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.

A Christmas Survival Kit

1. A stick of gum to remind you to stick to it.
2. A candle to remind you to shine brightly.
3. A chocolate kiss to remind you that you are loved.
4. A match to light your fire when you feel burned out.
5. A Tootsie Roll to remind you not to bite off more than you can chew.
6. A pin to remind you to stay sharp.
7. A Smartie to help you on those days you don't feel so smart.
8. A Starburst to give you a burst of energy on days you don't have any.
9. A Snickers to remind you to take time to laugh.
10. Confetti to remind you to have fun.
11. A bandage to fix things that just will not work.
12. A bag to help you keep it all together and give you food for thought

Update on the Afghan thing

The children's dad is now apparently NOT deploying to Afghanistan, but IS moving to a new job, albeit still in Ottawa. I hope it all works out for him. I still half expect that phone call from the airport, or Afghanistan, telling me that he deployed after all. That is the way that it sometimes works in the military. Its often the way it works in our relationship. He knows that another surgery is coming up, and knows that I need him to help out.

UPDATE- post oncologist appt!

Ok, so here's the skinny on it all. Yes, there was an anomaly in the breast MRI. It was a 6 mm area that was lighter than "normal". It could be anything, but does not look "tumourish". Next step with this is an ultra sound with a radiation doctor type, and if he can NOT get a clear and impossible to argue with picture, then he will do a needle biopsy. But my oncologist does not feel that this is a cancer lesion.
2. she is still not convinced on the whole breast cancer cells in the arm mean metastitized breast cancer school of thought. She is still prepared to treat it as an anomaly and keep an eye on me, but only if they can show her more of what they are calling breast cancer cells. When they go into my arm to do the reconstruction, they apparently have to take more bone, and she wants to see breast cancer cells in that bone before she will be convinced. She has talked to the ortho surgeons involved and the pathologist and asked the question "is it possible that this was a contaminated biopsy?" Of course they all insist that there is no possible way that anything was mixed up or cross contaminated. This from the same people that managed to give me a staph infection during a routine day procedure biopsy! The oncologist argues that a diagnosis of met breast cancer is of such huge life changing proportions that they have to prove to her that a) its breast cancer and b) its metastitized. She will not treat this by the book.

Next steps:
-I am on the antibiotics for two more weeks.
-I see my ortho surgeon next week for xrays and to find out when he is thinking about doing the followup surgery. He needs to be really convinced that the staph infection is totally gone before he will go in and start putting parts in me.
-I need to get this Ultra sound and possible needle biopsy done. No date for this yet.


So. Mentally, I am in an ok place, right now. I had a few days of really bad anxiety, and pity parties, but I am over that. I am somewhat stronger physically than I have been, I have enough energy to do some errands, I have even had a couple days that I didn't need to lie down in the afternoon. My arm is not hurting me unless I really overdue it. I have almost full mobility with it, but am not using it to lift or push things. I got my hair cut last wknd, and have actually worn lipstick this week. Things MUST be improving if I am pulling out makeup! LOL. I have discovered that it isn't being lazy for me to go online to order my kids' jackets. Its being practical and energy conscious, both my energy and the planet's. If this keeps up, I just may do my Christmas shopping the same way! LOL. Just have to teach nosy Greggo to stop reading address labels!

God is in charge.

Oncologist visit tomorrow

I am seeing the oncologist tomorrow morning. She will have the MRI report and the report from the gynecologist. Hopefully, I will get a timing for a biopsy of the lesion they found. I hope that we are going to come up with a more definitive game plan, a direction, and get moving on things. Tomorrow, I also pick up my LAST WEEK'S supply of antibiotics!!! WOOHOO!!! The pik line will stay in my arm for a while yet, but it will be so wonderful to not be dragging this machine around with me all the time! Just a bit more than a week to go. And the highlight of next week will be the xrays to show whats going on in my arm. That, and Halloween, of course! Ryan tells me that Greg will have to take them around treat or treating this year, as I can't help carry the loot. I will stay at home, and hand out the goods. I even built the idea of a sling into my costume, and will dress up as Dorothy from the Wizard of Oz, and hide the sling with the mandatory Dorothy basket!

The children all went for dental appointments. Adam and his very inquisitive nature had many many questions about the xrays that they were going to take of his teeth. The hygenist has a daughter who is autistic (I saw her on Monday, and had brought her up to date on my kids, and was brought up to date on her daughter). It was a perfect partnership, she is accustomed to talking to a child who thinks very laterally, and enjoys watching children learn. She showed Adam all the aspects of the xray machine, and then took him and Ryan in with her into the booth where they develop the film, and explained all the steps. Ryan thought it was kewl, especially the plasters of people's teeth that he got to see, but Adam was thinking thinking thinking. Had some really relavent comments and questions. It was so neat! I know that I, personally, often get caught right up in a discussion with a child, but it really delights me to be able to observe it happening with somebody else.

And here is a first for me! I just booked my next dentist appointment, and was able to say that the day didn't matter, because it was in Sept, and I wouldn't need to make childcare arrangements for the first time in a decade! Ryan will be in school full time in September! Ok, so its practically a year away, but it was still a moment for me!

I hope everybody is happy and healthy, and washing their hands lots, and taking their potions, to avoid these awful flus that are starting up.

The Eagle

THE EAGLE



Did you know that an eagle knows when a storm is approaching long before it breaks? The eagle will fly to some high spot and wait for the winds to come. When the storm hits, it sets its wings so that the wind will pick it up and lift it above the storm. While the storm rages below, the eagle is soaring above it. The eagle does not escape the storm. It simply uses the storm to lift it higher. It rises on the winds that bring the storm. When the storms of life come upon us - and all of us will experience them - we can rise above them by setting our minds and our belief toward God. The storms do not have to overcome us. We can allow God's power to lift us above them. God enables us to ride the winds of the storm that bring sickness, tragedy, failure and disappointment in our lives. We can soar above the storm. Remember, it is not the burdens of life that weigh us down, it is how we handle them.

The Bible says, "Those who hope in the Lord will renew their strength. They will soar on wings like eagles." Isaiah 40:31

Nothing AHEAD of you is bigger or stronger than the POWER of God BEHIND you!

"Be strong in the Lord and in His mighty power." Ephesians 6:10

MRI and follow up appt

Sorry, I missed an update there, what with sleeping off the anesthetic.

MRI was really a no-brainer. Very kewl Dr in the house, Dr Norris, who was administering happy drugs, she is a cancer survivor, and I would have enjoyed talking to her more, but she waved byebye and gave me some more happy juice.

Went in today to see the Gynecologist. She had all the reports, including yesterdays. They have found a small lesion on my right breast. Its about 2 mm. They need to do a needle biopsy of it. If it is cancer, it changes things. It means that the cancer cells in my arm are indeed metastisized cancer cells. Jumping ahead of the game, it means that I will require chemo as well as the radiation that we had already planned on. I think that its important to note that its a very small lesion, and we had all been very puzzled with breast cancer in the arm but nowhere else. I will be pushing for estrogen suppresants now, and quite possibly for my ovaries to be removed completely. But I will wait to talk to Dr Mates, as she is the captain of this ship. The biopsy can be done over the next couple weeks, before the antibiotics are finished, which is nice, given that everything else is on hold until we finish the antibiotics.

But we will still take things one day at a time.

Tomorrow, I am off to find campkits for the boys, as they go to a Beavers daycamp on Saturday.
And some long sleeved shirts for Ryan, who insists on pictures on his shirts. I tried to convince him that he could wear a long sleeved shirt UNDER the picture tshirt, but he says that that doesn't count. Sigh. 5 is a very hard age to be.

Radiology Appt today

I met the radiation specialist today. He would like to see a slightly more aggressive approach taken to this whole puzzle. He would like to see me, post reconstruction surgery, have a round of radiation and chemo. He spoke my concern about the stray cancer cells that we haven't cut out. But he is on a wait pattern until I see Dr Mates (my oncologist) again, following the tests being completed. He also again mentioned hormone therapy, where we starve all cells of estrogen, which is what breast cancer lives on. Does anybody know why they don't just eliminate estrogen for breast cancer victims? Weird that if we know what they eat, why can't we just starve them out? Hmmmmm, there's some research for you Dad!

I got a big binder today, from the hospital, to keep everything together, including contact info and procedure information. Its very neat, but it very clearly states that its from the cancer clinic, so I imagine that I am going to have to start using that word around home, getting the kids adjusted to the concept, fairly soon. We have avoided it, and its been a little weird at times. When Emily was doing the Terry Fox run, she told me that there was a banner that you could write names of cancer survivors and victims, and she wrote the name of Susan, a young friend of ours who lost her eyes to cancer when she was 10. Emily said that she knew that MY grandmother had died from cancer, as well, but that she didn't know her personally, but that some of the other kids had members of their family that they were writing on the banner. I felt like such a liar at that point, that I haven't told them everything. Especially Emily who is getting old enough that she deserves to know. She has questioned why its taking so long for my arm to be better, and has asked if God is angry with us for something. Its hard, especially since this is breast cancer, and will increase HER risk for the disease and become part of HER medical history. I feel like I am making her grow up too quickly to give her that information. Adam will have a million questions and then, some day, come up with a cure, the way that child's brain works. And Ryan just wants to know if he can stay with me when I go to the hospital next time. He insists that he can just sleep on the floor. Enough of our friends know, I worry that they are going to let it slip to their kids. And kids figure out things psychically, sometimes, anyways.

I just really need to be done with this antibiotic bag that I have to haul with me everywhere. It is seriously making me grumpy. Its heavy and stinky and requires the nurse coming in each day. I just want one day of alone. One opportunity to shower without an arm hanging out the side. Whine whine.

Positive thoughts and positive energy......tomorrow morning's MRI is going to show nothing new and nothing interesting.

BUSY WEEK AGAIN!

I have an MRI on Wed morning, and an appointment with the gynocologist on Thursday to go over all the results.

Wed night, the boys are going on their first beavers hike. and then spending the day with the cubs on Saturday, at scout camp.

Hope everybody had a happy thanksiving.

My Oncologist just called

All my test results (except for the one next week!) are in, and she is pleasantly surprised to find out that there are no other cancer cells showing up. A spot on my liver turns out to be nothing of significance. The NEWEST plan is to wait out the antibiotics, and then have further surgery, taking some more bone, and then putting in some metal to give it stability. Radiation may not even be done! How bizarre! So I may have my surgery before Christmas!

GOOD MONDAY MORNING & AN UPDATE

just spoke with MRI people, they want me to come in to make sure that I will fit into the machine with the cage thing that they need to use next time. If all goes well, I am scheduled for next Wednesday for the next MRI. Click click, the plan falls into place!

I am so tired of hauling this pack with the antibiotics and machine with me everywhere! Its only for another 30 days, but its too long. And too much. Whine whine.

Got my little garden weeded out on Saturday. Took my stool and pulled weeds with one hand, but it worked. I had to get Greg to come clean them up for me, because I didn't use a bucket and couldn't pick them up with both hands! But it looks so nice now! Now I need to get a pot so that I can repot the aloe vera plant to bring it inside. It has loved being outside all summer, and has at least 5 babies ready to be separated. It feels good to do this stuff and feels good that I am able to do this stuff, even if I am sore and tired afterwards.

I have two appointments this week, one to start physio, and one with the GP as a catch up visit.

Hope everybody has a good week.

And now its time for the NEXT curveball!

Ok, so curveballs are not generally announced ahead of time, but this is a blog, and you do need a title.

James (the children's father, who lives in Ottawa and is in the military) called me yesterday morning, and told me that he, personally, had been requested to serve as assistant to a general or something, in Afghanistan, for a year, with a deparature 30 days from now. He wanted to know, given what is happening here, and will be happening here, was it feasible for him to accept the mission. I said I would do my own staff check, but seriously, if he is asking me, then he has already made up his own mind, and he is already going, at least in his own head. But I did my staff checks, and most of us agree that a) it would be harder on the wknds, with no break, but Greg *could* give up his Saturday job, to help out b) there would be more money coming in for help, so we could hire help c) less bouncing around for the kids would probably mean less outbursts, and definitely less transition time. And we are already doing it, without him, most days. So we all agreed that it really wasn't a problem for him to go.

By the time he came last night to pick the kids up, the woohoo had been downgraded to 6 mths, and only a maybe, that he would find out this coming week if it was a go. He had previously made it sound like it was absolutely happening, that he was the one going, as long as his checks fell into place. I fell for it again. He has done this to me so many times, put me in a position of hurrying to sort things out, only for it to not happen. Maybe its military life, but I think its his "woohoo, I am going to war" attitude that converts everything into a hurry up situation.

I am getting my first xrays of the arm since the hospital on Oct 30th. We get to see what, if any, regrowth is happening. May be wishful thinking, but it certainly is stronger, and some of the ouch issues may simply be because I haven't been using it, and it just needs physio. But I am not to try to use it until he gives the go-ahead. I mean, I use it, I only wear the sling outside the house, but to actually start lifting things, and pushing things, thats on a wait until healed.

Immunotec (www.immunotec.com/dragonfly1) has a wonderful new product that has just been released that was meant just for people like me! Its a probiotic with cranberry. Being on antibiotics means that ALL flora gets killed off in your stomach and intestinal tract. I eat yoghurt daily, but taking something with specific probiotics in higher amounts, and cranberry, which is a cleanser and can protect you from certain infections, can only be better than yoghurt alone.

I think I am feeling more energy this week. I have certainly not had to sleep as much this week as previous weeks. So that is good. I am still taking advantage of the children being away by staying in my pajamas for a good long while today! The nurse has been, so I am going to go back to bed and read a book.

Hope everybody has a good weekend.

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.

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

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.

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.

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

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!

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.

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.

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.

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.

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.

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!

Long Update!

Greetings from Kingston General!

Lots of stuff to bring you up to date!

On Saturday, August 22nd, Greg decided that it was time for me to get my arm looked at. It was day 10 post biopsy and my arm was swelling up more each day. This particular night, two of the staples were showing green roots, and part of my arm was going shiny with the swelling. The arm was also really hot. Greg took me into the urgent care dept at hotel dieu, and they got nervous about my blood pressure and pulse, both of which were elevated given that I was in pain. They got me in quite quickly and the ER doctor immediately called over to the ortho doctors at KGH. Well, they wanted me brought over to Kingston General Hospital ER immediately. So, Greg drove me over, though I think he was hoping that we could go by ambulance! They had a bed for me immediately, and ran blood work and did an ultrasound of the arm. From the ultra sound, the infection was really visible, sort of sprawling out like a cauliflower. The infection count in my blood work was huge. The decision was made to wait out starting antibiotics until they could get in surgically, so that they could get fresh specimens. But, and its a HUGE BUT, the biopsy results showed that there was no cancer cells! woo hoo! They admitted me, and transferred me to a regular floor on Sunday. I finally got in for surgery on Tuesday, and it went well. They basically dissected my arm, scraping out infection, and scraping hte damaged bone. The scraping that they had done at the biopsy was already showing signs of regeneration, so they feel good that the arm bone will regrow. They sewed me up and put me on antibiotics by intravenous. On Wed (or was it Thurs) they put in a PIK for intravenous, so that I can continue with the antibiotics at home. Yesterday (Saturday) they changed the antibiotics, based on the surgerys pathology reports.

So, I have been in the hospital for a week. I have a staph infection that they are treating with heavy antibiotics, and will continue to treat for several weeks. The incision is healing nicely, and is starting to itch, which is a good sign. I have a fair amount of pain still, but we are able to manage it orally, most of the time. I have nerve twitches as the nerve endings repair themselves.

James has the children, and he has returned to Kingston with them today, to get ready for school. He is taking some time off work and looking at doing some work at a desk in Kingston, so that he can continue to take care of the kids. I am unable to use my arm for anything that is weight bearing for a while, until the bone is healed. I am also on heavy medications. So I am unable to be the full time parent right now. But I was so happy to see my kids today! I missed them like crazy!

I think that this brings the blog more or less up to date. My brain is fried, so if I remember something, I will add it later.

Thank you for your continued prayers and support.

status report

surgery went well. it was just much more intrusive than i was expecting! i assumed that a biopsy was just a really big needle. it was a two inch incision, and staples. pain was never huge, just horribly uncomfortable . i have morphine for pain. i am much more comfortable today. the swelling is down (even my hand was swollen). we returned to the hospital the day of surgery, as i was bleeding, and learned that this was pretty normal. they packed th arm and sent me home with an extra shot of morphine. i am having a hard time sleeping, finally slept last night with the sling on and my hand propped up. i am at high risk for a break, with the bone in a fragile state. this is stressful for me. greg has been awesome through all this. i don't know how i could go thru this without him. we are now in wait mode again, needing the biop results before we can plan for surgery.
its hard for me to type with only one hand so there may not be many updates on here.

We are off to see the wizard!

I am checking in for 7 AM. Not sure when I am actually in the surgery room, but I think its a good sign that I am in first thing in the morning. Less chance of being bumped, hopefully.

WOOP WOOP WOOP THIS IS NOT A DRILL!!!

After how long in "hurry up and wait" mode, we have recieved THE CALL. Well, ok, one in a series of calls, but a very important call nonetheless, indicating that my biopsy is TOMORROW. I don't know anything more at this point, it was the doctor's office calling to alert me, but I am to prepare to go tomorrow. Its a horrible request to make at this point, but pray that I not bumped by emergencies. I will update as I get more info.

a little bit of news

My dr was to be away on holidays, and when I called his office last week, his office manager had voice mail picking up, saying that SHE was away until the 10th! So I came down to visit my mom while the kids are away for a week. I finally got up the nerve to email the dr today, after all, he DID give me his email address, and said that I could email with any questions. Well, I am blown away, but I got a reply from him, literally a couple hours later! How kewl is that! Anyways, they have a backed up surgery with more than 20 emergency cases, and he is reluctant to bring me in afterhours or on the wknd, as he needs to make sure that the specimen goes to pathology, otherwise its a wasted procedure. He says to hang in, and he is trying to get me in next week! So, this is very very good news, even though its not specific.

CAT Scan of Liver

I am totally a seasoned pro at this stuff, now! Different hospital for the scan, so different approach. Basically a little alarming that this hospital had a lot more in depth questions than the first one. Makes me wonder what the first hospital is skipping!

Not too bad for claustrophobia. I think I have experienced the worst that they can throw at me, testing wise (the MRI) so everything else will be gravy. Not expecting much from this scan.

Now, just waiting (and not waiting well!) to hear when I go for the biopsy. I need to get this stuff going! Its hard to sit and wait!

Date for liver CAT scan

I have an appointment for next Tuesday, July 28, for the CAT scan of my liver. Again, this is precautionary, there is a spot on my liver, but it is suspected to be a lesion or something, nothing exciting.

Hurry up and Wait Mode

Well, I just spoke to the office, and I am told that the doctor is attemping to get me in in the "short term" and if he is unable, he will hand me over to a third doctor, his associate. The office would be no more specific than "the short term". So I am left dangling. While I was hopeful to get in next week, the following week works out best, because the kids are already scheduled away with their dad for the week. We are just suddenly moving closer to Sept. Will update when I have something to say.

The BIG VISIT

The doctor's appointment was relatively easy. I guess the hard parts were the tests! Results are in and its mostly good news! It appears that the growth is only in the arm, that it hasn't metastatised from another location. This is really really good news. The is one spot on my liver that they want to test, but suspect that it is not related and is just an anomaly. They believe that they are dealing with a sarcoma that has started in the bone and worked its way out. Next step is a biopsy of the mass. That will probably be next week. This week is apparently all booked up. There is a two week wait, following the biopsy, for the results to be back in. That will be the hard wait, because once that is over, we can book surgery and get on with it! I asked for a sling, the ones that you buy at the drug store are crap. This one is a bit of overkill, with a couple of special supports, but i I figured that I am going to be needing it after the surgery as well. Of course, wearing it means answering more questions. So the kids are going to have to be brought online fairly soon, so that they have the right information, and not just what they happen to overhear.

But I am so happy and relieved. Praise God. I can handle this.

The Eve of the BIG VISIT

Terribly nervous, I must confess. There are several people that I know will be in prayer, and probably quite a few more that I don't know about, that will be also praying. Greg and I are meeting with Pastor Byron ahead of time, and then Greg will be going with me to the doctor's appointment. All test results are to be in, and plans are to be made. A biopsy should be scheduled, and I am hopeful that a surgery date will be planned as well. Its hard right now to make plans, not knowing how quickly things are going to come together. It would be really great if things could happen during the week of August 2nd, as the kids are already away. But I will be grateful if things can just happen in a timely manner. For tomorrow, I pray for dignity, and listening ears. Everything is all ready set, its just a case of learning what everything is.

MRI Update

So, I confess, I am a huge wuss. And I was really worried about this test. It turns out that most of my fears were right on the mark. It is hard to breathe during an MRI. It is tight and close and tomb like. But the techs were really awesome and when I thought that we were going to have to cancel the test, and rebook, with anesthetic, the one tech suggested taking a break and trying a different position. It was horribly hard for me, and somewhat painful (needed to have my arm above my head for 45 minutes) but I could hold on to the one end of the machine, to know where I was, and I could breathe in air that wasn't blowing directly on me. So she got me through it. Phew. Stress has every possible body part hurting tonight. But we got through it. Next step is the doctor's appt on the 20th. We will hopefully be developing a plan at that point. If things fell perfectly in to place, the kids are already booked away the following week, and that would be an amazing time for them to book the biopsy. But things seldom work out perfectly.

CT Scan

cocktail hour arrived at 9:30 this morning (it HAS to be after 5 somewhere, right? LOL) with me drinking a mysterious clear liquid every half hour until 11, when they took me in and hooked me up to an IV. More mysterious stuff then injected in my arm, as they tell me that I am going to feel like I have peed myself. Nice stuff. Anyways, a lot of workup for about 10 seconds of pictures. These pictures were focusing on chest and pelvis. My next appointment is July 8th.

And another appointment!

MRI is now booked for July 8th. Which meant that I could then call the surgeon back and get my next appointment with him, which will be July 16th. So things are coming together.

it takes a while to get the process started.....

hurry up and wait mode.....

I have just received a phone call booking me in for a CT scan tomorrow morning. Called MIL (mother in law) Mary Bradley, and she is taking the children for me. Thank God that she is available! Wouldn't you know it that, just as school ends, I start getting appointments for tests! And the tests are not short. This one starts at 9:30 (apparently the cocktail hour, as I go in to drink something nasty) and ends around noon.

Just one more appointment to hear from.

How we got to where we are....

I had a cold in March, 2009. I don't remember much about it, but I do remember getting up one morning with a sore arm. I thought that I had overextended my elbow by sleeping with one arm stretched out off the bed.

A few weeks later, it was still hurting. I figured that I was overcompensating movements to protect the elbow. I tried a sling, a couple braces. I was losing some range of motion, couldn't lift my arm above my head, couldn't straighten it completely. Still going with it being muscular or tendons, but it was sore enough that it was interfering with my sleep. I went to see the nurse practitioner and she measured the upper arm and found the left (sore) arm to be slightly bigger than the right arm. She thought that it was originating in the shoulder. She prescribed some anti-inflammatories and sent me for a series of xrays. I didn't hear anything about the xrays afterwards, and assumed that all was ok.

A month later, I was running out of anti-inflammatories, and, while my arm wasn't as sore, it was still not pain-free. I made another appt with the nurse practioner to find out about physio and get a new prescription. When she pulled up my file, the xrays had come back with a question about bone density and instructons to send me for a CT scan. But the notes had been overlooked. So she ordered a CT scan and told me to hold off on the exercises or physio. I got an appointment for a couple days later for the CT scan.

The results were due back in a week. At the week point, I started calling the doctor's office, but was told the results weren't in. It ended up going a week and a half, and I had decided that this meant that nothing was wrong. Then the doctor called me, herself. She told me that we had an "interesting set of results" from the CT scan. There was a mass indicated, and the bone was deteriorating at the point of the mass. She said that she was making arrangements to send me to an orthopedic surgeon as soon as possible to start more testing.

I saw the orthopedic surgeon on Thursday, June 18th, 2009. He is a shoot straight from the hip kind of guy. He brought up the pictures of the scan, and started explaining things and I nearly passed out. We are talking totally freaked out panic. I spent most of the session with my head between my knees, trying not to pass out. Very dramatic.

He said that the mass was likely one of three options....

1- a tumour, malignant or not
2- an infection
3- a metabolic issue

though he was pretty sure that it was a tumour. He stated that we would do in depth testing before anything else to establish whether the tumour was a one and only, or if there were more, and then make a plan. He wanted blood tests, a bone scan, CT scans, and an MRI. We were lucky in that I got the bone scan right away.

When I came home, I had a really good cry. I called some people, including my shrink. She told me to come in that afternoon to talk to her. I think that it helped a lot to get my thoughts in order right away. Eased some of the panic.

I had the bone scan on Friday. It was long and boring and a little bit claustrophoic at times.

Now we wait. I will hopefully get the other two tests soon.

The doctor has said that IF the tumour is only in the one spot, the worst case scenario would be a biopsy to determine the exact nature of the tumour, then possibly a round of chemo to shrink the tumour, then surgery to remove the tumour and damaged bone, followed by a bone graph and/or a metal plate.

It has been an exhausting and sickening week. I have people praying for me, and I am not freaking out. I pray that the tumour is only in the one spot. I really need to hear that its only in the one spot. Its the last week of school and I have so much happening right now.

Beginning at the beginning.

I think it is going to be easier to put information and updates on a blog. A lot of you will already have this information, but I will post updates as soon as I can.