Tuesday, 21 November 2017

 

 "The Road Back to Hell"

 This is the bittersweet story of growing up in an extremely dysfunctional home in the 1950's and 1960's. As the oldest child of my biological mother, Bonnie, and my adoptive father, Stew, I was the only daughter who benefited from the strong love my parents shared during the early years of their marriage. Shortly after the birth of my first sibling, Judy, their marriage started to crumble.  

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Friday, 27 October 2017 18:48

Let the Treatments Begin!

This is part two of Heather's story of her fight again Triple Negative Breast Cancer. As I pointed out last week, Heather is a fighter and an openly frank person. Her step-by-step details about her surgery and treatments helps the reader have a better understanding of what a cancer patient sometimes has to endure to become a survivor. I applaud her honesty in describing her feelings.  

I had my breast and brain MRI on June 12. Kevin went with me on June 16 to Magee Women's Hospital to see the surgeon for the first time.  It had been six- weeks since my diagnosis, and I was beginning to panic. Most women who are diagnosed with Triple Negative Breast Cancer start chemo within two-weeks of diagnosis.  When I met with the Dr. Snyder, the surgeon, she told me the brain MRI was clear and the breast MRI showed the tumor to be a little bigger at 1.7 cm.  The breast MRI also mapped out my lymph nodes for surgery.  The original swollen lymph node that they biopsied did not show up on any of the scans, so she sent me to radiology to have her best girls do another ultrasound, and possibly a biopsy. The girls looked for a half-hour and reported that they did not find a swollen node; therefore, they had nothing to biopsy.

Dr. Snyder explained she would do sentinel lymph node mapping during surgery, start at the lymph node closest to the tumor, and remove any that seemed suspicious to test for cancer.  Before sending me to see Dr. Anderson, my oncologist at Magee, she told me I needed to undergo six- months of aggressive chemo before surgery could be performed. This confirmed everything I had read about Triple Negative― chemo is done first. 

The following week, when I went back to see Dr. Brown, my oncologist in DuBois, he was not on the same page.  He said he wanted the tumor out in case my liver could not handle the chemo.  He did not want to give me the stronger chemo if there was not any cancer in my lymph nodes, and the only way to tell was to surgically remove the nodes. He emphatically stated he would not give the AC chemo in DuBois.  AC chemo is a combination of Adriamycin, nicknamed "Red Devil" chemo, and Cytoxan.  Adriamycin is one of the most toxic chemotherapy drugs there are.  You are only allowed four doses in a lifetime.  Dr. Brown felt I was at high risk for liver failure and heart damage. If I went into liver failure, there was nothing they could do to save me.  He said my first couple of doses needed to be given at Magee Women's Hospital, possibly in ICU over night, to see how I reacted to it.  He told me he would call the surgeon at Magee and get back to me the next day. I told him at this point just do something.  It had been almost two-months since my diagnosis and the longer they did nothing, the more I stressed. 

I got a call early the next morning with news from Dr. Snyder, telling me that she had spent three hours on the phone with Dr. Brown in DuBois, discussing my case. Dr. Snyder had also conference called the top three oncologists at Magee Women's Hospital to discuss my case. They had all agreed with the Dr. Brown― because I was still considered Stage 1 (my tumor was under 2 cm and the lymph node biopsy was negative) they wanted it surgically removed before it spread. After that, they would administer the chemo, but it had to be done at Magee Women's Hospital. My surgery was scheduled for two weeks later. I wanted a double mastectomy, but the surgeon insisted on the lumpectomy because the heal time was quicker and she wanted me to start chemo two-weeks after surgery.  She agreed to do the double mastectomy after I finished with chemo, if I still wanted it done.  Mastectomy is recommended for Triple Negative since it is so aggressive.  So the plan was to do the lumpectomy first, take two-weeks to heal, and then essentially take six-months of aggressive chemo.  During the chemo treatments, I would be given four doses of AC once every three weeks, and Taxol once a week for 12 weeks.  We would follow-up the chemo treatments with the double mastectomy or radiation treatment.   

As the days went by leading-up to surgery and chemo, I became more stressed and anxious.  Every thought imaginable was running through my head.  I could not believe how fast my life had changed.  I just wanted things to go back to the way they were before.  It made all the little things that I used to stress and worry about seem so stupid.  A few days before my surgery, I received a package in the mail from Lisa's Lady Bugs.  It's an organization in Punxsutawney to which my cousin Tina had submitted my name. They sent me a beautiful blanket to take when I went to chemotherapy and $250.00 in Sheetz gift cards for gas to drive back and forth to Pittsburgh and DuBois for treatments. I was so touched. I held the blanket and cried while reading the story of how the charity got started. Lisa was a Triple Negative Breast Cancer patient who passed away at a young age, as so many do. Her sister and other volunteers raised money to send these packages to all types of cancer patients. I take that blanket with me whenever I go to every doctor's appointment. I cannot begin to tell you how much the gas cards have helped. Lisa's Lady Bugs is a great charity to donate to because they directly help local cancer patients.    

Kevin, my mom and my stepdad went with me on July 6 when I finally had my surgery. Except for getting my pain under control, everything went well. Because of the problem with the pain, I was not released until about 8:00 pm.  After surgery, Dr. Snyder talked with Kevin and told him she had removed six lymph nodes and removed the tumor but we would have to wait a week for the pathology report to come back to see if they got it all, and if the lymph nodes were clear.  She said when I call you; all you want to hear me say is clear margins and negative lymph nodes. Kevin got a hotel room next to the hospital just in case there was an emergency. The doctors had recommended doing this for surgery and each new chemo treatment. Kevin helped me into the room so I could lie down.  I woke-up around midnight in pain because the meds were wearing off from surgery.  Kevin was there every step of the way to give me meds and ice packs and to help me get changed.  I do not know what I would do without him or my kids.  We drove home the next day and I stayed with Mom and my stepdad, Randy the next two nights because Kevin had to work and I couldn't have the dogs jumping on me.  The pain got better each day.  My breast only hurt the first night but under my arm where they removed lymph nodes was pretty sore for about a week.  Kevin and the kids took care of everything so I could rest.   

As the days became closer to starting chemo, the more afraid I became. We met with my oncologist, Dr. Anderson at Magee on July 27, a week and a half after surgery. He was ready to start chemo the following week if the surgeon cleared me.  Dr. Anderson is one of the best in the United States for breast cancer and I was extremely grateful for that, but I was very nervous about the conflicting opinions between the DuBois and Pittsburgh Oncologists.  The Oncologist at Magee still wanted to give me the AC Red Devil chemo treatment. Because he did not seem as concerned with the liver failure, he decided not to admit me into the hospital. Instead, he recommended we get a hotel room close by for my first dose.  The AC Red Devil chemo can cause liver failure, permanent heart damage or failure, nausea, shortness of breath, complete hair loss, SVT's, heart arrhythmias, and extreme fatigue, nail loss, and a long list of other complications. Dr. Anderson explained they would check my liver, do a baseline EKG, and an Echocardiogram on my heart to see if it was safe to proceed.  He also emphasized that heart damage can occur up to eight years after this chemo has been administered.  So the plan remained four AC treatments, 12 Taxol treatments, and then surgery again.  We met with the surgeon the same afternoon.  Dr. Snyder told me the good news was that we were all hoping for clear margins and negative lymph nodes.  The bad news was that aggressive chemo still needed to be done because cancer can spread through the blood without being in the lymph nodes and the chemo treatments can take care of anything that may have gotten out into the blood.  She said without it, I had a 35% chance of recurrence locally or that it could spread to other organs.  If I had the chemo, it would take the chance of recurrence down to around 15%.  The other bad news was that the tumor was larger at the time of surgery.  It had grown to 2.8 cm in the couple of months while they were deciding what to do first.  This took me from Stage 1 to Stage 2A.   

The week leading up to chemo, I was an emotional wreck yet trying to stay strong for my children and not let it show.  I would usually breakdown late at night with Kevin.  I had one doctor telling me the chemo could kill me and another telling me if I did not do it the cancer would kill me.  Everything ran through my head.  I did not know if I should write "Goodbye" letters to my husband and kids just in case something went wrong.  I have never been that afraid of anything in my life and let me tell you, I have been through some serious shit in my forty years.  With all that was going on, we still celebrated my 40th birthday the week before starting chemo.  Kevin took me out for the night.  I had a hard time keeping it together wondering if that would be the last birthday I would get to spend with him and my kids.  I remember thinking at the beginning, "Wow, I'm turning 40 this year. I’m getting old!"  And then I got diagnosed and I thought, "Wow!  I am much too young for this".  40 didn’t seem so old anymore. 

On August 3, the day of my first Red Devil chemo, I cried as I told my kids goodbye, and I cried most of the way to Pittsburgh. Kevin would reach over, grab my hand, and tell me everything was going to be okay.  I think the anticipation of the chemo and not knowing what was going to happen to me was the worst part.  We got to the hospital and met with Dr. Anderson. He told me they would give me nausea medications and steroids to take for the first three days to help with the side effects. He said to expect weight gain from the steroids, and to expect complete hair loss within thirteen 13 days of the treatment. Then they did blood work to check my blood counts and off to the chemo room we went.  When we got into the room, I met a girl about thirty who had the same type of cancer as me and during our conversation; we discovered we had a lot in common.  We both have Boston Terriers, we were both mothers, and we were both fairly young. She was one infusion ahead of me, and she kept my mind occupied by sharing stories that helped me from crying and becoming upset. The infusion took two hours. The nurses brought us food and drinks. They also brought around hats and earrings that people make and donate.  They gave me a voucher for $400 off a wig at a local wig boutique.  

After the treatment, Kevin and I went to the hotel. I became extremely tired instantly so I decided to lie down. I woke-up around midnight with a horrible headache, and I was sick to my stomach, and dizzy.  Kevin checked my temperature because the doctors stressed that if a fever gets to 100.5 at anytime while on chemo I have to go straight to the hospital.  I did not have a fever so I took my meds and went back to sleep.  When I got up the next morning, I felt fine.  I already had some strands of hair coming out so Kevin took me to the wig boutique before we went home.  He told me to pick out whatever I wanted.  Since I have had short hair, I went with a long, real-hair wig so I could curl or straighten it.  We drove home and hung out with the kids before bed. The next day we planned on going to the local Relay for Life and to the Hazen Flea Market.  Kevin took the clippers and buzzed my hair down to a #2-guard length.  I really didn't mind it super short.  I put on one of my scarves and away we went! I got a bit dizzy walking around in the hot sun but I think I was getting dehydrated. I won five gift baskets in the Chinese Auction at the Relay for Life. All and all, we had a nice day and I wasn't feeling too badly other than having some minor gastro issues and some mouth sores. The first and third weeks after chemo were not too bad but the second week I became extremely tired and short of breath.  Overall, it was not too bad.  On the days I felt good, I could stay positive.  On the days I felt sick, my mind would drift to that dark place that I did not want to go.  I prayed that all four infusions would be tolerable. Unfortunately, that was not the case because they are accumulative.   

By August 20, my hair was falling out in clumps now. I was almost completely bald in the front. I waited for Kevin to go to sleep and I sat in front of the mirror crying while I shaved my head bald.  It was tough for a day or two but it did not take me long to say "hell with it, it's only hair".  I had my second AC chemo August 23. This one was more difficult than the first.  I was sick for about the first three days, and then I felt ok for the next seven days or so.  The last week before my third infusion, I became extremely tired and I couldn't stay awake for more than a half- hour at a time.  I also became extremely short of breath during this same five-day period, and I noticed my heart rate was through the roof beating at around 115 beats per minute at rest and going up as high as 145 by just walking to the bathroom.   

On September 13, when we went for the third round of AC, I was still having shortness of breath and a rapid heart rate, so they said no chemo today. They sent me for emergency EKG, Echocardiogram, and Lung CT to check for blood clots in my lungs and any heart damage.  Although the test results came back okay, they still cannot rule out some type of cardiac toxicity from the AC chemo. They had me return to Pittsburgh the following Thursday for the third infusion.  On September 21, the doctors insisted we go ahead with the third dose of AC, so I did.  This dose was the worst yet.  I was sick for about six days with this dose.  I had extreme nausea, constipation, and diarrhea and on the seventh day, we ended up in the ER at 2:00am because I got a fever of 102 degrees. They released me about five hours later. They told me my counts were okay and there was no sign of infection.  My entire body hurt for about four more days.  It hurt to touch my skin; it felt like my entire body was black and blue. The entire three weeks after this dose, my heart raced out of control. The cardiologist had me wear a heart monitor for 48 hours. My heart rate would go as low as 61 and as high as 145.  Again, the third week I had the shortness of breath and extreme fatigue.  The doctors cannot seem to tell me why it is causing the heart side effects.  I just hope it goes away after this chemo is done and it is not a permanent side- effect. 

I had my last AC chemo treatment on October 12.  I am two days out from my last infusion as I write this, so I can't tell you all how this one will affect me over the next three weeks.  I just pray it is not as bad as the last couple have been. I was thrown into early menopause after the third dose, and for the last week, it has been nothing but hot flashes and night sweats.  I don't know about any of you, but I would take my monthly friend over this shit any day!  As long as nothing major happens, I will move on to the weekly Taxol in three weeks.  Some patients say Taxol is a walk in the park compared to AC, but others say it is worse.  I have been told the side effects are more pain related and there is more fatigue but less sickness. The doctors told me you feel rough for about three or four out of seven days, and then it's time for your next dose. Taxol causes your fingernails and toenails to turn black and fall off. You can also experience bloody noses, internal bleeding, and blood clots.  It can also cause permanent neuropathy, which is like Diabetic Nerve Pain.  Usually once this starts to occur in patients, they either stop treatments or lower the dosage.   

Be sure to look for next week's post. It will be the final wrap-up of Heather's story.

 

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