I filled this Rx for R I conversationally mentioned my allergy to the pharmacist. She solemnly instructed me to “make sure you don’t take any.” I’ll make sure.
22 November 2009
Food, Glorious Food
R’s friend and co-worker brought us dinner tonight! Mmm. And my co-workers pitched in for a hearty handful of gift certificates to restaurants near our house so I can order food. We’re lucky. We have good peeps. Really good.
21 November 2009
Home
Round 1 of chemo is complete.
We were released from the hospital last night at 9:00. Getting ready for release was a day-long ordeal. In the morning they (“they” being the nurses under direction of the doc) started weaning R off of oxygen. In the afternoon after chemo they gave him diurectics to help his system dump all the fluids that they pumped into him all week to keep his kidneys healthy. (The fluids kept his kidneys safe but they got into his lungs and pooled in water weight at his ankles. Like most of treatment, there are tradeoffs.) They checked his vitals twice as much as usual.
The Red Pill, or R, Unplugged
The last step was unplugging R from the Matrix (what they call ‘de-accessing’ his portacath). R feels a little disoriented without his little beepy IV companion. He took it on a final lap around the oncology floor after he was unhooked.
20 November 2009
Coughing
Today pretty much everything R has coughed up was clear: just phlegm and phluid, no blood! And I am mending.
20 November 2009
Bleeping Beeping
R’s humor has been at full tilt. On Wednesday, the IV machine was especially tetchy; it would begin beeping at the slightest provocation. On Wednesday they gave him his first bleomycin, a chemo chemical he’ll get once a week every week until all four rounds of chemo are over. They gave him a test dose and carefully monitored for allergic reactions.
Nurse: Are you experiencing anything unusual with the bleomycin? Any side effects?
R, waving hands around as if disoriented: Yes, I’ve been hearing lots of loud beeping noises.
IV machine: *beep* *beep*
R: Ack! Nurse, the side effects are getting worse!
19 November 2009
Caretaker Caretaking
I am sick. This is awful. I feel terrible. A bad meal?
18 November 2009
Fortnight of Fever — Broken
For the last two weeks, since the onset of symptoms on Halloween, R has spiked a tumor fever of 100ºF or higher every day around 4:00pm. Some of those days before chemo he never managed a temperature below 99ºF, not even in the gentler relief of morning when his fevers abated. Yesterday (chemo round 1, day 2) his fever was down and today (round 1, day 3) it’s down even more. At 5:00pm, 8:00pm, and 10:00pm today his temperature was 97.4ºF. This is a good sign.
Sunday, November 22, 2009
R. is home after first week of chemo
R. is now home. The word we have received is that he is home and sleeping. He has the next two weeks to recover and then back for the next week round of chemo.
Thursday, November 19, 2009
Week of Chemo almost finished
The good news is that R. has been able to eat better than he has for a couple of weeks. Also his tumor fevers have decreased. He isn't having so many night sweats. All things to make us grateful.
The oncologist comes in twice a day. J. said there is a team of others (nutritionist, etc) who also check in periodically. His blood pressure has been too low some of the time and has stayed on the lower side. His calcium is getting depleted. He also has a lot of fluid in his lungs which is not a good thing. He is on oxygen because his counts are low. He's still coughing up a small amount of blood. The coughing agitates the blood vessels but he needs to cough the fluid up. He has enjoyed visitors from work. He also enjoys being able to work. He didn't do much work today because he was more tired.
J. has a stomach bug and she is hoping to recover quickly from that.
The oncologist comes in twice a day. J. said there is a team of others (nutritionist, etc) who also check in periodically. His blood pressure has been too low some of the time and has stayed on the lower side. His calcium is getting depleted. He also has a lot of fluid in his lungs which is not a good thing. He is on oxygen because his counts are low. He's still coughing up a small amount of blood. The coughing agitates the blood vessels but he needs to cough the fluid up. He has enjoyed visitors from work. He also enjoys being able to work. He didn't do much work today because he was more tired.
J. has a stomach bug and she is hoping to recover quickly from that.
Wednesday, November 18, 2009
Third day
R reports: 'getting a test dose of the "big guns" in Chemo-Land'. So far he reports no wacky side effects.
Monday, November 16, 2009
First day of chemotherapy
Looks like first day went well.
R and J checked in to the hospital this morning. R is getting fluids ("flushing", they call it, to keep his kidneys healthy), and started the first chemo.
R was feeling good enough that he was able to do some work remotely by computer.
Report from R:
Day one of chemo was a success! After four pre-chemo days of being unable to keep anything more complicated than Sprite in my system, yesterday while taking chemo I ate a sausage, some hash browns, and half a (personal size) pizza! It was awesome
R and J checked in to the hospital this morning. R is getting fluids ("flushing", they call it, to keep his kidneys healthy), and started the first chemo.
R was feeling good enough that he was able to do some work remotely by computer.
Report from R:
Day one of chemo was a success! After four pre-chemo days of being unable to keep anything more complicated than Sprite in my system, yesterday while taking chemo I ate a sausage, some hash browns, and half a (personal size) pizza! It was awesome
Saturday, November 14, 2009
Improvement
R says the pain is nearly completely gone after the biopsy surgery. (He's thrilled to be off painkillers) He's still feeling nauseous and feverish on a pretty regular basis, but overall his health has improved and he's looking forward to starting chemo on Monday.
He is still coughing up a bit of blood. I will be glad when those tumors are gone, so they will stop causing bleeding in the lungs.
He is still coughing up a bit of blood. I will be glad when those tumors are gone, so they will stop causing bleeding in the lungs.
Report from doctor
R saw the Oncologist yesterday in preparation for his treatments.
He had a good couple of hours yesterday. He has nausea and fever most of the time which makes him weak. The last two days he has been able to eat a little more. Last night he wasn't able to keep food down.
Was given a little more specific cancer diagnosis: Germ Cell, nonseminoma choriocarcinoma.
According to the American Cancer Society website:
"Choriocarcinomas: This is a very rare and aggressive type of testicular cancer that occurs in adults. These cancers are likely to spread rapidly to distant organs of the body, including the lungs, bone, and brain. Pure choriocarcinoma does not often occur in the testicles. More often, choriocarcinoma cells are present with other types of non-seminoma cells in a mixed germ cell tumor. This type of tumor increases blood levels of HCG."
The prognosis is 50%, 5 year survival rate with treatment. We continue to pray for a miracle.
R will have four rounds of chemotherapy starting Monday. Five days of treatment (staying in the hospital those five days). Then home for two weeks to recover. Then back for five days of treatment - repeated for the four rounds of chemotherapy. Afterwhich they will see if there is any tumor left or any scar tissue which will need to be removed with surgery.
We will maintain hope and a positive outlook that R. will recover and will be with us for a much longer time.
He had a good couple of hours yesterday. He has nausea and fever most of the time which makes him weak. The last two days he has been able to eat a little more. Last night he wasn't able to keep food down.
Was given a little more specific cancer diagnosis: Germ Cell, nonseminoma choriocarcinoma.
According to the American Cancer Society website:
"Choriocarcinomas: This is a very rare and aggressive type of testicular cancer that occurs in adults. These cancers are likely to spread rapidly to distant organs of the body, including the lungs, bone, and brain. Pure choriocarcinoma does not often occur in the testicles. More often, choriocarcinoma cells are present with other types of non-seminoma cells in a mixed germ cell tumor. This type of tumor increases blood levels of HCG."
The prognosis is 50%, 5 year survival rate with treatment. We continue to pray for a miracle.
R will have four rounds of chemotherapy starting Monday. Five days of treatment (staying in the hospital those five days). Then home for two weeks to recover. Then back for five days of treatment - repeated for the four rounds of chemotherapy. Afterwhich they will see if there is any tumor left or any scar tissue which will need to be removed with surgery.
We will maintain hope and a positive outlook that R. will recover and will be with us for a much longer time.
Thursday, November 12, 2009
Thursday update
R was kept in the hospital after the biopsy Tuesday because of low oxygen levels. They released him Wednesday afternoon, so he was home when we arrived here.
During the surgery for the biopsy, they also cleaned out the blood that had collected in his lungs. It required moving one lung to the side which caused it to collapse some. That's what they were monitoring.
It's very good to be here with R and J.
Last night he was able to sleep quite well so we are glad for that.
Thursday morning he is in a lot of pain from the surgery which is helped somewhat by pain medication. We are watching game shows this morning for a divsersion.
I'm off to go buy some popcorn for Ross. He has been able to eat more today than he has in the last 2 weeks so we are hoping that is a positive thing.
During the surgery for the biopsy, they also cleaned out the blood that had collected in his lungs. It required moving one lung to the side which caused it to collapse some. That's what they were monitoring.
It's very good to be here with R and J.
Last night he was able to sleep quite well so we are glad for that.
Thursday morning he is in a lot of pain from the surgery which is helped somewhat by pain medication. We are watching game shows this morning for a divsersion.
I'm off to go buy some popcorn for Ross. He has been able to eat more today than he has in the last 2 weeks so we are hoping that is a positive thing.
Tuesday, November 10, 2009
Not good news
Word from R's biopsy: Nonseminoma Germ cell cancer. According to the research I've done, this is the worst germ cell cancer. Prognosis is 50% after chemotherapy, especially if the tumor has not invaded the surrounding lung areas.
We know from the previous CAT scan that he has tumors in both lungs.
I'm staying as hopeful and positive as possible - especially because we get to see him tomorrow and there is a strong support system praying for him. We can only put our faith and trust in God and accept His will.
We know from the previous CAT scan that he has tumors in both lungs.
I'm staying as hopeful and positive as possible - especially because we get to see him tomorrow and there is a strong support system praying for him. We can only put our faith and trust in God and accept His will.
Monday, November 9, 2009
Flying to be with R
My husband and I are flying this week to be with R and J. We wanted to spend this time with them before R starts his chemotherapy. We had a chat with him on videocam last night. He is very ill but we were able to share some good laughs. We are looking forward to seeing him soon.
Saturday, November 7, 2009
Chemo R will have
“How long is chemo and is it all done inpatient?”
There are “on” weeks and “off” weeks. Chemo will be five days a week on the on weeks. On the off weeks there’s only one day a week for one of the chemicals. Best case, I think, if things go pretty well (red and white blood cell and platelet counts go back up faster rather than slower), the treatment will be every three weeks: two weeks off, one week on, and so on ’til the cancer’s gone.
We have the possibility of the option in the future of doing subsequent rounds outpatient so we’re released home at night. It’s not always possible, but it might be for us because he has a caretaker who would be rigorous about some of the requirements and because he would be rigorous about it too. However, we will see how it goes. Our medical and personal teams combined (given all the information) feel good about starting in the hospital and monitoring from there.
There are “on” weeks and “off” weeks. Chemo will be five days a week on the on weeks. On the off weeks there’s only one day a week for one of the chemicals. Best case, I think, if things go pretty well (red and white blood cell and platelet counts go back up faster rather than slower), the treatment will be every three weeks: two weeks off, one week on, and so on ’til the cancer’s gone.
We have the possibility of the option in the future of doing subsequent rounds outpatient so we’re released home at night. It’s not always possible, but it might be for us because he has a caretaker who would be rigorous about some of the requirements and because he would be rigorous about it too. However, we will see how it goes. Our medical and personal teams combined (given all the information) feel good about starting in the hospital and monitoring from there.
My son's Cancer Updates
Life can punch you in the gut when you learn that your child has cancer.
Learning about this came the same week that my good friend, Dorothy Maxwell, left this life after battling cervical cancer which was then followed by an untreatable, aggressive colon cancer.
For a week we have worried about every possible scenario after learning that a large mass was found behind R's breastbone and that there were many tumors in his lung . Today we learn that there's alot of hope in this journey R. will be taking.
I will be updating this blog as we take this journey. We thank all of you who are remembering R, J. and us in your prayers. This is the latest update from his wife, J. This is such hopeful, encouraging news for us:
Hi family!
So. We had two appointments today, one with the surgeon and one with our oncologist. Both of them are exceptionally excellent so far. Due to other life adventures, I have some skillz for dealing with and assessing doctors. I guess sometimes you get to use skills you didn't ever really want to have. Our oncologist has Harvard and Stanford and UW medical residency (nationally the most competitive residency) on his resume, and -- most important and impressive -- he seems to have the real life skills to match. He's positive we can win.
Here's some news.
1) We got results back from the bloodwork done on Wednesday. R's HCG counts (yes, HCG) are 125,000 (normal levels are something like 10). That indicates, almost certainly, germ-cell cancer. That's a treatable cancer!
2) We don't know what kind of germ-cell cancer it is. On Monday R. is getting an ultrasound to determine if it's gonadal germ cell (really treatable) and a surgical biopsy is Tuesday to confirm whether or not it's seminomal germ cell (also very treatable). Not as treatable -- but still treatable! -- is non-seminomal germ cell.
3) One indicator for R having gonadal cancer is the pattern of the metastasized tumors in his lungs. One indicator for it being seminomal is that his HCG levels are very high but his AFP levels are not. No particular indicators of non-seminomal cancer (but nothing to rule it out).
4) R starts chemotherapy on the 16th. We will be at Swedish. I get to stay overnight with him (they encourage and accommodate that, but I was ready to advocate if they didn't :) Swedish is arguably the best hospital in the city, and Seattle is a *great* city for medicine.
We are major having lightning and thunderstorms today. Seattle rarely gets storms. It's very auspicious!
So. We had two appointments today, one with the surgeon and one with our oncologist. Both of them are exceptionally excellent so far. Due to other life adventures, I have some skillz for dealing with and assessing doctors. I guess sometimes you get to use skills you didn't ever really want to have. Our oncologist has Harvard and Stanford and UW medical residency (nationally the most competitive residency) on his resume, and -- most important and impressive -- he seems to have the real life skills to match. He's positive we can win.
Here's some news.
1) We got results back from the bloodwork done on Wednesday. R's HCG counts (yes, HCG) are 125,000 (normal levels are something like 10). That indicates, almost certainly, germ-cell cancer. That's a treatable cancer!
2) We don't know what kind of germ-cell cancer it is. On Monday R. is getting an ultrasound to determine if it's gonadal germ cell (really treatable) and a surgical biopsy is Tuesday to confirm whether or not it's seminomal germ cell (also very treatable). Not as treatable -- but still treatable! -- is non-seminomal germ cell.
3) One indicator for R having gonadal cancer is the pattern of the metastasized tumors in his lungs. One indicator for it being seminomal is that his HCG levels are very high but his AFP levels are not. No particular indicators of non-seminomal cancer (but nothing to rule it out).
4) R starts chemotherapy on the 16th. We will be at Swedish. I get to stay overnight with him (they encourage and accommodate that, but I was ready to advocate if they didn't :) Swedish is arguably the best hospital in the city, and Seattle is a *great* city for medicine.
We are major having lightning and thunderstorms today. Seattle rarely gets storms. It's very auspicious!
Wednesday, January 28, 2009
Being a Grandparent
I love being a grandparent. Christmas was alot of fun because all our children were home along with our three grandchildren.
Vincente has grown so much. He's such a cutie.
KayLynn and Karyn are also so adorable. I'm so happy that they live close by so I can see them often.
Vincente has grown so much. He's such a cutie.
KayLynn and Karyn are also so adorable. I'm so happy that they live close by so I can see them often.
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