Wow, a year later!

Not much new to report about my arm, but had a bunch of thoughts that I want to start putting down somewhere, so here seemed like a good place!

Last week was a crazy busy week. I am soccer conveynor for the under 9 age group, and I had to get all the team uniforms out to the coaches. We were also still waiting for schedules, which was an added stress. AND we were dealing with regular activities, including cubs and newspapers. The newspapers were late in getting delivered to us on Thursday (lets be fair, when are they delivered on time?! Maybe it would be better for everybody if I adjusted my level of expectation to embrace a late delivery time?) and Adam needed to have a first aid kit and a survival kit ready for inspection at cubs. We delivered the papers and picked up Chez Ronnie's on the way home. Got the kids eating (T-15 minutes until departure for cubs!) and grabbed the contents for the survival kit. Didn't have aluminum foil or waterproof matches, though I did have a flint to include. They wanted string....that would just tangle up unless I put it in something. I spied a kinderegg plastic egg and repurposed that. Yes, I was *that mom* the one who was doing my child's assignment. Deal with it. He checked it all out and gave me grief about us not having the proper matches. BUT. I need to pause here and talk about the kindereggs. I am kicking myself for having recycled these in the past. These little guys are gold! I have previously used film canisters to store dryer lint for campfires, raisins for lunchboxes, etc. The film canisters have become a rarity with the onset of digital cameras, but these little eggs almost do the job better! While I have not yet tried them for the raisins, I am planning on suggesting them as sewing kits for the cubs. I can't get scissors into them, but the kids are carrying a multi-tool. I figure that a package of dollar store spools, loaded by my sewing machine with thread, one in each egg, a needle or two in a piece of felt, and a couple buttons, and they will have an adorable sewing kit! The bonus is that they will get to eat the chocolate egg first! LOL! I may just be the most popular craft lady THAT day!

Keeping on the Sunny Side

Somebody
mentioned this song today, and I started thinking about all the applications. Why don't we sing these kinds of songs anymore?
http://www.youtube.com/watch?v=FOpGuHNwOXo

how much longer until sunshine?

Maybe the doctor would write me a prescription to send me someplace sandy and warm? I hate all this grey weather. My arm is doing well, but I have a bad case of the uglies. I am seeing a new doctor tomorrow that my family dr has referred me to, a psycho-therapist, i believe, so that he can look at my meds and make some adjustments. Everything seems so disconnected, out of joint. I thought I would be feeling so much better with my arm back in use. But instead, I am feeling so overwhelmed with everything that needs to be done. I AM getting what needs to be done, done. But it doesn't feel good enough, fast enough, something. Time to start doing those charts, and crossing things off as they get done, so that I can see what I HAVE accomplished, instead of focusing on what I still need to do!
Adam is starting a new program at Queens University tomorrow. Its thru the psych department, but it is a much more thorough testing than he has ever had. I am not expecting a different diagnosis than ADHD, but perhaps we will learn different coping skills. I really hate how the meds slow him down so much, at times he is almost zombie like. There should be a middle ground for him, something that slows him down so that he can focus, but allows him to keep his personality. Again, he will do better when the weather changes, as he will be able to get out and run more.

PHYSIO and MASSAGE too much in one day!

I had both a physio appt and a massage appt same day same place on Thurs. Given that I am still achy today, I am guessing that both on the same day is not a good thing. Lots of mobility in arm now. More exercises, still no weight bearing. Found out about a Tai Chi class that is especially for people regaining health, everything is paced slower and only to ability. Movements are adjusted to suit. And when instructor decided that you are ready to join the regular class, they gently push you out of the nest. Its not yoga, but it may be a good substitute.
Had Emily in to talk to the nurse practioner, and we are gong to get her a counsellor to talk to. Emily feels that she is stressed. I believe that she needs some help finding the language that she needs to express her concerns and disappointments. I think it would be better for everybody if we taught how to talk about and handle stress to children, so that they have those skills when they grow up.

the slow and painful slog back to wellness

you probably thought that you were going to read about my physio and such. ha! not even close!

was to see the chiro today for the first time in a couple weeks, and to start getting my alignment taken care of. the chiro has been down in some warm climate and that just makes me grumpy. but she has brought back an unexpected souvenier and is so ill that she can't even get out of bed. so they cancelled this week's appts. too bad as i was going to start accupuncture on thurs.

so, for a change, i was up and dressed and ready for to go when the kids were picked up for school. most days, since getting sick, i have just headed back to bed. i confess to spending some time reading, but actually have put in some time cleaning. yes, its true, i am doing housework! worse, i am bragging about it! now you all know just how big a sloth i have been! lol.

i have decided that for my emotional wellbeing, i must attain a noticeable goal. its not enough for me to state that i actually worked for 40 minutes straight, which is a new best for me (post infection, etc). instead, i have a very clean window in my bedroom. i can look at it and see that i have actually done something. the rest of the time was spent in unnoticeable gains, as things have gotten very very bad while i have been sick. i have two bags of trash out, and a bag of clothes ready and growing for pick up on friday. yesterday i cleaned the ceiling fans. two bright and shiny achievements (or does it count as five, as i cleaned one window and three ceiling fans yesterday and one window today?). and i am not all out of breath and sweaty, which must mean that i am gaining strength. and mobility, as my arm really isn't causing me distress. if i think about it hard enough, my arm doesn't move like it should yet, and is noticeablly weak. but considering that it hasn;t been used properly since last march, that i am able to use it at all is celebration to me!

i now need to take a break. hey, maybe ryan and i should go for a walk on this beautiful sunny day! or is that pushing it?
isn't it amazing how energy inspires energy?

Much Kewlness!

So I had enough on the ball the other day to remember to take a memory stick with me to the doctor.
In xray2, if you look about half way down, on the side away from my body, you will see a small circular dark shape, that is the original biopsy site. Overtop it, sort of rugged white, like a mountain,maybe, is the new bone growth, growing over the hole in the bone from the tumour as well as the biopsy. growth is healthy looking, and growing faster since he put the rod in. he suggests that the body feels that its safe to heal now that the rod is stabilizing things. this is all from the ortho surgeon.
the oncologist says that she is going to continue to monitor me, with mri's every 6 mths, but she is pleased, and really doesn't expect to see anything happening. if something does show up, it will be treated as a metastitized cancer, though. this means that they will do treatment, but won;t be so quick to cut out the cancerous parts. they would just try to slow the disease. but we are not going there. i am going to continue to do what i am doing, 4 packets of immunocal a day, vitamins, and a positive outlook.

Ultrasound tomorrow

No brainer at this point, just a 6 mth follow up.

Adam saw his specialist doctor today, and we got started in helping him to work through some of his issues. His temper has been increasing, and he isn't able to talk about it on his own. He will be seeing her again in a couple weeks.

Emily got player of the week at basketball. And the girls had an amazing game!

Doctor switching one of my meds

Apparently, antidepressants provide pain relief. Or affect some receptor in tbe brain so that one doesn't feel pain as badly. The doctor has decided to try a different one out. Now, when they ask you, when you are at the hospital, to put a number to your pain, do they factor in antidepressants, such that a 9 automatically becomes a diff number? And what about the poor guy who is drug-free and in pain? Does he get a different scale than me, altogether? I wonder about these things.

I have Biceps!!!!

and boy do they hurt! The massage therapist was working them today, and I am in pain tonight, but they are working, and that is a good thing. Lots of work ahead, to get these muscles up and working and strong. Still not to do anything weight bearing, but am to start to stretch out muscles and re-oxygenate them.

Long overdue post

Sorry, gang. Its just been so hard for some reason, to sit down and write this post.

Surgery date was Dec 4th. All went very well, I was admitted into the hospital for four days to adjust pain meds and get the pain under control. I have to tell you that the pain that I experienced, post surgically, was unlike any pain ever experienced before. It all seemed to be focused in my elbow, which they didn;t even touch. Apparently the spot in the brain that translates elbow pain is right beside the spot for the humorous and the humorous pain was so overwhelming that it just wasn't communicating at all. So it was sort of like walking around with the worst funny bone ever, that wouldn't stop!

Once we got the pain under control, and I got home, I basically stayed at home for the two weeks, mostly lying down with my arm propped. Meds made me nauseous , so it was hard to eat anything. The kids were with their dad, which was hard, but good too, because I was able to do basically nothing to take care of them. I had restricted movement this time due to stitches into my rotator cuff. That was annoying as I wanted to prop my arm away, but the stitches kept the arm tight to my body.

At the end of the two weeks, I saw the ortho surgeon and got to see pics of my new arm. it looks just like a big dogbone with a long rod in it and two screws, one at te top and one at the bottom. but the dr was pleased. I was sent home to carry on.

The kids came home on the 27th of dec and that is when we celebrated Christmas. My mom and dad came down as well, so it was really nice. Our friends, Sarah and Bill were away at that time and had offered us their house, so mom and dad had some opportunity for quiet time. I think it worked out really nice for them. The kids got spoiled, getting both ds and wii, but it was a good year for that, because I was still not able to do much. Kept them busy!

They are back at school, and I am still taking it very easy. I have started a passive physio program, with the therapist moving my arm for me, and massage therapy to get the oxygen moving better thru the arm and shoulder. They are both pleased with where I am at, and feel that I will make fast progress once I am able to move again.

All specimens that were taking from teh arm when they debrided it this time came back negative for cancer cells. Supposedly, because they were specifically testing for breast cancer, they would have easily found the cells, if they were there. So, we say woohoo, but remain confused as to what we are dealing with. I am to see the oncologist at some point over the next couple weeks. Its kind of funny, one arm, but I need to check in with 5 drs to find out how I am doing. General consensus is that I am doing well, for where I am in the healing process.

Because we are at what is basically the half way point of the post surgical "don't do anything with that arm" stage, I feel that I have lost ground, and am grumpy and frustrated with it all. There is very little that I can do, and energy levels are very low. I finished up another long run of antibiotics, orally, after the surgery, and they seem to hang in the body for a long time. As well, I still take percocet a lot of nights. Both can make one feel run down. And just generally sitting around and unable to do much is a tiring thing!

That is the basic update. I will try to post more later on as I think of it.

Thank you all for your thoughts and prayers. Please keep them coming!

getting things together

It is so much less stressful when you have zero time to prepare for surgery or hospital stay! Last time round, Adam had just come home from his grandparents, and had a laundry basket full of clean clothes, and Emily was at her grandparents, same thing when she came home, so Greg just had to grab some stuff for Ryan, and he was done. This time, its midweek, (I need to have things ready Thursday night)and seems so much more complicated. Oh well, I am allowed to whine here.

Today is pajama day at the school. I meant to take pictures before they left, but will try when they come home. I made new fleece bottoms for all of them. Emily wanted cheetah, of course, so I put a cheetah pawprint on her top, Ryan designed his giraffe jammies to feature a loooooooong, neck on the t-shirt. Adam's are multicoloured, with a red t-shirt that has a pocket. This is an important feature, as he can keep his sleepmask in it, the sleepmask that he made himself.

WE HAVE A DATE FOR SURGERY!!!

I am scheduled to have surgery on my arm on Dec 4th. They will be putting a rod into my arm from my shoulder and tightenning it near my elbow. because there will be stitches into the rotator cuff, i am not allowed to use the arm at all for two weeks. i feel like there is suddenly so much to do, but there really isn't. the kids will be taken care of by their father, here in kingston until they can come home or until its christmas holidays, whichever comes first.

pray that i am calm for the next week and a half. pray for wisdom for the surgeons, and for everything to go as planned, with no surprises. i will be able to start off the new year with a new arm that can get stronger and stronger.

Ortho surgeon update

I saw the ortho surgeon yesterday. There is still no firm diagnosis in my situation, he lacks faith in the pathology dept, the oncologist is not convinced, etc. So, while I will continue to be treated as if I have metastitized breast cancer, the ortho doctor is pretty sure that I am going to continue on as "NORMAL" following this next surgery and some radiation. He must be some impressed with his own abilities if he thinks he can make ME normal, I have been far off of normal my entire life!!! LOL

He was able to make the surgical options more clear to me and help me to understand why we were choosing one option over another one. With a tumour that is at its point of origin, when they remove it, they would put a rod in for stability and then likely do a bone graph from the bone bank. The bone bank is, essentially, dead bones. They are a foreign substance being introduced into a site that is already upset. He prefers, when possible, and when a patient has a strong prognosis, to avoid doing this. One- because there is a strong chance of the body rejecting the graph, and more surgery being required. Two- there is cementing involved and more cutting and general mucking about.

The oncologist would prefer that the ortho was taking more samples, cutting out more bone, as he would be doing if this was the origin site. But. There is already boney regrowth happening, and the ortho dr does not want to disturb it repeatedly. He is choosing to put a rod in without disturbing the original surgery. he wants to insert the rod up near the shoulder, and tighten it further down, getting closer to my elbow. There is a risk here, that, if there are cancer cells remaining in the arm, he could, inadvertently displace them further down the arm. This is why we will be doing radiation afterwards, inthe hopes of killing off any crap cells.

So, rod goes in, and stitches are made into the rotator cuff. This means NO MOVEMENT of the arm for at least two weeks, and then very limited activity for 6 weeks. He expects that this will all happen before Christmas, so any travel at Christmas is likely to be severely curtailed. I won't be even attempting to drive myself for a few weeks. This whole rotator cuff thing has me freaked a bit, I know so many people that have never been the same once they hurt their rotator cuff, so I will be overcautious with this.

The nurse came in today to remove the picc line from my arm. I need to wait one day with a bandaid on the site, but then can remove it and start to take care of the skin that has just been wrecked where the picc line was, from the various bandaids and adhesives that they have used. The tubing was 34 inches long in case anybody is interested. Wasn't that gross to look at afterwards, though I didn't look while they were doing it. Hopefully the itching will go away soon!

I am emotionally and physically exhausted right now. I thought I would start to feel better now that I am off the antibiotics, but they hang around for a while, and there is a lot of stuff starting to happen for the next surgery. That, and a bit of poor me, and we have one tired mama. Kids are here this weekend. There will be mandatory quiet time, for certain.

UNPLUGGED

So, I am officially unplugged from the antibiotics. I have the picc line in for another week, or until the ortho surgeon ok's its removal. I am taped up to waterproof the picc, and it is soooooo itchy that I may have to call the nurses to get them to come un-waterproof me! ARGH. Must think un-itchy thoughts!
It was lovely to have my first shower in months! Do I smell better or what! LOL

Emily continues to rock on the basketball court, scoring at least once each game and playing an awesome defence as well. Adam loves watching the games, he gets so excited. Next year, he can join the league.

Adam and Ryan both were invested into their Beaver troop on Monday, giving mommy lots of sewing for the week (each child gets 5 new badges at investiture). Somebody remind me that I need some new hand sewing needles.

Greg is famous once again at http://www.kingstonthisweek.ca/ArticleDisplay.aspx?e=2162658

We think that if you squint, he *might* be in the food lineup. He will talk your ear off about it, if you want to know more.


My oncologist called Wed night to say that she had seen the ultrasound, and was going to run routine MRIs of the breasts in six months, and again six months later. She is also going to speak to my surgeon to understand what his options for surgery are, so that she can support me through that, and I can better understand it all.

I see the surgeon on Wed, in the afternoon.

Ryan is laying a wreath at their remembrance day service. Both boys will get to wear their beaver uniforms to school.

I am going to sleep all wknd. Hope that everybody has a good wknd.

Suzette

Ultrasound Update

There was a whole lot of nothing for them to see during the ultrasound today. The radiologist suggested that a birthmark that I have in the area in question *might* have shown up as a lighter area, and that might be what they saw. But there isn't anything else to see. And they went over and over the area to be sure.

SO.

This leaves us with four possible conclusions:
1- there is still cancer lurking somewhere in my body that they haven't yet located, and its waiting, like a time bomb, for me to get distracted. I refuse to accept this scenario, as I will NOT spend my life looking over my shoulder for the boogie man.

2- The cancer was a cantamination during the surgical or pathology process. I don't think its very mature to be thinking of this as a conclusion. Yes, it *might* be the answer, but we will never ever prove it, so lets just move on.

3- The originating cancerous cells "repaired" themselves, as the body is sometimes able to do, but they had already sent out soldiers to other areas. This is the less pleasant, as it agrees with the ortho surgeon who insists on treating me as a metastitized cancer patient. Meaning that they can treat me but never cure me.

4- The cancerous cells were in host breast tissue in the arm from when the body was in a fetal stage, and the different body parts had not yet established themselves. From the very beginning of the breast cancer diagnosis, I have mentioned an episode of "HOUSE" that had a young woman who had had proactive massectomies only to show up with breast cancer. They found the tissue behind her knee, and treated it. I had asked if this was a possbility, but the ortho surgeon said that it was to give me false hope to go there. But its now one of our more likely possibilities. If they headed in this direction, I would think that they would put me on estrogen inhibitors, and possibly do a hysterectomy, to protect me in the future from this type of cancer. But that is going to be a huge talk that I have when my surgery is over and done with on my arm. One thing at a time.

So.
Next Steps:
-antibiotics finish on Thurs morning, the nurses come in and cap the picc line.
-I see the ortho surgeon on Nov 11, if he is satisfied with my blood work and feels that the antibiotics have done the job, he will pull the picc line.
-we will start paperwork for my next arm surgery, to hopefully happen in the next few weeks.

And I am pooped. Gonna go take a nap or something.

H1N1 cattle call!

My nurse had gone for her H1N1 shot two days ago, and was explaining to me how the process was working. So, when I found out that there was a clinic today, starting at 1pm, I packed everybody up and headed down. We were there before 1pm and there was already a 4 hour lineup. But I had been told to play the cancer card, because they needed me to have the shot pre-surgery. We waited for about 20 mins after explaining our priority, and then they took us up to the front of the line. The entire experience, including wait time following the shot was about 1 hour. The kids had varying reactions, Adam said it hurt a bit, but not much, Emily cried, and Ryan screamed his fool head off. Greg was very brave.
I bought them all frosties on the way homw.

I felt guilty about playing the cancer card, but there is no way I could have stood there for four hours. Its supposed to only be people on the priority lists, and yet thousands show up. They are hauling in any nurses that still have current licences, and closing healthy baby clinics and the like to put the staff over. And there are a lot of security guards. Plus the people to process the applications. This has to be costing a fortune! Will it all amount to nothing? Worse, is this going to be our generation's version of thalidomide, as I noticed a large number of pregnant women.

A fairly quiet week this week. Ultrasound on Tueaday morning. And then nothing else scheduled for the week. Thank goodness! Antibiotics are done this week, so the nurses will have to come in and cap off the picc line, and I will make arrangements to return the pump and all. So there will be plenty to keep me busy!

Adam was an awesome Harry Potter, Ryan was his loyal sidekick Ron, and Emily was a lovely cheetah for the candy haul last night. Cold night, very few kids out, mostly just nearby neighbours. Sad. I love Halloween. But the kids got a party at club and one at school, so they are happy.

Greg was another story. I am pretty sure he would STILL be out being silly, given the chance.

new appt

I am having the ultrasound of the breast on Monday, Nov 2. If they don't see what they are looking for, they may or may not do a needle biopsy.

I have found an online group (www.networkofstrength.org) for women with breast cancer, that has a number of women who are very educated in the ways of breast cancer. Its been a good opportunity for me to tell my story and get some feedback. Many people are telling me to push for additional testing and for a study to be made of what other pathologies were done in the lab the day they did mine, wondering about possible contamination of specimen. They have offered up two other possible solutions to problem....1) that originating cancer cells, assume in breast, the body took over and fixed or got rid of. 2) that, during fetal development, some breast tissue was misplaced in arm. In my opinion, if second one is possibility, then radical measures to protect me should be considered, including pulling all estrogen producing parts and proactive massectomy. but first we need to get my arm fixed before we tackle the next steps. It was just really good to find a site whete people could offer some perspective to what I am going thru. I was hoping to meet somebody else with similar circumstances but that hasnt happened yet.

Dr Appt Update aka the Future's SO bright!

Ok, HE doesn't think that the skin discolouration is anything much. He suggested old bruising. Dunno. I will continue to monitor it, but it isn't increasing in size. I got to see my xrays, almost as exciting as baby's first ultrasound! There is lots of regrowth happening in there, there is a calcium overgrowth around the hole that looks yucky, because its lumpy, but is what its supposed to be doing.

Current (and new) gameplan:

1- finish antibiotics next week.
2- see ortho dr again on Nov 11th.
3- if no sign of infection rearing its ugly head again, following the end of the antibiotics, then he will pull the picc line (WOOHOO!!!)
4- if no sign of infection, we will do paperwork to get me a date for surgery (WOOHOO!!!)
5- surgery plan now appears to be something like this:
-two small incisions, one near the shoulder and one near the elbow, and one moderate incision
- more debridement and reaming inside the humorous
- a steel rod placed within the humorous
- no bone graft

The main issue with bone grafting appears to be the risk that the body will reject the donor graft, resulting in more loss of bone, and more surgery. So, he would prefer that it go this way. It appears that the bone is content to heal itself (I would hope that this is because the Immunotec www.immunotec.com is helping!) so he is happier with a rod, and then monitor it. He anticipates that if there are no complications, I should be able to come home after a day or two in the hospital. There will be a period that I am NOT to use the arm at all, but following that (two or three weeks) he doesn't even think I will be needing a sling for most of the time. Certainly, if I am out walking for a length of time, or doing something that means that my arm can't take a break, I will be needing to use the sling, but for the most part, I just might be sling-free!

There will be more parts added to this plan. I don't know when they will be doing radiation. But we are now looking at having the surgery over and done with by Christmas. And as Martha would say "and THAT'S a good thing!". Lots of Physio in my future, including relearning how to walk and move without constantly hunching to protect a shoulder. But the future looks bright, and I need a new pair of sunglasses! LOL

Skin Discolouration?

My supposed "good arm" is the one that has the pic line running in it, which is how they are putting the antibiotics into me daily. I have been complaining about it a little for a couple weeks now, that there are some tender areas in the upper arm. The nurse has been watching for any signs of a blood clot, and there aren't any, so we have just put it down to me being a little grumpy with the whole thing. But today we noticed that I have some dusky discolouration on that arm. At first, I got a washcloth and scrubbed my arm, thinking that it was dirty. But its not dirt. So the nurse called the hospital and they have bumped up my appointment with the ortho surgeon to tomorrow. He will take a look at it, and maybe nix the whole antibiotics thing (I only have a week and a bit to go). And hopefully, he will still take the xrays of the surgical arm, so that we can see what is happening in there!

NO DOCTORS APPOINTMENTS?!!

I just looked at the schedule for the next two weeks, and noticed something alarming! I currently have no DOCTORS appointments scheduled for the week of Nov 2-7! How weird is that! I am sure that some will come along, but for right now.......wow....what will I do with myself! lol.