Again. I am so resistant to updating. I figure if I don't post an update, then we are all cancer free. [does that work?]
I will start from last week's doctor appointment with Rob's palliative care doc (Jane McPherson)...
3/16/2011 ~ Doctor Visit
Rob gained two pounds. His oxygen and everything else is normal. Blood levels are a little low, but within chemo parameters. Wahoo! His pain levels are much better (thanks to the doc's tweaking of his meds).
We talked to her about how much better he is breathing and how he seems to be coughing less than before. We wondered whether there was a connection between the chemo and his feeling better.
Jane told us that tumors trap infection and this constricts the airway. Chemo often times helps shrink the tumors which in turn reduces the inflammation and makes the oxygen work better in the lungs. (Phew!) Does this make sense?
Rob is still feeling a bit of pain from the chemo site from six weeks ago. Apparently, the chemo is a poison (really?) and it is causing some irritation in his veins. We talked about a PICT line and a PORT, but decided that to help combat this pain and to make it so it is better in the future, his nurses will dilute the chemo solution a bit more and he will need to apply moist heat on the site. It is less invasive this way and where we don't know how much more chemo he will be having, it doesn't make sense to hook him up and make him a Borg at this stage.
One thing we did - that everyone should think about doing - is we filled out a form called a "Pulse Form." This is a document that one carries with them at all times (glove box, wallet, at home, etc.). It tells any emergency worker/caregiver/hospital/etc. what one's wishes are in the event of a car crash, etc. It was a fantastic conversation to have with Rob and Jane. There were interesting questions: some that I wouldn't have thought to ask.
3/24/2011 ~ Chemo Day
Rob lost two pounds. (Are we seeing some sort of trend yet?) Blood levels were OK enough to get the chemo.
Chemo went well. It was long. The last few days have been good. Fatigue. Nausea. Hiccups. Nothing new.
xoxox
Saturday, March 26, 2011
Friday, March 4, 2011
Round Three
I checked out for a little while. I think that I needed a non-cancer break. Forgive my lack-of-information...
It is interesting: the last few weeks have actually been good. Rob has been able to go to work for a few hours each day. He is completely exhausted when he gets back home, but he feels more like a human being than he has in a long while.
Yesterday was chemo day. It is funny how that works. One starts to feel a bit better and then it is chemo time again and it knocks one down on one's rear. We started the chemo prior to the appointment with the doctor as he was running two hours behind. (Thank goodness we had the chemo set up, right?) He is never that late - a fluke.
At any rate, it was a good appointment day. We talked with his doctor about what is next. We decided since Rob looks so much better than he did in December/January that the chemo must be doing something. He isn't coughing like he was, he is on oxygen only whilst sleeping, and his pain is being managed much better (thanks to Dr. Macpherson).
We have opted for one more round of chemotherapy and then we will have the scan a little over a week after that. Originally, we only agreed to three rounds of chemo. However, as far as we can tell (without a scan), it seems to be helping a bit, so it seemed prudent to get one more round in. Additionally, all of his scans have been three months apart. They also have generally shown an increase of 60%. If we were to get a scan after two months, it would be difficult to compare with older scans. Based on his clinical improvement (and the scan results), he can continue for one or two more rounds of his current drugs. If he shows response (meaning: growing as fast as it has) after that the additional rounds of chemo, then we would get rid of the carboplatin drug and keep on the alimpta drug as a type of maintenance.
Next chemotherapy: three weeks
Next scan: first week of April
Again, we are so grateful for the love and support we have received from so many countless people.
It is interesting: the last few weeks have actually been good. Rob has been able to go to work for a few hours each day. He is completely exhausted when he gets back home, but he feels more like a human being than he has in a long while.
Yesterday was chemo day. It is funny how that works. One starts to feel a bit better and then it is chemo time again and it knocks one down on one's rear. We started the chemo prior to the appointment with the doctor as he was running two hours behind. (Thank goodness we had the chemo set up, right?) He is never that late - a fluke.
At any rate, it was a good appointment day. We talked with his doctor about what is next. We decided since Rob looks so much better than he did in December/January that the chemo must be doing something. He isn't coughing like he was, he is on oxygen only whilst sleeping, and his pain is being managed much better (thanks to Dr. Macpherson).
We have opted for one more round of chemotherapy and then we will have the scan a little over a week after that. Originally, we only agreed to three rounds of chemo. However, as far as we can tell (without a scan), it seems to be helping a bit, so it seemed prudent to get one more round in. Additionally, all of his scans have been three months apart. They also have generally shown an increase of 60%. If we were to get a scan after two months, it would be difficult to compare with older scans. Based on his clinical improvement (and the scan results), he can continue for one or two more rounds of his current drugs. If he shows response (meaning: growing as fast as it has) after that the additional rounds of chemo, then we would get rid of the carboplatin drug and keep on the alimpta drug as a type of maintenance.
Next chemotherapy: three weeks
Next scan: first week of April
Again, we are so grateful for the love and support we have received from so many countless people.
Saturday, February 12, 2011
Chemo Shmeemo
Thursday was a big day. We met with Rob's oncologist, a palliative care physician, and had chemo.
Rob's oxygen saturation levels were extraordinary! 97% on two liters of oxygen. Wahoo....!!!
He has lost another pound since February 3. Not alarming, but he is down seven pounds since December.
We told his oncologist how awful his first chemo week was, what with all the puking, feeling like puking, and sleeping. His oncologist told us that he was going to add an IV drug called Amend prior to the chemo to help with the nausea. He also added a few more prescription drugs to help with the post-chemo nausea.
We started the chemo and whilst waiting for the blood work to come back, Rob and I decided to run an experiment. He took off his oxygen and then we retested his levels after 25 minutes. His levels were at 93%. So, after talking to the nurse, we decided to only use his oxygen when he is exercising or sleeping. He is so happy about that. I am still waiting for the pulse oximeter I ordered forever ago to arrive to double check and make sure he is getting enough.
The palliative doctor was fantastic. She went over all Rob's medicine and told us how he should better utilize the medicine he is taking. Up until this point, he was taking so many at random times for this or for that.
Last chemo go-round he was soooooooo sick the day after. This time around he has been really good. There is some nausea and fatigue, but not near as bad as it was last time. Funny thing, though. He has the worst hiccups. (If you remember, which you probably don't, last treatment in 2005, he had terrible hiccups and required a prescription drug to take care of it - it didn't help the fact that he was still healing from his lung surgery.) We are trying a few different things right now: Maalox Advanced, GasX (I know, right? Who would have thought?), and a prescription drug for his nausea that may help with the hiccups. We will see.
We took a small walk today. It was nice to get him outside, but he was exhausted when we were done. (It was uphill, to his credit.)
Thank you for all the kind words, thoughts, and deeds on our behalf! We are very, very grateful.
Rob's oxygen saturation levels were extraordinary! 97% on two liters of oxygen. Wahoo....!!!
He has lost another pound since February 3. Not alarming, but he is down seven pounds since December.
We told his oncologist how awful his first chemo week was, what with all the puking, feeling like puking, and sleeping. His oncologist told us that he was going to add an IV drug called Amend prior to the chemo to help with the nausea. He also added a few more prescription drugs to help with the post-chemo nausea.
We started the chemo and whilst waiting for the blood work to come back, Rob and I decided to run an experiment. He took off his oxygen and then we retested his levels after 25 minutes. His levels were at 93%. So, after talking to the nurse, we decided to only use his oxygen when he is exercising or sleeping. He is so happy about that. I am still waiting for the pulse oximeter I ordered forever ago to arrive to double check and make sure he is getting enough.
The palliative doctor was fantastic. She went over all Rob's medicine and told us how he should better utilize the medicine he is taking. Up until this point, he was taking so many at random times for this or for that.
Last chemo go-round he was soooooooo sick the day after. This time around he has been really good. There is some nausea and fatigue, but not near as bad as it was last time. Funny thing, though. He has the worst hiccups. (If you remember, which you probably don't, last treatment in 2005, he had terrible hiccups and required a prescription drug to take care of it - it didn't help the fact that he was still healing from his lung surgery.) We are trying a few different things right now: Maalox Advanced, GasX (I know, right? Who would have thought?), and a prescription drug for his nausea that may help with the hiccups. We will see.
We took a small walk today. It was nice to get him outside, but he was exhausted when we were done. (It was uphill, to his credit.)
Thank you for all the kind words, thoughts, and deeds on our behalf! We are very, very grateful.
Thursday, February 3, 2011
Eat, Drink, & Be Merry
Ahhh. The last few days (compared to the two weeks prior) have been good. Rob has eaten almost like normal. Wahoo! He is still tired, but really, the last few days have been good. He was even making jokes. This is a huge thing, since last week, I think that he would have just assumed crawling into a six-foot hole. His nausea is just about gone (thus the eating).
We visited his oncology office to get some blood work done. His levels are pretty low (duh - he just had chemo), but not alarmingly so. He is highly susceptible to catching any kind of illness, so we try to keep people at bay. If someone comes to our home, we spray them down with sanitizer.
His oxygen levels were FANTASTIC! They were 98% on four liters of oxygen. They lowered it to two and tested him ten minutes later. It was 96%. They decided that we could leave it at two. I purchased a pulse oximeter so we could test his blood oxygen levels at home. No more guessing - or assuming that he is getting enough (or not) oxygen.
He is on day nine after his last dose of Levaquin (antibiotic). He is already noticing a difference how he feels; he is coughing more and he has more pain. Thank goodness for drugs to help ease the pain. Hopefully, this vicious cycle of pneumonia on and off again will end.
One week from today, he will have another round of chemotherapy. We are looking forward (with much trepidation) to the days following. We are preparing for much vomit and sleeping (hopefully not at the same time).
We visited his oncology office to get some blood work done. His levels are pretty low (duh - he just had chemo), but not alarmingly so. He is highly susceptible to catching any kind of illness, so we try to keep people at bay. If someone comes to our home, we spray them down with sanitizer.
His oxygen levels were FANTASTIC! They were 98% on four liters of oxygen. They lowered it to two and tested him ten minutes later. It was 96%. They decided that we could leave it at two. I purchased a pulse oximeter so we could test his blood oxygen levels at home. No more guessing - or assuming that he is getting enough (or not) oxygen.
He is on day nine after his last dose of Levaquin (antibiotic). He is already noticing a difference how he feels; he is coughing more and he has more pain. Thank goodness for drugs to help ease the pain. Hopefully, this vicious cycle of pneumonia on and off again will end.
One week from today, he will have another round of chemotherapy. We are looking forward (with much trepidation) to the days following. We are preparing for much vomit and sleeping (hopefully not at the same time).
Sunday, January 23, 2011
What a Week!
What a week this has been. I left, very reluctantly, to go to my Arbonne convention in Las Vegas. I was so worried that Rob would get worse as the week wore on.
All during the week, he didn't feel well at all. I am grateful for friends and family to get the kids to where they needed to go as well as all of their meals so they wouldn't starve.
I am so incredibly grateful that despite my worries of leaving Rob, I was able to go to Las Vegas and enjoy my conference and be with my amazing Arbonne sisters. It was a week of incredible training, surrounded by positive men and woman, and being uplifted! It was nice to have the technology to text my family and have constant communication to know that everyone was well off.
When I returned home on Friday (late - my airplane had electrical issues and we had to de-plane, board another, and were in the air an hour later), Rob's dad drove us straight to Rob's oncologist for his first round of chemo.
We saw a physician's assistant before starting his chemo. His blood pressure & weight looked good (despite not eating more than a meal's worth of food during an entire week). His oxygen levels, however, were dismal. Remember how they were 84% when we were at the ER five days earlier? Well, on two liters of oxygen, they were at 83%. Yeah, they moved pretty quickly to increase it to four. Huh. Not sure how we can know this in the future. I am planning on contacting the home health agency to have them come out to our home periodically to check it - don't want it slowly slipping and have no idea.
Saturday (yesterday), he felt absolutely terrible. He received scripts for three, yes three more (he already had one) anti-nausea medicine. Not working so well. Between being sick and feeling sick, it was a very busy day. Holy moley.
We decided that we are going to find one thing each day for which to be grateful. I won't tell you what Friday's gratitude entry was - pitiful, really, but Saturday, it was: "I was finally able to sleep during the day." That is spectacular!
Generally, sleep is the one thing we can look forward to when unwell, but that has alluded Rob for the past week. He vacillates between our bed (which is now on an angle - I say it is 45 degrees, but Rob assures me that it is not) and his cancer chair (remember the Lazy Boy?).
Today, he was awake for about three hours total. Yes, he has gotten back into his newborn sleeping habits again.
All during the week, he didn't feel well at all. I am grateful for friends and family to get the kids to where they needed to go as well as all of their meals so they wouldn't starve.
I am so incredibly grateful that despite my worries of leaving Rob, I was able to go to Las Vegas and enjoy my conference and be with my amazing Arbonne sisters. It was a week of incredible training, surrounded by positive men and woman, and being uplifted! It was nice to have the technology to text my family and have constant communication to know that everyone was well off.
When I returned home on Friday (late - my airplane had electrical issues and we had to de-plane, board another, and were in the air an hour later), Rob's dad drove us straight to Rob's oncologist for his first round of chemo.
We saw a physician's assistant before starting his chemo. His blood pressure & weight looked good (despite not eating more than a meal's worth of food during an entire week). His oxygen levels, however, were dismal. Remember how they were 84% when we were at the ER five days earlier? Well, on two liters of oxygen, they were at 83%. Yeah, they moved pretty quickly to increase it to four. Huh. Not sure how we can know this in the future. I am planning on contacting the home health agency to have them come out to our home periodically to check it - don't want it slowly slipping and have no idea.
Saturday (yesterday), he felt absolutely terrible. He received scripts for three, yes three more (he already had one) anti-nausea medicine. Not working so well. Between being sick and feeling sick, it was a very busy day. Holy moley.
We decided that we are going to find one thing each day for which to be grateful. I won't tell you what Friday's gratitude entry was - pitiful, really, but Saturday, it was: "I was finally able to sleep during the day." That is spectacular!
Generally, sleep is the one thing we can look forward to when unwell, but that has alluded Rob for the past week. He vacillates between our bed (which is now on an angle - I say it is 45 degrees, but Rob assures me that it is not) and his cancer chair (remember the Lazy Boy?).
Today, he was awake for about three hours total. Yes, he has gotten back into his newborn sleeping habits again.
Sunday, January 16, 2011
Wild and Wacky Weekend
Friday, Rob had an appointment to receive his B-12 shots in preparation for the chemo the following week. The doctor wanted to see him as well since he is feeling crummy again. Rob left work early so he could get to the appointment on time. When he got home, he wasn't feeling well at all. He took his temperature and it was 101.7. He rested for a little while.
Our kids were out of school on Friday. We thought it might be good for them to come and see where Rob's chemo will take place - make it less scary for them. Jacob ended up going to a friend's home to work on his science fair project. So it was only Gabrielle and Noah that accompanied us.
When we got to his appointment, Rob was looking a little (well a lot) awful. The nurse recorded his vitals. He had lost 3.5 pounds since last week, his oxygen levels were 95 (if I remember correctly), and his blood pressure was good. However, his temperature was 103. I didn't think that was too high - after all we don't get too concerned with children's being that high. The nurse let me know that a fever that high is never a good thing in adults.
They whisked him into the chemotherapy area and inserted an IV and doused him full of IV fluids and retrieved some blood to run some tests. We explained that his pneumonia really hasn't gone away since the beginning of December.
Rob's cycle of antibiotics:
Anywhooo. The physician's assistant that saw Rob told us that something else is going and he was going to admit him. They would get some IV antibiotics and possibly start his chemotherapy early.
Meanwhile, Gabrielle and Noah are getting a little worried. It was close to the time when Rob's sister, Tarali, was leaving work (she works one floor below in the radiation therapy department). She took them home for us since we weren't sure how long things would take. She had to talk to them a bit as they were feeling distressed.
When I got back from the hand-off, the PA said, "Well, it looks like his white blood count isn't really any different than last week and the blood culture won't be back for a few days. We are going to give you some different antibiotics to see if these work better. We aren't going to admit you now, but if your fever doesn't go away, if you feel worse, or you have trouble breathing, you need to go to the emergency room immediately." We promised and went home.
Friday evening: coughing, fever
Saturday: coughing (surprised?), fever, up all night, fever, coughing
Sunday: exhausted from no sleeping and abdomen sore from all the coughing, looking pretty much terrible.
Rob stayed at home today instead of going to church. During the meeting, Noah was having a difficult time being still. He is very worried about Rob's state of health. I asked him if I were to text him, would that ease his mind. (Yes, I know that I shouldn't be using my phone to text in the middle of church, but, I think that this is a very good reason to do so.)
Noah was able to communicate with his dad and I was able to find out whether we needed to go the the ER or wait until tomorrow to see his oncologist. It was decided to go to the ER.
We got there and his heart rate was 130 and his oxygen level was 84 (levels 90 and lower is in the danger zone). The triage nurse quickly got some oxygen and a wheelchair and put his chart in the 'orange' zone (yellow=people can wait, orange=get 'em in quick, red=they are dying right now).
Long story short (or five hours later) - Rob had IV antibiotics, anti-nausea meds, an oral dose of antibiotics, an X-ray, a blood panel, and another blood culture. He is now on oxygen. We are not certain whether this will be a permanent fixture around the house, work, etc., but he sure looks cute, what with the clear tubing up his nose, around his ears, and around his neck like beautiful jewelry.
It was a little scary seeing the oxygen level so low. Generally, his is generally between 94-96.
Honestly, I know that both Rob & I are looking forward to sleep tonight (that is if his coughing will let up enough to do so).
Our kids were out of school on Friday. We thought it might be good for them to come and see where Rob's chemo will take place - make it less scary for them. Jacob ended up going to a friend's home to work on his science fair project. So it was only Gabrielle and Noah that accompanied us.
When we got to his appointment, Rob was looking a little (well a lot) awful. The nurse recorded his vitals. He had lost 3.5 pounds since last week, his oxygen levels were 95 (if I remember correctly), and his blood pressure was good. However, his temperature was 103. I didn't think that was too high - after all we don't get too concerned with children's being that high. The nurse let me know that a fever that high is never a good thing in adults.
They whisked him into the chemotherapy area and inserted an IV and doused him full of IV fluids and retrieved some blood to run some tests. We explained that his pneumonia really hasn't gone away since the beginning of December.
Rob's cycle of antibiotics:
- After the second day of antibiotics, he starts feeling better.
- Then about ten days after the last dose of antibiotics he starts feeling crummy again.
Anywhooo. The physician's assistant that saw Rob told us that something else is going and he was going to admit him. They would get some IV antibiotics and possibly start his chemotherapy early.
Meanwhile, Gabrielle and Noah are getting a little worried. It was close to the time when Rob's sister, Tarali, was leaving work (she works one floor below in the radiation therapy department). She took them home for us since we weren't sure how long things would take. She had to talk to them a bit as they were feeling distressed.
When I got back from the hand-off, the PA said, "Well, it looks like his white blood count isn't really any different than last week and the blood culture won't be back for a few days. We are going to give you some different antibiotics to see if these work better. We aren't going to admit you now, but if your fever doesn't go away, if you feel worse, or you have trouble breathing, you need to go to the emergency room immediately." We promised and went home.
Friday evening: coughing, fever
Saturday: coughing (surprised?), fever, up all night, fever, coughing
Sunday: exhausted from no sleeping and abdomen sore from all the coughing, looking pretty much terrible.
Rob stayed at home today instead of going to church. During the meeting, Noah was having a difficult time being still. He is very worried about Rob's state of health. I asked him if I were to text him, would that ease his mind. (Yes, I know that I shouldn't be using my phone to text in the middle of church, but, I think that this is a very good reason to do so.)
Noah was able to communicate with his dad and I was able to find out whether we needed to go the the ER or wait until tomorrow to see his oncologist. It was decided to go to the ER.
We got there and his heart rate was 130 and his oxygen level was 84 (levels 90 and lower is in the danger zone). The triage nurse quickly got some oxygen and a wheelchair and put his chart in the 'orange' zone (yellow=people can wait, orange=get 'em in quick, red=they are dying right now).
Long story short (or five hours later) - Rob had IV antibiotics, anti-nausea meds, an oral dose of antibiotics, an X-ray, a blood panel, and another blood culture. He is now on oxygen. We are not certain whether this will be a permanent fixture around the house, work, etc., but he sure looks cute, what with the clear tubing up his nose, around his ears, and around his neck like beautiful jewelry.
It was a little scary seeing the oxygen level so low. Generally, his is generally between 94-96.
Honestly, I know that both Rob & I are looking forward to sleep tonight (that is if his coughing will let up enough to do so).
Monday, January 10, 2011
A New Year
As much as I enjoyed the holidays with the family, I am really glad that December is over. No, it is not because of all the hustle and bustle of the season. Rob really had a rough month.
As you read in the previous post, he had pneumonia at the beginning of the month. He sort of got better, but not really. The coughing (which is ever present anyway) seemed to lessen a bit after being on his antibiotic, but then about 13 days after his last dose, he started right back up again. The cracked/broken rib didn't help much. The pain was pretty intolerable.
So: to sum up December...
Coughing
PainCoughing
Painand
moreCoughing.
Cancer: growing (surprised, right?) - the largest tumor (according to the report) is 9 cm long by 4.5 cm wide - wahoo! So cute. The little tyke just trying to grow up.
Anyway, I digress.
Basically, he said that at this point in time, if we are going to do something, we really need to it now. He gave us three options.
- Do nothing
- Start chemotherapy - the kind that he would have Rob take is Carboplatin/Alimpta. Supposedly, he will not lose his hair (what hair anyway?), but there will be some side effects like fatigue, possible neuropathy (where your extremities hurt and tingle like someone is poking you with pins, and every step hurts), and we read about some other possible side effects like nausea and weight loss.
- Join a Phase One Study (that means that they just finished testing on animals and are ready for the human guinea pigs) at Huntsman at the University of Utah. We don't know any of the side effects or whether he would be a candidate.
Sunday, we had the whole family fasting and praying on our behalf. Poor Noah (he is eight). He thought that he was going to pass out from not eating. It was a big deal for him.
I feel like this whole week has been like I am sitting on a giant pendulum. At first, I was indifferent to the chemo option. Next, I worry how it will effect Rob and whether it is going to decrease his quality of life. We know that this will not cure him. Then, I think, well, it may just assist in making those pesky tumors stop growing. ARGH!
Rob has decided to try the chemo route once more. I think that it is safe to say that the study is out of the picture at this point.
This Friday, he will go in to visit the lovely nurses at Utah Cancer Specialists, and get a script for folic acid and receive a B-12 shot (both of which are to help stave off neuropathy).
The following Friday, January 21, we will go and get the poison pumped into his body, in hopes that it will make the cancer not grow as quickly. After two to three treatments (each three weeks apart) we will re-evaluate. He will have another scan and we will decide whether to continue with the chemotheraphy.
With this breaking news, I will probably be updating the blog a bit more - to keep you apprised of his health. I know you are all waiting with bated breath...
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