Where do I begin this update . . . first, I am out of the hospital (for the second time). The only thing they could find with my abdominal pain was "duodenitis" or inflamed duodenum. They don't know why I have it, what caused it, or what to do to make it go away. I just have to watch what I eat and take pain meds when it flares up. Okay. So they sent me home with a regimen of pain meds that seems to be working. This was on a Monday.
The next day, I had an appointment with a retina specialist to check out the spot behind my retina that my eye dr. had seen during my regular eye exam. It was suspicious and could possibly be cancer metastasized. Well, guess what, after a few procedures to get a really good look, it turns out to be exactly that - cancer spread. On the positive side, it looked to be an old spot that is not longer active, a dead spot. Apparently, it had been there for a while and the chemo already took care of it. And it wasn't affecting my vision. Okay, no need to worry about this, just keep an eye on it (excuse the pun). I asked Dr. S if the PET and CT scans check my eyes and he said no, they only go up to the base of my skull. So from now on, I will get full head scans, too.
Then on Wednesday, I noticed my port feeling very sensitive. They had used it for all my iv's while I was in the hospital. I looked and it was kinda red. Infection, right? By Thursday, it was more sore and more red. I decided to go back to the hospital to the infusion suite and let my chemo nurses take a look at it. John almost parked in the 15-minute space thinking they would take a look, confirm the infection, and send us on our way with a script for antibiotics. Well, here's what happened. The infusion nurses did suspect an infection. They called Dr. S who said I should go to the ER. When I got to the ER, they took massive tubes of blood samples to be tested and cultured and said I needed to be admitted. Nooooo, I had just gotten home!!!
They started me on IV antibiotics and waited for the blood samples to show what the infection was, could be staph or strep or MRSA. Great. Dr. S also wanted to have the port removed to eliminate any chance of re-infection. The port removal was supposed to be easy and painless. Let me say, it was not! I was awake and alert the entire time. And the area was already sore, so the little shots of anesthesia and the unattaching of the port itself were torture!! I had my worst episode of pain yet following the port removal. It was so bad I hyperventilated and almost passed out. Thank goodness for Dilaudid and John. My heroes!
Saturday, the dr came in and gave us the best news yet. The infection was staph, but it was the mildest strain. Years ago, they wouldn't even treat it with antibiotics, just let the immunes system take care of it. But since my immune system was compromised from the chemo, he prescribed an oral antibiotic that I could take at home. Home!!! But, my blood counts were low (I had already received a unit of platelets while I was there) they were hesitant to send me home. Well, after another test of my levels, they saw that they had started coming up, so Sat. night I got to go home!!!
BUT . . . as soon as I got home, I got a call from Mom that she was going to the ER. Remember, she had her car wreck the week before. They didn't find anything wrong at that time, but she was having severe pain on her right side now. Turns out the bones in her ribs where the cancer had spread were now broken. It must've happened sometime after she came home from the first visit. They gave her some different pain meds and told her to take it very, very easy until the bones healed.
Can you believe all this?!?!?!
We're all handling everything as well as we can, but it has been really hard!! I'm going to try and set up a Care Calendar for mom, like I have my meal calendar. She's not able to drive and at the moment not even able to move around much. She needs help. John has pretty much taken a leave from work and has been home with me this whole time. I am sooooo lucky to have his help! But I know he's got to be exhausted. The girls have been really good for him, bless their hearts.
So there you go. Things are pretty rough right now. I still can't eat hardly at all and keep losing weight. I still have bouts of nausea and vomiting that don't help. But my hair seems to have stopped falling out and I think I noticed some eyelashes growing in. Yay!
I am still on my chemo schedule getting Doxil every 28 days. The only thing is now I will have to get it through a regular IV since my port is gone. Once every 28 days shouldn't be so bad to find a good vein. I go for my 3rd infusion on Nov. 7 After my 4th infusion, Dr. S wants to evaluate how things are going and decide if it's worthwhile to keep on with the Doxil or if we should switch to something else. I have not heard what my CA125 is lately. That will be a big determining factor.
Okay, that's all for now, that's enough anyway!!!
Sunday, October 30, 2011
Thursday, October 20, 2011
In the hospital
Well, I'm here in the hospital . . . I had another severe stomach attack last Wednesday and went to the ER. The ER dr. could feel the hard lump in the upper right side of my abdomen, so he did an ultrasound (I hadn't heard back yet from Dr. Cameron's), then a CT scan. Turns out it is my duodenum that is inflamed. Dr. Cameron was contacted as well as Dr. Salmieri to see what can be done about it. In the meantime, they admitted me so they could manage the pain. I was actually really happy about it, I did not want to go home and have another attack with no way of relief. I compared the pain to labor, worst pain in my life! No amount of Rx pain meds were working. IV Dilaudid was my saving grace!
So for the past 2 days I have felt wonderful, practically pain-free! They are not sure what has caused the inflamed duodenum, but a general surgeon has been consulted to see what kind of treatment I should have. I have not met with him yet. Possibly, they will start with IV antibiotics. But surgery is not out of the question.
John has been with me for the past week and a half. I did have my chemo treatment on the 12th and then a Neulasta shot the next day. It has been wonderful to have him home, but I know he needs to get back to work soon. I am just so grateful to everyone who has made sacrifices so that he can be off. God bless you!
Now for the bad news . . . on Wednesday morning we called mom to come over and help with the girls so John could take me to the ER. I knew mom had been really exhausted the night before and it wasn't safe for her to be driving. But it was 5am and she was the only one I could think of. She made it over just fine. Then, to our surprise, Jan arrived right behind her. Mom had called her and probably Jan thought mom wasn't up to helping either and just wanted to be there, too. So they helped get the girls to school and John and I got ready to head to the ER. Mom was REALLY tired and we tried to get her to lie down and take a nap before she headed back home. But she seemed to think she'd be alright and decided to go ahead. I asked Jan to follow her to make sure she made it. Well, apparently Mom nodded off and drove off the road. She hit a phone pole and turned the car over. Despite how bad the accident was, she was okay - Thank you, Lord! Jan was right there and took her to the hospital. The car is probably totalled. After staying a night at the hospital (Gwinnett Medical, not Northside where I am), she was allowed to go home. But she is in a lot of pain. Her front hit the steering wheel and she is really bruised up.
So, needless to say, we have a lot on our plates at the moment! Poor John and Jan are the only healthy ones able to help and they are totally overwhelmed! Jan is still dealing with her divorce and trying to care for her kids solo, and manage her full-time job! It just doesn't seem real that this much misfortune could hit one family all at once like this. Praying for God to give us strength!
Please keep us all in your prayers and ask God to hold us up with His immeasurable grace. We will be okay, I know it. I just wish it wasn't so hard and didn't take so long!
So for the past 2 days I have felt wonderful, practically pain-free! They are not sure what has caused the inflamed duodenum, but a general surgeon has been consulted to see what kind of treatment I should have. I have not met with him yet. Possibly, they will start with IV antibiotics. But surgery is not out of the question.
John has been with me for the past week and a half. I did have my chemo treatment on the 12th and then a Neulasta shot the next day. It has been wonderful to have him home, but I know he needs to get back to work soon. I am just so grateful to everyone who has made sacrifices so that he can be off. God bless you!
Now for the bad news . . . on Wednesday morning we called mom to come over and help with the girls so John could take me to the ER. I knew mom had been really exhausted the night before and it wasn't safe for her to be driving. But it was 5am and she was the only one I could think of. She made it over just fine. Then, to our surprise, Jan arrived right behind her. Mom had called her and probably Jan thought mom wasn't up to helping either and just wanted to be there, too. So they helped get the girls to school and John and I got ready to head to the ER. Mom was REALLY tired and we tried to get her to lie down and take a nap before she headed back home. But she seemed to think she'd be alright and decided to go ahead. I asked Jan to follow her to make sure she made it. Well, apparently Mom nodded off and drove off the road. She hit a phone pole and turned the car over. Despite how bad the accident was, she was okay - Thank you, Lord! Jan was right there and took her to the hospital. The car is probably totalled. After staying a night at the hospital (Gwinnett Medical, not Northside where I am), she was allowed to go home. But she is in a lot of pain. Her front hit the steering wheel and she is really bruised up.
So, needless to say, we have a lot on our plates at the moment! Poor John and Jan are the only healthy ones able to help and they are totally overwhelmed! Jan is still dealing with her divorce and trying to care for her kids solo, and manage her full-time job! It just doesn't seem real that this much misfortune could hit one family all at once like this. Praying for God to give us strength!
Please keep us all in your prayers and ask God to hold us up with His immeasurable grace. We will be okay, I know it. I just wish it wasn't so hard and didn't take so long!
Monday, October 10, 2011
Updates . . .
Real quick, here's what's going on . . .
1. I finished radiation and am still having some lingering effects - fatigue, burns - they should last a few more weeks. But the dr. feels confident that the rads did their job.
2. I went to the eye dr. for my regular exam and he found a suspicious spot behind my left retina. So I will go see a retina specialist on Wednesday to find out what it's all about. Praying it's nothing major.
3. Still having severe upper stomach pain. Like I'm being punched over and over. When the pain isn't severe, I've always got a dull achey feeling there. Dr. is going to do an ultrasound on Tuesday. Could be gallbladder.
4. Chemo is on hold. At first it was my white counts that were too low. Now it's my platelets. Will get rechecked on Wednesday for possibly a treatment then.
5. My hair seems to have stopped falling out, but I am now left with a lot of thinning. I have a hat that is pretty much my standard wear now.
6. With the stomach issues, I have lost weight. But that's not a good thing until I can start eating again. Right now, even bananas cause a stomach attack!
So, that's about it for now. I will see Dr. S on Thursday and go over all these issues with him. We'll see what he thinks . . .
1. I finished radiation and am still having some lingering effects - fatigue, burns - they should last a few more weeks. But the dr. feels confident that the rads did their job.
2. I went to the eye dr. for my regular exam and he found a suspicious spot behind my left retina. So I will go see a retina specialist on Wednesday to find out what it's all about. Praying it's nothing major.
3. Still having severe upper stomach pain. Like I'm being punched over and over. When the pain isn't severe, I've always got a dull achey feeling there. Dr. is going to do an ultrasound on Tuesday. Could be gallbladder.
4. Chemo is on hold. At first it was my white counts that were too low. Now it's my platelets. Will get rechecked on Wednesday for possibly a treatment then.
5. My hair seems to have stopped falling out, but I am now left with a lot of thinning. I have a hat that is pretty much my standard wear now.
6. With the stomach issues, I have lost weight. But that's not a good thing until I can start eating again. Right now, even bananas cause a stomach attack!
So, that's about it for now. I will see Dr. S on Thursday and go over all these issues with him. We'll see what he thinks . . .
Sunday, September 25, 2011
Today was much better!
I'd like to take back everything written on previous post . . . today was much better. John came home and we worked together in the yard. I was able to do a lot of things I'd been wanting to do. And when my energy gave out, he was there to finish for me!
Beautiful day! And I'm so thankful I felt great!!
Beautiful day! And I'm so thankful I felt great!!
Saturday, September 24, 2011
Cancer stinks!
Today was gorgeous! Unfortunately, I felt bad and couldn’t enjoy it the way I wanted.
If I didn't have cancer, here's what I would like to have done . . .
1. Worked in the yard, cleaning and making it look pretty
2. Transplanted and re-designed my flower beds
3. Cleaned out the garage so I could park in it once again
4. Taken Penny to the dog park
5. Gone on a bike ride with the girls
6. Gone on a hike to Sawnee Mtn.
7. Practiced Caroline's dance routine with her
8. Practiced karate with RR
9. Went grocery shopping
10. Vacuumed the living room
11. Fixed the curtain rod that has been hanging crooked for months
12. Had a bonfire and roasted smores
I did make it outside to sit on my deck and enjoy the warm sun and crisp breeze. I love fall.
I really don't mean to be a downer and focus on the negatives. Because I am thankful for the blessings I have. I just miss some of the things I used to be able to do without even thinking about them. I pray and hope that very soon, I will be rid of this cancer and able to do all these things again.
If I didn't have cancer, here's what I would like to have done . . .
1. Worked in the yard, cleaning and making it look pretty
2. Transplanted and re-designed my flower beds
3. Cleaned out the garage so I could park in it once again
4. Taken Penny to the dog park
5. Gone on a bike ride with the girls
6. Gone on a hike to Sawnee Mtn.
7. Practiced Caroline's dance routine with her
8. Practiced karate with RR
9. Went grocery shopping
10. Vacuumed the living room
11. Fixed the curtain rod that has been hanging crooked for months
12. Had a bonfire and roasted smores
I did make it outside to sit on my deck and enjoy the warm sun and crisp breeze. I love fall.
I really don't mean to be a downer and focus on the negatives. Because I am thankful for the blessings I have. I just miss some of the things I used to be able to do without even thinking about them. I pray and hope that very soon, I will be rid of this cancer and able to do all these things again.
Wednesday, September 21, 2011
Radiation
Today I had my first radiation treatment. I'm having these done to my entire pelvis to zap the spots in my hip bones. Apparently, there are 3 spots leftover and 2 new ones. I'll go every day for 10 days. Of course there is the possibility of damage and side effects, bladder and bowel issues, so we'll see how it goes. I've had good results from radiation in the past, so I'm expecting good things!
My endoscopy showed no cancer in my gastro system, which is wonderful! But I still have inflammation and gastritis, baby ulcers, he called it. He explained to me that the chemo could be causing all the upset. Since chemo works on rapidly growing cells in the body (cancer, hair, nails, etc.), it affects the stomach because - I didn't know this - the stomach lining is constantly renewing itself. So it's made up of rapidly growing cells. I'll probably have tummy problems until I get off chemo. And who knows when that will be!!! Ugh!!!!
I had blood drawn today, incuding a CA125. Maybe tomorrow I'll find out the results. In the meantime, I'm just keeping on keeping on. Life is hectic around here, so there's always plenty to keep my mind of myself. And that's a good thing!
My endoscopy showed no cancer in my gastro system, which is wonderful! But I still have inflammation and gastritis, baby ulcers, he called it. He explained to me that the chemo could be causing all the upset. Since chemo works on rapidly growing cells in the body (cancer, hair, nails, etc.), it affects the stomach because - I didn't know this - the stomach lining is constantly renewing itself. So it's made up of rapidly growing cells. I'll probably have tummy problems until I get off chemo. And who knows when that will be!!! Ugh!!!!
I had blood drawn today, incuding a CA125. Maybe tomorrow I'll find out the results. In the meantime, I'm just keeping on keeping on. Life is hectic around here, so there's always plenty to keep my mind of myself. And that's a good thing!
Monday, September 12, 2011
Chemo #6 begun
Today I had my first infusion of Doxil. This will be my 6th chemo drug that I've been on. It's given once every 28 days for a total of 6 treatments. I have to go to the Lawrenceville office because the Northside location is all out of the drug. I've been to the L'ville infusion suite before, back in 2007 when I was on Chemo #1. It's just one big room with chairs all facing each other in a circle and within arms' reach of each other. Cozy. They do have a TV now, so that's an improvement. But it's not the same as my VIP room at Northside, no privacy and no personal perks like a remote control! If Northside does get the drug in, I can start going back there. But I figure once every 28 days is doable. The nurses at L'ville are super nice and friendly and I'm able to see Dr. S while I'm there for my monthly appts. I shouldn't complain.
The Doxil went fine today. It's a bright orange liquid (looks like Kool-Aid) and it takes 2 hours to infuse. Plus the pre-meds, we were there a total of 4 hours. John stayed with me this first time, in case I had a reaction to it. But it all went fine.
I've just been super tired lately. Falling asleep while standing up practically. Yesterday was my mom's 70th birthday and we all went over for dinner. I fell asleep on her couch for about 2 hours! "Happy Birth . . . zzzzzz!"
I did get the biopsy results on my stomach taken during the endoscopy - everything was benign! So I don't have cancer in my stomach for certain!!! The results just show gastritis which is a common result of chemo. And heavens knows, I've had enough of the stuff to eat through my stomach, intestines, and all!!! Seriously, though, I have heard of this happening, eek! Let's hope this Doxil is the magic bullet that rids me of all cancer entirely! Bang!!!
A friend on Facebook sent me this song and I've made it my new theme song. I just love it! And I hope you do, too!!
http://www.youtube.com/watch?v=RvIEJ_PmqJ8
The Doxil went fine today. It's a bright orange liquid (looks like Kool-Aid) and it takes 2 hours to infuse. Plus the pre-meds, we were there a total of 4 hours. John stayed with me this first time, in case I had a reaction to it. But it all went fine.
I've just been super tired lately. Falling asleep while standing up practically. Yesterday was my mom's 70th birthday and we all went over for dinner. I fell asleep on her couch for about 2 hours! "Happy Birth . . . zzzzzz!"
I did get the biopsy results on my stomach taken during the endoscopy - everything was benign! So I don't have cancer in my stomach for certain!!! The results just show gastritis which is a common result of chemo. And heavens knows, I've had enough of the stuff to eat through my stomach, intestines, and all!!! Seriously, though, I have heard of this happening, eek! Let's hope this Doxil is the magic bullet that rids me of all cancer entirely! Bang!!!
A friend on Facebook sent me this song and I've made it my new theme song. I just love it! And I hope you do, too!!
http://www.youtube.com/watch?v=RvIEJ_PmqJ8
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