Today was run around day. Last night David noticed something oozing out of my incision. He also found a stitch. There were only to be staples at the site or so we were told. The homecare nurse came and inspected my technique for injecting myself and said it was fine. I showed her the incision and she said it was hot and she thought it was infected and yes there was a stitch left there. I called my doctor and was told I could come right away or wait until tomorrow. The nurse had suggested I get in right away. So I head to the doctor to wait and wait and wait. Finally I tell them I am on chemo and I don't want to wait in a waiting room full of sick people. They escort me to one of the examining rooms. I wait. Then they decide they need that room and send me to another room. By this time I have had it!!! I let them know what I think of the health care system while having a mini-breakdown. My exceptionally good doctor comes in and is very kind. She says she understands and that I have a right to be angry but I still feel badly. After looking at the incision she says it is not infected and that the stitch is a dissolvable stitch but the part that is exposed won't dissolve so she cuts it short. This is good news but why didn't the surgeon tell me, or the nurse who removed all the staples or why didn't the homecare nurses know this? In my fit of anger I also told the doctor I did not appreciated the homecares nurses that reeked of cigarette smoke or the fact that a second nurse tried to come & give me an injection on the day I already had one (imagine if I was a senior and was unable to remember if I had my injection?) Needless to say the health care system isn't perfect and I should be thankful for what they have done for me so far. For those of you reading this with elderly parents or children or yourself make sure you keep track of everything and be in charge because mistakes will happen and you need to be your own advocate!!
The Lord gets his best soldiers out of the highlands of
affliction.
-- Charles H. Spurgeon
Tuesday, August 31, 2010
Monday, August 30, 2010
Neupogen Injections
6 days since I have had my first chemo and I am feeling pretty good, all things considered. I started Neuopogen injections on Friday and I will receive them for days 3-10 after each chemo. The neupogen is the expensive drug (approx $16,000 total) to help stimulate the growth of neutrophils (a type of white blood cell) to fight against infection. Here in Ontario the government only wants to pay for it if your white blood cells become too low. Because I am having dose-dense chemo my oncologist applied for special authorization to get it covered and to start it before my white cells become too low. Thankfully we did get it covered.
I am now learning how to inject myself with it rather than waiting on someone to come every day to inject it. A few more days and I will be a pro at it!
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12
I am now learning how to inject myself with it rather than waiting on someone to come every day to inject it. A few more days and I will be a pro at it!
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12
Wednesday, August 25, 2010
First Chemo
Today I had my first chemo. The only painful part was the pain David and I felt for the woman next to us. They couldn't find a vein and told her she might not even be able to get her chemo today :(
As for myself the injections went as planned. First dexamethasone, then doxorubicin, and lastly cyclophosphamide. Only took about 2 hours. I will be excreting the one drug for up to 3 days so I have to make sure I double flush!! No worries, I am only going to use my "private ensuite".
Only experiencing one side effect...a headache...but that could also be family induced. C & A officially moved home today (with the help of my parents) with ALL their stuff but I am so blessed to have them here with me at this time.
The stars may fall, but God's promises will stand and be
fulfilled.
-- J. I. Packer
As for myself the injections went as planned. First dexamethasone, then doxorubicin, and lastly cyclophosphamide. Only took about 2 hours. I will be excreting the one drug for up to 3 days so I have to make sure I double flush!! No worries, I am only going to use my "private ensuite".
Only experiencing one side effect...a headache...but that could also be family induced. C & A officially moved home today (with the help of my parents) with ALL their stuff but I am so blessed to have them here with me at this time.
The stars may fall, but God's promises will stand and be
fulfilled.
-- J. I. Packer
Tuesday, August 24, 2010
Triple Negative Breast Cancer
Injected with another radioactive substance today. The MUGA scan is designed to evaluate how well my heart is functioning. This is a baseline because the one chemo drug is cardiotoxic. The test didn't hurt but it does make you wonder how much radioactive stuff can they inject you with before causing damage.
Saw my oncologist today and was told the ultrasound didn't show any cancer in the other breast which is good. The bad news is I have triple negative breast cancer. Only about 10-20% of all breast cancers are triple negative and of course this comes with a poorer prognosis. So I guess that makes me very rare!!
The good news is my $16,000 additional drug to help prevent neutropenia is covered!
Saw my oncologist today and was told the ultrasound didn't show any cancer in the other breast which is good. The bad news is I have triple negative breast cancer. Only about 10-20% of all breast cancers are triple negative and of course this comes with a poorer prognosis. So I guess that makes me very rare!!
The good news is my $16,000 additional drug to help prevent neutropenia is covered!
Jesus replied, "What is impossible with men is possible with
God."
Luke 18:27
God."
Luke 18:27
Monday, August 23, 2010
Another Test & Wig Shopping
Well, not exactly how I planned on spending our 24th wedding anniversary but it was still good.
Up bright & early to make an 8am ultrasound appointment. After waiting quite some time they tell me they can't read the cd for the mammogram from the last place!! What, aren't they standardized in Ontario?! And I get a lecture that I should be going to the same place all the time...well I would have if you weren't going to make me wait 3 weeks (and be full of more cancer)!!! So, I get the ultrasound and another mammogram and apparently I don't need a biopsy.
Wig shopping with Courtney and Ashton in the afternoon. A woman right around the corner from us actually sells them out of her house. I'm really not interested in taking a lot of time but we find one that we like so she orders the colour for us. Should be available in 2 weeks, I hope so because they say your hair starts falling out 10 days after chemo & chemo starts tomorrow!!
Ashton & Courtney makes us a nice anniversary dinner and then we go see a movie.
Pray, and let God worry.
-Martin Luther
Up bright & early to make an 8am ultrasound appointment. After waiting quite some time they tell me they can't read the cd for the mammogram from the last place!! What, aren't they standardized in Ontario?! And I get a lecture that I should be going to the same place all the time...well I would have if you weren't going to make me wait 3 weeks (and be full of more cancer)!!! So, I get the ultrasound and another mammogram and apparently I don't need a biopsy.
Wig shopping with Courtney and Ashton in the afternoon. A woman right around the corner from us actually sells them out of her house. I'm really not interested in taking a lot of time but we find one that we like so she orders the colour for us. Should be available in 2 weeks, I hope so because they say your hair starts falling out 10 days after chemo & chemo starts tomorrow!!
Ashton & Courtney makes us a nice anniversary dinner and then we go see a movie.
Pray, and let God worry.
-Martin Luther
Friday, August 20, 2010
Some Background Info
I have decided to start this blog for anyone with inflammatory breast cancer and for anyone interested in what is going on in our lives . Just a warning...I am not a writer nor will I ever be!
Clearly I should have started this sooner but here is the background info.
July 14/10 I woke up with a small rash on my breast and thought it very strange...not itchy or irritated. The next day I woke up and the rash was slightly bigger but something told me this was not right so I googled it and figured I had 2 possible diagnosis. I started looking for a thermometer & I couldn't find one. I go to work and buy a thermometer and decide I do not have a fever. That leaves only 1 possible diagnosis...inflammatory breast cancer. My doctor is on vacation but she is in a group of docs so I go to the after hour clinic. The nice doctor there orders a mammogram & ultrasound but thinks the rash is really nothing. The next day I go to work & call for an appointment...the soonest is August 18!!! I ask for something sooner but they say no, so I ask if there is any other place I can go to get in earlier and they say probably not & that the hospital likely has the same waiting time. After getting off the phone I google for places and after a few phone calls I find Credit Valley Imaging can get me in next Wednesday...yes!!!
Each day the rash is getting bigger and my breast is growing and I know nothing can be done without the mammogram & ultrasound. Wednesday I go for the tests and the technician is very caring & understanding & puts a rush on it for the radiologist. Wednesday afternoon at the doctor's office I am told that the radiologist recommended a biopsy. Now to find a competent, available surgeon during the summer!! I get an appointment for next Tuesday July 27/10.
Dr. P is a nice doctor who immediately diagnoses what I already know...inflammatory breast cancer. I of course start crying because this is the first time I actually hear the diagnosis made. It is one thing to think you have the cancer but quite another to actually hear the sentence. Before I know it I have consented to a modified radical mastectomy for Thursday August 5. The problem is you can't just take someone's breast off without pathology thus the wait. I have a punch skin biopsy done that day before Dr. P heads to surgery. The next day I have a core biopsy done. Neither were painful considering what I am headed into. Results may be ready by Friday at the earliest but probably not until Tuesday because Monday is a holiday!! Dr. P's next OR time is Thursday and I get the first surgery of the day 8 am. I feel sorry for the person who was scheduled for elective surgery at that time and got bumped due to me. Now I know for the future...if you have elective surgery and get bumped just be thankful you are not the other person!!
Surgery goes well and I am given a morphine pain pump (not the usual I am told). I have severe pain in my right arm probably due to the nodes being taken out. David encourages me to use the pain medication but I am not really into it. It makes you light headed. It's funny because you think being a pharmacist I would be more into drugs but I am not!!
Overnight in the hospital and then home. The drains really suck and hurt but I finally get one out on Sunday and the next Tuesday. I still can't have a shower because the skin has to heal from the drains. Finally I get an okay to shower Friday night!!!
August 16th Grand River Regional Cancer Centre appointment with Dr. M. Pathology results show grade III tumour (the worst), 11 cm in greatest dimension and 3/13 lymph nodes with metastatic carcinoma. Stage ??? more tests to follow. Margins uninvolved with invasive carinoma :)
The plan is chemo to start next week. It will be aggressive therapy every 2 weeks instead of every 3 weeks for 8 treatments. Yes, I will be done before Christmas!!
For those of you reading this with inflammatory breast cancer...the mammogram was normal but not the ultrasound...push for the ultrasound & a biospy.
Wednesday August 18th I spend at Grand River Hospital. First I get a CAT scan and then head to nuclear medicine for a whole body bone scan. They inject you with a radioactive substance & then you come back 3 hours later for the 30 minute scan. No problem and no pain!!
I promise this will be my longest post...just giving you background info
Clearly I should have started this sooner but here is the background info.
July 14/10 I woke up with a small rash on my breast and thought it very strange...not itchy or irritated. The next day I woke up and the rash was slightly bigger but something told me this was not right so I googled it and figured I had 2 possible diagnosis. I started looking for a thermometer & I couldn't find one. I go to work and buy a thermometer and decide I do not have a fever. That leaves only 1 possible diagnosis...inflammatory breast cancer. My doctor is on vacation but she is in a group of docs so I go to the after hour clinic. The nice doctor there orders a mammogram & ultrasound but thinks the rash is really nothing. The next day I go to work & call for an appointment...the soonest is August 18!!! I ask for something sooner but they say no, so I ask if there is any other place I can go to get in earlier and they say probably not & that the hospital likely has the same waiting time. After getting off the phone I google for places and after a few phone calls I find Credit Valley Imaging can get me in next Wednesday...yes!!!
Each day the rash is getting bigger and my breast is growing and I know nothing can be done without the mammogram & ultrasound. Wednesday I go for the tests and the technician is very caring & understanding & puts a rush on it for the radiologist. Wednesday afternoon at the doctor's office I am told that the radiologist recommended a biopsy. Now to find a competent, available surgeon during the summer!! I get an appointment for next Tuesday July 27/10.
Dr. P is a nice doctor who immediately diagnoses what I already know...inflammatory breast cancer. I of course start crying because this is the first time I actually hear the diagnosis made. It is one thing to think you have the cancer but quite another to actually hear the sentence. Before I know it I have consented to a modified radical mastectomy for Thursday August 5. The problem is you can't just take someone's breast off without pathology thus the wait. I have a punch skin biopsy done that day before Dr. P heads to surgery. The next day I have a core biopsy done. Neither were painful considering what I am headed into. Results may be ready by Friday at the earliest but probably not until Tuesday because Monday is a holiday!! Dr. P's next OR time is Thursday and I get the first surgery of the day 8 am. I feel sorry for the person who was scheduled for elective surgery at that time and got bumped due to me. Now I know for the future...if you have elective surgery and get bumped just be thankful you are not the other person!!
Surgery goes well and I am given a morphine pain pump (not the usual I am told). I have severe pain in my right arm probably due to the nodes being taken out. David encourages me to use the pain medication but I am not really into it. It makes you light headed. It's funny because you think being a pharmacist I would be more into drugs but I am not!!
Overnight in the hospital and then home. The drains really suck and hurt but I finally get one out on Sunday and the next Tuesday. I still can't have a shower because the skin has to heal from the drains. Finally I get an okay to shower Friday night!!!
August 16th Grand River Regional Cancer Centre appointment with Dr. M. Pathology results show grade III tumour (the worst), 11 cm in greatest dimension and 3/13 lymph nodes with metastatic carcinoma. Stage ??? more tests to follow. Margins uninvolved with invasive carinoma :)
The plan is chemo to start next week. It will be aggressive therapy every 2 weeks instead of every 3 weeks for 8 treatments. Yes, I will be done before Christmas!!
For those of you reading this with inflammatory breast cancer...the mammogram was normal but not the ultrasound...push for the ultrasound & a biospy.
Wednesday August 18th I spend at Grand River Hospital. First I get a CAT scan and then head to nuclear medicine for a whole body bone scan. They inject you with a radioactive substance & then you come back 3 hours later for the 30 minute scan. No problem and no pain!!
I promise this will be my longest post...just giving you background info
Those who hope in the Lord will renew their strength. They will
soar on wings like eagles; they will run and not grow weary, they
will walk and will not be faint.
-- Isaiah 40:31
soar on wings like eagles; they will run and not grow weary, they
will walk and will not be faint.
-- Isaiah 40:31
More Tests
We were woken up this morning at 8:15am by my oncologist. The bone scan was normal but the CT scanned showed something in the other breast. Yes, I did ask for both to be removed but the left was considered elective surgery and would have to wait. They managed to get me an emergency ultrasound at 8 am Monday morning! The good news is that nothing else showed up so we could just chop it off too & theoretically I could be cancer free!
I had my 29 staples removed today and the nurse said it was healing nicely. I still have some numbness which should eventually go away. No weight lifting for awhile she said.
Managed to pick out a cross body purse in a record time of less than a minute. Supposedly they are better for your back etc & now that I can't use the right side I decided I needed one.
David told me last night I should try to gain ten pounds just to keep ahead of the predicted weight loss!! Why is it when this opportunity arises I really don't feel like eating? Funny the way the mind and body work.
I had my 29 staples removed today and the nurse said it was healing nicely. I still have some numbness which should eventually go away. No weight lifting for awhile she said.
Managed to pick out a cross body purse in a record time of less than a minute. Supposedly they are better for your back etc & now that I can't use the right side I decided I needed one.
David told me last night I should try to gain ten pounds just to keep ahead of the predicted weight loss!! Why is it when this opportunity arises I really don't feel like eating? Funny the way the mind and body work.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
Subscribe to:
Posts (Atom)