Spring Break-- from cancer

Johnny Jump-Ups on my front porch

Two years ago, on April 1st, my former oncologist called me with horrific news. My cancer had revealed itself for a third time. A month later I began having infusions every three weeks. One year later I had progression of my disease, so a new treatment with a drug called TDM-1 (Kadcyla) was started. My first scan after four infusions of this new drug showed it was working against my cancer. I had no evidence of active disease! It doesn't get any better than that. I still get infusions every three weeks with my 17th treatment of TDM-1 and my 34th treatment overall occurring almost two weeks ago.

Living with metastatic breast cancer is difficult. I probably think about my disease several times during every hour of the day. Every strange bump, every pain under my ribs, any chest tightness, and every headache immediately causes me to think about what this disease could be doing to me. I don’t want this disease to define me, but it does. It is no different than how motherhood, being married, loving learning, and attending to the needs and wants of my family defines me. Or, the way I love sunshine because of how it makes me feel, and how I love the way horses look when they run defines me. My opinions about the world define me and unfortunately so does my cancer.

I have learned to adjust to cancer's role in my life. Physically, I feel so good on some days it is hard to believe I have a terminal disease. On days I don’t get enough sleep, though, I am left with not enough energy to attend to my very long to-do list. Those are rough days.

Then there is the CAT scan that my timeline races toward. I can’t stop it. My days of grocery shopping, cleaning, picking-up my kids from college, driving them back, watching my youngest in dance and tennis class, and going to a party with my husband all leads me to that sleek white machine where I am told “Hold your Breath” and then “Breathe”. That machine will give evidence of continued treatment success or . . . not. I fear that machine. It is the source of my present anxiety. While my life ticks away that machine awaits my visit.

I had my last scan January 29th. Since I am accustomed to every three month scans my internal time clock has sparked anxiety. This time my scans are not until the first week of June because my oncologist agreed with me that we could have scans every four months instead of the usual three. So, I must somehow temper my anxiety while I wait for the first week of June. Then I will know whether life will continue as it has or whether a new path will be taken.

Azalea Festival Garden Party

Of course I cannot completely remove the knowledge of my condition from my mind, but there are moments where I notice I wasn't aware I had any thoughts of it at all. Last Friday was one of those times. My thoughts were focused on a garden full of vivid spring colors not adorned by real flowers, but by people. I went to an outdoor party and people watched for hours.

Azaleas in my yard

Wilmington North Carolina hosts a festival every spring. The name Azalea is attached to this festival. Every year the planners try to guess when the azalea flowers will be at their peak blooming time so the festival is surrounded by the beauty that these flowers bring. This year for the week of the festival, the flowers were just beginning to show their beauty. I don't think most people cared though, as long as the days of the festival did not include rain.

Party goers waiting for the celebrities to appear.

For those desiring it, the week of the festival is a time for parties--one party after another.

My husband’s employer donated money to the event this year. With that donation, he received tickets to an outdoor party. Tickets to the party we attended were $150 A PIECE!--crazy, I know.  Never could I part with that kind of money for plenty of liquor, a few celebrity sightings or to see the lovely landscape of Wilmington’s Airlie Garden. I was glad my husband’s company did or I would never have seen the spectacle of The Azalea Festival's Garden Party.

There were probably other celebrities, local and otherwise at this party, but the only two I recognized were the three-time beach volley ball Olympic Gold Medalist, Kerri Walsh Jennings (yes, she is super tall), and the US Congressman from NC, David Rouzer.

Summerall Guards

After the celebrities made their appearance, everyone was entertained by the Summerall Guards. They performed their well-rehearsed choreographed military movements. I later learned that being a part of this group is a high achievement for these military cadets. The only unusual part, was the humming of a drone  hovering over our heads. I hope it took some good pictures of these guards or perhaps the crowd if that was what it was there to do.

Before I arrived, I expected to see a lot of people around my age attempting to make business connections. They were there, but it was clear they were not in the mood for business conversations. As I people watched I was surprised at the many young people that were there. It seemed to me this party probably was more about seeing and being seen especially since everyone had preened their feathers and now were doing their mating dances. I saw people in short, short dresses and shoes with very high heels. Some of it was tasteful and some not.

I am not a fan of these shoes.

Nor, do I like these.

Men adorned 100% cotton light-blue striped Seersucker suits and suit jackets of solid blues and pinks. Several young men were brave enough to wear shorts instead of slacks. There were a few women in one piece pant outfits, too. The colors were wonderful with lots of corals, reds, blues and pinks. I truly appreciate how some people can wear giant decorated hats and not look ridiculous. This was Wilmington's mini Kentucky Derby without the horses.

As my husband and I walked around the garden, we could not help but notice the amount of liquor available--tents, tents and more tents of it with only one tent for food. I am not opposed to serving alcohol. I have enjoyed margaritas, toasted almonds, and wine many times in my life. What I didn’t expect to find was this: We stopped to greet some people that my husband knew, and almost immediately a man asked if we would like a Jello-shooter. “What!” I thought, “But, you must be close to sixty years old.” He then told the story of his wife making the Jello-shooters and how she had used several bottles of Vodka to create them. All I could think was feeling and getting old hurts. Why would anyone over 40 and especially over 50 want to drink shooters?

My husband and several co-workers

The day was a gorgeous day for a party. I now can put names to faces of the men my husband works with. Their wives accompanied them, so that was nice too. A beautiful, sunny day with the man that has given me everything--well almost--I ever wanted is a great day. And it was an even better day with a short but much needed spring break from thinking about cancer.

Greg and I on April 10, 2015

     

My Eyebrow Tattoos

Cancer takes so much . . .

My plastic surgeon who surgically placed the artificial breasts I now bear once said to me when I was stage 0, “I am glad you didn’t have to go through chemotherapy because women look so much older afterwards." Looking back, I think he should have refrained from saying that to me since there was no guarantee I would not have to have chemo one day. Now I know what he meant, unfortunately, about "looking older".

That was 10 years ago. I have had frequent visits from the chemotherapy drug Taxotere since that time. Although I am now 50, I do believe my treatments have made me look older than I would have if I had not had those visits.

Taxotere took my hair. After that treatment ended, my scalp hair returned. For reasons I am not sure of--except for possibly the chemo induced menopause--my eyebrows and eyelashes have been slow to return. As you can see from the picture below my eyebrow and eyelash hair are best described as nonexistent. It has been like this for almost two years.

One of my posts from a few weeks ago told the story of an offer made to me by an extremely nice woman. This woman is the owner of a hair removal business that also specializes in skin care and cosmetic tattooing.

Yesterday, I decided to take the plunge and let her do her magic.

I did it! I got a tattoo.

Well, not exactly.

Eyebrow tattoos, at least the kind I have, are not like body tattoos. The ink is plant-based. Many of the colors used in body tattoos have metals in the ink. Before I received my new brows I would wonder why each MRI technician always asked if I had any tattoos. Now I understand the reason for the question. MRI machines use magnets, so tattoos with metal in the ink don't mix well with those machines. The result, although rare, can be swelling or burning to the tattooed area. The images created can be unclear as well.

Body tattoos have another difference. They are done with a needle(s). Eyebrow tattoos are done with—well, something else.

When the session first began I cringed each time the tattooing instrument went across my skin despite the use of a numbing cream.

I asked, “What are you using--a razor?”

She said, “Yes.”

In which I responded, “It sure feels like a razor.”

I had no idea how the inking was done until she started the procedure. I didn’t ask because I assumed it would be with a needle. Instead, a razor cut very thin lines into my skin while ink filled the slits. Each individually inked-cut-line gives the illusion of hair.

The picture you are about to see is the beginning stages of my new face. These brows will heal and fade a little. It is my job to keep the area moist so the skin pushes out as little of the ink as possible. In 30 days, I will go in to have the final product perfected.

 

This is a lot better than the way it was done not too long ago. Eyebrow tattoos were done by filling in a desired shape with color. The new technique is a tremendous improvement.  

One interesting bit of trivia that I didn’t know I would ever use was used yesterday. I had learned that the left side of a person’s face is more animated than the right. For me, this is indeed fact. It is very hard to get eyebrows to be symmetrical when one eyebrow doesn’t cooperate. If I talked or smiled my left eyebrow would move into a new position. It was especially noticeable when I arrived home, looked in the mirror and tried to adjust to my new look.

Oh symmetry, my symmetry . . . where are you?

I do like having eyebrows again. My right one is my favorite. Can you tell that none of those lines are real hair? I hope that the lines can be tweaked so the left one looks more like the right one.

If my brows look shinny it is due to the Vaseline that must be applied and reapplied for 7 to 10 days so the area does not dry out. Once the skin is healed I will be able to get rid of the shine.

For any of you looking to have this procedure done, I encourage you. Mine are not exactly what I pictured beforehand, but overall it is close.

Now, what can I do about my eyelashes?  


Note:
I was told that the pain varies from person to person. For me, the pain caused me to grasp my hands tightly and scrunch up my toes. As time moved along, the pain lessened some but not completely. At least I wasn’t brought to tears.

** It has almost been a year since I had my eyebrows done. Unfortunately they have faded. Will I do it again? No. It didn't last long enough for me to spend the time it takes to have them done and to feel the that painful razor blade again. 

A Blogger's Goodbye Post

On March 1st, I checked my RSS feed to see if other bloggers that I follow had posted anything new. There I found a post from Lisa Boncheck Adams at www.lisabadams.com.  She was sending out an update concerning her recent health concerns. I read the words she wrote, “Things have gotten exponentially harder in last few weeks.” At that moment, I knew it was bad, really bad. A hot sensation grew from my chest and moved upward ending with a tingling in my sinuses. I struggled to see through my tears to read the rest of her post.

She had written in a post a few weeks earlier that fluid caused by the cancer in her liver was causing her abdomen to swell. She reported in this new post that the swelling was still an issue and had become more difficult to manage. To make draining the fluid easier, she explained, a catheter had been surgically inserted so she could drain the fluid herself at home.

She was suffering. I was suffering with her. Each day after the March 1st post I would check for new posts and news from her on Twitter. For days there was nothing, complete silence. I found myself feeling depressed. At times, I would start crying over something I had thought. I felt sadness for her, this person that I had followed since the beginning of my hell, but I felt sadness for me more. She confirmed my reality indirectly with her words that I too will follow in her footsteps.

At the end of her post she stated, “Still cannot walk—no change predicted in short order . . . For now that is all I have energy to update but should give you a sense of where things are. xo Lisa.”

Though I didn’t want to think it, somehow I knew her March 1st post would be the last words written by her on her blog. I wonder if she knew.

Since I began my blog in August of 2013, four (4) bloggers I followed have died--Lisa was one of them. Each had a unique personality and wrote what their personal experience with cancer was like. As life with cancer for them became more difficult, I expected a final post with words that told me they knew the end was near. I thought their last words would say “goodbye”. None of them did at least in the way I expected.

Jeanne Sather, The Assertive Cancer Patient, was the first blogger I followed to die. Her website has disappeared which is disappointing. I am thankful that I could read her words in the beginning days of my diagnosis because her years of living with metastatic Her 2 neu positive breast cancer gave me hope. I was surprised the day I found out she died because I didn’t realize how difficult her days had become. From her short posts, I knew she was moving into hospice but otherwise she seemed ok. I suppose I was a bit naïve at the time and should have known the end was near when she wrote about the final visit with her oncologist. The cancer had moved to her brain and there were no other treatment options. She wrote she was having trouble with accessing the internet in the hospice facility she had moved into. The last and only word she typed on her final blog post was “test”. The next post was an announcement of her death posted by her son. That was it.

As prolific a writer as she was, it was sad to me that “test” was her last word and her last post--a woman who planned her funeral and wrote her own obituary. How could “test” be her last word?

Jay Lake, at www.jaylake.com was a blogger/writer I discovered while looking at the blogs Ann Silberman of  www.butdoctorihatepink.com  followed. His cancer was colon, not breast. In April of 2014, I read Jay’s last post. He said, “I continue to be miserable.  . . . There’s a bunch of medical stuff going on, as usual. Don’t know where it leads, as usual. Will report more when there is more to report. For now, bleh.”

In May his caregiver and family member started posting about his condition during his enrollment and treatment in a clinical trial. Nothing was going well. He was having trouble sleeping and eating. Her last post said, “I think it is this right now that is breaking my heart the most, how this most social and gregarious man has been drained to the point where a simple conversation is exhausting."

His last post gave no indication that it would be his final post written by him. He may have had no idea he would deteriorate so quickly. He died on June 1, 2014.

I followed Terri, at www.gracefulwomanwarrior.com, because she was a Her 2 neu positive breast cancer patient like me. Before November of 2015, I did not get the sense she was near the end. But on November 15th, it was clear she was very sick. Still, I didn’t realize how sick. Her cancer had spread to her sternum, ribs, clavicle, pelvis, vertebra, spine, neck, around her gallbladder, and around her intestines. Fluid had accumulated around her left lung as well. The cancer in her hip weakened that area so much that she broke her hip as she tried to exit a taxi cab. But, as far as I knew, her cancer was not compromising the function of her vital organs like the lung and liver. That would have made it clear to me her time alive was short.

In her last post she said, “. . . death didn’t feel so far away.” Was she saying goodbye, or was she simply feeling incredibly bad physically? I will never know.

On December 1st I read the words “. . . moving closer to dying”. Those words were no longer typed by Terri but were typed by a caring family member. Obviously, things were worse than I thought. Terri had moved into a hospice facility at this point. She told the typist that she would describe oncoming death, “. . . as a feeling like she imagines dementia might feel. Tell them it isn’t scary,” she said. I sensed that Terri was hallucinating. I was told by the words I read that she was experiencing, “Lots of images, people, dreams and a sort of veil of uncertainty between reality and something other.” She was also experiencing visits from people no longer alive.

Were her last two posts “goodbye” posts? She spoke of oncoming death, but was she saying “goodbye” to her readers?

Each one of these people I did not know personally, but each expressed through their words many of the emotions I am feeling and have felt. Their final posts made me wonder--what will I write in the end? Will I be too sick to care? Will I know my time is near? Will I wait until it is too late and can no longer open my eyes or ask someone to type my words? Will any of it even matter? Maybe I will have a final post prepared months before my unwelcome end. Yet, maybe I won’t.

I did not follow Bridget Spence of  www.mybiggirlpants.blogspot.com because she died in April of 2013, the year and month I was diagnosed with stage IV. I revisited her blog recently and am happy her posts are still accessible. She pulled the curtain on her blog in the very way I hope I am able. In Dec 2012 she wrote, “It is time for me to ask each of you to let me go. It is time to say goodbye.  . . . Please don’t forget about me.”

Those simple words ended her blog in the exact way I expected the four bloggers I followed to do, but did not. Their words made me feel there would be more to come.

I have lots of plans about what I want to do before I no longer can--including ending my blog. I have not decided exactly how I will end it though--leaning toward a few short words like Bridget. Admitting to myself, the end has come will be the hardest thing I will ever do. Perhaps that is why those four people I followed who are now gone from the blogging world did not directly say, “This is my last post--goodbye.” Maybe they were hopeful they would live to post another day.

Or maybe their entire blog is and was their “goodbye” post. After all, many bloggers write to tell their stories before it is too late. I am just one of the many telling the world, "I was here, and then I wasn't."

To Tattoo or Not To Tattoo/Electrolysis and Laser Hair removal

Chemotherapy is good, and it is bad. The good is obvious—it kills cancer. The bad is sometimes not talked about openly.

Chemotherapy can make ovulation impossible. My first experience with chemotherapy occurred over a three month time period. I felt sad when I realized my ability to have children was gone. With four children already, I wasn’t going to have any more so it really shouldn’t have mattered, but it did. My breasts were gone, and now my ovaries were damaged. I was being stripped of my femininity one body part at a time. At 45 years of age at the time of that first treatment, my doctor didn’t expect that my period would return. Surprise, surprise—a little more than a year later, it did.

My second experience with chemotherapy was much longer—7 months longer. Then I had a three month break. Now, I am back to chemo but it is less harsh on my body because it is attached to another non-chemo drug that delivers the chemo straight to the cancer cell. This second time experiencing chemo, I was 48. With my age and diagnosis, my ovaries never had a chance.

Chemo has sent me directly into old age. I look older; I feel older. Less estrogen in my body from damaged ovaries not able to produce it, reminds me every day that I never finished middle age. One particular problem with less estrogen is thinner, slow growing hair. That means it is not necessary to shave as often which is great. But less estrogen can cause hair to grow in places it should not. After not having any or very little hair for over a year, when I finally started to grow hair I noticed a few tiny black hairs on the southern end of my face. Any woman who has found dark hair on their face can attest this is a horrific discovery. All I could think of was, “Get that **** off my flippin face!

I decided enough was enough. I was not going to spend another minute with Calvin and Clyde on my face. No, I really didn’t name them that--just trying to throw some humor at you.  Anyway, I called for an appointment to have electrolysis done. A day later, I saw Liz who took care of the two most annoying ones on my chin. She also decided to de-hair what felt like my entire top lip. The top lip is a very sensitive part of the face.  When the needle entered each follicle and electricity was sent to zap a nasty root, I have to be honest, that zapping hurt. My upper lip was really red when I saw myself in my rear view mirror as I was leaving, but I didn’t care. The forest was gone. I’m kidding. It wasn’t a forest.

When Liz was finished (she knew my situation with breast cancer) she said, “I see your eyebrows have not filled in.”

I explained, “Yeah, I have to draw them on just so I can give myself some eyebrows.”

She then said, “Have you thought about having permanent brows.”

I said, “I hear that is expensive.”

She said something I never expected to come out of her mouth. “How about I do them for free.”

“Whaaaattt!” I thought.

She asked me to follow her to one of the back rooms. I did. There she showed me some of her work. I couldn’t believe how beautiful, how natural the brows I saw in the pictures were. She asked me to think about it and went to prepare for her next appointment.

I pulled out my debit card to pay. The young woman at the counter said, “Oh there is no charge today.”

At that moment I could not have told you what was happening around me. I couldn’t believe a fifteen minute session that costs $30.00 had just been given to me for free! OMG!

I regrouped and asked the young woman about the process of having eyebrows tattooed. She told me that first there is an hour consult where color and shape is determined. The next session is the first treatment--it may take an hour or two. Most people prefer to do it on Fridays because there are a few days the skin will have some puffiness. A few weeks later, a touch-up session is done and that is it. Then she told me how much this type of tattooing costs. The total cost is almost $500.00. Eyebrows really don’t cover that much skin--as all of you know—so that kind of money is A LOT. Someone I barely know has offered to do a $500.00 procedure to me for free. Crazy--I know.

A tattooed eyebrow

I am going to talk it over with my oncologist to see how she feels about this and to make sure my platelet count is high enough. Last thing I want to do is bleed profusely from a tattooing of my brows. Then I need to get over the fear I have of permanent ink being placed on my face. I mean, what if she messes up? But I must say I am a little excited about this possibility. To not have to draw eyebrows on anymore-well I think everyone who feels they must paint their faces just to feel like they look better than if they didn’t can understand why I feel pleasantly happy about this random act of kindness.

Wait, oh dear—maybe she thought I did a really crappy job of drawing my eyebrows on and she thought, “This poor woman needs some major help”.

Oh well, I probably do.

What do you think—to tattoo or not to tattoo?  

My Public Service Announcement:  Ladies or even gentleman, if unwanted hair growth happens to you, please go to your nearest electrolysis professional. If you have more than a few, go the more expensive route and laser those bad boys. You will be so happy you did. If you pluck them they will grow back in six weeks. Electrolysis and laser hair removal are permanent. Remember though, hair grows in cycles so for the removal to be effective, the hair must be in the growth phase.

The Well Wishers in Community Service/Treatment #29 TDM-1 #12

On January 12, 2015, while sitting in chemo-chair number #24, I thought about the last time I was in this treatment center. It was the end of 2014. I had settled-in and was waiting to receive my drug from the pharmacy. As I opened the cover of my iPad, a young girl stopped by my chair. In her hand she held several cards.  She separated one and offered it to me. I took it and said, “Thank you.” We exchanged smiles, and she walked away.

I looked down to find three snowmen drawn in thick-lined black ink. The picture appeared to be a copy and as a final artistic touch, the snowmen were given color with crayons. I looked on the back, read the few signatures and thought, “How nice, a little holiday cheer.” Then it hit me, “Oh no, I am one of those people. I am the sick person that someone thought about when they decided what to do for a community service project." Now that I was on the receiving end of such a project, the intent of the card was lost in its simplicity. These people didn’t know me; I didn’t know them. The card did not feel warm and fuzzy. It felt superficial and fake.

I suppose I should be more appreciative of the card, but I can’t. If there was noticeable effort given to the work, I would feel differently. The lackluster endeavor made me think these young people had to do a community service project to fulfill a class’s or sorority's requirement or to pad their college applications. The forcing of young people to be involved in doing “good” for their community should at least ask that they show a certain amount of effort even if there is no honesty behind the giving.

Cancer patients are indeed in need. My former treatment center had a basket filled with items made especially for people like me. From that basket, I grabbed a few cute hand-knitted hats to keep my head warm when I was bald and the weather was cold. I appreciated the work behind the hats. When my children were small, we participated in sending cards and supplies to American soldiers overseas. (Why our government is not supplying our soldiers with these basic needs baffles my mind, but that is for another post.) The new razors, shaving cream, toothbrushes, and soap that we packed in shoe boxes I hope made those young men and women happy upon receiving them. Now that I have received a card from a stranger, I believe the cards we sent with our packages probably were not as well received as the goodies.

6 of these are mine, the two beside the small poodle mix on
the left were adopted by other families.   

Community service is good for society. I believe in it. I have rescued many dogs and cats from my local animal shelter. I gave them a warm place to sleep, medicines to heal them and finally showed them to the public where people chose them to become their new family members. During my time doing rescue work, my family added four dogs and four cats to our existing two dogs and three cats household. Life without them would be easier for sure. No de-furring of my house would be needed. No opening and closing doors to let each dog, or cat, in or out of the house would occur. If I didn’t have them in my life, there would be less love and more loneliness in my home. For that reason, I saw the result of and knew the work I was doing was benefiting many people as well as the non-human animals I saved.

It would have been nicer, at least for me, if these young people had spent time making a gift instead of a card. A knitted hat or scarf, an origami animal, or even giving out a few dollars in cash that the group had raised through a car-washing event would have brightened my day more than a few names on a post card. Am I wrong in feeling this way? What do you think?

Burning Feet/Scan Results/Treatment #30 TDM-1 #13

January 12, 2015/Scan January 29th

Though I didn’t want to, for fear my dosage of TDM1 would be reduced, I told the P.A. about my ever increasing neuropathy (nerve damage). My fingers and toes have had prickly sensations ever since I was treated with Taxotere. Over time the pins and needles have become part of my daily life. Sometimes I am highly aware of it; sometimes I am not. Recently though, my toes have started to feel like I scorched them with boiling water. During the day, the burning is there, but I can tolerate it. At night, though, when I slip into bed--WOW--the throbbing and burning set my toes on fire! The burning is lessened by morning, but my feet feel swollen making it painful to walk.

The P.A. told me there is no good treatment for neuropathy caused by chemotherapy treatments. I read about neuropathy before my appointment and learned the best treatment is dose reduction or stopping the drug altogether. Since TDM1 is giving me more time for life, I fear having to stop it. We decided to go ahead with a full-dose infusion for this treatment. By the next appointment, my scans on January 29th will be read, and if there is no progression, I will continue on TDM1 but at a reduced dose.

I had no idea the kind of pain I would experience by keeping TDM1 at full-dose. When I awakened the day after my infusion my feet were ablaze. The burning sensation started at the top of my foot, went over my toes and stopped at the ball of my foot. My feet felt swollen; each step was difficult and slow. By Wednesday, I called the nurse in Chapel Hill and told her what I was experiencing. The drug Gabapentin 100mg 3 x a day was prescribed. I started it the next day. This drug doesn’t provide pain relief for all patients. I worried I was one of the unlucky ones because each day the only relief I found was from an ice pack. Again, I called the nurse who asked me to increase the dosage to 300 mg 3 x a day. By the third week of pain, I am finally feeling relief. Not complete relief, but at least I can go to bed at night without ice packs.

Along with the Gabapentin, a prescription for Voltaren Gel was sent to my pharmacist. After one week of a game of ping pong--my insurance company would not approve it since it was an arthritis medication and only had limited success with neuropathy--I decided to pay the $59.00 hoping this gel could add some relief. With Gabapentin in my body for a few days at the higher dose, I can’t say for sure the gel helped. It sure didn’t make things worse.

My appointment this Monday will be a happy one. I had scans yesterday at 10:00 a.m. At 5:30 p.m., my youngest was enjoying her jazz class. I pulled out a book and began to read. My phone buzzed, I looked down and, since I didn't recognize the number, I sent the call straight to voice mail. A minute later, I called my voice mail, and I heard the greatest news. "Your scans look great. We will see you on Monday.” That means my disease is still not detectable by CAT scan--no evidence active of disease! I get to continue receiving TDM1. My dose will be reduced which does scare me a little, but hopefully it will continue allowing me to dance the “happy dance”.   

Cancer in the News

My good friend Meredith and I in 2010.
I met her on the day of my first
chemotherapy treatment for stage 1.

Results of a Her 2 neu positive breast cancer trial--
The MARIANNE Trial was conducted by Roche/Genetech. The three arms of the study included Kadcyla and Perjeta, Kadcyla alone, and Herceptin plus a chemotherapy drug. The end-point of increased progression free survival was not met by the Kadcyla arms of the study. Although Kadcyla and Kadcyla plus Perjeta did not produce the desired result, I think Kadcyla will become a first-line treatment for Her 2 neu disease in the future. The side-effects are more tolerable than traditional chemotherapy. Kadcyla or T-DM1 is my current drug treatment.

http://breastcancer-news.com/2015/01/05/genentech-updates-results-phase-iii-marianne-trial-advanced-her2-positive-breast-cancer-patients/?utm_content=bufferd44d5&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Cancer—random or not?
I have read a lot about breast cancer for obvious reasons. The same conclusion is usually derived from my readings—no matter how well you take care of your body, no matter what you eat, or how few bad chemicals you are exposed too, many times--2/3 of the time according to a recent study--most cancers happen randomly and there is nothing any of us can do about it.

A recent study from Johns Hopkins University concluded that mutations occurring during normal cell division are not the only cells that develop cancer. Stem cells within many tissues of the human body undergo mutations during division as well introducing another player in this complex world. The study showed the higher number of stem cell divisions within certain tissues, the greater the chance of cancer. Despite society’s desire to believe that cancer is caused by environment and heredity, this scientific explanation steers away from victim blaming and is more easily explained as random chance and bad luck.

The number of times a cell divides in a person’s lifetime increases the number of chances that something can go wrong. There is nothing new there.  Because of this, it is amazing to me that people do not get cancer more often than they do. What was new for me was the relationship of cancer and the number of stem cell divisions in many tissues.

Breast and prostate cancers were not included in the study because it is unknown the number of times a stem cell in that tissue divides. The link to sciencebasedmedicine.org that I provide further down in this post gives information about breast cancer and environment/lifestyle in an article about this study.
The website linked below explains what stem cells are and how important they are to our bodies.www.stemcells.nih.gov/info/basics/pages/basics2.aspx

The following is one paragraph taken from that website. 

Stem cells can give rise to specialized cells. When unspecialized stem cells give rise to specialized cells, the process is called differentiation. While differentiating, the cell usually goes through several stages, becoming more specialized at each step. Scientists are just beginning to understand the signals inside and outside cells that trigger each step of the differentiation process. The internal signals are controlled by a cell's genes, which are interspersed across long strands of DNA and carry coded instructions for all cellular structures and functions. The external signals for cell differentiation include chemicals secreted by other cells, physical contact with neighboring cells, and certain molecules in the microenvironment. The interaction of signals during differentiation causes the cell's DNA to acquire epigenetic marks that restrict DNA expression in the cell and can be passed on through cell division.

People want to know exactly what caused their cancer. Others want to know what caused someone's cancer so they can avoid the behaviors of people with cancer. When I was first diagnosed, I hated the idea that some people were probably blaming me for my cancer. I imagined people asking themselves when they found out my condition, “Oh, it must have been something she ate, or it is the cleaning products she used. Maybe she didn’t exercise enough, or she must not have breast fed long enough." Someone very close to me asked in 2009 (my second occurrence, stage 1) if my diagnosis was a message to me about how I live my life. Yeah, that one hurt.

Blaming the victim is not a new concept. Lung cancer victims probably face the most blame. While scientist believe that most lung cancers are caused by smoking, I have known and heard stories of smokers who live to be 90+ years and die of old age. Clearly their cells were not affected by the carcinogens taken into their body by cigarettes. Why were their cells different from another person's? Scientists have a lot of work to do to unravel this complicated mess.

Some environmental chemicals have been identified to cause certain cancers. Certain foods have been implicated in the prevention or even the cure of cancer.  The reality is that Information advertised as fact influencing public perception is many times not fact at all.

The website sciencebasedmedicinestates a statistic of 27% of breast cancers are linked to lifestyle and environment. A lifestyle that caters to obesity can be the culprit in estrogen positive breast cancer since fat causes more estrogen in the body which is the fuel behind this most common form of the disease.  This environmental/lifestyle factor, though, shows only a link and not a cause.

People grab onto environmental/lifestyle causes because people want to believe they can control the outcome of their health. The trend of today attempts to connect a cancer-free life with certain “superfoods”. I am not suggesting that eating healthy is not a good idea. I actually prefer fruits and vegetables to fried fast food. Thinking diet will prevent cancer or even cure it gives people the illusion that they have more control than they do. Perhaps that is why people are so easily duped by fantastic claims by the food industry of the benefit of eating certain foods. This kind of thinking may actually breed less compassion for the sick because of the public perception that they did it to themselves.

I think Dr. Barnett Kramer, deputy director in the office of disease prevention at the National Institutes of Health, got it right when he said, "Over time, the messages on diet and cancer have been ratcheted up until they are almost co-equal with the smoking messages. I think a lot of the public is completely unaware that the strength of the message is not matched by the strength of the evidence." NY Times article from 2005 http://www.nytimes.com/2005/09/27/health/27canc.html?pagewanted=all&_r=1&
 
Follow the link below for information about the study.

http://time.com/3650194/most-cancer-is-beyond-your-control-breakthrough-study-finds/

The article below is very long. If you make it to the end you will find that indeed bad luck is the biggest contributor to cancer’s occurrence.

http://www.sciencebasedmedicine.org/is-cancer-due-mostly-to-bad-luck/?utm_source=rss&utm_medium=rss&utm_campaign=is-cancer-due-mostly-to-bad-luck 

What would you do if you were told you can’t receive treatment? 

I know first-hand the financial burden of cancer. No one, insurance companies, governments, individuals, or even me, has an unlimited supply of money. The uncertainties of health insurance and what it will or will not cover in the future happening here in America causes me great trepidation. Three of the drugs that are for my particular type of breast cancer were recently band in the UK by their government-run healthcare system because of the price of these drugs. This week a final decision concerning these drugs will be made.

The mind-set of the people making these decisions must be “Let’s face it, stage IV breast cancer kills. Those who have it are going to die anyway. If it is not economically feasible to keep a person alive, well that is simply reality—sorry”.  (My simple explanation here is not a valid description of how people make decisions about the approval of drugs. These words of mine express the fear and anger that I have for my existence being at the mercy of so many things--people, money, my disease, drugs, my cells.)

Anyone at anytime could decide that paying for my drug(s) is too expensive, and I am not worth keeping alive. It scares the hell out of me.

**A reader left a link about the UK's NHS Cancer Drug Fund list of approved drugs and the process involved. I found it interesting--find it here.  

**Update as of November 5, 2015 -- manufacturer lowered price of Kadcyla in United Kingdom find it here.