My Journey to Healing

So that night I am released from the hospital and we get the pain killers, get into the hotel. I don't remember every detail. The anesthesia was very powerful. My blood pressure always gives me issues. Instead of going up due to stress, it drops and goes low.

 The hotel suite was beautiful. Livingroom, soaker tub in the bedroom. Dean was so tired, but he never failed to take care of me.

The Saint John Extra Mural visit the next morning before I can be released to go home. Then Sussex Extra Mural do home visits to clean my chest wound, drain exit area and wound from where they took out some nodes under my arm pit. Getting such a fresh wound area cleaned in such a sensitive area is nauseating. I miss my freedom already. Such a long winter, had lots of plans for this summer and fall...but such is life, I cannot dwell on "why me", why not me?

I spend part of the days feeling so good, sore throat, headache, over all achy. Not sure if it is the shock to my body or the painkillers. Of course as a mother my main concern is that life for the kids is stable.

Back to the beginning

This is where my journey begins. In the spring of 2014 I feel a lump in my left breast near my nipple. I do self exams due to my late neighbour Cindy hunt that found cancer several times by doing this, unfortunately she lost the battle in 2008 after 3 years of fighting. It ended up going to her brain. She left behind her 4 young children. So in 2008 I started to self exams- found lumps but was told I have fibrous beasts and many lumps- these ones where just nothing. Fast forward to 2014. The lump I felt was big and when at the gym when I was doing chest presses and could really feel the pressure in my chest. I waiting 2 months to make sure it didn't change with my cycles. It didn't. Off to the doctor on April 24. He said better get it checked out but doesn't feel irregular. Then off to the breast clinic at st. Josephs on May 7 th. Went to get a mammogram and always get followed up my an ultrasound due to breast density. While in the ultrasound room the doctor asked my if the lump had gotten smaller cause it had a hard top on it which was a sign that it could be going away. I said no- he said you should probably get a biopsy- we can do it now to save you a trip back. I said sure...go to next photo...

Left Breast Core biopsy

So now I am laying on the table in the ultrasound room. They stick needles into my left breast to freeze it. Then comes the core needle biopsy using an ultrasound machine to guide the doctor to the tumour. The tumour is on the right side of my nipple- they insert a fine hollow tube into my right side and go threw that way. Then a large snap sound happens to suck a piece of tumour into the tube. I am not going to lie- this was painful and scary. I hope I never have to have one again! So after I was done they made me another appointment at the breast clinic but tell me no matter what the results I have to make it to this appointment and the appointment with my family doctor who will get the results first and call me in. It seemed like time went really slowly after that. I was 90% sure it wouldn't be cancer. I had big plans for 2014- volunteering at the food bank, online courses, traveling...I was on track with  eating healthy, I was going to the gym, walking, swimming...at the same time I was dealing with James broken arm and getting him assessed for a learning disability. After my biopsy we had to go talk to James doctor for our initial meeting. Trying to keep my mind focused. It was definitely  a time of changes...how much change I couldn't of guessed....

Results

So at this point I have had a biopsy, not sure what was going on. After the weekend I get a call Monday May 12 to go see my family doctor in a few days, may 15th to discuss the biopsy results. That was fast I thought, I never get in that quickly I thought to myself.  The day after I got the family doctor call we had to take James to see his doctor for his learning assessment - we decided to spend the rest of the day just the 3 of us. Dean, James and I at James favorite place in Saint John, Martello tower. It was a really nice afternoon, but a little tinge of concern was in my heart. My husband Dean was scheduled to go back overseas to work his regular schedule of 1 month away/3 weeks home. So he was home and we get to the doctors for 9am, strange I thought, the secretary wouldn't look at me when she talked, she always did before...Dean and I go in and my doctor comes in and looks over the results. He said " unfortunately the results came back at positive for cancer". I was honestly waiting for him to say "kidding!!". He said you probably won't hear anything I am going to say to you now after hearing what I just told you. My husband held onto me and was weeping. I was in shock! Like really? Cancer? Me? My doctor said I would get a call from the breast clinic again to go talk to the breast surgeon. Now I was left with who do I call first, I have to tell my family, my friends, my CHILDREN!!! Things were suddenly moving very fast... 

The Masectomy

June 16 Monday - went to Kathy Woodhouse for more details on the what will happen around the time of the operation. The Delta Hotel chain offers breast cancer patients a night post op at the hotel free of charge. Its is called "Delta Oasis Program". Delta Brunswick Hotel in Saint John offers out of town patients a free hotel room as they should stay very close to the hospital for 24 hours after a mastectomy/ lumpectomy. It includes a free room for 2, dinner and breakfast for 2,and  valet parking. Extra Mural nurses(registered nurses that come to your home or out of hospital location for patient care) come and visit the next morning before you can be released.The discussion of the drain tube and pump occurred- gross! This freaked me out more than the operation! How much fluid needs to be in there, the chart I had to write down the amounts, how much Extra Mural would be coming to clean around the wounds etc. You end up with a large cut on your chest, a few inches cut under your arm to do  the sentinel lymph node biopsy  and a round cut on your side where the chest drain goes in through your ribs into the chest close to the sternum.You have many Nodes under your arms near your armpit I think as  many as 50. As few as 1-6 nodes are the first to receive drainage from your the area where your breast tumour is.

After my appointment with Kathy, I went to see Andrea, the physiotherapist. When you get a breast cut off your chest many nerves are taken with it and maybe muscle. This all effects you shoulder and arm movement after surgery. If you do not move your arm and exercise it you can get a frozen shoulder.At this appointment you are given a compression bra.

You need access at the front for bandage changing/wound cleaning and it is very binding. This is to help keep swelling down. When you get lymph nodes removed the lymphatic fluid has to reorganise its self because flow is interrupted. You have to be very careful not to get cuts or burns on this arm because of the risk of infection. " When lymph nodes are removed, lymph vessels that carry fluid from the arm to the rest of the body are also removed because they route through and are wrapped around the nodes. Removing lymph nodes and vessels changes the flow of lymph fluid in that side of the upper body. This makes it harder for fluid in the chest, breast, and arm to flow out of these areas. If the remaining lymph vessels cannot drain enough fluid from these areas, the excess fluid builds up and causes swelling, or lymphedema" See pic below- there is no cure for this once it happens. Sometimes you will see women wearing compression wraps on there arms to try to reduce the swelling.

My Mastectomy is booked for Thursday June 19th, Dean arrived home the day before. Everyone was relieved to be home together again, even though I was exhausted from so many appointments and Dean from so much travel and work. This kids went to one of my close friend and neighbour overnight and had a full day of activities to do.

Every step is just one thing you concentrate on and pray for. You cannot think to far ahead. Just get through the next step and consider it a victory. Mine was to get through the pre-op wait, then the operation, then to get out of the hospital to the hotel and then home.  

My appointment started at 12 noon. You get a pre-admission work up, blood work, It takes one hour for the surgery, a few hours post anaesthesia. .They check the sentinel nodes and do a biopsy and decide if a few are clear or if many have to be taken out because they find cancer there. Waiting is very hard. You have to focus on other things and not your fear, as you don't really know what will happen once they run the tests and open up your breast. I tried to focus on nature, trees, the wind, rivers. Finally I got into the actual surgery room. I remembering laying down, there was a bunch of nurses and my surgeon Dr.Scarth. They put 2 needles through my breast to place radioactive fluid into my chest so the doc can trace it to see where the fluid goes to check for cancer with a radioactive detector- it hurt so much- I don't understand why they don't do that after you go to sleep! They put the IV in and then put a mask on your face.After you are under, they inject blue die into your breast so that it will be easier to see your sentinel nodes during surgery.

The mask was  the last thing I remember. I woke up on the 3rd floor in recovery. The nurse said to me that Dr.Scarth wanted to make sure I knew that my nodes were clear of cancer. After a while I remember Scarth coming in smiling face telling me the same thing and that surgery went well and my iron was low so I was going to be extra tired. I remember they asked me if I was hungry and I said yes. A nurse named Brenda made me toast, I was so high I was eating it like I hadn't eaten in years and I said "this is the best toast I have ever had in my life!"as I stuffed it into my mouth lol! 

Before you can be let go they have to take you for a walk, check your vitals etc. The whole time I was walking around the ward I saw stars floating around my head- I felt light headed but my body felt heavy. I tried to fake feeling great. I got the clear to leave. Dean went ahead to get the truck, and the nurse took me to outside the hospital lobby. By the time we went down the elevator and the wobble hallways, I was truly ready to puke! So puke I did in the garbage can outside. Knowing this potential I couldn't believe the nurse did not carry barf bucket, bag or tissue paper. It was dark out and raining. Finally we were on our way to the Delta, but first we had to do pick up my pain killers, the hospital doesn't give you them to take with you. So we had to find a pharmacy, that was open. Ugh!!

Telling the kids

That day and night that we found out we called family and friends and I also went to the kids school to tell the principal my diagnosis and that the kids would not be going to school the next day. I had to pm my oldest son because he lives and works out in BC.  Unfortunately he was at work but took a break to talk to me on the phone. He is an introverted young man. Doesn't like to blubber about his fears or tears. Even though I haven't lived with him in years and we don't phone each other, I know my first born enough to know the tone in his voice. It is comforting to know that is in his 20's, had a nice girlfriend, works and is enjoying life. I don't know how I would of felt if it was still just him and I and he were little again. That would of been awful. But here I am married to his step father, and we have 2 young children. Sarah 10 and James 11. We acted as normal as we could and decided that the next day, Friday was going to be a day off if school, a day for just the 4 of us. I felt like I tornado had hit me, I felt so low but almost in zombie mode to get through the day. We sat at the dining room table and told them. They burst out in tears. It was so awful. We decided to go for an adventure that day and drive up riverside Albert. Was nice to stop in little villages and beaches along the way. Dean was still trying to figure out if my appointment with the surgeon the week coming was for chemo or a lumpectomy. We were so inexperienced and had no idea what was going on. The doctors are very careful in the beginning about what and how much they tell you. So dean had called the surgeon Dr. Scarth to try to find out his fast things were going to go because he had to leave Monday for a month. The secretary told him she would find out and call back. When she did call back I answered the cell phone- as Dean was driving. It was the doctor himself. He said yes it is cancer and you have to come in to go over the results more and " there are a few spots on your right breast that we are concerned about, so you have to come in and get more tests". Up until this point I hadn't lost it in front of my kids, well now I was crying quite hard. We were on a country road just up from Cape Enrage beach and Dean pulled over to get me out of the truck.

Getting over the shock

I was so upset after we got the call that I could maybe have cancer in my other breast. I didn't know all the in's and out's of breast cancer, but I knew that was a very very bad sign. I didn't want Dean to go to work, please don't leave me! All I knew at this point was going over results, getting a right breast mammogram and ultrasound and maybe a core biopsy AGAIN! I kept getting phone calls for appointments: DR.Scrath results Tuesday, May 20th, Mammogram Tuesday May 21. As the weekend progressed towards Monday(deans departure date), I was very sad and really in shock. I started to push the fear back into my mind and went into survival mode. Dean has to go to work, I will have days without him, like I have before. I have gone through 10 years of fibromyalgia, had a miscarriage alone, been up all night with a baby and a toddler alone, been a lonely only child, lived on my own for years...I can do THIS!! I am not really ALONE!! God is with me, my friends, family, my children...So Monday came and we got Dean back to work. James was extra loving and this was the day that I noticed Sarah was protecting her own heart...Dean, my best friend, my heart was there emotionally every step, letting me rest, feeding the kids, doing dishes, telling me we have to have faith, praying over me and telling me how grateful he was for me.To trust each other the way we do is so priceless.

Results

So here we are May 20th Tuesday- 8:45am. I meet with Dr.Scarth for the first time with his nurse. Has to feel the tumour again. Goes over the results. Which I have no idea what most of it means.Triple Negative? milk ducts, invasive...bla bla bla. I smiled with a brave face and let God guide me through a haze of medical terms. They through alot at you but yet not the full story, because really you are still in shock. I met my Navigator. Kathy Woodhouse, A nurse Case Manager Breast Health Program specially assigned to guide you through the cancer process, especially in the beginning. Very nice lady, She gave me lots of info. I started a binder to keep dates, appointments, and information. She said at this point there will be surgery, MRI, CATSCAN, lymph nodes checked, chemotherapy...but it was all still sort of up in the air, except the tests and surgery. A particular  sheet she gave me was about what was going on with my breast tumour. It was titled "Infiltrating Ductal Carcinoma" an invasive cancer that has grown through a duct wall. It accounts for 60% of all cases. She said that a cancer cell could be very small and not detected on my 2008 mammogram, usually when you get over a certain size they can estimate that it has been about 6 to 8 years in the making. I realized that I wasn't getting the mammogram that day and got the call I think to come back the next day Wednesday. So of course I go home start looking into what TRIPLE NEGATIVE means...

Triple Negative Breat Cancer

So I am at home and started to research, my form of control over the situation. Even though a cancer survivor and friend Almira told me its not a good idea. I kind of agreed after I read about what I had...Below are snippets from the internet. When they do a biaposy they take a sample of your cancer tumor to test it for receptors- they call the results the pathology report.

Receptors:  "to understand triple-negative breast cancer, it’s important to understand receptors, which are proteins found inside and on the surface of cells. These receptor proteins are the “eyes” and “ears” of the cells, receiving messages from substances in the bloodstream and then telling the cells what to do.

• Hormone receptors inside and on the surface of healthy breast cells receive messages from the hormones estrogen and progesterone. The hormones attach to the receptors and provide instructions that help the cells continue to grow and function well. Most, but not all, breast cancer cells also have these hormone receptors. Roughly 2 out of 3 women have breast cancer that tests positive for hormone receptors. 

• A smaller percentage of breast cancers — about 20-30% — have too many HER2 receptors. In normal, healthy breast cells, HER2 receptors receive signals that stimulate their growth. With too many HER2 receptors, however, breast cancer cells grow and divide too quickly. 

Hormonal therapies and HER2-targeted therapies work to interfere with the effects of hormones and HER2 on breast cancer, which can help slow or even stop the growth of breast cancer cells.
About 10-20% of breast cancers test negative for both hormone receptors and HER2 in the lab, which means they are triple-negative. Since hormones are not supporting its growth, the cancer is unlikely to respond to hormonal therapies

" Your pathology report may say that the breast cancer cells tested negative for estrogen receptors (ER-), progesterone receptors (PR-), and HER2 (HER2-). Testing negative for all three means the cancer is triple-negative.

These negative results mean that the growth of the cancer is not supported by the hormones estrogen and progesterone, nor by the presence of too many HER2 receptors. Therefore, triple-negative breast cancer does not respond to hormonal therapy (such as tamoxifen or aromatase inhibitors) or therapies that target HER2 receptors, such as Herceptin (chemical name: trastuzumab)."

..."In addition, triple-negative breast cancer: Tends to be more aggressive than other types of breast cancer. Studies have shown that triple-negative breast cancer is more likely to spread beyond the breast and more likely to recur (come back) after treatment. These risks appear to be greatest in the first few years after treatment. For example, a study of more than 1,600 women in Canada published in 2007 found that women with triple-negative breast cancer were at higher risk of having the cancer recur outside the breast — but only for the first 3 years. Other studies have reached similar conclusions. As years go by, the risks of the triple-negative breast cancer recurring become similar to those risk levels for other types of breast cancer."

Yup you have my attention now! stupid cancer!

"

Who can get it?: Anyone can get triple-negative breast cancer. However, researchers have found that it is more likely to affect:

• Younger people. Triple-negative breast cancer is more likely to occur before age 40 or 50, versus age 60 or older, which is more typical for other breast cancer types.
• African-American and Hispanic women. Triple-negative breast cancer most commonly affects African-American women, followed by Hispanic women. Asian women and non-Hispanic white women are less likely to develop this type of cancer. A study found that black women were 3 times more likely to develop triple-negative breast cancer than white women.
• People with a BRCA1 mutation. When people with an inherited BRCA1 mutation develop breast cancer, especially before age 50, it is usually found to be triple-negative.

A gene mutation?- well I am not sure, my mom was adopted and I don't know that much about my bio dads family...I will need to look into that further.

Right Breast Mammogram

So back to St. Josephs breast clinic again. Wednesday May 21st 10am. I am ready for this! Mammogram check, and ultrasound check. I start to pray in the waiting room.Go back for another ultrasound as the head doctor looks at the results on one screen and the ultrasound on another. He says yes there are about 5 cysts but not cancerous! which meant no biopsy! what a roller coaster. I was pretty much thinking I would be getting one or several that day. During these days I have been keeping life as normal as possible. Keeping the door open for any questions the kids may have and watching closely how they are doing. I continue to keep my emotions private. Take them top swimming, piano, family day at Catons Island Camp, appointments, what ever they normally would do.When at Catons Island they have this huge climbing wall, I was thinking about it the night before. You know I would love to do that wall but don't like heights. Why can't I do that wall?, it can't compare to being told I have cancer!. I might not have another chance  that wall,. So I did the wall! Anita and I did the darn Wall!!

Picked my mom up from the airport on Thursday May 22 for her to come and help me.  
School is almost over. June 6th is the last day for them. What great timing, thank you Lord! Get the call that my MRI, catscan, and bone scan. The dreaded MRI! which my mother in law calls the "coffin". I dread this- everyone says its so bad, all I know is I have to get a dye injected into me and lay on my stomach. Oh ya and one of Deans cousins had a bad reaction to the dye and got really sick from it! A few hours of tests on June 3rd Tuesday. I can do this!!

MRI and a crazy week

So it's now June and my MRI and other tests are booked for Tuesday at 10:15 AM. Marilee, my neighbour and dear friend, who recently lost her husband to ALS, took me in to the regional this time. I had a hard time sleeping the night before thinking about the "coffin" and the dye that I would be injected with and the fact that the heavy metals in my old tattoos could react to the MRI by burning. It was a long day but seriously nothing to fear. I went to get the contrast injected, that helps outline any abnormalities. For the breast MRI, I had to lay on my stomach with my with my breasts in a holder(see photo I found on the internet). I think it took 45 minutes, I am not sure, I just laid there and listened to the machine wiz and make some banging noises. I could hear the technician talking to me. I had to lay very still. And there seemed to be a blur of time.

A MRI is:  uses powerful magnetic forces and radio-frequency waves to make cross-sectional images of organs, tissues, bones and blood vessels. A computer turns the images into 3-dimensional pictures. An MRI of the breast is not routinely used to diagnose breast cancer, but may be done in certain situations to:

• find the primary tumour in the breast
  • MRI may be used if cancer is found in the axillary lymph nodes or if a woman has Paget disease of the nipple.
• find out the extent of cancer in the breast tissue (local disease)
  • MRI may be used when test results from physical examination, mammography or ultrasound are not clear.
• better examine an abnormality found on mammography
  • MRI may be used if the abnormality cannot be found with other tests, such as a clinical breast exam or breast ultrasound.
  • It may also be used if the abnormality can be seen from only one view of the results of a mammography.

After that I had to get dye injected into me into me for the CAT SCAN or CT scan.

A CT is:  "is an X-ray technique that gives doctors information about the body’s internal organs in 2-dimensional slices, or cross-sections. During a CT scan, you lie on a moving table and pass through a doughnut-shaped machine that takes X-rays of the body from many different angles. A computer puts these X-rays together to created detailed pictures of the inside of the body. Before the test, you need to have a contrast solution (dye) injected into your arm through an intravenous line."

CT scan was not problem. You lay on a bed and get pushed into another donut hole machine that open at both end and is thinner then an a MRI and it just has something in it that wizzes back and forth from side to side.

After that I was sent for a bone scan. A bone scan is: uses bone-seeking radioactive materials (radiopharmaceuticals) and a computer to create a picture of the bones. It is used to see if breast cancer has spread (metastasized) to the bones.

It has open sides and is more square than the MRI or the CT scan.

So that was that, got through the day. So somewhere along this crazy ride someone tells me that surgery with be in August, then June.The next day I met with Walter. I thought it was time enough to get the family burial plots chosen and paid for up on Kirkhill Cemetary. 2 people now that I know are up there. It is just across the road basically and has been there a long time. I wanted to do this years ago, but as usual it just didnt happen. Now, I thought was a great time to do this. Walter C. manages the plots. He said is there anyone you don't want to be next too? lol small town humour I guess! And I said no. He showed me the map. I chose our plots to be next to Marilee and her husband plot. 

Monday June 9th. The kids go on a school trip to Acadia Village. Mom goes with them. Since they will be gone all day, I have booked make up and hair session at Element 5 in Saint John. I get my make up done and then my hair straightened by a really nice lady from Columbia. Her sister died from breast cancer. It is amazing the stories from peoples hearts that you come across once you are open about having cancer. They did a wonderful job at the salon. I could not believe how straight my hair came out and it lasted for a few days.

The next day I go see breast surgeon Dr.Scarth- Tuesday June 10. He tells me all tests were clear. We go over everything as of this day and make plans for what is coming up. I agree to getting a skin sparing mastectomy, which will give me the option to get fat from my belly put into my chest after. At this point I am thinking all this happens at once. Operation and reconstruction. I tell him fake boobs are never an option for me. I will be getting a sentinel Lobe biopsy once they open me up. They will just check a few and if they show anything they will take lots out.

"A sentinel lymph node biopsy (SLNB) is the removal of the sentinel lymph node to see if it contains cancer. The sentinel lymph node is the first lymph node in a chain or cluster of lymph nodes that receives lymph fluid from the area around a tumour. Cancer cells will most likely spread to these lymph nodes. There may be more than one sentinel node, depending on the drainage route of the lymph vessels around the tumour. This test may also be called sentinel node biopsy or sentinel lymph node dissection (SLND)."

The surgeon injects a radioactive substance (radiotracer), a blue dye or both into the tissue around the tumour or into the area from where the tumour was removed.

• The radiotracer is injected anywhere from 1–16 hours before the surgical procedure.
• It takes about 5 minutes for the blue dye to reach the sentinel nodes, so the dye is often injected in the operating room just before the surgery.

The dye or radioactive substance is taken up by the lymph vessels. It travels along the lymph vessels draining the area around the cancer to the sentinel lymph node(s).

A special scanning device detects the radioactivity in the sentinel lymph node(s), or the surgeon looks for the lymph node(s) stained blue.

• Sometimes, the sentinel lymph node cannot be identified.
• If the sentinel lymph node is positive or if it cannot be identified, then more lymph nodes will need to be removed."

So along with all this info I was getting on what was the results and what was going to happen, it was on this day that I learned that my surgery has been moved up to June 19th, yes thats right, a week and a half from now! yup my head was spinning...across the hallway from Dr.Scarth, I go see Kathy Woodhouse again, my cancer navigator...