Oct 15 was my last blog update. At that time my treatment was changed to a 3 week chemo/1 week off cycle. I am still in the same cycle which is really good. The dosage of the medicine was recently increased but the cycle remains the same.
I have good and bad days and some in between. The bad days can be brutal, I usually find myself in bed for the entire day using all my energy to turn my head. Those bad days are few which I am thankful for. An 'in between day' is part good part bad (which is probably obvious to you)but the bad part is much milder than a bad day.
I am back to bowling and am really happy about that. It gives me something to look forward to, social activity and physical activity all at one time. I did not bowl the month of November, there were several bad days that month.
Jim and I spent Thanksgiving by ourselves, Jenn had dinner at her house and Jimmy and Josh went there. I was not feeling up to going out that day so we stayed home. Jim made a turkey dinner for us and he did a fantastic job. I spent the day laying on the couch watching him. I honestly don't know what I would do without him. He does everything for me, housework, laundry, shopping, cooking, name it he does it.
We had a great Christmas. I actually went Christmas shopping three times which Jim and I thought was great. Considering how little I get out and how much energy it takes it was pretty good. I know how much my body can take and I know when to stop.
The kids came over Christmas Eve to exchange gifts and it was really a nice day. What made it even better was I was feeling good that day so I was able to be up and around and participate instead of watching from the couch. For anyone who has a FaceBook account you can go see some of our Christmas pictures.
This year will be the first year in many that we will be staying home for New Year's Eve. Normally we would be in Boston and even with the good weather they are predicting (45°) I don't think I would be comfortable in Boston. I never know when the 'bad' is going to hit. So this year we will stay home, order Chinese (doesn't everyone??) and watch the 3 Stooges Marathon until we fall asleep...which most likely will be 9:30...lol
As far as my health the Dr tells me I am doing very well. This treatment plan is working well. I had a CAT Scan done on Tuesday of this week and had planned on calling for the results today but SURPRISE! the Dr's office is closed today. I will have to call on Monday. For now, I am going on the theory that no news is good news. I believe they would have called if there was something significant going on.
I hope the New Year brings all good things not just for me but for everyone.
Thank you for your support as I go through this difficult journey. A note, email or card always puts a smile on my face!
I am going to try to update more frequently as it is next to impossible to recall everything I've been through in 2 1/2 months.
Happy New Year everyone!
Friday, December 31, 2010
Friday, October 15, 2010
New medicine and cycle plan
Based on the changes I've gone through in the last four weeks and the results of the CT Scan we have changed the cycle and medicine again. The pain in my stomach is a mass and the most recent medicine did not work well on it. The medicine did shrink the tumor in my lung but the mass grew larger. The mass is ON the colon, not in but on.
It is a three week cycle this time, one day a week for three weeks, one week off. Between Cycle three and four there will be another CT Scan to determine progress and plan of action, continue as is or change again.
My white blood count went up from 9 to 18 but in light of the fact that I've technically had no treatment for four weeks it was almost expected. The expectation is it should drop next week. The cancer markers took a HUGE jump up from 48 to 122. This was expected. I am not sure how long it will take for them to go down but as long as they are going down I am ok with it.
Anita (my chemo nurse) told me that 99 out of 100 patients have no issues with this medicine. One in 100 does in the first, second and possibly third treatment. Of course, I am the one in 100. The medicine targeted the mass directly and immediately increased my pain. This is actually a good thing..it means the medicine is doing its job. Painful for me for a period of time but I will deal with it if it shrinks the mass.
and to end the rough chemo treatment as we were walking out the door an older woman reached out to me and said 'Cancer survivor?' I said I am battling cancer.
she said 'and you will beat it. I am a 10 year survivor and I know you will beat it. You are beautiful'
The right person comes along at the right time....
It is a three week cycle this time, one day a week for three weeks, one week off. Between Cycle three and four there will be another CT Scan to determine progress and plan of action, continue as is or change again.
My white blood count went up from 9 to 18 but in light of the fact that I've technically had no treatment for four weeks it was almost expected. The expectation is it should drop next week. The cancer markers took a HUGE jump up from 48 to 122. This was expected. I am not sure how long it will take for them to go down but as long as they are going down I am ok with it.
Anita (my chemo nurse) told me that 99 out of 100 patients have no issues with this medicine. One in 100 does in the first, second and possibly third treatment. Of course, I am the one in 100. The medicine targeted the mass directly and immediately increased my pain. This is actually a good thing..it means the medicine is doing its job. Painful for me for a period of time but I will deal with it if it shrinks the mass.
and to end the rough chemo treatment as we were walking out the door an older woman reached out to me and said 'Cancer survivor?' I said I am battling cancer.
she said 'and you will beat it. I am a 10 year survivor and I know you will beat it. You are beautiful'
The right person comes along at the right time....
Friday, October 8, 2010
Long stressful wait for results
I had the CT Scan done on Tuesday, Sept 28, blood work on Friday Oct 1 and met with
Dr Rooney on Tuesday Oct 5. The wait in between was long and stressful. I felt lousy physically and emotionally a wreck. Because I am not a Dr and I have nothing to do to occupy my time I spent most of it thinking all the possible negative things.
So, the outcome.
I do not have four tumors. That is a gross misunderstanding of information that I have been carrying for 6 months now. There is one in my lung and it has gotten smaller and that is just about all we discussed about that tumor. There is a second tumor/mass that is in behind the intestines, in front of the spine and below the pancreas. This is the ONE that I referred to as in my stomach. Jim referred to it as in my back. I believe it is in my abdomen. I will confirm next visit. But the fact of the matter is it is only one tumor.
The brain tumor brought the best news. The tumor presents itself in a specific manner on the CT Scan. When the tumor is gone it leaves behind scar tissue which also presents itself in a specific manner on the CT Scan. And, they are exactly the same. So the Dr's take the scan and my physical appearance, cognitive skills and determine if what they are seeing is the tumor or scar tissue. In my case Dr Rooney feels confident it is scar tissue. There has never been a problem with my cognitive skills and believe it or not the fact that I am bowling is a huge factor in the determination.
So, now that I have more information and less stress, I believe part of why I've felt lousy for the past month or so is because the medicine stopped working. I called to let the Dr know my stomach pain returned a week after my markers went up and now it's been over three weeks without a treatment. We've had to increase the pain med dosage to help with that. I will start a new treatment plan next week. Three weeks with one treatment each week, one week off then three weeks with one treatment each week, one week off. The blood work will actually determine how long this goes on for. I am hoping the new medicine works, it was really nice not having any pain.
Another two weeks and I will be off the steroids which is good. I asked the Dr about foods and drink, what should I avoid etc. I specifically asked about caffeine/coffee and he said 'If you like it drink it. As far as I am concerned it is one of the four major food groups'!! Guess we know where he stands on coffee.
That's it for now.
Dr Rooney on Tuesday Oct 5. The wait in between was long and stressful. I felt lousy physically and emotionally a wreck. Because I am not a Dr and I have nothing to do to occupy my time I spent most of it thinking all the possible negative things.
So, the outcome.
I do not have four tumors. That is a gross misunderstanding of information that I have been carrying for 6 months now. There is one in my lung and it has gotten smaller and that is just about all we discussed about that tumor. There is a second tumor/mass that is in behind the intestines, in front of the spine and below the pancreas. This is the ONE that I referred to as in my stomach. Jim referred to it as in my back. I believe it is in my abdomen. I will confirm next visit. But the fact of the matter is it is only one tumor.
The brain tumor brought the best news. The tumor presents itself in a specific manner on the CT Scan. When the tumor is gone it leaves behind scar tissue which also presents itself in a specific manner on the CT Scan. And, they are exactly the same. So the Dr's take the scan and my physical appearance, cognitive skills and determine if what they are seeing is the tumor or scar tissue. In my case Dr Rooney feels confident it is scar tissue. There has never been a problem with my cognitive skills and believe it or not the fact that I am bowling is a huge factor in the determination.
So, now that I have more information and less stress, I believe part of why I've felt lousy for the past month or so is because the medicine stopped working. I called to let the Dr know my stomach pain returned a week after my markers went up and now it's been over three weeks without a treatment. We've had to increase the pain med dosage to help with that. I will start a new treatment plan next week. Three weeks with one treatment each week, one week off then three weeks with one treatment each week, one week off. The blood work will actually determine how long this goes on for. I am hoping the new medicine works, it was really nice not having any pain.
Another two weeks and I will be off the steroids which is good. I asked the Dr about foods and drink, what should I avoid etc. I specifically asked about caffeine/coffee and he said 'If you like it drink it. As far as I am concerned it is one of the four major food groups'!! Guess we know where he stands on coffee.
That's it for now.
Tuesday, September 21, 2010
No single digits
went the wrong way....markers went from 18 to 48
CT scan next Tuesday
Very Discouraged
CT scan next Tuesday
Very Discouraged
Monday, September 20, 2010
Extended lab visit
So, it's been three weeks tomorrow since my last chemo treatment. Each three week cycle is preceded by labs...they draw blood from my port the day before to determine where I stand and if I can actually have the chemo treatment. This typically takes 15 minutes. Today it took an hour and a half. Apparently there was a blockage in the tube. The could push fluids in but could not get blood out. They use medicine to do a cath flush. The medicine is frozen when they get it so they asked Jim to sit on it for five (5) minutes to thaw it out. That's all it took too! Anyway, it worked, it cleared the blockage and we were on our way. It had to be today though, I am not feeling good today and everyone there could tell. They kept asking me if I was okay and apologizing....like it was there fault this week the tube was blocked.
I went to the eye Dr on Saturday and as expected she gave me a prescription for reading glasses only. My vision is fine. She wants me to get bifocals so I am wearing glasses all the time to protect my one good eye. I have not decided if I am getting the script filled yet...$$$$.
The past couple of weeks I've had mostly ok days. I say ok because sometimes part of the day is good and sometimes part of the day is not so good.
I will update my blog either tomorrow after chemo or Thursday after bowling. I did pretty good bowling last week and my legs are getting stronger. It will be the end of the season (if at all) that I am able to bowl regular. I am definitely the slow down on the team. Last year I would be home by five of nine or 9:00...now it is closer to 9:30. I hope this isn't an issue for the other bowlers.
I went to the eye Dr on Saturday and as expected she gave me a prescription for reading glasses only. My vision is fine. She wants me to get bifocals so I am wearing glasses all the time to protect my one good eye. I have not decided if I am getting the script filled yet...$$$$.
The past couple of weeks I've had mostly ok days. I say ok because sometimes part of the day is good and sometimes part of the day is not so good.
I will update my blog either tomorrow after chemo or Thursday after bowling. I did pretty good bowling last week and my legs are getting stronger. It will be the end of the season (if at all) that I am able to bowl regular. I am definitely the slow down on the team. Last year I would be home by five of nine or 9:00...now it is closer to 9:30. I hope this isn't an issue for the other bowlers.
Friday, September 3, 2010
CT Scan update
All clear. Now I can get a referral for the eye exam. The CT Scan was done to confirm the chemo and cancer are not causing vision issues.
Evidently this CT Scan is showing two tumors on the brain. I was not aware of that. One has actually gotten smaller. The second one is unclear and undefined and needs an MRI to confirm. It did not show up on the first MRI I had done. The Dr is pleased with the results and does not seem concerned at this point with tbe second one as he is not convinced what it is.
Evidently this CT Scan is showing two tumors on the brain. I was not aware of that. One has actually gotten smaller. The second one is unclear and undefined and needs an MRI to confirm. It did not show up on the first MRI I had done. The Dr is pleased with the results and does not seem concerned at this point with tbe second one as he is not convinced what it is.
Thursday, September 2, 2010
Cancer markers dropping
Three weeks ago when I updated my blog I didn't focus much on what was happening with my cancer so part of this blog will be a recap. The good news is we are headed in the right direction.
The first time I heard about cancer markers mine was a 97 and it had dropped to a 45. This is the direction I need to be going in, down. Unfortunately the next treatment I had I suffered an allergic reaction. The treatment had to be stopped which in effect meant I had no treatment. My next visit showed my cancer markers went up to 61. I think I was the only one who didn't expect that, I thought it would have at least stayed at 45. My medicine was changed, this is the third medicine now and my next visit showed a huge improvement, the cancer markers went from 61 to 30. I went for treatment this Tuesday, August 31 and my cancer markers went from 30 to 18. We asked if the goal is zero and were told that the cancer markers will never really get to zero but we will be happy with single digits. So, that is the goal for the cancer markers on Sept 21, my next chemo treatment.
The Dr said I have to start weaning myself off the steroids and pain pills. As the tumor shrinks the pain should subside. So, on Wednesday August 11 I started following the Dr's instructions. By Friday I couldn't walk and my stomach pain was at a level 4, not too bad but it had been a zero. It took a week for me to get back to the same comfort level I had. We have agreed we will try this again after the next treatment. The steroids affect my appetite (increase it) and weaken my leg muscles even though the medicine is supposed to make my legs not hurt(which it does).
Some of you already know this but for those of you who don't I have had a problem with food for the last three weeks. I can't stop eating. If I get the thought of food in my head I can't stop thinking about it until I eat it. Even if it means sending Jim to the store to buy it for me. We went to the market one day for a junk food run, this is what we bought, potato chips, fritos, cheese curls, peanut M&M's, fun size Snickers, KitKats, 3 Muskateers, Milky Ways, fruit cocktail cups, pear cups, pepperoni, cheese and crackers, Good Humor Chocolate eclair bars, snow peas. I sent Jim to Friendly's one night for a hot fudge sundae. I ate that around 9:00 and followed it with cheese, crackers and pepperoni at 10:00 AT NIGHT. I was laying in bed one night, Jim was watching the news and I picked up my head and said 'I want Rice Krispies and bananas for breakfast' and then five minutes later I picked my head up and asked Jim 'What do we put in tacos? And, when I went for my treatment on Tuesday they weighed me, as they do all the time and I gained 7 pounds. That was in three weeks. No wonder with all that junk food.
I have a prescription for my stomach, it's actually prescription Prilosec. I called in for a refill and the pharmacy told me the insurance company will not pay for it as they have determined I can only have 90 of these pills a year. I had to contact the Dr and ask her to send a letter to the insurance company for approval for the refill. Not sure if I have to do this every month now or what but it seems odd to me that the insurance company is now dictating what medicines I take. When I spoke with them they said some Dr's are abusing the newer, high costing medicines. They work the best so instead of making the patient go through the various medicine stages they are jumping right to the high end and the insurance company doesn't want to pay for it. I am paying for my health insurance which includes prescriptions yet they want me to pay out of pocket for over the counter medicines that don't necessarily work, I was on them back in January. I've been on this medicine since February...seems to me I shouldn't have to go backwards.
I called to make an eye appointment. I use reading glasses and from time to time my vision blurs. I am not sure if this is related to the chemo or just my age but I would like to make sure my vision does not become a problem. The eye Dr's office called me back to let me know that the insurance company will only cover one visit every two years. So, again, I called the Dr to ask if they could give me a referral because of the chemo and at first they said not a problem we will take care of it. They called today to let me know they want to do a head scan first. That is scheduled for tomorrow morning at 8:30. I will update the results as soon as I get them.
This is stuff I shouldn't have to deal with.
The good news. I've had good days since the new (third) medicine. This past week has been the busiest for me since I was first diagnosed in March. On Saturday we had a cookout, my sister and her daughter flew in from Missouri and all my family was here. (Except one sister in Nevada). Let me tell you, we had enough food for 100 people! Italians have a problem with portions...lol. Everything was delicious and it was a perfect weather day, I am really glad we had the cookout. On Sunday we went to Foxwoods to play Bingo, two sisters, two nieces and one nephew. Jim came with us (I cannot drive) and he played the slots. No one won but we had a great time. On Monday I had to have blood drawn for my next chemo trip. On Tuesday I had chemo (that's when they told me my cancer markers went from 30 to 18). On Wednesday I went bowling.
I actually asked the Dr about bowling and she said listen to your body it will tell you what you can do. I asked if I should wear a mask and she said no, I don't need one. Don't let anyone hug me, kiss me or cough in my face, common sense stuff. She said bowling would be good for me, it gets me out of the house, I get to see 'other' people and the exercise will be good for me. Bowling was much harder than I expected. I set my expectations too high. I fell after throwing each ball in my practice box. My legs are not strong enough to step and slide. I did not go down hard but I did go down with each ball. I had to adjust and stand and throw. That took me most of the night to figure out and my average dropped about 20 points. Everyone at the bowling alley was great, offering to help me up which I refused, I need to do that myself. They also offered different exercise options that I can do to strengthen my legs. I started them today, ten repetitions of three different exercises. My legs hurt now but I will continue to do this everyday until I have my strength back. I enjoy bowling and want to continue.
I asked about driving and as long as I am on the pain medicine I cannot drive. She said 'You are not as alert as you think you are'. If anything happens I could be arrested for driving under the influence of narcotics (or whatever they would charge me with). Luckily for me Jim drives me anywhere I need or want to go. We typically go to the Dr's and the market. Where else am I going to go???
I mentioned somewhere, not sure if it is in my blog or in emails, Jenn is pregnant. They have been trying for a very long time and were ecstatic when they found out. She went to the Dr yesterday and learned they are having a girl. (I personally did not want to know but I was out voted and very quickly at that!) She is due Feb 1.
I think I have covered everything from the last six weeks.
Thank you to everyone sending prayers, good wishes, emails and cards. All is very much appreciated and if you ask me your prayers are working.
The first time I heard about cancer markers mine was a 97 and it had dropped to a 45. This is the direction I need to be going in, down. Unfortunately the next treatment I had I suffered an allergic reaction. The treatment had to be stopped which in effect meant I had no treatment. My next visit showed my cancer markers went up to 61. I think I was the only one who didn't expect that, I thought it would have at least stayed at 45. My medicine was changed, this is the third medicine now and my next visit showed a huge improvement, the cancer markers went from 61 to 30. I went for treatment this Tuesday, August 31 and my cancer markers went from 30 to 18. We asked if the goal is zero and were told that the cancer markers will never really get to zero but we will be happy with single digits. So, that is the goal for the cancer markers on Sept 21, my next chemo treatment.
The Dr said I have to start weaning myself off the steroids and pain pills. As the tumor shrinks the pain should subside. So, on Wednesday August 11 I started following the Dr's instructions. By Friday I couldn't walk and my stomach pain was at a level 4, not too bad but it had been a zero. It took a week for me to get back to the same comfort level I had. We have agreed we will try this again after the next treatment. The steroids affect my appetite (increase it) and weaken my leg muscles even though the medicine is supposed to make my legs not hurt(which it does).
Some of you already know this but for those of you who don't I have had a problem with food for the last three weeks. I can't stop eating. If I get the thought of food in my head I can't stop thinking about it until I eat it. Even if it means sending Jim to the store to buy it for me. We went to the market one day for a junk food run, this is what we bought, potato chips, fritos, cheese curls, peanut M&M's, fun size Snickers, KitKats, 3 Muskateers, Milky Ways, fruit cocktail cups, pear cups, pepperoni, cheese and crackers, Good Humor Chocolate eclair bars, snow peas. I sent Jim to Friendly's one night for a hot fudge sundae. I ate that around 9:00 and followed it with cheese, crackers and pepperoni at 10:00 AT NIGHT. I was laying in bed one night, Jim was watching the news and I picked up my head and said 'I want Rice Krispies and bananas for breakfast' and then five minutes later I picked my head up and asked Jim 'What do we put in tacos? And, when I went for my treatment on Tuesday they weighed me, as they do all the time and I gained 7 pounds. That was in three weeks. No wonder with all that junk food.
I have a prescription for my stomach, it's actually prescription Prilosec. I called in for a refill and the pharmacy told me the insurance company will not pay for it as they have determined I can only have 90 of these pills a year. I had to contact the Dr and ask her to send a letter to the insurance company for approval for the refill. Not sure if I have to do this every month now or what but it seems odd to me that the insurance company is now dictating what medicines I take. When I spoke with them they said some Dr's are abusing the newer, high costing medicines. They work the best so instead of making the patient go through the various medicine stages they are jumping right to the high end and the insurance company doesn't want to pay for it. I am paying for my health insurance which includes prescriptions yet they want me to pay out of pocket for over the counter medicines that don't necessarily work, I was on them back in January. I've been on this medicine since February...seems to me I shouldn't have to go backwards.
I called to make an eye appointment. I use reading glasses and from time to time my vision blurs. I am not sure if this is related to the chemo or just my age but I would like to make sure my vision does not become a problem. The eye Dr's office called me back to let me know that the insurance company will only cover one visit every two years. So, again, I called the Dr to ask if they could give me a referral because of the chemo and at first they said not a problem we will take care of it. They called today to let me know they want to do a head scan first. That is scheduled for tomorrow morning at 8:30. I will update the results as soon as I get them.
This is stuff I shouldn't have to deal with.
The good news. I've had good days since the new (third) medicine. This past week has been the busiest for me since I was first diagnosed in March. On Saturday we had a cookout, my sister and her daughter flew in from Missouri and all my family was here. (Except one sister in Nevada). Let me tell you, we had enough food for 100 people! Italians have a problem with portions...lol. Everything was delicious and it was a perfect weather day, I am really glad we had the cookout. On Sunday we went to Foxwoods to play Bingo, two sisters, two nieces and one nephew. Jim came with us (I cannot drive) and he played the slots. No one won but we had a great time. On Monday I had to have blood drawn for my next chemo trip. On Tuesday I had chemo (that's when they told me my cancer markers went from 30 to 18). On Wednesday I went bowling.
I actually asked the Dr about bowling and she said listen to your body it will tell you what you can do. I asked if I should wear a mask and she said no, I don't need one. Don't let anyone hug me, kiss me or cough in my face, common sense stuff. She said bowling would be good for me, it gets me out of the house, I get to see 'other' people and the exercise will be good for me. Bowling was much harder than I expected. I set my expectations too high. I fell after throwing each ball in my practice box. My legs are not strong enough to step and slide. I did not go down hard but I did go down with each ball. I had to adjust and stand and throw. That took me most of the night to figure out and my average dropped about 20 points. Everyone at the bowling alley was great, offering to help me up which I refused, I need to do that myself. They also offered different exercise options that I can do to strengthen my legs. I started them today, ten repetitions of three different exercises. My legs hurt now but I will continue to do this everyday until I have my strength back. I enjoy bowling and want to continue.
I asked about driving and as long as I am on the pain medicine I cannot drive. She said 'You are not as alert as you think you are'. If anything happens I could be arrested for driving under the influence of narcotics (or whatever they would charge me with). Luckily for me Jim drives me anywhere I need or want to go. We typically go to the Dr's and the market. Where else am I going to go???
I mentioned somewhere, not sure if it is in my blog or in emails, Jenn is pregnant. They have been trying for a very long time and were ecstatic when they found out. She went to the Dr yesterday and learned they are having a girl. (I personally did not want to know but I was out voted and very quickly at that!) She is due Feb 1.
I think I have covered everything from the last six weeks.
Thank you to everyone sending prayers, good wishes, emails and cards. All is very much appreciated and if you ask me your prayers are working.
Tuesday, August 10, 2010
Cut to the chase
The past three weeks have been kind to me and I was very worried it meant the medicine was not working. The doctor explained as the tumor shrinks I will feel better, less side affects from the disease. The medicine we are using is intended to lessen the chemo side affects as well. Hence I feel better.
I went to a meeting for my bowling league last week and was horribly offended by one of the bowlers. She asked me if I should really be there....I was wearing a face mask to protect myself from the people there, not to protect them from me. Had she not visibly stepped away from me I would have thought her comment was out of concern for me...the step back and further avoidance showed me that was not the case.
Yesterday I went for my labs, while waiting a woman approached me, gently put her hand on my left arm and told me 'You are beautiful. Ten years ago, I was you.'
I went to a meeting for my bowling league last week and was horribly offended by one of the bowlers. She asked me if I should really be there....I was wearing a face mask to protect myself from the people there, not to protect them from me. Had she not visibly stepped away from me I would have thought her comment was out of concern for me...the step back and further avoidance showed me that was not the case.
Yesterday I went for my labs, while waiting a woman approached me, gently put her hand on my left arm and told me 'You are beautiful. Ten years ago, I was you.'
Thursday, July 29, 2010
Follow up to Dr Visit Tuesday the 27th
So, I had to have blood drawn on Tuesday. This is a nadir test, not nadis as I said last week. It is nothing more than a normal routine blood test. It was done because of the terminated chemo treatment, the new treatment and the fact that my levels would not be checked soon enough. It is still two weeks away. So, safety factor I'd say. The worst part of the test was we had to wait for the results. Appointment was at 12:30 and we got done at 2:30. I faired pretty well, my potassium level is much better now up into the range where it belongs. My glucose is a little high but we all agree it is the peanut butter cookies I am eating. Some medicines have to be taken with food. When I take my pills at 10:00 at night I take a quarter of a cookie....goes to show you how much sugar there is an a peanut butter cookie. My cancer marker actually went up from 47 to 61 but they explained they expected that because of the terminated treatment. They expect it to go down next time.
For those at OneShield that I got to see on Monday I just went you to know it was great to see you, wish I could have visited longer and seen more people. All in good time though, I'll be back!!
For those at OneShield that I got to see on Monday I just went you to know it was great to see you, wish I could have visited longer and seen more people. All in good time though, I'll be back!!
Tuesday, July 20, 2010
1st treatment with second new medicine
Things went smoothly today...the treatment is usually uneventful. My potassium level went down, no explaination so they gave me another liter of potassium today. I have to go in again next week for 'nadis' and will update again after that.
This new treatment takes 1/2 hour but with all the prep work we are there for at least 2 1/2 hours. I was told this new medicine will cause more fatigue than the last one but not as much as the first one. I'll take it....the last one was not so bad.
Yesterday (Monday) I had to have blood drawn (love my port!!!) and when we came out we discovered someone stole one of the M&M Red Sox decal off my car. How sad.
OK, that's all for now.
This new treatment takes 1/2 hour but with all the prep work we are there for at least 2 1/2 hours. I was told this new medicine will cause more fatigue than the last one but not as much as the first one. I'll take it....the last one was not so bad.
Yesterday (Monday) I had to have blood drawn (love my port!!!) and when we came out we discovered someone stole one of the M&M Red Sox decal off my car. How sad.
OK, that's all for now.
Tuesday, July 13, 2010
It's been awhile and I've received emails from people asking when I am going to update my blog again. First, I apologize for the delay.
The chemo treatments make me very fatigued and they are cumulative so the more time that goes by the less energy I have hence making it difficult to sit and update the blog.
I've managed to read emails that you have sent but have not been able to respond, don't take it personal! I have even turned down phone calls because I did not have the energy to speak.
OK, so, as noted in an earlier entry I dehydrate very quickly so we set up an in home infusion. (Excellent benefit). A nurse comes to my home when I call and puts the needle in my port. Jim, my husband, does the rest. We can leave the needle in for up to five days before it must be removed. Any time I have the needle in we can infuse fluids. This has worked very well as it restores my energy and hydration level. This was set up after the first chemo treatment.
The days after the 2nd and 3rd treatments were very much like the days after the first treatment, lots of fatigue, dehydration/rehydration.
I went for a CT Scan on June 16. Funny story, we were a day late. I insisted every piece of paperwork I had said June 16, the card, the letter in the mail, the date on my calendar...when I got home I checked and lo and behold everything said June
15 including the calendar. I actually wrote 'June 15, 2010' on June 16. So, they moved the appointment in their books up to the 16th and did the CT scan. Interesting how when you make an appointment it can be three weeks or longer but I was able to have it done the next day. Anyway.....
On June 22 I met with Dr Rooney and he asked me how I was feeling...there was really no change in how I felt. He said well, the scan came back showing no change. He looked up and obviously realize we were disappointed with this information because he immediately said this is good news. It's not the best news, the best news would be the tumor is shrinking. The next best news is no change..it means there are no new growths and no growth in the existing ones. It is also an indication that something needs to change. In this case it is the medication. So, he ordered the change and I went off to get the first treatment of this new medication, Taxotere (feel free to look it up).
The first treatment was great, the reaction/response was NOTHING like the first round of chemo. While I had fatigue it was no where near the level of the first round of treatment. I was tired and spent a lot of time in bed but I was able to get up and move around, my appetite was better as well. And of course along with the good it seems there has to be bad. I introduced vomiting to my almost daily routine. The good news/bad news is I was not able to drink water, most of my issue was all water. The body can only hold so much. Towards the end of the 3 week cycle (Wednesday the 7th to Monday the 12th) vomiting was a daily routine and sometimes twice a day. When I went for my blood work we talked about this and the nurse asked me if the nausea pill wasn't working. I forgot I had one...the Dr had given me a new one to try which I did (I am pretty sure I mentioned this, it is the third cousin of marijuana), go ahead laugh and I took ONE and that was the end of that. I hadn't been taking the other pill because up until this time I had no issues with vomiting so I forgot I had it. (To help you understand last night before I went to bed I took all my pills, there were eleven of them, I have to do this twice a day plus every four hours on the pain medication I have more than 11 pills to take daily but that is an example of my night pills)
So this brings us to today. I had my second chemo treatment with the new medicine.
My weight did not change in spite of all the vomiting I've done. My potassium level did not change because of all the vomiting I've done.
My cancer markers showed a great improvement. I am not going to pretend I understand it all but the blood work they do each time I go compares all the levels and I think determines the cancer marker. Down is the way we want to go. Two trips ago it was at 97 this trip it was at 47 so that was a huge improvement. To me that means the new medicine is working.
Last week my nurse explained that this medicine has a history of an allergic reaction. She said it could be shortness of breath, hot flash, lower back pain and several others. She said it's usually the lower back pain or the hot flash and it typically occurs during the second treatment. She was right. I had an allergic reaction, lower back pain. They start the medicine off at a slow drip and gradually move it up. Today they started it at 50 (whatever the unit of measure is) and 20 minutes or so moved it up to 70. Instant back pain and intense, worse than my back labor. She immediately stopped the medication and I was amazed that within 5 seconds I swear there were five people in the room with me including the Dr. They eventually gave me some pain medication (it was all said and done in ten minutes or so). The pain was completely resolved in about 15 minutes.
As a result I could not have my treatment today. They have scheduled a new appointment for next week with a new medicine, similar to this one. We will see how it goes.
SIDE NOTE: The brain scan came back as no change. I have not had a chance to discuss the course of action for this with the Dr. I keep meaning to but so many things come up during the appointment I keep forgetting.
I believe that is everything for now.
Thanks everyone for caring about and following up on me.
The chemo treatments make me very fatigued and they are cumulative so the more time that goes by the less energy I have hence making it difficult to sit and update the blog.
I've managed to read emails that you have sent but have not been able to respond, don't take it personal! I have even turned down phone calls because I did not have the energy to speak.
OK, so, as noted in an earlier entry I dehydrate very quickly so we set up an in home infusion. (Excellent benefit). A nurse comes to my home when I call and puts the needle in my port. Jim, my husband, does the rest. We can leave the needle in for up to five days before it must be removed. Any time I have the needle in we can infuse fluids. This has worked very well as it restores my energy and hydration level. This was set up after the first chemo treatment.
The days after the 2nd and 3rd treatments were very much like the days after the first treatment, lots of fatigue, dehydration/rehydration.
I went for a CT Scan on June 16. Funny story, we were a day late. I insisted every piece of paperwork I had said June 16, the card, the letter in the mail, the date on my calendar...when I got home I checked and lo and behold everything said June
15 including the calendar. I actually wrote 'June 15, 2010' on June 16. So, they moved the appointment in their books up to the 16th and did the CT scan. Interesting how when you make an appointment it can be three weeks or longer but I was able to have it done the next day. Anyway.....
On June 22 I met with Dr Rooney and he asked me how I was feeling...there was really no change in how I felt. He said well, the scan came back showing no change. He looked up and obviously realize we were disappointed with this information because he immediately said this is good news. It's not the best news, the best news would be the tumor is shrinking. The next best news is no change..it means there are no new growths and no growth in the existing ones. It is also an indication that something needs to change. In this case it is the medication. So, he ordered the change and I went off to get the first treatment of this new medication, Taxotere (feel free to look it up).
The first treatment was great, the reaction/response was NOTHING like the first round of chemo. While I had fatigue it was no where near the level of the first round of treatment. I was tired and spent a lot of time in bed but I was able to get up and move around, my appetite was better as well. And of course along with the good it seems there has to be bad. I introduced vomiting to my almost daily routine. The good news/bad news is I was not able to drink water, most of my issue was all water. The body can only hold so much. Towards the end of the 3 week cycle (Wednesday the 7th to Monday the 12th) vomiting was a daily routine and sometimes twice a day. When I went for my blood work we talked about this and the nurse asked me if the nausea pill wasn't working. I forgot I had one...the Dr had given me a new one to try which I did (I am pretty sure I mentioned this, it is the third cousin of marijuana), go ahead laugh and I took ONE and that was the end of that. I hadn't been taking the other pill because up until this time I had no issues with vomiting so I forgot I had it. (To help you understand last night before I went to bed I took all my pills, there were eleven of them, I have to do this twice a day plus every four hours on the pain medication I have more than 11 pills to take daily but that is an example of my night pills)
So this brings us to today. I had my second chemo treatment with the new medicine.
My weight did not change in spite of all the vomiting I've done. My potassium level did not change because of all the vomiting I've done.
My cancer markers showed a great improvement. I am not going to pretend I understand it all but the blood work they do each time I go compares all the levels and I think determines the cancer marker. Down is the way we want to go. Two trips ago it was at 97 this trip it was at 47 so that was a huge improvement. To me that means the new medicine is working.
Last week my nurse explained that this medicine has a history of an allergic reaction. She said it could be shortness of breath, hot flash, lower back pain and several others. She said it's usually the lower back pain or the hot flash and it typically occurs during the second treatment. She was right. I had an allergic reaction, lower back pain. They start the medicine off at a slow drip and gradually move it up. Today they started it at 50 (whatever the unit of measure is) and 20 minutes or so moved it up to 70. Instant back pain and intense, worse than my back labor. She immediately stopped the medication and I was amazed that within 5 seconds I swear there were five people in the room with me including the Dr. They eventually gave me some pain medication (it was all said and done in ten minutes or so). The pain was completely resolved in about 15 minutes.
As a result I could not have my treatment today. They have scheduled a new appointment for next week with a new medicine, similar to this one. We will see how it goes.
SIDE NOTE: The brain scan came back as no change. I have not had a chance to discuss the course of action for this with the Dr. I keep meaning to but so many things come up during the appointment I keep forgetting.
I believe that is everything for now.
Thanks everyone for caring about and following up on me.
Wednesday, May 19, 2010
2nd chemo and more
On May 11 I met with Dr Rooney to discuss what was going on after my first chemo treatment. I told him about the trip to the hospital, the sleepless nights, the constant sleeping during the day, having no energy. We realized two of the medications I was taking cause drowsiness and should be taken at night only. (One of those was prescribed 3 times a day, hence the need to nap all the time). We acknowledged the fact that chemo makes me dehydrate and very quickly so having IV Fluids the next day is a good plan. We also learned that in the three weeks since my first chemo treatment I did NOT lose any weight. He told me that was encouraging and it sounds like I am right where I should be.
Off to chemo we went.
On Wednesday we went back for the fluids and I was not feeling well at all. I asked if I could lay in the bed instead of using a chair. The infusion process is three hours long. No problem, they moved me to the bed and also scheduled me to come back in on Friday for another liter of fluids. I went home on Wednesday, went to bed and pretty much stayed there until it was time to go for the second infusion on Friday. The bed was not available, it had been reserved for me but someone didn't know that. So they put me in a chair and said they would move me as soon as a bed became available. They took my blood pressure and it was 70/40....they moved the other person out of the bed and put me in it. When I left my BP was 90/60. I was very tired when I got home and went to bed. Saturday, Sunday and until 2:00 on Monday I felt GREAT! I was up and about doing things in the house and actually sat outside for a while. At 2:00 it hit me, I was very tired. I laid on the couch but did not sleep. Yesterday and today have been sluggish days but I am not sleeping all day now. Changing the medication to nighttime only has helped a lot.
Off to chemo we went.
On Wednesday we went back for the fluids and I was not feeling well at all. I asked if I could lay in the bed instead of using a chair. The infusion process is three hours long. No problem, they moved me to the bed and also scheduled me to come back in on Friday for another liter of fluids. I went home on Wednesday, went to bed and pretty much stayed there until it was time to go for the second infusion on Friday. The bed was not available, it had been reserved for me but someone didn't know that. So they put me in a chair and said they would move me as soon as a bed became available. They took my blood pressure and it was 70/40....they moved the other person out of the bed and put me in it. When I left my BP was 90/60. I was very tired when I got home and went to bed. Saturday, Sunday and until 2:00 on Monday I felt GREAT! I was up and about doing things in the house and actually sat outside for a while. At 2:00 it hit me, I was very tired. I laid on the couch but did not sleep. Yesterday and today have been sluggish days but I am not sleeping all day now. Changing the medication to nighttime only has helped a lot.
The days after the first round of chemo
I was told everyone responds differently to chemo.
I was told the fatigue from chemo is cumulative, just like the fatigue from radiation.
The day after my first treatment I seemed fine when I first got up at 8:30. I ate breakfast and took all my pills. At 9:00 I said to Jim I don't know what just happened but I need to lay down now. I made it to the couch and slept until 11:00. I seemed to be ok after that for a while. Took my mid-day pills around 2:30 and at 3:00 experienced the same thing ....had to lay down...this time until almost 6:00.
The second day after chemo I don't think I ever got out of bed. On Friday I spent most of the day laying down, I had no energy. The BCBS Case Mgmt nurse called on Friday around 3:00 to see how things were going and I told her not well I was pretty sure I was dehydrated. She spoke to Jim and told him to get me to the hospital for IV Fluids as it is the weekend and I will only get worse.
We went to the ER where they infused 2 liters of IV Fluids. I definitely felt better after that but not great. Saturday I felt better and the BCBS nurse called again to check on my progress. Sunday was an ok day. On Monday I was up and out of bed and moving around again. The BCBS nurse suggested I call the Dr and ask them to make an appointment for me to receive IV Fluids the day after chemo. The Dr's office agreed to that.
The first week of May I spent in bed.
I was told the fatigue from chemo is cumulative, just like the fatigue from radiation.
The day after my first treatment I seemed fine when I first got up at 8:30. I ate breakfast and took all my pills. At 9:00 I said to Jim I don't know what just happened but I need to lay down now. I made it to the couch and slept until 11:00. I seemed to be ok after that for a while. Took my mid-day pills around 2:30 and at 3:00 experienced the same thing ....had to lay down...this time until almost 6:00.
The second day after chemo I don't think I ever got out of bed. On Friday I spent most of the day laying down, I had no energy. The BCBS Case Mgmt nurse called on Friday around 3:00 to see how things were going and I told her not well I was pretty sure I was dehydrated. She spoke to Jim and told him to get me to the hospital for IV Fluids as it is the weekend and I will only get worse.
We went to the ER where they infused 2 liters of IV Fluids. I definitely felt better after that but not great. Saturday I felt better and the BCBS nurse called again to check on my progress. Sunday was an ok day. On Monday I was up and out of bed and moving around again. The BCBS nurse suggested I call the Dr and ask them to make an appointment for me to receive IV Fluids the day after chemo. The Dr's office agreed to that.
The first week of May I spent in bed.
Tuesday, April 20, 2010
First Chemo treatment
Just got back from our 1:00 appointment and I have to say this is the best I have felt in days. This is in part because they re hydrated me. I've been have difficulties with taking in fluids and being dehydrated was adding to my fatigue. When I first got there my BP was 90/50, when I left it had gone up to 110/63.
Can you imagine? Normally I drink five 16 1/2 ounce bottles of water a day, now I struggle drinking ONE! I keep trying though...I have to get back to five.
I am receiving two different medicines through chemo, Carboplatin and Alimta. Feel free to research.
One has a ten minute infusion the other about an hour.
I am encouraged to eat five times a day, small foods for constant nourishment. This is not as easy as it sounds!
I've heard from people that the fatigue of chemo is quite intense and usually hits the day after treatment. The nurse told me today it could be 3 - 4 days before it hits, each person responds differently. When it hits and how long it stays remains to be seen.
My next treatment is May 11, 2010.
Not much else to say about chemo but feel free to leave comments or ask questions.
Can you imagine? Normally I drink five 16 1/2 ounce bottles of water a day, now I struggle drinking ONE! I keep trying though...I have to get back to five.
I am receiving two different medicines through chemo, Carboplatin and Alimta. Feel free to research.
One has a ten minute infusion the other about an hour.
I am encouraged to eat five times a day, small foods for constant nourishment. This is not as easy as it sounds!
I've heard from people that the fatigue of chemo is quite intense and usually hits the day after treatment. The nurse told me today it could be 3 - 4 days before it hits, each person responds differently. When it hits and how long it stays remains to be seen.
My next treatment is May 11, 2010.
Not much else to say about chemo but feel free to leave comments or ask questions.
Monday, April 19, 2010
Cards, letters, emails and visits
When I was first diagnosed with lung cancer and word spread like wildfire I received cards, letters, emails and visits daily. I encouraged everyone to keep doing that as it is what gets me through the day.
Reality, life goes on. People get caught up in every day life. I do understand and I ask that you try to take a minute out of your day every once in a while to send me a note, give me a call or stop by to visit. My days are very long and they blend together. A friendly face now and again lifts my spirits more than you could appreciate.
Reality, life goes on. People get caught up in every day life. I do understand and I ask that you try to take a minute out of your day every once in a while to send me a note, give me a call or stop by to visit. My days are very long and they blend together. A friendly face now and again lifts my spirits more than you could appreciate.
Radiation
I started radiation treatments on Monday, March 29, 2010. The treatment itself is uneventful and takes about 3 minutes to complete. It actually takes longer to position my body on the table and lock down the mask before each treatment. All in all the entire process is less than 10 minutes...maybe less than 5!
After the first treatment Jim and I went shopping. I felt fine that day. Tuesday, I was pretty tired though. After treatment that day we went straight home. Wednesday, foolishly we went shopping again. Thursday, I was pretty tired before the treatment, more tired after. Friday's treatment brought more fatigue.
We volunteered Jennifer to make snacks for us to bring to radiation and she was happy to oblige. She made mini cupcakes for the first week, peanut butter squares for the second week and stuffed strawberries for the last treatment day. Everyone LOVED each snack, couldn't say thank you enough and requested the recipe for the peanut butter squares!
Somewhere along the line I had developed a serious constipation issue which I am still dealing with. This has proved to be the most difficult part of this process so far. I realize this is not a subject most people want to hear about but it is very real, very dangerous and what I am living through right now. I hope this issue is resolved soon.
On Saturday, April 10, 2010 the hair loss started and on Monday we finished it...shaved my head. It was the best thing to do...the hair loss process on it's own would have driven me mad...it would have taken too long to fall out on it's own
and believe it or not..there was pain associated with it. Jim and I have
been cleaning hair from everywhere...had we waited for the hair to come out
on it's own...well...forget it.
I am surprised at how cold I am without hair...another one of the simply
things in life we take for granted.
The radiation treatments were completed on Tuesday, April 13, 2010. I received a 'Certificate of Completion' along with a bag and the following poem,
Just For You!
A stick of GUM to remind you to stick with it.
A CANDLE to remind you to shine brightly
A CHOCOLATE KISS to remind you that you are loved.
A TOOTSIE ROLL to remind you not to bite off more than you can chew.
A LIFESAVER for those times when you feel like you're going down.
A STARBURST to give you energy when you're running low.
A SNICKER to remind you to laugh
CONFETTI to remind you to have fun.
And...a BAG to help you keep it all together.
I was reminded that the fatigue caused by the radiation was cumulative and it could be a couple weeks before I start getting my energy back.
On Thursday, April 15, 2010 we met with Dr Rooney again, the oncologist. He explained that the ACORN study that I had agreed to participate in had very strict criteria regarding participation. I have been disqualified due to the brain cancer. As a result, the chemo treatment plan had to be changed. Dr Rooney wants to start chemo right away however, there were no open spots in the office for me for the following week. He suggested that I be admitted to the hospital on Tuesday, April 20, 2010 for the treatment, stay overnight and be discharged on Wednesday. This was the only way to get the treatment started right away. I indicated this would cost me a $250 co payment for being admitted however, I was not going to die over a $250 co payment so fine, admit me. Later during the visit while having the port flushed and blood drawn the nurse mentioned that maybe they could get the insurance company to waive the co payment, after all, it is not my fault they could not accommodate the appointment the Dr requested.
This is the first time the port is used and I have to say it is pretty remarkable...and I am very glad I have it. No pain, no bruises, it is great.
I receive a B12 shot and am told to start taking Folic Acid twice a day. One of the side affects of the chemo is numbness to the fingertips and the folic acid helps with that.
The chemo treatment should take about 2 1/2 hours ...this is for the medicine to get into my body. I suspect the appointment will be closer to four hours the first time. We are told there are two different medicines being used and I will repeat chemo every three weeks for four months. CT scans are done after two cycles to mark progress. Based on the results one of the medicines may be dropped at the four month mark. The remaining medicine will be used and could continue to be used for as long as two years.
Later in the afternoon we get a phone call from the Dr's office confirming the first chemo treatment. They say it is scheduled for Monday, April 26, 2010 and I said no, I am supposed to be admitted to the hospital on April 20, 2010. They said that would cost me money and thought the 26th was better and I said no, I will pay the bill and be there on the 20th. They indicate they will follow up with the Dr and call me back.
They call me back and now they can fit me in at the office on Tuesday, April 20, 2010 at 1:00. Seems my chemo nurse will be on vacation during this time but now her backup is available to assist me. Are you kidding me? You were pushing me off a week because someone was on vacation????
The fatigue seems to be hitting me pretty hard the days after radiation is complete. I know they told me it would but I didn't realize how significant it would be.
After the first treatment Jim and I went shopping. I felt fine that day. Tuesday, I was pretty tired though. After treatment that day we went straight home. Wednesday, foolishly we went shopping again. Thursday, I was pretty tired before the treatment, more tired after. Friday's treatment brought more fatigue.
We volunteered Jennifer to make snacks for us to bring to radiation and she was happy to oblige. She made mini cupcakes for the first week, peanut butter squares for the second week and stuffed strawberries for the last treatment day. Everyone LOVED each snack, couldn't say thank you enough and requested the recipe for the peanut butter squares!
Somewhere along the line I had developed a serious constipation issue which I am still dealing with. This has proved to be the most difficult part of this process so far. I realize this is not a subject most people want to hear about but it is very real, very dangerous and what I am living through right now. I hope this issue is resolved soon.
On Saturday, April 10, 2010 the hair loss started and on Monday we finished it...shaved my head. It was the best thing to do...the hair loss process on it's own would have driven me mad...it would have taken too long to fall out on it's own
and believe it or not..there was pain associated with it. Jim and I have
been cleaning hair from everywhere...had we waited for the hair to come out
on it's own...well...forget it.
I am surprised at how cold I am without hair...another one of the simply
things in life we take for granted.
The radiation treatments were completed on Tuesday, April 13, 2010. I received a 'Certificate of Completion' along with a bag and the following poem,
Just For You!
A stick of GUM to remind you to stick with it.
A CANDLE to remind you to shine brightly
A CHOCOLATE KISS to remind you that you are loved.
A TOOTSIE ROLL to remind you not to bite off more than you can chew.
A LIFESAVER for those times when you feel like you're going down.
A STARBURST to give you energy when you're running low.
A SNICKER to remind you to laugh
CONFETTI to remind you to have fun.
And...a BAG to help you keep it all together.
I was reminded that the fatigue caused by the radiation was cumulative and it could be a couple weeks before I start getting my energy back.
On Thursday, April 15, 2010 we met with Dr Rooney again, the oncologist. He explained that the ACORN study that I had agreed to participate in had very strict criteria regarding participation. I have been disqualified due to the brain cancer. As a result, the chemo treatment plan had to be changed. Dr Rooney wants to start chemo right away however, there were no open spots in the office for me for the following week. He suggested that I be admitted to the hospital on Tuesday, April 20, 2010 for the treatment, stay overnight and be discharged on Wednesday. This was the only way to get the treatment started right away. I indicated this would cost me a $250 co payment for being admitted however, I was not going to die over a $250 co payment so fine, admit me. Later during the visit while having the port flushed and blood drawn the nurse mentioned that maybe they could get the insurance company to waive the co payment, after all, it is not my fault they could not accommodate the appointment the Dr requested.
This is the first time the port is used and I have to say it is pretty remarkable...and I am very glad I have it. No pain, no bruises, it is great.
I receive a B12 shot and am told to start taking Folic Acid twice a day. One of the side affects of the chemo is numbness to the fingertips and the folic acid helps with that.
The chemo treatment should take about 2 1/2 hours ...this is for the medicine to get into my body. I suspect the appointment will be closer to four hours the first time. We are told there are two different medicines being used and I will repeat chemo every three weeks for four months. CT scans are done after two cycles to mark progress. Based on the results one of the medicines may be dropped at the four month mark. The remaining medicine will be used and could continue to be used for as long as two years.
Later in the afternoon we get a phone call from the Dr's office confirming the first chemo treatment. They say it is scheduled for Monday, April 26, 2010 and I said no, I am supposed to be admitted to the hospital on April 20, 2010. They said that would cost me money and thought the 26th was better and I said no, I will pay the bill and be there on the 20th. They indicate they will follow up with the Dr and call me back.
They call me back and now they can fit me in at the office on Tuesday, April 20, 2010 at 1:00. Seems my chemo nurse will be on vacation during this time but now her backup is available to assist me. Are you kidding me? You were pushing me off a week because someone was on vacation????
The fatigue seems to be hitting me pretty hard the days after radiation is complete. I know they told me it would but I didn't realize how significant it would be.
Saturday, April 17, 2010
How did I get here?
On Wednesday, July 1, 2009 I interviewed for a QA Lead position with OneShield Inc in Westborough Ma. The reason this is important is because I had to climb four sets of stairs for the interview, two from the parking lot to the building and then two to the second floor.
On Wednesday, July 8, 2009 I received a job offer for the QA Lead position and immediately said to Jim, 'How am I going to climb the stairs?' Somewhere between the 1st and the 8th of July I developed stiffness in my knees to the point that I could not climb stairs.
On Wednesday, July 15, 2009 I went to breakfast with the OOWG (Out of Work Gang), we'd been meeting for breakfast once a month for a few months at that point. I have the great pleasure of announcing I had received and accepted the job offer at OneShield and would start work on Monday, July 20, 2009. We discussed the stiffness in my knees and Cheryl suggested I take ibuprofen. I actually took Tylenol instead..had no ibuprofen. I was very pleased with the outcome...the stiffness disappeared.
I continued to take the Tylenol when the stiffness came back off and on until my annual physical on Sept 9, 2009. I mentioned the issue with my knees and was told by the Nurse Practioner that I see (Paula Sommers) to stop taking the Tylenol and take Ibuprofen for two weeks. If the stiffness was not gone after two weeks I should come in for a follow up appointment. She also recommended I take Glucosamine Chondroitin. The ibuprofen worked very well, the stiffness went away and for the most part stayed away.
Over the next few months I would occassionally take the ibuprofen to relieve the stiffness in my knees.
I had the day before Thanksgiving off and as is my usual routine I spent the day in the kitchen baking. Thanksgiving morning I could barely move because the pain in my knees and now ankles was so severe...of course I went directly to the ibuprofen. It definitely helped with the pain but I was taking a lot of ibuprofen on a regular basis.
Jim and I celebrated New Year's Eve in Boston, which is what we do just about every year now and because we do that I knew to make sure I had lots of ibuprofen with me or I'd be pretty much useless.
I went back to work on Monday January 4, 2010 and spent most of the day sitting at my desk catching up on emails and trying to get back into the work mode. I had no meetings that day and I am pretty sure the only time I got up from my desk was to grab lunch. At the end of the day when I tried to get up I couldn't...my knees were so stiff I couldn't lift myself out of my chair and support myself in an upright position. This was a serious concern...it had never been quite this severe. I managed to get myself up and drive home....called the Dr the minute I walked in the door but was told they could not see me that day. Made an appointment for the next day. I explained about the stiffness in my knees, the achy, tenderness of my ankles and now, a new pain in my stomach. I did tell them I'd been taking a lot of ibuprofen but never revealed that it was 900+ in a three month period.
I saw Paula on January 5, 2010 and she ordered blood work and prescribed prednisone, told me I'd feel like a million bucks in a couple days. I had not taken any ibuprofen because I wanted her to see exactly what I was experiencing .....I didn't want the medicine masking anything. She was certain the pain in my stomach was from the ibuprofen and told me to stop taking it immediately. Note: I was weighed in at 183 lbs, yes, I really weighed 183 lbs, thank you everyone for not believing that but it is the truth.
I went to the lab for the blood work and it took a solid hour for two nurses to draw the blood. I have since learned that I have 'small, thin, fine, fragile' veins and am a difficult stick. This was the first in a series of bad blood draws. Each subsequent draw was worse than the one before.
On January 7, 2010 I went for my previously scheduled mammogram, the results came back normal.
On January 12, 2010, the doctor called to let me know I needed to take a vitamin D prescription. Based on what I was told it is my understanding that the normal level is between 30 and 74 and mine came back at less than 3. The average Vitamin D dosage for someone with no Vitamin D problem is 1000 units. I was prescribed 50,000 units a week which is 7,142 units daily.
On January 18, 2010 I again called the doctor and again told her I was in pain and something needed to be done now because I could not continue living like this. She had me come into the office and I was again weighed in. This time my weight was recorded at 194 lbs. This is because I was in such pain when they told me to step on the scale I did...with my winter boots on, my winter coat, my pocketbook over my shoulder with a bottle of water in it. They did NOT mention any of that in my chart.
Paula referred me to an arthritis doctor at this point. She also told me to start taking Prilosec OTC because she was concerned I'd developed an ulcer. She ordered x-rays of my knees, ankles and left shoulder.
Side note: I was laid off from Fidelity Investments in February 2009. While I was out of work I'd gotten into a routine of working out on the WII fit for an hour and a half every day. Apparently I was a little too aggressive in the boxing arena.....I hurt my shoulder. I'd had x-rays done at that time, they revealed slight calcification, no tears or other concerns. Paula suggested I stop using the WII Fit...or at the very least the boxing part of it.
It has been suggested that the shoulder issue could possibly have been my first symptom.
I believe this is when Paula first prescribed a pain medicine for me, Vicodin. I hesitated to take this medicine...it is very strong. Paula suggested I play around with the dose...take only half a pill to see how it affects me. I waited until Friday night and took half a pill. I felt safe doing that knowing I didn't have to get up and go to work in the morning...I wouldn't have to drive anywhere...and if it knocked me out I was home so it was ok. Half a pill did nothing. So, I took a whole pill Saturday morning around 8.....at 10:00 my son Jimmy called and the first words out of his mouth were 'What the h*ll is the matter with you'. He strongly recommended I go to bed for about 2 hours and stay there. Best advice ever. A whole pill was too much. I did figure it out though, I was taking 1/2 a pill in the morning...between 8 and 10....and then a 1/2 a pill in the afternoon between 3 and 5 and then a whole pill when I went to bed. This was eventually increased to 1/2 pill three times during the day and a whole pill at night.
On January 19, 2010 I saw the arthritis doctor, Dr Hossey. He did not think the Vitamin D issue and the stiffness in my knees were related. He ordered blood work but told me I had to wait two weeks after the last prednisone pill to make sure it was out of my system.
On February 8, 2010 I woke up and went through the motions of getting ready for work. When it came time to leave I told Jim, I can't...I simply can't go to work like this....drive me in so I can get my laptop...I need to go to the doctor today. He drove me in, at this point I was no longer climbing the stairs but using the elevator...one of the girls I work with raced to my side to help me get to my desk and pack my laptop...she carried it to the car for me....I took the elevator down...ran into another girl I work with who I could tell was stunned just looking at me. My pain was so significant.
I called the Dr as soon as I got home but they could not see me that day...they told me I had to wait until the next day.
On February 9, 2010 I went to the office, Paula ordered more blood work but had the lab techs come to the room I was in instead of making me go to the lab. This was another bad experience. They used hot packs on my hands. The heat causes the blood vessels to rise to the surface supposedly making it easier to 'stick' and draw. So, the first thing to go wrong is a defective hot pack...it actually burned my hand. Naturally they couldn't apologize enough but....
So, they were not able to get enough blood for all the tests...she kept saying 'I think we have enough'....and I said you know what, I'd rather you stick me again NOW and try again NOW than call me tomorrow and say I have to come back. So, they tried, to no avail.....the vein just collapsed as soon as they hit it with the needle.
At this point Paula is convinced I am having a gall bladder attack and orders an ultrasound for 2:30 that afternoon and requested a wet read. I cried when they told me there was nothing wrong with my gall bladder, or kidneys, or liver, or spleen, or bladder or any of the other organs they looked at. They simply did not understand that yes, this is good news but I am STILL IN PAIN.
Paula prescribed Omeprazole DR and then ordered an endoscopy and colonoscopy....both of which came back normal. All these tests, all normal results. What is going on????
I believe this is the visit that they marked my chart as having a 14 lb weight loss....in reality I lost 3 pounds but because they never noted the extra weight for the 194 and I weighed in at 180 this visit...the recorded a false 14 lb weight loss. I eventually explained this to Paula Sommers but I do not know if it ever made it into my chart.
Paula now refers me to one of the PCP's in the office. The nurse calls me on February 24, 2010 to schedule that appointment and says 'How about Tuesday, March 30, 2010' to which I promptly responded 'Absolutely not! I've been in pain for 7 weeks now I am NOT waiting 5 more weeks, try again'. She said ok, how about this Friday ??? Yeah, how about this Friday.
On February 26, 2010 I saw Dr Joel Popkin, one of the PCP's in the office. After examining me and asking questions he said he would order an abdomen, stomach and chest CT Scan. He was thinking something along the lines of blood vessel inflammation or pancreas inflammation.
On March 1, 2010 I went to work. I was still taking the Vicodin, 1/2 pill 3 times a day plus a whole one at night. Something went terribly wrong this day, perhaps it was just my body telling me I needed to take more aggressive action as I was not getting anywhere with all the tests and visits I'd been through. I don't know what it was but I do know the pain level was so severe that I'd taken the three 1/2 pills that day, the last one at 4:30 and then at 6:30 I took a WHOLE vicadin. At 7:00 I told Jim, take me to the hospital. I honestly don't know how I drove home this day.....I was in so much pain, actually talking to the medicine, begging it to kick in please....
The hospital moved very quickly for me....they triaged me within 10 minutes of my arrival and had me hooked up to an IV line (not a pleasant experience...left bruises of course) and gave me morphine. It was about 40 minutes later that I finally felt relieve...that is a lot of pain med in short amount of time but it took a really long time for relieve.
They sent me for a contrast CT Scan at 11:50 and this revealed a mass in my stomach, 2.9 cm and another in my lung.
I was admitted to the hospital and the next day, March 2, 2010 a pulmonary doctor came to see me. Dr MaryJo Farmer. She indicated the need to do a bronchi-scope, this is to pull tissue from the mass to determine what is was. She indicated it was 'contained'. She also mentioned the need for a contrast chest CT scan.
Let me remind you, I am currently being medicated for pain with morphine.
This days events were ridiculous. Apparently you cannot have two contrast CT Scans within 24 hours or it could cause kidney damage. Apparently this is something I was supposed to keep track of....
Dr Farmer mentioned she would do the bronchi-scope on Wednesday morning, she had it scheduled for 11:00, said it is easier to schedule it now and have to cancel than try to squeeze it in later. She also mentioned that I would be going down for the contrast chest CT Scan at 7:30. on Tuesday.
At 7:30 they came to bring me down for the CT Scan...and of course they asked me have you had a CT scan recently? If yes, when and was it a contrast scan. Of course my answer was yes, last night at 11:50 and yes it was a contrast scan. They brought me back to my room without the scan. The nurse called the Dr who asked her to remind me that he had told me I couldn't have two contrast scans in 24 hours.....I am sure he did tell me....but I am equally sure it was not my responsibility to track that information and make sure the hospital knew what it was doing.....they told me they would bring me down at midnight. The nurse told me if they did not bring me down at midnight to ask when I was going.....to keep pushing to make sure I got there. At 4:40 in the morning I woke up and the first thing I said was no one came to get me last night...same nurse, she said yes,...we came in at midnight but you were sleeping, we did not want to wake you so we agreed if you were not up by 5:00 we would wake you and take you then. They took me right away...I was back before 5:30.
I went for the bronchi-scope.....slept through that (along with most other tests I'd had done) and have now been labeled a light weight for medications. At this point, they've done all the tests they ordered and now I have to wait for results. They discharge me telling me it would be 2 - 3 days for the results, I expect to hear back on Monday.
In between all of this I did meet with the oncologist, Dr James J. Rooney. Although no single doctor has actually stated at this point that I have cancer, at least two different doctors have discussed how they would treat it. Dr Rooney has provided specific detail that explains why he feels it is a cancer. #1, sudden onset of stiffness in joints, classic symptom of cancer. #2, red fingertips and bulging, when you slide your fingers over the fingertips they bulge...you can actually see this.
I got a phone call from Paula Sommers that night telling me she was stunned by the turn of events and never suspected cancer. She told me she would be my linebacker for anything I needed....just call her..she has instructed the nurses to interrupt her if I am on the phone. Whatever I need she will help me get it.
On Thursday, March 4, 2010 I get a call from Dr Farmers office indicating they were not able to get what they needed from the bronchi-scope so she has ordered a lung biopsy. She also mentioned that Dr Rooney has ordered a PET scan as well. I fully expected a phone call the next day with these appointments. HA! What a joke.
I called Paula Sommers at 1:00 and asked about the tests, I was told, oh yes, I can see that they've been ordered, I'm so sorry you haven't received a call with the appointment information. Let me work on this and we will get back to you. At 4:00 I got another phone call telling me 'We wanted to let you know that Paula got your message and will be calling you back by the end of the day" to which I replied 'Are you kidding me? You are calling me three hours later to tell me you got my message and Paula will call me back by the end of the day? If I were calling to make an appointment, wouldn't this already BE the end of the day????' Unfreaking believable. Paula called me back at 5:40 and I told her this phone call is a waste of my time. I needed your help this afternoon when I called, you told me you've be my linebacker and move everything out of my way to help me get what I needed and the very first time I call on you YOU LET ME DOWN.
On Monday, March 8, 2010 I called Dr Farmers office to find out what the hold up was and I was told 'we have to wait for insurance approval' for the test. Are you kidding me????? My life is hanging here on an INSURANCE APPROVAL?????????
I called the insurance company on Tuesday, March 9, 2010 when I got home from work and very politely told the girl who answered the phone, I am not hanging up until I get an answer that satisfies me. This is probably the only person who has any compassion in her soul. She told me the department that she needed to speak with had already left for the day...I told her I am not hanging up until I get an answer that satisfies me....she spent the next 35 minutes on the phone making calls...making people go back to their desks to look things up and at the end of the conversation confirmed the tests had been approved by the insurance company.
I have the ability to send and receive emails through Fallon MyChart. I received an email from Paula Sommers letting me know that she'd been following up on the tests to determine approval and would let me know as soon as she heard something.
I responded I'd been on the phone daily since Friday and have already confirmed approval and I fully expect a phone call the next day with the appointments.
I did not get that phone call the next day...it came on Thursday and of course, the right hand never knows what the left hand is doing. They scheduled both tests on the same day within two hours of each other never taking into consideration recovery time...the biopsy has a three hour recovery window.....needless to say, I had to tell them that...they were not even aware of it. They rescheduled the PET scan, so biopsy on Friday March 12, 2010 and PET scan on Monday, March 15, 2010.
Should we talk needles again? The biopsy, needed an IV line. My hands are pretty beaten up at this point but there are no options. They tell me the nurse doing it is really good...they always say that. I immediately feel pain and tell her something is wrong...this really hurts...and she responds it's just a little stick....all done...got it. I again tell her something is not right it really hurts. I go down for the biopsy which they do without sedating me because they need me awake....can't breath in, breathe out, hold it...if you are sleeping!
As soon as this test is done I ask if the IV can come out...they tell me it's the last thing they do before they discharge me....my hand really hurts. I go back for my three hour recovery period.....the end of which they start removing the tape bandage holding the needle down...and I immediately tell them to stop...you're hurting me.....the nurse worked very slowly to remove the bandage and as soon as she has it off she says 'OH MY, no wonder it hurts...the needle is bent'.
My hand is black at this point.
On Monday, I have to have the PET Scan done...another IV....they put the radioactive material in flush the line and remove the needle all in less than 5 minutes. Getting the needle in in the first place is a different story. The nurse doing it was really really good and did not hurt me at all HOWEVER, my veins infiltrated immediately so they couldn't use the line. She tried twice, same thing, had to call another nurse....who basically didn't care if it hurt me.....she jabbed me....wiggled the needle around until she got what she needed and said...'got it'...and left. She put the needle just below where the biopsy needle had been.
You can call me a baby if you want but until you walk a mile in my shoes you may want to hold that thought to yourself. Having an IV line should not result in your hand turning black.
Went to work on Tuesday March 16, felt pretty good all day but pretty tired by the end of the day. I had sent an email to Paula Sommers that morning asking if there might be a different pain medicine I could take that would not knock me out. She called in a prescription for Oxycondone which we determined I could not take (allergic reaction 30 years ago, no idea what it was but they did not want to take any chances or add any issues to everything else I was going through) so they called in morphine instead. Yeah bad choice. I worked from home on Wednesday, March 17, 2010 until 5:00. I went bowling that night. When I went to bed at 9:30 that night I took one pill. I woke up at 1:30 in the morning because of the pain so I took another pill. I ended up calling into work on Thursday....I couldn't get out of bed...the medicine was too strong. I had an appointment with the oncologist at 4:00 that day. Jim was getting concerned because I was not waking up...it's now 2:00 and I can't get out of bed.
Somehow I manage to get up, shower and dress for the Dr's appointment. I am helped every step of the way and immediately lay down once I get into the office. Dr Rooney comes in and explains, it is a cancer, it is stage IV. It is in the back and lung, being in two places is what makes it stage IV. He explains the ACORN study which combines traditional chemo with a treatment called Erbitux. He believes strongly in this study/treatment and says everyone who has used it so far has been successful. Would I like to participate? Of course, if everyone is successful so far, why would I not want to jump on that bandwagon. He says great, we will get you set up..have to sign papers etc. He indicates he wants to do a brain and bone scan because these areas are not covered by a PET scan, he clearly states he does not expect any surprises. He also indicates that I should have a port implanted so I don't have to deal with needles anymore. This is scheduled for Friday, March 26, 2010.
The brain and bone scan are scheduled for Tuesday March 23, 2010. Because I've had so many appointments and delays and starts and stops I mistakenly think this is a week longer than it really is.....I keep pushing for an earlier date....then realize there are none! Being told you hve cancer does profound things to your mind, body, heart, soul, everything.
We go to the hospital for the two scans. It is a long afternoon, we spend time at the oncologists office getting paperwork completed for disability and the ACORN study. The person I work with in Dr Rooney's office is the absolute best, thank you Pam.
I am told the chemo would be a 7 hour treatment on a Monday for the Erbitux and 1 hour chemo daily for 18 weeks. The 7 hour treatment would be repeated every third Monday.
We leave the hospital somewhere in the neighborhood of 3. Sadly, the Dr has already recieved the brain scan results and calls the house. Leaves a message that he will call back. He calls again and tells us there is cancer in the brain. This changes everything. The brain needs to be treated first. This means radiation. We meet with the radiation doctor, Dr Sidney Kadish.
He introduced himself, asked me some questions about how I came to be in his office, did a physical exam which included listening to my lungs, heart, checking my muscle strength (don't let me push your hands/feet/ankles down) stand up with my feet side by side, close my eyes(checking for balance I think). He asked about vision problems, breathing problems, headaches, vomitting, diarrhea. He asked if I was not able to perfor normal daily activities like writing, reading, typing (I told him I went bowling last Wednesday, that peaked his interest.) My answers to those questions were no, no problems.
He then said, you do know that sometimes we see patients and tell them there is nothing we can do for them. This is not the case with you, we can treat you. He asked me if Dr Rooney explained the brain cancer to me and I said no, he basically told me it had been found and that he was working on getting me in to see a radiologist. He asked me if I saw pictures of it and I said no, he asked if I wanted to see pictures of it and I said no. He said that was perfectly ok.
He said that I have one small spot on the lower left brain. Because I have not exhibited any symptoms from the tumor they feel confident about the treatment. They will radiate the entire head at first on the of chance there is someting else that was not picked up on the scan and then they will focus on the one spot itself. I have to be back the same day at 3:00 to have the markers established. It is possible treatment will follow but that has not been confirmed. A schedule of treatments will be provided. Towards the end of radiation I will lose my hair. The radiation will cause fatigue and it is cumulative so towards the end will be the worst part of it. (This proved to be VERY true).
He indicated the port should still be inserted because chemo can start the day after radation ends as far as he is concerned.
We go back at 3:00 and I have a mask created. They do not put permanent markers on the face so a mask is used instead. I am told I will recieve 12 radiation treatments and they will begin on Monday March 29, 2010 at 1:00.
On Wednesday, July 8, 2009 I received a job offer for the QA Lead position and immediately said to Jim, 'How am I going to climb the stairs?' Somewhere between the 1st and the 8th of July I developed stiffness in my knees to the point that I could not climb stairs.
On Wednesday, July 15, 2009 I went to breakfast with the OOWG (Out of Work Gang), we'd been meeting for breakfast once a month for a few months at that point. I have the great pleasure of announcing I had received and accepted the job offer at OneShield and would start work on Monday, July 20, 2009. We discussed the stiffness in my knees and Cheryl suggested I take ibuprofen. I actually took Tylenol instead..had no ibuprofen. I was very pleased with the outcome...the stiffness disappeared.
I continued to take the Tylenol when the stiffness came back off and on until my annual physical on Sept 9, 2009. I mentioned the issue with my knees and was told by the Nurse Practioner that I see (Paula Sommers) to stop taking the Tylenol and take Ibuprofen for two weeks. If the stiffness was not gone after two weeks I should come in for a follow up appointment. She also recommended I take Glucosamine Chondroitin. The ibuprofen worked very well, the stiffness went away and for the most part stayed away.
Over the next few months I would occassionally take the ibuprofen to relieve the stiffness in my knees.
I had the day before Thanksgiving off and as is my usual routine I spent the day in the kitchen baking. Thanksgiving morning I could barely move because the pain in my knees and now ankles was so severe...of course I went directly to the ibuprofen. It definitely helped with the pain but I was taking a lot of ibuprofen on a regular basis.
Jim and I celebrated New Year's Eve in Boston, which is what we do just about every year now and because we do that I knew to make sure I had lots of ibuprofen with me or I'd be pretty much useless.
I went back to work on Monday January 4, 2010 and spent most of the day sitting at my desk catching up on emails and trying to get back into the work mode. I had no meetings that day and I am pretty sure the only time I got up from my desk was to grab lunch. At the end of the day when I tried to get up I couldn't...my knees were so stiff I couldn't lift myself out of my chair and support myself in an upright position. This was a serious concern...it had never been quite this severe. I managed to get myself up and drive home....called the Dr the minute I walked in the door but was told they could not see me that day. Made an appointment for the next day. I explained about the stiffness in my knees, the achy, tenderness of my ankles and now, a new pain in my stomach. I did tell them I'd been taking a lot of ibuprofen but never revealed that it was 900+ in a three month period.
I saw Paula on January 5, 2010 and she ordered blood work and prescribed prednisone, told me I'd feel like a million bucks in a couple days. I had not taken any ibuprofen because I wanted her to see exactly what I was experiencing .....I didn't want the medicine masking anything. She was certain the pain in my stomach was from the ibuprofen and told me to stop taking it immediately. Note: I was weighed in at 183 lbs, yes, I really weighed 183 lbs, thank you everyone for not believing that but it is the truth.
I went to the lab for the blood work and it took a solid hour for two nurses to draw the blood. I have since learned that I have 'small, thin, fine, fragile' veins and am a difficult stick. This was the first in a series of bad blood draws. Each subsequent draw was worse than the one before.
On January 7, 2010 I went for my previously scheduled mammogram, the results came back normal.
On January 12, 2010, the doctor called to let me know I needed to take a vitamin D prescription. Based on what I was told it is my understanding that the normal level is between 30 and 74 and mine came back at less than 3. The average Vitamin D dosage for someone with no Vitamin D problem is 1000 units. I was prescribed 50,000 units a week which is 7,142 units daily.
On January 18, 2010 I again called the doctor and again told her I was in pain and something needed to be done now because I could not continue living like this. She had me come into the office and I was again weighed in. This time my weight was recorded at 194 lbs. This is because I was in such pain when they told me to step on the scale I did...with my winter boots on, my winter coat, my pocketbook over my shoulder with a bottle of water in it. They did NOT mention any of that in my chart.
Paula referred me to an arthritis doctor at this point. She also told me to start taking Prilosec OTC because she was concerned I'd developed an ulcer. She ordered x-rays of my knees, ankles and left shoulder.
Side note: I was laid off from Fidelity Investments in February 2009. While I was out of work I'd gotten into a routine of working out on the WII fit for an hour and a half every day. Apparently I was a little too aggressive in the boxing arena.....I hurt my shoulder. I'd had x-rays done at that time, they revealed slight calcification, no tears or other concerns. Paula suggested I stop using the WII Fit...or at the very least the boxing part of it.
It has been suggested that the shoulder issue could possibly have been my first symptom.
I believe this is when Paula first prescribed a pain medicine for me, Vicodin. I hesitated to take this medicine...it is very strong. Paula suggested I play around with the dose...take only half a pill to see how it affects me. I waited until Friday night and took half a pill. I felt safe doing that knowing I didn't have to get up and go to work in the morning...I wouldn't have to drive anywhere...and if it knocked me out I was home so it was ok. Half a pill did nothing. So, I took a whole pill Saturday morning around 8.....at 10:00 my son Jimmy called and the first words out of his mouth were 'What the h*ll is the matter with you'. He strongly recommended I go to bed for about 2 hours and stay there. Best advice ever. A whole pill was too much. I did figure it out though, I was taking 1/2 a pill in the morning...between 8 and 10....and then a 1/2 a pill in the afternoon between 3 and 5 and then a whole pill when I went to bed. This was eventually increased to 1/2 pill three times during the day and a whole pill at night.
On January 19, 2010 I saw the arthritis doctor, Dr Hossey. He did not think the Vitamin D issue and the stiffness in my knees were related. He ordered blood work but told me I had to wait two weeks after the last prednisone pill to make sure it was out of my system.
On February 8, 2010 I woke up and went through the motions of getting ready for work. When it came time to leave I told Jim, I can't...I simply can't go to work like this....drive me in so I can get my laptop...I need to go to the doctor today. He drove me in, at this point I was no longer climbing the stairs but using the elevator...one of the girls I work with raced to my side to help me get to my desk and pack my laptop...she carried it to the car for me....I took the elevator down...ran into another girl I work with who I could tell was stunned just looking at me. My pain was so significant.
I called the Dr as soon as I got home but they could not see me that day...they told me I had to wait until the next day.
On February 9, 2010 I went to the office, Paula ordered more blood work but had the lab techs come to the room I was in instead of making me go to the lab. This was another bad experience. They used hot packs on my hands. The heat causes the blood vessels to rise to the surface supposedly making it easier to 'stick' and draw. So, the first thing to go wrong is a defective hot pack...it actually burned my hand. Naturally they couldn't apologize enough but....
So, they were not able to get enough blood for all the tests...she kept saying 'I think we have enough'....and I said you know what, I'd rather you stick me again NOW and try again NOW than call me tomorrow and say I have to come back. So, they tried, to no avail.....the vein just collapsed as soon as they hit it with the needle.
At this point Paula is convinced I am having a gall bladder attack and orders an ultrasound for 2:30 that afternoon and requested a wet read. I cried when they told me there was nothing wrong with my gall bladder, or kidneys, or liver, or spleen, or bladder or any of the other organs they looked at. They simply did not understand that yes, this is good news but I am STILL IN PAIN.
Paula prescribed Omeprazole DR and then ordered an endoscopy and colonoscopy....both of which came back normal. All these tests, all normal results. What is going on????
I believe this is the visit that they marked my chart as having a 14 lb weight loss....in reality I lost 3 pounds but because they never noted the extra weight for the 194 and I weighed in at 180 this visit...the recorded a false 14 lb weight loss. I eventually explained this to Paula Sommers but I do not know if it ever made it into my chart.
Paula now refers me to one of the PCP's in the office. The nurse calls me on February 24, 2010 to schedule that appointment and says 'How about Tuesday, March 30, 2010' to which I promptly responded 'Absolutely not! I've been in pain for 7 weeks now I am NOT waiting 5 more weeks, try again'. She said ok, how about this Friday ??? Yeah, how about this Friday.
On February 26, 2010 I saw Dr Joel Popkin, one of the PCP's in the office. After examining me and asking questions he said he would order an abdomen, stomach and chest CT Scan. He was thinking something along the lines of blood vessel inflammation or pancreas inflammation.
On March 1, 2010 I went to work. I was still taking the Vicodin, 1/2 pill 3 times a day plus a whole one at night. Something went terribly wrong this day, perhaps it was just my body telling me I needed to take more aggressive action as I was not getting anywhere with all the tests and visits I'd been through. I don't know what it was but I do know the pain level was so severe that I'd taken the three 1/2 pills that day, the last one at 4:30 and then at 6:30 I took a WHOLE vicadin. At 7:00 I told Jim, take me to the hospital. I honestly don't know how I drove home this day.....I was in so much pain, actually talking to the medicine, begging it to kick in please....
The hospital moved very quickly for me....they triaged me within 10 minutes of my arrival and had me hooked up to an IV line (not a pleasant experience...left bruises of course) and gave me morphine. It was about 40 minutes later that I finally felt relieve...that is a lot of pain med in short amount of time but it took a really long time for relieve.
They sent me for a contrast CT Scan at 11:50 and this revealed a mass in my stomach, 2.9 cm and another in my lung.
I was admitted to the hospital and the next day, March 2, 2010 a pulmonary doctor came to see me. Dr MaryJo Farmer. She indicated the need to do a bronchi-scope, this is to pull tissue from the mass to determine what is was. She indicated it was 'contained'. She also mentioned the need for a contrast chest CT scan.
Let me remind you, I am currently being medicated for pain with morphine.
This days events were ridiculous. Apparently you cannot have two contrast CT Scans within 24 hours or it could cause kidney damage. Apparently this is something I was supposed to keep track of....
Dr Farmer mentioned she would do the bronchi-scope on Wednesday morning, she had it scheduled for 11:00, said it is easier to schedule it now and have to cancel than try to squeeze it in later. She also mentioned that I would be going down for the contrast chest CT Scan at 7:30. on Tuesday.
At 7:30 they came to bring me down for the CT Scan...and of course they asked me have you had a CT scan recently? If yes, when and was it a contrast scan. Of course my answer was yes, last night at 11:50 and yes it was a contrast scan. They brought me back to my room without the scan. The nurse called the Dr who asked her to remind me that he had told me I couldn't have two contrast scans in 24 hours.....I am sure he did tell me....but I am equally sure it was not my responsibility to track that information and make sure the hospital knew what it was doing.....they told me they would bring me down at midnight. The nurse told me if they did not bring me down at midnight to ask when I was going.....to keep pushing to make sure I got there. At 4:40 in the morning I woke up and the first thing I said was no one came to get me last night...same nurse, she said yes,...we came in at midnight but you were sleeping, we did not want to wake you so we agreed if you were not up by 5:00 we would wake you and take you then. They took me right away...I was back before 5:30.
I went for the bronchi-scope.....slept through that (along with most other tests I'd had done) and have now been labeled a light weight for medications. At this point, they've done all the tests they ordered and now I have to wait for results. They discharge me telling me it would be 2 - 3 days for the results, I expect to hear back on Monday.
In between all of this I did meet with the oncologist, Dr James J. Rooney. Although no single doctor has actually stated at this point that I have cancer, at least two different doctors have discussed how they would treat it. Dr Rooney has provided specific detail that explains why he feels it is a cancer. #1, sudden onset of stiffness in joints, classic symptom of cancer. #2, red fingertips and bulging, when you slide your fingers over the fingertips they bulge...you can actually see this.
I got a phone call from Paula Sommers that night telling me she was stunned by the turn of events and never suspected cancer. She told me she would be my linebacker for anything I needed....just call her..she has instructed the nurses to interrupt her if I am on the phone. Whatever I need she will help me get it.
On Thursday, March 4, 2010 I get a call from Dr Farmers office indicating they were not able to get what they needed from the bronchi-scope so she has ordered a lung biopsy. She also mentioned that Dr Rooney has ordered a PET scan as well. I fully expected a phone call the next day with these appointments. HA! What a joke.
I called Paula Sommers at 1:00 and asked about the tests, I was told, oh yes, I can see that they've been ordered, I'm so sorry you haven't received a call with the appointment information. Let me work on this and we will get back to you. At 4:00 I got another phone call telling me 'We wanted to let you know that Paula got your message and will be calling you back by the end of the day" to which I replied 'Are you kidding me? You are calling me three hours later to tell me you got my message and Paula will call me back by the end of the day? If I were calling to make an appointment, wouldn't this already BE the end of the day????' Unfreaking believable. Paula called me back at 5:40 and I told her this phone call is a waste of my time. I needed your help this afternoon when I called, you told me you've be my linebacker and move everything out of my way to help me get what I needed and the very first time I call on you YOU LET ME DOWN.
On Monday, March 8, 2010 I called Dr Farmers office to find out what the hold up was and I was told 'we have to wait for insurance approval' for the test. Are you kidding me????? My life is hanging here on an INSURANCE APPROVAL?????????
I called the insurance company on Tuesday, March 9, 2010 when I got home from work and very politely told the girl who answered the phone, I am not hanging up until I get an answer that satisfies me. This is probably the only person who has any compassion in her soul. She told me the department that she needed to speak with had already left for the day...I told her I am not hanging up until I get an answer that satisfies me....she spent the next 35 minutes on the phone making calls...making people go back to their desks to look things up and at the end of the conversation confirmed the tests had been approved by the insurance company.
I have the ability to send and receive emails through Fallon MyChart. I received an email from Paula Sommers letting me know that she'd been following up on the tests to determine approval and would let me know as soon as she heard something.
I responded I'd been on the phone daily since Friday and have already confirmed approval and I fully expect a phone call the next day with the appointments.
I did not get that phone call the next day...it came on Thursday and of course, the right hand never knows what the left hand is doing. They scheduled both tests on the same day within two hours of each other never taking into consideration recovery time...the biopsy has a three hour recovery window.....needless to say, I had to tell them that...they were not even aware of it. They rescheduled the PET scan, so biopsy on Friday March 12, 2010 and PET scan on Monday, March 15, 2010.
Should we talk needles again? The biopsy, needed an IV line. My hands are pretty beaten up at this point but there are no options. They tell me the nurse doing it is really good...they always say that. I immediately feel pain and tell her something is wrong...this really hurts...and she responds it's just a little stick....all done...got it. I again tell her something is not right it really hurts. I go down for the biopsy which they do without sedating me because they need me awake....can't breath in, breathe out, hold it...if you are sleeping!
As soon as this test is done I ask if the IV can come out...they tell me it's the last thing they do before they discharge me....my hand really hurts. I go back for my three hour recovery period.....the end of which they start removing the tape bandage holding the needle down...and I immediately tell them to stop...you're hurting me.....the nurse worked very slowly to remove the bandage and as soon as she has it off she says 'OH MY, no wonder it hurts...the needle is bent'.
My hand is black at this point.
On Monday, I have to have the PET Scan done...another IV....they put the radioactive material in flush the line and remove the needle all in less than 5 minutes. Getting the needle in in the first place is a different story. The nurse doing it was really really good and did not hurt me at all HOWEVER, my veins infiltrated immediately so they couldn't use the line. She tried twice, same thing, had to call another nurse....who basically didn't care if it hurt me.....she jabbed me....wiggled the needle around until she got what she needed and said...'got it'...and left. She put the needle just below where the biopsy needle had been.
You can call me a baby if you want but until you walk a mile in my shoes you may want to hold that thought to yourself. Having an IV line should not result in your hand turning black.
Went to work on Tuesday March 16, felt pretty good all day but pretty tired by the end of the day. I had sent an email to Paula Sommers that morning asking if there might be a different pain medicine I could take that would not knock me out. She called in a prescription for Oxycondone which we determined I could not take (allergic reaction 30 years ago, no idea what it was but they did not want to take any chances or add any issues to everything else I was going through) so they called in morphine instead. Yeah bad choice. I worked from home on Wednesday, March 17, 2010 until 5:00. I went bowling that night. When I went to bed at 9:30 that night I took one pill. I woke up at 1:30 in the morning because of the pain so I took another pill. I ended up calling into work on Thursday....I couldn't get out of bed...the medicine was too strong. I had an appointment with the oncologist at 4:00 that day. Jim was getting concerned because I was not waking up...it's now 2:00 and I can't get out of bed.
Somehow I manage to get up, shower and dress for the Dr's appointment. I am helped every step of the way and immediately lay down once I get into the office. Dr Rooney comes in and explains, it is a cancer, it is stage IV. It is in the back and lung, being in two places is what makes it stage IV. He explains the ACORN study which combines traditional chemo with a treatment called Erbitux. He believes strongly in this study/treatment and says everyone who has used it so far has been successful. Would I like to participate? Of course, if everyone is successful so far, why would I not want to jump on that bandwagon. He says great, we will get you set up..have to sign papers etc. He indicates he wants to do a brain and bone scan because these areas are not covered by a PET scan, he clearly states he does not expect any surprises. He also indicates that I should have a port implanted so I don't have to deal with needles anymore. This is scheduled for Friday, March 26, 2010.
The brain and bone scan are scheduled for Tuesday March 23, 2010. Because I've had so many appointments and delays and starts and stops I mistakenly think this is a week longer than it really is.....I keep pushing for an earlier date....then realize there are none! Being told you hve cancer does profound things to your mind, body, heart, soul, everything.
We go to the hospital for the two scans. It is a long afternoon, we spend time at the oncologists office getting paperwork completed for disability and the ACORN study. The person I work with in Dr Rooney's office is the absolute best, thank you Pam.
I am told the chemo would be a 7 hour treatment on a Monday for the Erbitux and 1 hour chemo daily for 18 weeks. The 7 hour treatment would be repeated every third Monday.
We leave the hospital somewhere in the neighborhood of 3. Sadly, the Dr has already recieved the brain scan results and calls the house. Leaves a message that he will call back. He calls again and tells us there is cancer in the brain. This changes everything. The brain needs to be treated first. This means radiation. We meet with the radiation doctor, Dr Sidney Kadish.
He introduced himself, asked me some questions about how I came to be in his office, did a physical exam which included listening to my lungs, heart, checking my muscle strength (don't let me push your hands/feet/ankles down) stand up with my feet side by side, close my eyes(checking for balance I think). He asked about vision problems, breathing problems, headaches, vomitting, diarrhea. He asked if I was not able to perfor normal daily activities like writing, reading, typing (I told him I went bowling last Wednesday, that peaked his interest.) My answers to those questions were no, no problems.
He then said, you do know that sometimes we see patients and tell them there is nothing we can do for them. This is not the case with you, we can treat you. He asked me if Dr Rooney explained the brain cancer to me and I said no, he basically told me it had been found and that he was working on getting me in to see a radiologist. He asked me if I saw pictures of it and I said no, he asked if I wanted to see pictures of it and I said no. He said that was perfectly ok.
He said that I have one small spot on the lower left brain. Because I have not exhibited any symptoms from the tumor they feel confident about the treatment. They will radiate the entire head at first on the of chance there is someting else that was not picked up on the scan and then they will focus on the one spot itself. I have to be back the same day at 3:00 to have the markers established. It is possible treatment will follow but that has not been confirmed. A schedule of treatments will be provided. Towards the end of radiation I will lose my hair. The radiation will cause fatigue and it is cumulative so towards the end will be the worst part of it. (This proved to be VERY true).
He indicated the port should still be inserted because chemo can start the day after radation ends as far as he is concerned.
We go back at 3:00 and I have a mask created. They do not put permanent markers on the face so a mask is used instead. I am told I will recieve 12 radiation treatments and they will begin on Monday March 29, 2010 at 1:00.
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