Wednesday, September 30, 2009

MRI

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.


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

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.

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.

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.

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

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!

Friday, September 11, 2009

Cancer Clinic appointment

My oncologist, Dr Mates, is a tiny Romanian lady, but before you get the picture of the wizened old lady with the big scarf tied under her chin, she is tiny but quite young.

We did the usual history, ad nauseum. She then talked quite candidly about breast cancer and when it metastitizes. In this case, they are pretty certain that it is breast cancer though it could be a cancer of the female organs, in that the cells had both estrogen and progesterone. It is weird that these cells have shown up in my arm and nowhere else. It could be that they started in the breast and didn't like their home so moved on to another location (hey SFA! They swarmed!!). But it is good that we don't see other spots. She is going to start me on a medication called "tamoxifen" which suppresses estrogen, basically starving the cells. I would then have to go onto another med which is used by people worried about osteoarthritis. She is presenting my case to her panel of colleagues on Tuesday morning, and the pathologist who read my slides from the second surgery will be there with the slides. If anybody has an alternate suggestion for my case, they will discuss it. Otherwise, she will call in my prescription and get me started on it. She is also looking at radiation for my arm, but needs to wait until the antibiotics course is done. She says that statistics on survival for this type of cancer really don't reflect my circumstances, so I am not going to look at them and try to make them fit. I will see her fairly regularly, but not until after the antibiotics are done. In the meantime, I will be sent for another MRI (there had better be better dope this time!) and I will see a gynecologist at the clinic. This clinic has everything, there are social workers and nutritionists, and many support elements. It looks like its very well developed.
My nurse came in and backed up a lot that Dr. Matis had said. She says that the drug is good, if it works, for precisely 5 years. Then they have to change it. But she remarked on how far this kind of research will have gone in 5 yrs.

So its good news, mostly. A lot easier to take when the person giving the info seems to be involved with you, caring about you.

Thursday, September 10, 2009

Home Nurse offers new perspective

Marg, one of the home nurses, explained to me about the general surgeon who freaked me out so badly while I was in the hospital. I refer to him now as Dr Doom and Gloom. She explained to me that General Surgeons have the god complex, and if something can't be cut out, then you are going to die, from their perspective. That made a lot of sense to me. I feel much more relaxed about seeing the oncologist tomorrow!

First Oncology Appointment

I am seeing a Dr Mathis tomorrow morning at 8:30 AM at the Cancer Clinic. Terrified but also excited that we will finally be moving forward again. Its been another three weeks of waiting.

My arm is more mobile, I can actually put it above my head slowly. I am not pushing it, as its still "broken" but it feels good to be moving it some.

Tuesday, September 8, 2009

Appts and more appts

Ortho surgeon has called. I see him next week. Got a couple others to hear from. Isn't this fun. I wonder if I can get a discount by buying taxi chits in bulk?
This showed up on a devotion that I read, and it really hit home for me:

"The settled happiness and security which we all desire, God withholds from us by the very nature of the world: but joy, pleasure and merriment, He has scattered broadcast. We are never safe, but we have plenty of fun, and some ecstacy. It is not hard to see why. The security we crave would teach us to rest our hearts in this world and oppose an obstacle to our return to God: a few moments of happy love, a landscape, a symphony, a merry meeting with our friends, a bath, or a football match, have no such tendency. Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home."
~ C.S. Lewis in The Problem with Pain

helps me to keep things in perspective.

Friday, September 4, 2009

Home Sweet Home

I am home! Amazing how tiring getting ready to come home. Home care nurse came in tonight to get me set up. So I am now down one arm, in a sling, and the other arm is connected to an IV that is connected to a fanny pack with a pump. I need to carry this all the time for the next 8 weeks. I feel totally claustrophobic just thinking about it all! How I am to get anything accomplished.....I Just don't know.

still in hospital

though it looks like i will be discharged today, depending on home care. several things need to be coordinated before home care is good to go, including equipment pick up and the actual antibiotic being ready for pickup.

general surgery was in yesterday to talk to me. he has scared me completely, in that he says that any type of cancer that is from one part of the body that has transferred to bone is treated only with chemo and is not curable. this is a lot of information. i am not sure if the man has just handed me a death sentence, or what. i will be seeing the oncologist as an out patient, and maybe then will start to have an understanding of what all is happening.

i am scared. i am emotional. at this point in my life, i just want to be the mom, to be celebrating my kids. i feel healthy. i don't want to be told that i am gettiing sick. i don;t want to suspect each cough or sore muscle as something worse. i don;t want to live life from a pessimistic perspective, wondering if each moment is my last moment. this isn't who i am. i am looking forward to going home today, looking forward to sleeping uninterrupted. i am also nervous, wondering how much i will be able to do at home, and will it be enough.

Thursday, September 3, 2009

The weirdness continues

Ok, so I went for the mammogram yesterday, and they had the doctor immediately look at it, given the situation. It was fine. Everything was clear. The girls showed no signs of anything unusual.

SO, the new game plan is to hand me over to oncology to be treated as an outpatient for further testing. Incredible. I am emotionally exhausted, and no longer know what to think about anything. It appears that I am being released from the hospital today, to continue the antibiotics thru home care. The arm itself is looking good, healing well. It will be considered "broken" for several weeks, up to about 18 weeks, while the bone (hopefully) regenerates itself. We hope that the antibiotics continue to do their job, and that there is no recurrence of infection. And we carry on, taking things day by day. It all feels like a cosmic joke, but I am certain that there are many people out there experiencing similar situations.

Tuesday, September 1, 2009

scary new info

Just as I was about to prepare to be discharged, Josh, my surgeon, came up tonight and said that we had to have a talk. New results from the biopsy done at my surgery have shown what appears to be breast cancer cells. While these cells have been removed from my arm, we now need to know how bad it is with my breasts. I had a mammogram in late January with an ultrasound done on a spot that my doctor thought was slightly denser. Both came back fine. So, I am hopeful that this means things were caught early, though it seems strange that my arm started hurting in March and in April was xrayed. That seems really too close to the mammogram to have enough time to metastatize (sp). But we will have a great deal more information soon. I am having a mammogram tomorrow and probably a full MRI as well. They have already spoke to the anesthetist and he is going to put me out for the MRI (last time, the sedation did not sedate, so they need to do it with me fully knocked out to have success). I have good people looking out for me, and I believe that good things are coming. I thought that the good times were here, but I guess I need to get thru this bump first.

shake up in post surgery plan

No matter how carefully we plan things, reality will sneak up on you and wreck those plans.

James is not able to take the compassionate leave that we had planned on. He is unable to stay in Kingston and care for the children. So, we are coming up with new plans. I will just need to do my recuperating during the day, after we get the kids to school. Thank God for Greg, he was right there, immediately pledging his support. Friends and neighbours will help, too. And I will need to adhere to the plan, as I am at risk of a relapse or aggravation of the infection and injury. The bone is still very precarious though we are hoping for full regrowth and stability. Apparently, it could heal itself, but that will take about 18 weeks. I am not to be lifting and carrying, or weight bearing for that length of time.

Its amazing how stress creeps up on you. You would think that, while I am in the hospital, I would be able to just breathe, and not worry or get stressed out. But life carries on, and stress happens.

osteomylitis

welcome to the word of the day, kids. Osteomylitis is what the dr says is what was in my arm to start with. apparently, this was in the bone, and sort of sitting there for a while. It has been bumped out, or burst out or something. And then just sort of sat there, aggravating itself now and then. When they went in to do the biopsy, there were no tumour cells, and no infection that showed up on the pathology. However, the dr says that he believes that there was a dormant infection in the middle of it all that got stirred up. He also says that the staph infection that I am now being treated for was likely introduced during the biopsy. While I agree with him that it is far easier to be dealing with a staph infection and antibiotics, rather than chemo and steel rods, a part of me is feeling rather grumpy that I wouldn't have been dealing with the staph except that THEY introduced it!