Lynn's Inflammatory Breast Cancer Blog

Done

2011-12-18T17:00:00.000-05:00

I went for my last chemo on Friday Dec 9th and waited over 2 hours for my blood work. Unfortunately due to human error (what we aren't perfect?) my blood work did not get prioritized as having chemo that day. When the blood work finally came back it was decided I could not have chemo as my blood counts were too low. So after 14 chemos my body said enough is enough. I too have said enough is enough. Although I was disappointed not to get my last chemo, on the bright side my hair will grow back a week earlier and I will feel better a week earlier! I have already started feeling better when working out. I am so thankful that my cancer responded to the chemo and it was able to take care of the skin metastasis. So many other women I know with IBC do not respond to chemo and need to keep trying different agents. I am also thankful that this chemo allowed me to continue working and living as "normal" a life as possible. Praise be to God.

A man leaves all kinds of footprints when he walks through life.
Some you can see...others are invisible, like the prints he
leaves across other people's lives.
Margaret Lee Runbeck

So far so good

2011-11-07T09:41:00.000-05:00

I have now had 11 chemos and the side effects are adding up. I have good days and bad days, just never know what kind of day it is going to be. But the bad days aren't really bad just achy hands but manageable with acetaminophen alone. The day after my last chemo I slept 5 hours then up for 2 hours then to bed for 12 hours. But the sleep is good and the next day I was up at 5:30 am (time change) and made some banana bread for Ashton and strawberry and chocolate scones for David. Then we were off to watch Ashton run her first half marathon! 1:43:50 chip time and we are all so happy for her.
Enjoying every moment. My beloved bringing me breakfast in bed is one of the sweet joys of life. Watching the leaves change colour is another. So many things to be thankful for.

I learned that life is not just a destination but a journey.
While the expedition can be long and arduous, it can be full of
beauty and pleasure as well.

-- Wayne Holmes

3 Rounds Done

2011-10-18T11:01:00.000-04:00

I have finished 3 rounds of chemo (9 chemos in all) and I feel like I have run a marathon. At first the chemo was fine but its cumulative effects are starting to wear on me. The tingling in the fingers and feet are coming, more off than on though. I am trying hard to fight off all the colds customers bring me. But I am not complaining. Life is good. I am thankful for the warm shower in the morning, the sun rise and all the new day has to bring me. I am thankful for each day I have here to share with family and friends. Thank you Jesus.

More chemo

2011-10-03T16:00:00.000-04:00

Well I have decided against surgery for many reasons and I now have a new oncologist who is caring and knowledgeable!! Something I didn't have before. The idea of surgery was really just a stab in the dark. It would be major surgery and a skin graft was not an option. You cannot put skin on bone you need muscle. So the plastic surgeon would take my abdominal muscles and pull them up and maybe take some pectoral muscle too. It didn't sound very exciting to me but the main reason I decided against it was because there was no guarantee of clear margins. My rash thankfully has responded to the chemo so we would be cutting out a piece of skin with no idea how far or big to cut. No thanks. So we are left with chemo. The oncologist has decided I will have 5 to 6 rounds of chemo. Each round consists of once weekly chemo for 3 weeks then off 1 week. I have had 2 rounds of chemo so far. 5 rounds will take me to Christmas. My hair is falling out and I will probably spend another winter bald but it could certainly be worse. I feel fine except for some tiredness caused by the chemo. My scans were clear meaning I have no metastasis which I am thankful for. We are just going to take a wait and see approach. When (unfortunately they are not saying if) it returns we will deal with it. I am still working because I have such great co-workers who make coming to work a enjoyable. They even did the Run for the Cure on Sunday with me.

If I didn't have spiritual faith, I would be a pessimist. But
I'm an optimist. I've read the last page in the Bible. It's all
going to turn out all right.
-- Billy Graham

Treatment

2011-08-24T09:45:00.000-04:00

I just realized the last entry was in draft so today you will see 2 entries. I have had 3 treatments of weekly chemo and the cancer rash seems to be responding. It is getting smaller, thank you Lord. The chemo this time around is similar to last time but now it is nanoparticle, albumin-bound paclitaxel which has less side effects but costs 10x the price of plain paclitaxel. You can't have it unless you have had the other first and have had side effects. Thankfully I can still work with this one.
The kids are all leaving next week for school which is causing anxiety on my part. I can't believe they will all be gone. I know they will be in God's hand and thankfully not too far away.Thank you everyone for your prayers during this time.

May the God of hope fill you with all joy and peace as you trust in him
Romans 15:13

It's Back

2011-08-24T09:30:00.000-04:00

Sorry for not writing on here for a long time. I have been busy living :)
I know when I read other people's blogs and they stop writing I often wonder if they have died. Well I haven't died yet but this inflammatory breast cancer is trying to kill me!
A few days short of a year and my cancer is back, in the same place, in the same way. This time they have no idea what to do. I saw a surgeon today but we are thinking chemo would be better because this time we could actually see if it works. Last time I had surgery first and therefore we never knew if the chemo was the right one because there was no way to monitor a response. All my IBC sisters in the States say surgery is not the correct treatment and I should have chemo. Since I have already had the first line chemo we have numerous options. How I wish I could get a good oncologist's opinion like the doctors who work at the 2 IBC sites in the U.S. but that really isn't an option. The best in Ontario just got back from holidays and will look at my reports tomorrow and hopefully get back to me soon. The other oncologist is on holidays, just like last year when I couldn't get anyone to help me sooner. Dr. T from Sunnybrook will know the best treatment but a second opinion would be nice.
On Friday I go for a bone scan and a CT scan just to make sure it hasn't metastasized. I really don't think it has because I feel fine except for the mental strain this is putting on me. I plan on continuing to work and living life the best I can. I really think quality is better than quantity even if the oncologist today said that surgery would buy me more time!

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18

Gene Testing & Follow Up

2011-04-01T22:58:00.000-04:00

I have tested negative for BRCA1 and BRCA2 gene mutation. This means I do not have this genetic mutation and therefore I have not passed this down to our children. I am very thankful for this! I may still have a mutation in another cancer predisposing gene that has not yet been discovered but for now this is all we know.
Today I had my follow-up with my oncologist. I did not like walking back into the Cancer Center but at least I wasn't there for more treatment. When you walk into the waiting room everyone looks at you and then you at them. Today I was once again the youngest (or at least I'm pretty sure I was). My oncologist's nurse said she liked my short hair and that is suited me :) Good thing because I don't have a choice!!
My follow up is going to consist of a yearly mammogram and MRI staggered 6 months apart and quarterly doctor's appointments. I was surprised with this as from what I have heard most women do not get offered MRIs but fortunately my oncologist worked with inflammatory breast cancer during her residency and knows how aggressive it is. The lastest article written March 21, 2011 states that the median overall survival has significantly improved from approximately 15 months to 40 months; studies document that approximately 28% of women with IBC are alive and free of disease at 15 years.
http://www.cancernetwork.com/breast-cancer/content/article/10165/1822129?pageNumber=1
Lord willing I do pray that I will be in the 28% group alive in 15 years but I know that if I am not I will be heaven praising Jesus. So either way I win!!

Happiness depends on happenings, but joy depends on Christ.
-- Life Application Bible

All Done!!!

2011-02-13T14:49:00.000-05:00

Yeh, I am officially done treating this inflammatory breast cancer!!!! I had my last radiation treatment on Thursday but this almost didn't happen. I saw the radiologist on Wednesday and after he looked at my burning skin he said we should probably stop. I didn't say anything but was thinking NO I will have my last treatment no matter what! Well he opened up my chart and either the diagnosis or the prognosis changed his mind because then he said we better finish the treatment plan and have the last radiation. He said to call him if I blister as I would need some Flamazine. So far no blistering but very itchy. Interesting to know that the nadir (or worst possible side effects) occurs 7-10 days after treatment is finished..meaning you keep burning for awhile!!
Now what? That's what I want to know. I have some follow up appointments and I will have to find out how they monitor me. From what I understand the follow up monitoring isn't the best in Canada but I will find out.
Some of the wonderful women at work took me out for a celebratory finished treatment dinner. Thank you!
Thank you to everyone for all your prayers, support, meals and love you have shown us during this difficult time. I will always remember you.

But those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,they will walk and not be faint.
Isaiah 40:31

4 More to Go!

2011-02-05T20:07:00.000-05:00

I have only 4 more radiation treatments to go!! And as you can guess I am very excited to be done. It has been time consuming driving to Kitchener every day and the schedule kept changing (but I managed to get that straightened out).

I have a "sunburn" that gets worse with each treatment but the doctor said as long as the area doesn't turn gray I will be able to finish all the treatments..yeh!
I have been working more and some customers even tell me how much they like my new haircut! A few people don't even recognize me. Wait till I show up without the wig and all my gray hair! Yes my hair is growing back but unfortunately it is mostly gray but at least I do have hair and my eyebrows are back too.
I am starting to run again but it is going to be a long process...I have no cardio endurance.

What good is it for a man to gain the whole world, yet forfeit
his very soul?

-- Mark 8:36

Radiation

2011-01-07T21:50:00.000-05:00

I had my first radiation treatment today. It doesn't take long but they x-ray you the first time and every week thereafter. At first I thought that's alot of radiation from the x-rays but then I realized that radiation is what I am going for. A little bit more isn't going to make any difference!
The woman organizing my appointments called me first to see if I wanted a 7:45 am or 5 pm appointment. For those of you who know me can guess I passed on the 7:45 am!!! Fortunately she said the schedule would open up so I can go a bit earlier than 5pm.
One interesting thing was the woman puts a wrist bracelet on me and I ask if I get a new one each time. She says no you need to wear it all the time. What??? Then she explains that you can cut if off but you need to bring it with you each time or wait and get a new one. Well I must admit this is more environmentally friendly then getting a new one each time as I did at the GGH.
I am trying to work a few short shifts (5 hours) and it is working out well. Several well meaning customers have told me how much they like my new haircut, not knowing that it is a wig. I am looking forward to getting this phase over with.

“Joy is the experience of knowing that you are unconditionally loved and that nothing--sickness, failure, emotional distress, oppression, war, or even death--can take that love away.”

Henri Nouwen

Tattoos

2010-12-29T21:38:00.000-05:00

So at my appointment last week at Princess Margaret Hospital it was decided that nothing different should be done for my radiation. Today I had my appointment with the radiologist at Grand River Hospital and I received my first ever tattoos!! Five small "freckles" to act as markers for the radiation. First they position you and make a mold so that each time you come you stay in the same position. Then they use the CT scanner to determine where they will put the markers. Then they use a black indie ink to tattoo you. It does hurt a little because of the needle but not for long. I can't imagine getting a sleeve tattoo...way too painful!
Radiation hopefully will start next week. Today one of the four radiation machines broke and they are not sure how long it will take to get the part so we will see.

Without faith... nothing is possible. With it... nothing is
impossible.

-- Mary McLeod Bethune

Last Self-injection!

2010-12-10T13:39:00.000-05:00

Well I am all done chemo and have my last self-injection tonight! I am so happy to be finished chemo...no more toxic chemicals being injected into me to kill off any cancer cells. Seems rather barbaric to inject toxic chemicals into a body and hope the body survives but I guess it is the best we have yet.
I have an appointment with an oncology surgeon at Princess Margaret Hospital on the 20th. He will decide what, if anything, we will do about the other side that may have had cancer. This will determine if I need radiation on both sides or not. I also managed to get an appointment at Women's College Hospital on the same day (save an extra trip to TO) for the genetic study. It will be a busy day but I will be glad to get it over with.
Thank you to everyone for your continued prayers and support. You are awesome!

We must shift our interest from the seen to the unseen. For the
great unseen Reality is God.
-- A.W. Tozer

Last Chemo Wednesday!

2010-12-01T00:17:00.000-05:00

Yes, my last chemo is Wednesday and I get to ring the bell!! I can hardly believe it. After 8 more self injections at home I will officially be needle free for awhile and my body is going to be thanking me for that.
This paclitaxel has a cumulative effect which is catching up with me. I am tired and 4-5 days after treatment you feel like you have been run over by a Mac truck. I have slept a few days all day. Yes everyone leaves in the morning and I go back to sleep and they come home and I am still in bed!! It doesn't help that my hemoglobin is low again...I kinda slacked off after getting it up the time before by eating a lot of red meat. These last 2 weeks I think I have had red meat everyday with help from David! Tomorrow I will find out what my level is.
So just to add a twist to everything my oncologist whom I saw yesterday has now decided that something needs to be done with the CT scan (done in August) that showed an enlarged lymph node. The MRI was negative but was also done after 4 chemos were completed. Dr. M. is not sure what to do so she is thinking of sending me to an oncology surgeon at Princess Margaret to have him decide . This needs to done in December if possible before radiation starts!! I never realized before how much cancer is NOT an exact science but I am learning.

If I didn't have spiritual faith, I would be a pessimist. But
I'm an optimist. I've read the last page in the Bible. It's all
going to turn out all right.
-- Billy Graham

Only 2 chemo left!!

2010-11-16T14:44:00.000-05:00

So today I am "normal". Normal in the sense that I have not had chemo for 13 days and I have not had to inject myself today and I feel better. Not "normal" in the sense that I can't just go out and run but I can function pretty well. The feet and hands are starting to feel the cumulative effects of the paclitaxel, so much for the ice mitts and elevation.. but I will keep trying them! All my hair has not fallen out and I still have most of my eyebrows and eyelashes and I plan on keeping it that way. Funny thing with this chemo, you're not scheduled for your next round until you feel almost better. Good thing because I would not go back feeling how I do after it, never. But by the time the next round comes your mind tricks you into thinking it wasn't that bad (yes your mind does play mind games and it is a good thing!). I have been counting down since the beginning so after tomorrow I will only have 1 left, I can hardly wait!

If God were small enough to be understood, He would not be big
enough to be worshiped.
-- Evelyn Underhill

New Chemo

2010-11-01T21:13:00.000-04:00

So I had the new chemo (paclitaxel) almost 2 weeks ago. This one is much better with the side effects. Almost no nausea and no vomiting, yes!!! I did keep my feet and hands elevated for 2 days and I wore the ice mitts. I have had a bit of tingling but nothing else. I'm not sure if it helped but it is worth a try to prevent neuropathy.
My hemoglobin is down and I need to get it up or else another injection so I have been eating red meat every day. Wednesday I will find out if I have been able to maintain or even increase my hemoglobin.
I called about the results of the MRI and the nurse told me it showed nothing, I am so thankful :)
A great big thank you to everyone for all your prayers, they are much appreciated.

God is good, all the time.
All the time, God is good.

MRI

2010-10-19T22:34:00.000-04:00

Friday I had an MRI on my left side to see if there is actually anything wrong where the CT scanned showed something. I haven't heard anything yet which might be good! I felt so sorry for the elderly lady ahead of me. They kept asking her to hold her breath so they could get a good image. I started trying to hold my breath as long as they were asking her and I couldn't do it (even with my asthma I should be able to). After more than 20 tries they said they would have to go with what they had. So they wheel the woman out and guess what they do next? They reattach her oxygen!! No wonder she couldn't hold her breath!!
I am actually feeling quite good now, just in time for my new chemo tomorrow!! At least I won't go in feeling sick but coming out may be a different story. This new chemo is paclitaxel and the main side effect to be concerned about is peripheral neuropathy. So I have researched it and there is a 64% chance of getting it. So more research and I ask the doctor about it. The GGH has these ice mitts (that no patient at the hospital has ever used) to prevent circulation to the fingers which in turn should prevent drug leakage out of the very small blood vessels (capillaries) in the hands (and also feet). I am going to try it. I am also planning on coming home and not using my hands and feet very much for approx 50 hours ( 5 half-lives of the drug). This is an experiment but well worth it I feel. Some articles even state no washing dishes, no chopping etc which I am just fine with! I have done all the laundry and cleaned the house up (something I am learning to do the day before chemo because after that it is all done hill for a few days). Friends are thankfully bringing meals and I can rest!

As for God, his way is perfect; the word of the Lord is
flawless. He is a shield for all who take refuge in him.
-- Psalm 18:30

4th Chemo

2010-10-07T14:56:00.000-04:00

Yesterday I had my 4th chemo and my last dose of AC. Next time new drugs!(with possibly worse side effects).
The line went in after 2 attempts (I will now remember to never let them try my hand...it doesn't work). I felt okay, except for the headache, until late afternoon. I had to take my medication with food so C brought me water and a plain white dinner roll. One bite and instantaneous vomiting on the bed (but in a green bag). After 4 bouts I made it to the washroom to continue. A came home right in the middle of it and Q slept through it all. The dog however took advantage of the situation and scarfed down the dinner roll while I was in the washroom! Not that I wanted it.
Today I feel better and have managed to eat some toast. I did not get to enjoy the meals that were brought yesterday for us but the rest of the family tells me they were great!

On days when life is difficult and I feel overwhelmed, as I do
fairly often, it helps to remember in my prayers that all God
requires of me is to trust Him and be His friend. I find I can
do that.
-- Bruce Larson

Third Round

2010-10-02T19:07:00.000-04:00

So the third round of chemo knocked me out for a bit. I basically just slept and avoided food for awhile. I am now almost back to normal (only a 2 hour nap today!) and ready for number 4 on Wednesday. I'm still not that fond of food but I am sure that will change when this is all over.
I managed to learn more about inflammatory breast cancer (IBC) from a fellow survivor's posted video on facebook. Believe it or not but this cancer only takes a few weeks to develop and is very aggressive. So basically I was probably cancer free 3 months ago. Amazing how things change so quickly. I am fortunate in that I was detected early enough to be Stage 3b. I will fight the good fight.

I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me.

Galatians 2:20

Falling Leaves

2010-09-18T22:30:00.000-04:00

I just want to say a great big thank you to all of you who came out today to support me. The sea of purple was amazing. We truly have great friends. Thanks to John and Joan for organizing the "purple" and all the Guelph runners for the meals and support. You all incredibly kind and thoughtful people. Thanks also to my co-workers from Kitchener who surprised me and ran and cheered.

A cheerful heart is good medicine.
Proverbs 17:22

Sunnybrook

2010-09-15T18:39:00.000-04:00

Today I drove myself to Sunnybrook to get a second opinion and to make sure from now on I get the proper treatment (mastectomy first was not the correct treatment). While my 10 am appointment finished at 1 pm with long waits I am very glad I went. First of all I am glad to be receiving treatment in Guelph...much more personalized and no traffic to contend with!! Second of all the appointment afforded me 2 new opportunities and keeps me in the loop for further trials with triple negative cancer. I am going to be able to be in a study a Women's College Hospital with BRCA gene testing for triple negative. Currently I do not qualify for this test in Ontario because I have no relatives with breast or ovarian cancer. The test is close to $4000 but now I get it free. There is currently a 10% chance of being positive for it with triple negative. I am praying I will be one of the 90% who are negative for the sake of our daughters.
The oncologist is also suggesting an MRI of the non-cancer side because the CT scan showed something in the lymph node and it is still enlarged. This was not previously offered to me and I was told the ultrasound showed nothing but no one could explain why.
Sunnybrook is going to be keeping me in the loop for further trials on triple negative which I am happy about!

Look to the Lord and his strength; seek his face always

Psalm 105:4

Head Shaven

2010-09-11T22:30:00.000-04:00

On Wednesday my Mom took me to my second chemo, the first at the Guelph General Hospital. It took 3 tries to get a line in but the nurses were wonderful. I did not feel well afterwards and later vomited. Not the best day. Yesterday my hair started really falling out and I let C give me a short haircut. Only a few tears when I realized that this is actually happening to me. I don't want to look like a cancer patient but I don't think there is any way out of this! Today David and I went freecycling and I could feel the wind on my head, something I never felt before. Tonight D shaved my head and I am starting to get used to this. I have decided I really don't like my wig (named Daisy) because she looks too poofy but she was the least poofiest of them all! I may just have to go the bald route, should cut down on wind drag when I get back to running.

Kindness is the oil that takes friction out of life.
-- Author Unknown

Infection

2010-09-07T15:45:00.000-04:00

Today Q started Grade 12, A started her 8 month co-op placement in Kitchener and C started her co-op in Elora. Today I also saw my surgeon for my post-op appointment. The infection that I thought I had but the doctor said I didn't have but David said I did have I now do have! I have started on a 1 week course of antibiotics which will hopefully clear up the infection. If it doesn't clear up the surgeon said he will have to open it up which could possibly mean delaying chemo.
I also met with my radiation oncologist who told me I will have 5 weeks of radiation Monday to Friday starting 1 month after chemo is done. I also saw where I will have chemo tomorrow at the Guelph General Hospital.
On a personal note I want to say that the Guelph Runners are amazing! Thank you so much for the meals and for all of you who helped David with our Forest Street house on Saturday...it does make a difference. Also thank you to all who have brought food, flowers and are praying for us. It is so much appreciated!

Today is a most unusual day, because we have never lived it before; we will never live it again; it is the only day we have. William Arthur Ward

Day 10

2010-09-03T20:06:00.000-04:00

Today is day 10 of my first chemo cycle. I injected myself with my last dose of Neupogen (for this cycle) as my ever faithful cockapoo Zech watches. He hasn't missed an injection yet! Today my hair is technically supposed to start falling out but so far nothing has happened. It's not that I am complaining but I would like to see some evidence that the drugs are doing their job! I will ask the oncologist on Tuesday if still no hair loss.
I now get to enjoy the next 3 days without a single needle being put into my body and I am happy about that!

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
Psalm 91:1

Run Around

2010-08-31T17:59:00.000-04:00

Today was run around day. Last night David noticed something oozing out of my incision. He also found a stitch. There were only to be staples at the site or so we were told. The homecare nurse came and inspected my technique for injecting myself and said it was fine. I showed her the incision and she said it was hot and she thought it was infected and yes there was a stitch left there. I called my doctor and was told I could come right away or wait until tomorrow. The nurse had suggested I get in right away. So I head to the doctor to wait and wait and wait. Finally I tell them I am on chemo and I don't want to wait in a waiting room full of sick people. They escort me to one of the examining rooms. I wait. Then they decide they need that room and send me to another room. By this time I have had it!!! I let them know what I think of the health care system while having a mini-breakdown. My exceptionally good doctor comes in and is very kind. She says she understands and that I have a right to be angry but I still feel badly. After looking at the incision she says it is not infected and that the stitch is a dissolvable stitch but the part that is exposed won't dissolve so she cuts it short. This is good news but why didn't the surgeon tell me, or the nurse who removed all the staples or why didn't the homecare nurses know this? In my fit of anger I also told the doctor I did not appreciated the homecares nurses that reeked of cigarette smoke or the fact that a second nurse tried to come & give me an injection on the day I already had one (imagine if I was a senior and was unable to remember if I had my injection?) Needless to say the health care system isn't perfect and I should be thankful for what they have done for me so far. For those of you reading this with elderly parents or children or yourself make sure you keep track of everything and be in charge because mistakes will happen and you need to be your own advocate!!

The Lord gets his best soldiers out of the highlands of
affliction.

-- Charles H. Spurgeon

Neupogen Injections

2010-08-30T12:50:00.000-04:00

6 days since I have had my first chemo and I am feeling pretty good, all things considered. I started Neuopogen injections on Friday and I will receive them for days 3-10 after each chemo. The neupogen is the expensive drug (approx $16,000 total) to help stimulate the growth of neutrophils (a type of white blood cell) to fight against infection. Here in Ontario the government only wants to pay for it if your white blood cells become too low. Because I am having dose-dense chemo my oncologist applied for special authorization to get it covered and to start it before my white cells become too low. Thankfully we did get it covered.
I am now learning how to inject myself with it rather than waiting on someone to come every day to inject it. A few more days and I will be a pro at it!

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12

First Chemo

2010-08-25T19:04:00.000-04:00

Today I had my first chemo. The only painful part was the pain David and I felt for the woman next to us. They couldn't find a vein and told her she might not even be able to get her chemo today :(
As for myself the injections went as planned. First dexamethasone, then doxorubicin, and lastly cyclophosphamide. Only took about 2 hours. I will be excreting the one drug for up to 3 days so I have to make sure I double flush!! No worries, I am only going to use my "private ensuite".
Only experiencing one side effect...a headache...but that could also be family induced. C & A officially moved home today (with the help of my parents) with ALL their stuff but I am so blessed to have them here with me at this time.

The stars may fall, but God's promises will stand and be
fulfilled.

-- J. I. Packer

Triple Negative Breast Cancer

2010-08-24T19:50:00.000-04:00

Injected with another radioactive substance today. The MUGA scan is designed to evaluate how well my heart is functioning. This is a baseline because the one chemo drug is cardiotoxic. The test didn't hurt but it does make you wonder how much radioactive stuff can they inject you with before causing damage.
Saw my oncologist today and was told the ultrasound didn't show any cancer in the other breast which is good. The bad news is I have triple negative breast cancer. Only about 10-20% of all breast cancers are triple negative and of course this comes with a poorer prognosis. So I guess that makes me very rare!!
The good news is my $16,000 additional drug to help prevent neutropenia is covered!

Jesus replied, "What is impossible with men is possible with
God."
Luke 18:27

Another Test & Wig Shopping

2010-08-23T22:12:00.000-04:00

Well, not exactly how I planned on spending our 24th wedding anniversary but it was still good.
Up bright & early to make an 8am ultrasound appointment. After waiting quite some time they tell me they can't read the cd for the mammogram from the last place!! What, aren't they standardized in Ontario?! And I get a lecture that I should be going to the same place all the time...well I would have if you weren't going to make me wait 3 weeks (and be full of more cancer)!!! So, I get the ultrasound and another mammogram and apparently I don't need a biopsy.
Wig shopping with Courtney and Ashton in the afternoon. A woman right around the corner from us actually sells them out of her house. I'm really not interested in taking a lot of time but we find one that we like so she orders the colour for us. Should be available in 2 weeks, I hope so because they say your hair starts falling out 10 days after chemo & chemo starts tomorrow!!
Ashton & Courtney makes us a nice anniversary dinner and then we go see a movie.

Pray, and let God worry.
-Martin Luther

Some Background Info

2010-08-20T15:46:00.001-04:00

I have decided to start this blog for anyone with inflammatory breast cancer and for anyone interested in what is going on in our lives . Just a warning...I am not a writer nor will I ever be!
Clearly I should have started this sooner but here is the background info.
July 14/10 I woke up with a small rash on my breast and thought it very strange...not itchy or irritated. The next day I woke up and the rash was slightly bigger but something told me this was not right so I googled it and figured I had 2 possible diagnosis. I started looking for a thermometer & I couldn't find one. I go to work and buy a thermometer and decide I do not have a fever. That leaves only 1 possible diagnosis...inflammatory breast cancer. My doctor is on vacation but she is in a group of docs so I go to the after hour clinic. The nice doctor there orders a mammogram & ultrasound but thinks the rash is really nothing. The next day I go to work & call for an appointment...the soonest is August 18!!! I ask for something sooner but they say no, so I ask if there is any other place I can go to get in earlier and they say probably not & that the hospital likely has the same waiting time. After getting off the phone I google for places and after a few phone calls I find Credit Valley Imaging can get me in next Wednesday...yes!!!
Each day the rash is getting bigger and my breast is growing and I know nothing can be done without the mammogram & ultrasound. Wednesday I go for the tests and the technician is very caring & understanding & puts a rush on it for the radiologist. Wednesday afternoon at the doctor's office I am told that the radiologist recommended a biopsy. Now to find a competent, available surgeon during the summer!! I get an appointment for next Tuesday July 27/10.
Dr. P is a nice doctor who immediately diagnoses what I already know...inflammatory breast cancer. I of course start crying because this is the first time I actually hear the diagnosis made. It is one thing to think you have the cancer but quite another to actually hear the sentence. Before I know it I have consented to a modified radical mastectomy for Thursday August 5. The problem is you can't just take someone's breast off without pathology thus the wait. I have a punch skin biopsy done that day before Dr. P heads to surgery. The next day I have a core biopsy done. Neither were painful considering what I am headed into. Results may be ready by Friday at the earliest but probably not until Tuesday because Monday is a holiday!! Dr. P's next OR time is Thursday and I get the first surgery of the day 8 am. I feel sorry for the person who was scheduled for elective surgery at that time and got bumped due to me. Now I know for the future...if you have elective surgery and get bumped just be thankful you are not the other person!!
Surgery goes well and I am given a morphine pain pump (not the usual I am told). I have severe pain in my right arm probably due to the nodes being taken out. David encourages me to use the pain medication but I am not really into it. It makes you light headed. It's funny because you think being a pharmacist I would be more into drugs but I am not!!
Overnight in the hospital and then home. The drains really suck and hurt but I finally get one out on Sunday and the next Tuesday. I still can't have a shower because the skin has to heal from the drains. Finally I get an okay to shower Friday night!!!
August 16th Grand River Regional Cancer Centre appointment with Dr. M. Pathology results show grade III tumour (the worst), 11 cm in greatest dimension and 3/13 lymph nodes with metastatic carcinoma. Stage ??? more tests to follow. Margins uninvolved with invasive carinoma :)
The plan is chemo to start next week. It will be aggressive therapy every 2 weeks instead of every 3 weeks for 8 treatments. Yes, I will be done before Christmas!!
For those of you reading this with inflammatory breast cancer...the mammogram was normal but not the ultrasound...push for the ultrasound & a biospy.
Wednesday August 18th I spend at Grand River Hospital. First I get a CAT scan and then head to nuclear medicine for a whole body bone scan. They inject you with a radioactive substance & then you come back 3 hours later for the 30 minute scan. No problem and no pain!!
I promise this will be my longest post...just giving you background info

Those who hope in the Lord will renew their strength. They will
soar on wings like eagles; they will run and not grow weary, they
will walk and will not be faint.
-- Isaiah 40:31

More Tests

2010-08-20T15:37:00.014-04:00

We were woken up this morning at 8:15am by my oncologist. The bone scan was normal but the CT scanned showed something in the other breast. Yes, I did ask for both to be removed but the left was considered elective surgery and would have to wait. They managed to get me an emergency ultrasound at 8 am Monday morning! The good news is that nothing else showed up so we could just chop it off too & theoretically I could be cancer free!
I had my 29 staples removed today and the nurse said it was healing nicely. I still have some numbness which should eventually go away. No weight lifting for awhile she said.
Managed to pick out a cross body purse in a record time of less than a minute. Supposedly they are better for your back etc & now that I can't use the right side I decided I needed one.
David told me last night I should try to gain ten pounds just to keep ahead of the predicted weight loss!! Why is it when this opportunity arises I really don't feel like eating? Funny the way the mind and body work.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11