Despite our best laid plans, I did not get both the MRIs today. Both require a dye injection for imaging, and the dye needs to be specially timed. Why nobody could explain that before, I am not sure. They also were quite concerned that anesthesia had been ordered for the breast MRI, as it needs to be done with the patient almost on their knees, leaning onto a support and into this special cage. Sounds alarming, but its just the positioning. But the point is that it makes intubation very difficult and potentially dangerous. So the MRI tech gave me a big "go team" speech, about trying this MRI with just sedation, thru the intravenous, instead of full anesthetic, the idea being that sedation does not require intubation, and if I could get thru it, then we could use it for the next MRI as well. If I couldn't get thru it, then the anesthestist was standing by to take me fully under, and we would talk afterwards. Well, I slept. Just the sedation put me right out. It was lovely. And they got their pictures. The downside is that I was drowsy all day. The huge upside is now we know how to get me thru MRIs and it isn't as invasive (according to the doctors) as anesthetic. So I now do not need to worry about MRIs.
Wednesday, September 30, 2009
Saturday, September 26, 2009
catch up post and lengthly whine
My gyn. appointment was changed to Thursday, just past. I have yet another doctor baffled and confused as I present a new version of something that they thought they had seen it all of. Ultra-sound and mammogram show nothing at all. Gyn. found all parts as they are supposed to be. She did a biopsy of the endometrine wall, and a pap, but says that I have all the parts in the condition that they are supposed to be in for a woman my age, who has had three children. Normal never seemed so bizarre! Where they would expect to see me full of tumours, there is nothing abnormal, everything is healthy. So where are the breast cancer cells coming from? The gyn. is running two MRIs on me next week, one of the breasts and one of the reproductive organs. If nothing shows up, apparently I get a paper written on me, or something exciting. Its stressful in a bad way, because I keep expecting them to find what they are looking for, and stressful in a good way, in that I feel the hand of God in my life. But when do I get to just get on with my life! I need to finish the intravenous antibiotics, and then radiation before they can do the surgical repairs that may or may not still be necessary. I need to wait until at least January before I can start to use the arm for lifting etc. I feel like there is a giant pause button in the middle of my forehead!
My kids are absolutely amazing. While each individual child is stressed out in their own way and reacting individually to being bounced around and missing home and mommy, and dealing with a sick mommy, they are also working together, and helping each other and me. Today, I was so tired out and achy that I lay down for a while and fell asleep. Emily knocked on my door and said that it was 5:45pm and could she go ahead and make mac and cheese for supper. I said please do, and she took care of it from start to finish. She asked Greg to come in and drain the pasta, and got Ryan organized to set the table, down to coaching him to write out everybody's names for their places. I was so proud of both of them, and they were terribly proud of themselves!
On Thursday morning, Adam made me breakfast in bed, all by himself, complete with cereal and yoghurt, graham crackers and mini ritz crackers, and a dixie cup of water, on a laptable of Ryan's. He had planned it the night before with his leader from Pioneers. It was beautiful.
But the flip side is that Ryan is talking babytalk, and refusing to do his homework. Adam is self conscious and nervous, pacing a lot. And Emly is easily moved to tears and nervous. I am staying in the moment and taking each thing one at a time, but it breaks my heart. What kind of mom can't even hug her kids properly because she can only use one arm? What kind of mom is dependant on her almost 10 year old for help with the laundry and dinner and groceries? I am really beating myself up, I know, but that is where I am tonight.
There is an interesting study being done through Queens University and the Cancer Clinic. They are asking people who have just learned that they have breast cancer to take a disposable camera with 36 shots on it, and record whatever they want with it. My first picture will be of my left hand. My perfectly good left hand that I can't use right now, because I apparently have breast cancer in my humorous bone. Its crazy and pathetic. Its also
My kids are absolutely amazing. While each individual child is stressed out in their own way and reacting individually to being bounced around and missing home and mommy, and dealing with a sick mommy, they are also working together, and helping each other and me. Today, I was so tired out and achy that I lay down for a while and fell asleep. Emily knocked on my door and said that it was 5:45pm and could she go ahead and make mac and cheese for supper. I said please do, and she took care of it from start to finish. She asked Greg to come in and drain the pasta, and got Ryan organized to set the table, down to coaching him to write out everybody's names for their places. I was so proud of both of them, and they were terribly proud of themselves!
On Thursday morning, Adam made me breakfast in bed, all by himself, complete with cereal and yoghurt, graham crackers and mini ritz crackers, and a dixie cup of water, on a laptable of Ryan's. He had planned it the night before with his leader from Pioneers. It was beautiful.
But the flip side is that Ryan is talking babytalk, and refusing to do his homework. Adam is self conscious and nervous, pacing a lot. And Emly is easily moved to tears and nervous. I am staying in the moment and taking each thing one at a time, but it breaks my heart. What kind of mom can't even hug her kids properly because she can only use one arm? What kind of mom is dependant on her almost 10 year old for help with the laundry and dinner and groceries? I am really beating myself up, I know, but that is where I am tonight.
There is an interesting study being done through Queens University and the Cancer Clinic. They are asking people who have just learned that they have breast cancer to take a disposable camera with 36 shots on it, and record whatever they want with it. My first picture will be of my left hand. My perfectly good left hand that I can't use right now, because I apparently have breast cancer in my humorous bone. Its crazy and pathetic. Its also
Tuesday, September 22, 2009
New appointments!
Had the consult for anesthesiology for the MRI. Loony doctor, I think he might have been nipping from his own specialty! This resulted in my MRI being rescheduled but only to the next day, Wednesday. No sooner changed that appt, but the Gynecologist from the Cancer Clinic called to make an appt for, drum roll please........Tuesday! How cool is that! What a way to streamline an operation!
My arm with the pik line is healing some. Terribly raw from all the dressing changes. I am applying vitamin E cream all the time, and it seems to be helping.
The pain in my other arm is really really manageable now, mostly just shoulder issues during the day, when I am overdoing it, and some evening pain around the bone.
My arm with the pik line is healing some. Terribly raw from all the dressing changes. I am applying vitamin E cream all the time, and it seems to be helping.
The pain in my other arm is really really manageable now, mostly just shoulder issues during the day, when I am overdoing it, and some evening pain around the bone.
Friday, September 18, 2009
more appointments!
Got a last minute call for an US this afternoon, and a booking for a consult for anesthetic for monday. More appts, more doctors. Such fun.
Good news about my friend Sarah, who was also having arm problems, and wouldn't get it looked at. She freaked out about my circumstances and FINALLY got an US yesterday, and she has a frozen shoulder. In the rock, paper, scissors world, she loses, but I am so happy that she is ok! She will need some serious physio, and has started accupuncture as well But she can stop stressing that it might be something more.
Good news about my friend Sarah, who was also having arm problems, and wouldn't get it looked at. She freaked out about my circumstances and FINALLY got an US yesterday, and she has a frozen shoulder. In the rock, paper, scissors world, she loses, but I am so happy that she is ok! She will need some serious physio, and has started accupuncture as well But she can stop stressing that it might be something more.
there are some interesting new developments!
When the oncologist met with her board, the slides from the pathology were presented. There was a great deal of discussion and the other doctors favoured a different approach. The conscensus is this: NO estrogen therapy. MRIs of the breasts and uterus to re-affirm that there are no stragglers there. Then, when the antibiotics are finished, radiation of the arm, and then extensive surgery to remove all diseased parts of the bone, and repair it using bone graph and metal. They optimistically feel that this may be the end of my problem. They never use the cancer-free or cured words, but feel that this may be the end of this cancer. Bizarre but true. My mom says that she would rather have me on the estrogen suppressent for protection, and I will be asking them about that. But it seems like good news to me. Sure, it means more surgery, but if we realize that the surgery for the infection was a separate surgery, we HAD planned on a proper surgery following the biopsy. And that surgery has not happened yet. They did more dissection and biopsy when they went in for the infection, but didn't do repair or anything else.
The pain with this last surgery is much different than with the biopsy. This pain is manageable with meds, and I *can* reduce it to nothing, though I am not often able to do that, as the meds make me kind of goofy. But with the infection pain, nothing really touched it, except that ice helped some. So, I am expecting the same from another surgery, lots of pain, but the manageable variety. It will mean another week or so in hospital, as well.
I have one MRI booked for the 28th of Sept. but they are trying to match up a second MRI with it, as they are going to knock me out for them. So it may have to be a different day. But i will keep you posted.
The pain with this last surgery is much different than with the biopsy. This pain is manageable with meds, and I *can* reduce it to nothing, though I am not often able to do that, as the meds make me kind of goofy. But with the infection pain, nothing really touched it, except that ice helped some. So, I am expecting the same from another surgery, lots of pain, but the manageable variety. It will mean another week or so in hospital, as well.
I have one MRI booked for the 28th of Sept. but they are trying to match up a second MRI with it, as they are going to knock me out for them. So it may have to be a different day. But i will keep you posted.
Wednesday, September 16, 2009
Two doctors visits down
Saw the family doctor on Tuesday and the ortho surgeon today (Wednesday). The family doctor has been away and was well behind the times in what she knew had happened. She told me that in her role as a general practioner, with a family practice, she wants and expects to walk this road with me, holding my hand. She is available at all times, and will help me find other resources as we need them. It was a wonderful feeling to know that she cared and wanted to be involved. That said, she updated my file, and I am to call her, or see her, as needed. She suggested a check in every couple weeks. She also feels strongly about me seeing a social worker, who will help me work thru issues as they happen.
Ortho doctor was not what I expected. Because of the infection, he is having to take a "wait and see" approach, waiting for the bone to heal on its own. If there hadn't been infection complicating matters, he might have done a bone graph or rod, but with the infection there, the bone graph could have been killed by the infection, or the infection could have adhered to the rod, complicating everything, and potentially causing irreversible damage. So. the current plan is for me to see him at the end of the antibiotics run, for an xray to take a look see at the bone. At the end of the antibiotics is when we are going to look at possible radiation, so radiation takes priority over reconstruction surgery. Radiation will also slow or halt any regrowth of bone. Fun. But its better to be doing things step by step. At the end of the antibiotics, in the xray, it will be better determined whether they successfully got the tumour out (there are chances of traces remaining). I am a bit grumpy to learn that I may be stuck with a bad arm for longer than the 18 weeks, and its really going to tick me off if they have to go back in and do reconstruction. But maybe there is less pain and discomfort involved when they do reconstruction because its fixing the problem and not waiting for nature to fix it? He has ordered a brace for me that is designed for fractures of the humourus that aren't put into a cast. He says that I can use it now that the mass is out. It will provide protection from being jostled (I am so nervous about people bumping me that I walk curved in, trying to protect my arm)and will give me support that may allow me to use the arm a bit more. He has also ok'd me for some physio, to keep the shoulder and elbow mobile. No resistance and no weight bearing, but that is ok. He says that the physio will likely be quite painful right now, but better to start now, than to wait until I am even stiffer. He also is keeping me on the stronger pain killers, as long as we only use them as needed. He says that he expects me to be experiencing a lot of pain right now, that ideally, I would be not using the arm at all and be doing absolutely nothing for at least 6 weeks. But that is not going to happen, so we will use the pain killers at night, or when I am guaranteed not to use the arm. The fear is that, if some pain is eliminated, I will over use the arm. I am just grateful that there are meds out there that can reduce the discomfort to a manageable level.
I am meeting my avon supervisor tomorrow to sign the paperwork and should be up and running later in the day. So, dingdong, if you want Avon, you know who to call! LOL
Ortho doctor was not what I expected. Because of the infection, he is having to take a "wait and see" approach, waiting for the bone to heal on its own. If there hadn't been infection complicating matters, he might have done a bone graph or rod, but with the infection there, the bone graph could have been killed by the infection, or the infection could have adhered to the rod, complicating everything, and potentially causing irreversible damage. So. the current plan is for me to see him at the end of the antibiotics run, for an xray to take a look see at the bone. At the end of the antibiotics is when we are going to look at possible radiation, so radiation takes priority over reconstruction surgery. Radiation will also slow or halt any regrowth of bone. Fun. But its better to be doing things step by step. At the end of the antibiotics, in the xray, it will be better determined whether they successfully got the tumour out (there are chances of traces remaining). I am a bit grumpy to learn that I may be stuck with a bad arm for longer than the 18 weeks, and its really going to tick me off if they have to go back in and do reconstruction. But maybe there is less pain and discomfort involved when they do reconstruction because its fixing the problem and not waiting for nature to fix it? He has ordered a brace for me that is designed for fractures of the humourus that aren't put into a cast. He says that I can use it now that the mass is out. It will provide protection from being jostled (I am so nervous about people bumping me that I walk curved in, trying to protect my arm)and will give me support that may allow me to use the arm a bit more. He has also ok'd me for some physio, to keep the shoulder and elbow mobile. No resistance and no weight bearing, but that is ok. He says that the physio will likely be quite painful right now, but better to start now, than to wait until I am even stiffer. He also is keeping me on the stronger pain killers, as long as we only use them as needed. He says that he expects me to be experiencing a lot of pain right now, that ideally, I would be not using the arm at all and be doing absolutely nothing for at least 6 weeks. But that is not going to happen, so we will use the pain killers at night, or when I am guaranteed not to use the arm. The fear is that, if some pain is eliminated, I will over use the arm. I am just grateful that there are meds out there that can reduce the discomfort to a manageable level.
I am meeting my avon supervisor tomorrow to sign the paperwork and should be up and running later in the day. So, dingdong, if you want Avon, you know who to call! LOL
Monday, September 14, 2009
SUTURES OUT1
The sutures finally came out today. The incision is already starting to flatten out. REALLY hurt to take out the sutures, because the skin had sort of started to include them in regrowing. The incision site feels very thick and doesn't have sensation of feeling on the top layer. And its itchy!
I go to see my family doctor tomorrow, and will have to give her a history. Should have sent her the blog address!
The kids are pitching in so hard, its incredible. All are enchanted with their new levels of responsibility and are eager to help. Extra motivation is provided with Ryan, the littlest one, being right ready to take on any jobs that others complain about! Sort of a reverse of Tom Sawyer and the picket fence!
I go to see my family doctor tomorrow, and will have to give her a history. Should have sent her the blog address!
The kids are pitching in so hard, its incredible. All are enchanted with their new levels of responsibility and are eager to help. Extra motivation is provided with Ryan, the littlest one, being right ready to take on any jobs that others complain about! Sort of a reverse of Tom Sawyer and the picket fence!
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