Have You Lost Your Senses?

Chemotherapy and radiation can have some pretty harsh, long-lasting side effects.  I have discussed chemo brain, depression, body image, and a range of other effects in this blog, but a larger attack on the system is the five senses: sight, sound, smell, touch, and taste.

One of the areas that I noticed a change almost immediately was my sense of smell.  I have always had an excellent sense of smell that actually saved my life once during a gas leak in my apartment. After chemotherapy, it escalated ten-fold! 

The first time I realized it was while I was still going through chemo and my mother had hard-boiled some eggs and set them in the fridge uncovered.  Later that day I opened the fridge and gagged, ran to the bathroom and threw up.  I have had the same reaction to that smell ever since!

Another instance while still receiving chemo was when a friend was cooking scallops with garlic and I could smell it from my room on the other side of the house. I had to stay in my room the rest of the night to avoid getting sick.

What is odd, is that after almost three years, this is still having an effect on me!  I can smell things from miles away, I swear! I can smell when there is a fire in the hills; when neighbors across the street are cooking something wonderful; and when the trash in our garage three floors down needs to be taken out!

The next sense that was affected immediately was my eyesight. During chemo, my sight went blurry and my eyes would water whenever I tried to read.  After chemo, my sight never did return to normal and I had to get reading glasses.  Three years later, my sight has deteriorated quickly and it is time for a stronger prescription.  

Next came my hearing.  Now, remember, during chemo you lose ALL the hair on your body not just on your head.  This means eyebrows, eyelashes, nose hairs and the tiny hairs in your ears that vibrate to pick up the sound. I literally went deaf for about a week. 

Today, the long-lasting effect is that everything seems TOO loud! When I am out and about in the city I feel like I am being bombarded with noise.  When at my computer I must use headphones so I can be in control of the volume. 

Then there are the taste buds.  I have been a pretty picky eater most of my life.  Texture plays a big part in whether or not I will like something as well.  During chemo, I preferred my food to be somewhat bland. I wanted savory, not sweet. I wanted smooth and creamy textures.

These days it is like I have a whole new appreciation for good food.  I acquired a taste for asparagus that I refused to ever eat before. I lost my appetite for fish altogether.  I prefer salty snacks over sweet ones.  Some foods simply have no flavor to me at all and I need to add salt or spices.

Luckily, for me, my sense of touch was not affected at all.  I did not develop neuropathy in any of my limbs or digits and for that I am grateful.  I have spoken to many survivors who say the tips of their fingers have lost feeling, or they find it hard to walk because they developed neuropathy in their feet.  

I find it so interesting that my sense of smell and my hearing were both escalated above normal, yet my sense of taste and my eyesight deteriorated.  I would love to hear from any of my readers how chemo affected yours, and which senses were changed the most!


Image provided by Pixabay.com 

Once A Cancer Patient, Always A Cancer Patient

I recently read a blog post from one of my favorite bloggers and author, Nancy Stordahl.  She discusses the fact that seven years after her diagnosis she still needs her Oncologist.  After reading this post and the comments left by other women, I decided I wanted to continue that discussion here.

After a cancer diagnosis, finding the right medical team is not always as easy as it may sound.  Of course you start with whoever is in your area, any local cancer center, and who accepts your insurance.  One thing you have to consider is that you will be working with this team for a very long time, especially the Oncologist.  Once treated for the disease, you will still continue to have regular visits for blood tests and exams for years to come.

For instance, my treatment was over at the end of 2013, and here it is May of 2017 and I am still seeing my Oncologist every 3 months for blood tests and physical exams.

The doctor/patient relationship must be a solid one if you are both going to deal with each other this long.  According to Nancy's blog, finding the right doctor has not been easy for many patients.  You must decide what things are important to you in your medical team. 

Does the doctor listen to you and answer your questions? Does he or she treat you kindly or are they stern and overbearing?  How much experience do they have treating this disease? Do they discuss all the many different treatments for cancer and help you make the tough decisions?  Do they welcome all of your questions and do their best to find you answers? 

These are all good questions to consider when forming this relationship. Having to change doctors in the midst of treatment can be very stressful and difficult with so many emotional issues going on at that time.  

Nancy went thru 5 doctors before finding the right match. 5! That is nuts!  Her 5th choice was a woman who had extensive experience with BRCA+ patients so that was a good match for her.  That relationship turned out to be a disaster, so she went back to choice #4 and developed a relationship of mutual respect.  However, to hear her tell it, this doctor is warm and cordial, yet they do not chit chat much. There are no hugs, only handshakes, and they usually stay on topic when discussing her case.

If that sort of relationship works for you then that is great. For me, I got so lucky I still thank the universe every day! My Oncologist is a leader in his field here in Southern California, and one of the happiest, funniest guys I have ever met! He is the lead Oncologist at my local cancer center which is literally only 15 minutes from my house.  The only snag I ran into is that no one at this center accepted my insurance. Because my general physician worked with all of these folks at our local hospital he went to bat for me and my team decided to take me on despite my insurance!

This man tells me jokes, hugs me every single time I walk in, kisses me on the forehead and tells me I am beautiful even when I feel like the ugliest duckling.  I have always felt safe in his care and his entire team. His nurses are knowledgeable, caring, and also full of personality.  His team of radiologists and surgeons were also great people that all made my journey uplifting and actually a bit fun! Even the nurses in the infusion room for chemotherapy had me laughing and chatting so the time would fly by.

There are several other reasons why I adore this team and this cancer center. One big reason is that I have online access to my medical records so I can see all my test results as they are posted. This also means my general physician can also follow my treatment and test results, so discussing anything between my Oncologist and regular doctor is so easy, and they can communicate with each other as well!

I realize now after reading Nancy's blog post that I am the exception to the rule and I feel so bad for people who are having a tough time with their medical staff.  

One women commented that her doctor does not have the time for her list of questions at her visits. Another women commented that an intern used the word "cure" when discussing chemotherapy with her and this made her lose confidence in their experience. Another woman said she went the way of a naturopath instead of the traditional Oncologist and that seemed to be working for her.  

The one recurring theme I see is that all these women discussed that their relationship with their doctor was a bit too impersonal and cold.  So many people are getting cancer today, and these doctors can be overbooked, overworked, and we all become just a number a to them.  If this is not the sort of relationship you want, my advice is to just keep looking.  If I had to visit a doctor every 3 months that did not listen to me, or had a cold personality, I would go mad!

I still have another year or more to go with my doctor and while the visit itself can be stressful, I look forward to seeing him.  He knows I am on pins and needles waiting for each blood test result, yet always has a joke or a hug or a smile for me. My biggest fear right now is that he is close to retirement and I may have to begin the search for a new Oncologist if he leaves. You can bet I will judge every doctor to come by my current one!


Image provided by Pixabay.com 

And Now For The Good News!

During this 2017 Relay For Life season - amidst all the fundraising, walks, and painting the town purple - I would like to talk about some good news!  All of that research we are raising funds for is actually working!! 

The most amazing new research is on a nanoparticle that can shrink breast cancer tumors while also preventing any recurrance of the disease! Can you imagine? 

It sounds very sci-fi, but researchers at the Mayo Clinic have developed this nanoparticle and have tested it on mice.  70% to 80% of the mice tested showed a reduction in tumor size, but even more amazing is that they showed a resistance to any new tumors recurring, even when exposed to cancer cells approximately one month later!

Test results showed that it was producing an immune response to HER2-positive breast cancers.  Basically it is causing the body to create memory in the immune system! To read further about this study you can check out the Nature Nanotechnology online publication.

For women like myself, diagnosed with estrogen receptor-positive (ER-positive) breast cancer, there is also some good news!  In the headlines earlier this year was an announcement about a new chemotherapy drug called Abraxane.  

One of the drugs used in my chemotherapy, Taxol, is very hard on the body and causes many side effects including severe allergic reaction.  Because Taxol does not dissolve in water, it has to be put into solvents along with steroids and antihistamines when delivered to the body.  This meant I had to be in that infusion chair for upwards of 4 hours.  The biggest issue with this particular drug is how we acquire it. It comes from the bark of a Himalayan yew tree which is now facing extinction.

Abraxane does not have this problem, which means no more solvent or added medications, which in turn reduces the infusion time for chemotherapy from 4-5 hours down to roughly a half hour!!  Testing also showed that women receiving this drug had almost double the response rate.  It seems it is all about the delivery!

At this time the FDA has only approved this drug for women with recurring or metastasized breast cancer, but it is only a matter of time!

Another recent development is a new aromatase inhibitor hormone therapy that seems to perform better than Tamoxifen.  This means, for post-menopausal women, they reduce the risk of late recurrance in ER-positive cancers even better! Testing is still ongoing.

Lastly, on the radiation front, a new accelerated course of treatment is being researched that could reduce the current 6 1/2 week treatment down to about half of that! This can be a huge quality of life issue for some women, where going in for radiation 5 days a week for 6 1/2 weeks can really be a challenge.

For myself, not only were my issues about travel and parking fees, which I was thankfully validated for, but also it meant that after treatment each day I was wiped out!  Because I have very sensitive skin it really did a number on me.

Rutgers Cancer Institute of New Jersey is currently testing this targeted radiation and trials are showing positive results.

So while you walk around those tracks and raise money for your RFL teams, remember, what you are doing is really working in the real world for real people! It may not be a cure yet, but this new research will provide women suffering from breast cancer and the side effects of treatment a better quality of life!


Image provided by Pixabay.com

Low Thyroid Hormone? What's The Link?

Your thyroid is a butterfly-shaped gland at the lower front of your neck. It acts like the body's thermostat and impacts almost every system in your body. When this gland begins producing lower amounts of the thyroid hormone Thyroxine it is called Hypothyroidism. Both men and women can develop this, however, women are about 5 times more likely to suffer from it. It can occur at any age and once it develops it almost always becomes a lifelong condition.

Once diagnosed, you will likely be prescribed some version of the drug Levothyroxine Sodium, or Synthroid.  Dosage varies, depending on individual levels of the hormone as a result of your blood tests.

I have discovered an excellent resource on this subject and wanted to share it with you.  Please check out Dana Trentini's blog called Hypothyroid Mom.  Dana talks about everything you ever wanted to know about this condition, its symptoms and effects on your body, and how to live better with the condition!

So what is the link to breast cancer?  In the early 1970's studies began to show that women with thyroid disease had an increased risk of developing breast cancer over those women who did not have thyroid problems. Studies today continue to confirm this link. Treatments for breast cancer patients, such as slowing down the production of the estrogen hormone - which disrupts the delicate balance of all hormones in the body - can also cause thyroid disease, which was true in my case.

Perhaps I already suffered from hypothyroidism and it went undiagnosed until my breast cancer diagnosis, but it did not show up in my blood tests until after I was taking the anti-hormone Tamoxifen.  This threw my body into early, medically-induced menopause and upset that delicate balance.  Now I take Levothyroxine Sodium everyday for probably the rest of my life.

As you will learn by reading Dana's blog mentioned above, there are a multitude of symptoms that you might suffer from, which would indicate hypothyroidism, but it is in your best interest to get a simple blood test now!  There are also some pretty scary effects it can have on your body so please please, ask your doctor to test you as soon as possible!


Image provided by Pixabay.com

Hairology 101

Going bald during chemotherapy is only the beginning of the cruel joke.  The punch line is when your hair starts to grow back and it is someone else's hair!  Where did these curls come from? Why does my hair now have a wave in it? What is with this thick dry texture? 

I used to have long, straight, silky hair.  Now, I have this thick wavy mop I do not recognize.  I have no idea what to do with it!  I realize this is really nothing to complain about, I mean, who doesn't want a nice head of hair? The problem is, I spent the past 47 years working with my old hair, learning it's nuances, finding out what it needed, and what cut it preferred.  

Over the past 3 years I have stared into the mirror, mouth agape, as this foreign hair flows from my scalp like some kind of alien.  I take brush and hairdryer in hand like a pro only to have it do the complete opposite of what I need it to do.  The harder I try to get the wavy parts to lie flat, they stick out even more just to spite me! I try to get my part on the side, it flips right back to the center and I swear it is mocking me! I have even gone the way of hair product, which I never needed before, to try and tame these coiled locks. Waste of money.  Spackling paste would do a better a job.

Initially I began asking everyone I could about this phenomenon, and the answers were all the same..."Oh that is normal, it will get back to your old hair in a few months!" While it is no longer "chemo-curls," that kinky curly or perm-like stuff, the wavy thick mass has stuck around like a bad habit.  So I soldiered on and let it grow out just past my shoulder blades. Yes, the curls turned into waves once the hair got heavier, but now I had what resembled a sort of bird's nest carpet! It literally bounced when I walked, and not like those pretty models you see in shampoo commercials either!  

As if the hot flashes were not enough, now this hornet's nest was making me so hot I could barely breathe, and it almost strangled me to death at night. It was like I had become Medusa and the snakes decided to rebel! Finally I had enough and decided to cut it all off again.  You see, in my naiveté, I thought if I did this, the new growth might be back to normal...not! Now it is just a shorter mop.

Aside from the waves and strange texture there is the color.  My hair came back darker than my natural color, and with more gray. And no, not salt and pepper gray that would look nice for my age, oh no, the gray came in the form of a bride of Frankenstein stripe dead center from the top of my head!  Trying to part the hair on the side is my way of hiding that stripe, so when it flips right back to a center part I know for sure it is mocking me!  

My new plan of attack is to let it grow to just between my jaw and my shoulder making it heavy enough to hold that side part.  Until then I am waging a war I know I can't win.  You know that old wive's tale about talking to your plants? Yes, in the mirror, I talk to my hair. I ask it why it is doing this to me.  I try to be nice and complimentary, even leave the conditioner in just a bit longer, brush it with love, to no avail.  As I stare at it, a stray hair will literally push it's way out in the wrong direction in complete defiance.  Resistance is futile...

That cruel joke I spoke of? Surviving breast cancer is the hardest battle to fight and win.  The aftermath is a complete loss of identity one must fight to find all over again.  We do not look the same in the mirror, from head to toe.  Everything about us has changed, both physically and mentally.  Our lives have changed. It gives us a chance to experiment with ourselves and try to find our new comfort zone.  I am still experimenting with the "new me" and while I have not yet settled in to this new identity,  I look forward to the journey.

The battle with my hair rages on...

Image provided by Pixabay.com

How to cope with fear of breast cancer recurrence

Fear and PTSD

A cancer diagnosis of any type can bring on a whirlwind of emotions. Anxiety, depression and fear are the most common.  These emotions can get worse once treatment is over due to cancer-related post-traumatic-stress-disorder (PTSD).

In my case it all began with my breast cancer diagnosis during Breast Cancer Awareness month, October 2012, one month before my 46th birthday. I had a mass in my right breast that had started to burn and ache, so I took advantage of a program here in my city that provided mammograms for $100 during the month of October.  Since I had no insurance at the time, my general physician had to do the referral, and once he took a look at me, that simple mammogram turned into a diagnostic mammogram and ultrasound.  I was then brought in for a biopsy on my breast and right armpit.

While sitting in the dressing room after changing back into my clothes, my soon-to-be Nurse Navigator came in to give me the bad news.  I had three tumors in my right breast and the cancer had spread to the lymph nodes of my right armpit.  The official diagnosis was stage 3b Invasive Ductal Carcinoma (IDC) estrogen receptive-positive or ER-positive at 90%, that had metastasized to the lymph nodes.

Of course my very first thought was "am I going to die?"  My second thought was about losing my hair.  I had just spent the past 2 years getting my hair exactly how I wanted it after a bad haircut choice, and now I was going to lose it all.  My third thought was about my mother and how she was going to cope with all this. My fourth thought was about the man I had only been dating for about 2 1/2 months by this time.  Would he leave me? Would he decide this was too much to deal with after only knowing me such a short time?  And if I was going to die, dying all alone, without love, was even more frightening. This emotional roller coaster raged inside of me for the entire year of treatment and beyond.

Treatment consisted of: 6 rounds of chemotherapy (twice a month); a right modified radical mastectomy and removal of 15 lymph nodes; 8 more rounds of chemotherapy (every week); then 6 1/2 weeks of radiation every day except weekends; and finally, anti-hormone therapy with the drug Tamoxifen.  I was then thrown into physical therapy for the prevention of lymphedema which I was at high risk for in my right arm.  The movies they show you about lymphedema are so harrowing I would have done anything they asked to prevent that from ever happening to me! Next was the hypothyroidism diagnosis and a new medication I would have to take for the rest of my life. I will discuss this terrifying development in another post. I was in treatment from November 2012 to October 2013.

Now I know many of you are thinking.."But, you survived! What's the problem?"  The title of an article written by Katy Waldman, staff writer for the online magazine Slate.com, said it beautifully..."Stop Demanding Positivity From Cancer Survivors." Most people think that those of us fighting and surviving cancer should be warriors and have this super positive attitude about beating cancer.  First of all, our doctors did most of the hard work, we just showed up when they told us to, kept our support and caregivers close, and tried to stay positive.  I do not recall ever feeling like a warrior.  Not all survivors are up to the task of walking/running marathons, or being a warrior for the pink ribbon campaign!  Many of us fall into depression, anxiety, fear of recurrence and PTSD.

There is also a huge misconception that by leading a less than healthy lifestyle we gave ourselves cancer.  Truth is, even the healthiest people get cancer.  At my cancer center I met a woman who was a marathon runner, worked out every day since high school, was a vegetarian and all around health nut...she got breast cancer.  She felt betrayed and defeated by her healthy body.  It might have been a hereditary gene, or perhaps the environment, but she certainly did not do it to herself.

As a survivor I live in a state of fear everyday.  I fear for my future and find it hard to make any solid plans or set goals with such uncertainty.  I fear that I will never find love again.  That man I was dating at the time of my diagnosis? He eventually could not deal with the side effects of the drug Tamoxifen I was dealing with and stopped coming over, finding himself a new girlfriend online. I spoke to several women at my cancer center who told me similar stories.  One woman had been married for 25 years to - a doctor - with two children, a nice house, yet once she was diagnosed with breast cancer her husband divorced her and began dating a woman much younger than her.  Since then I have heard story after story revealing the same truth...men leave because, what...we are broken?  We are the same women, have the same soul, are capable of the same love, we are just missing one or both breasts! I truly find it difficult to not wish upon these men a bit of prostrate cancer and see how they feel then! But my soul is not that cruel. I do not wish cancer on anyone!

Then there is the fear of recurrence.  I recently read a statistic about my certain type of cancer that still gives me nightmares!  In an article written last year in the online magazine Scienceblogs.com, the writer stated that "conventional medicine doesn't consider breast cancer patients cured at five years.  We usually speak of ten year survival, because we know breast cancer, particularly estrogen receptor-positive breast cancer, can recur late, sometimes even 20 years later." I am only 3 years out of treatment and 2 years away from my oncologist giving me the "all clear."  But am I really clear? in 20 years I will be 70 and probably unable to endure this type of cancer treatment again.  So in my fearful mind, I tentatively only have 20 years to make something of my life before it's all over.  Of course as they say, I could still get hit by a bus tomorrow!

To most of you reading this it must all sound extremely dramatic and silly, but to someone living in this fear it can be debilitating.  There are days I simply cannot function because I cry so hard it hurts. Every post I write for this blog is written with tears on my cheeks.

While doing some research I found a list of typical cancer-related PTSD symptoms on the Mayo Clinic website and could not believe how many of them made me say "Yep, that's me!"  Here is that list:

• Problems sleeping because of intrusive dreams or flashbacks of trauma
• Feeling hopeless
• Memory problems
• Trouble concentrating
• Avoiding activities you once enjoyed
• Feelings of guilt or shame
• Irritability and anger
• Self-destructive behaviors, such as drinking too much or taking unusual risks
• Uncontrolled sadness and crying spells
• Hearing or seeing things that are not there

"It's normal to have some of these symptoms as a cancer survivor."

BreastCancer.org posted their own list as follows:

• Nightmares or flashbacks about the cancer experience
• Continuously focusing on the cancer experience
• Avoiding people, places and events that remind you of the experience
• Trouble sleeping
• Extreme irritableness 
• Intense feelings of fear
• Being overly excitable
• Feeling helpless or hopeless
• Shame or guilty feelings
• Bouts of crying
• Feeling emotionally numb
• Sadness or depression
• Loss of appetite
• Trouble maintaining personal relationships
• Self-destructive behavior (alcohol or drug abuse, for example)
• Memory problems
• Concentration problems
• Being startled or frightened easily
• Getting no joy from activities you used to enjoy
• Hallucinations

Other studies have added different symptoms to this list...

• Panic attacks
• Avoidance of follow-up checkups or other appointments, or anything you associate with your cancer or treatment
• Worry that any change in your body means your cancer has returned

Personally, every three months when I have my appointment for a checkup with my oncologist I fight the urge to cancel or reschedule.  When I get there I fidget in the waiting room.  Once in the exam room (for reasons I still cannot define) I start to cry. My oncologist is not only brilliant, but one of the nicest guys I have ever met and will always hug me and tell me I am beautiful, which only makes me cry harder!  Then, after they take 3-4 vials of my blood, I sit there impatiently waiting for the results hoping that it is negative and I am free to go home. After that measly 2 hours I am physically and mentally exhausted and now I have to wait a whole three months to do it all again!

Every time I get a back ache, a muscle spasm, achy joints or feel a strange lump anywhere on my body my mind races right to cancer and the panic sets in.  Every time I cough it is lung cancer! If I get a headache it is a brain tumor! It's like being a hypochondriac 24/7, even in your sleep.

So you see, while we did survive the disease, the life it left some of us with was no prize worthy of beating our chests in true warrior fashion and hopping on to the band wagon for the cause!  We struggle everyday just to go on, to force a smile, to find the energy to face the day alone, or to find sleep when the day is over.  I am a bit surprised I still have eyelashes due to all the tears I cry and I should probably buy stock in my tissue maker!

Image provided by Pixabay.com

Reconstructing Self-image

"self-image (n.)

The conception that one has of oneself, including an assessment of qualities and personal worth." - Dictionary.com

During the course of our lives, this assessment changes depending on what we are going through at the time.  Body-image plays a big part in this assessment, and for many breast cancer survivors it is the only one we can focus on.  Many of us grew up playing with Barbie and Ken dolls, and that was our introduction to society's idea of the perfect body type.  

Over the past few decades the doll has evolved to represent other cultures and even promotes that children can be anything they want to be. However, the body type has remained relatively the same and so has our thinking.  They came up with tall, petite and curvy Barbie, yet she still has a slim waistline and healthy sized bust.

After a breast cancer diagnosis and mastectomy (of either one or both breasts) many of us begin to feel that we are no longer feminine or attractive.  Looking in the mirror becomes so painful for me at times, I just stand there and cry!  I adored my breasts, let me just put that out there. They were perfect.  Then immediately following that comes the question of "What do I wear?" I try on a dozen tops, tossing each next one to the floor in anger because they make me look lopsided or weird.  I now have no cleavage so v-necks or low-cut anything are out of the question because if I lean over even a little bit my scar becomes visible.  I also try to hide the scar from the port that was in my upper chest. I end up in the homely, baggy t-shirt or sweatshirt that sort of masks my chest.  I make sure every top I wear has a busy print to take the viewers eyes away from my lopsided chest.

Oh sure, after surgery they give you this prosthetic breast that slips into a panel in a special bra to make your figure even.  What they do not understand, is that without an actual breast to hold that side of the bra in place, the material moves all over the place, rubbing against my scar which is still 70% numb and that is extremely uncomfortable.  All the adjusting and fidgeting just draws even more attention to my chest.  I also had 15 lymphnodes removed in that armpit and I am at high risk of developing lymphedema in that arm so having anything that restrictive around my torso is not a very good idea.  Add to that the compression sleeve I am supposed to wear, I feel so bound up it drives me insane.

In 2015 the Breast Cancer Patient Education Act was passed requiring that all doctors involved with diagnosing and treating breast cancer inform their patients about their breast reconstruction options and mandatory insurance coverage before treatment begins.  Most women have breast reconstruction after a mastectomy.  Some decide not to have this reconstructive surgery because they have had enough pain and down time for recovery that they simply do not wish to go through all of that again. Others, like myself, are unable to get reconstruction for one reason or another.  For me, it was my insurance.

The Women's Health and Cancer Rights Act of 1998 mandates that all insurance carriers must cover the cost of breast reconstruction after a mastectomy or lumpectomy.  What it does NOT do is mandate that all doctors must accept that insurance.  Doctors are allowed to pick and choose what insurance they will accept or not accept, turning away certain patients based on what insurance they carry. Breast reconstruction is done by a plastic surgeon, not the surgeon who originally does the actual mastectomy.  There are literally no plastic surgeons in my state that accept my insurance for this reconstruction.  They want thousands of dollars in cash.  I just went through an entire year of breast cancer treatment.  What cash do they think I have??

The normal process for this procedure is that after the mastectomy itself, a plastic surgeon is present to take over and perform the reconstruction.  If this is not possible for whatever reason, the original surgeon will attempt to leave plenty of skin available for a tissue expander to be placed there until reconstruction can be done.  In my case, my surgeon could not find a plastic surgeon who would accept my insurance, and there was no guarantee I would find one any time soon, so she attempted to leave enough skin just in case, but did not put in the tissue expander.  I then finished my second round of chemotherapy and finally radiation.  At this point, reconstruction becomes less and less advisable because after radiation the skin has a lesser chance of healing from another surgery.  Now that extra skin is an eyesore and makes wearing a bra even more uncomfortable.

Three years later I have still not found one plastic surgeon who would accept my insurance, either here in my state or in several other states I have had friends check on for me.  Is there not one out there that has any sympathy for a breast cancer survivor?  Why did they become plastic surgeons in the first place? To help us all look and feel better? Or was it the money?  If the Women's Health and Cancer Rights Act of 1998 forces insurance companies to pay for this surgery, why would none of these surgeons accept it??  This makes absolutely no sense to me.

I think back to a question my original surgeon asked me before the surgery. "Do you want to remove just the diseased breast, or both of them to be safe?"  At that time I had been promised reconstruction so why would I remove both?  I was told they could build up the breast to the same size as my existing one, and even work on the healthy one to make them both perky again! I was about to buy a t-shirt that said "Of course they're fake, the real ones tried to kill me!"  You can only imagine the huge let down and blow to my self-image. I am now trying to just be OK with my scars and lopsidedness.  

Had I removed both at least my chest would be even now...

Things are, however, looking up.  Thanks to websites like Leave Me Breastless that provide fashion ideas for survivors who have chosen not to have reconstruction, we now have some advice on how to buy and wear clothing to help restore some semblance of a healthy self-image.  I am still working on that.

© Image copyright Janis Harner 2017

Lost in Transition

A short film/video by the Institute of Medicine about the problems that come up after cancer patients successfully end treatment and look into follow up.

Generation Chemo Brain

As the brilliant comedian George Carlin once said "That's the whole meaning of life isn't it? Trying to find a place for your stuff!" 

Having chemo brain is like trying to fill a storage unit with too much furniture; you have to get rid of some stuff to make room for more stuff. For me, the stuff I am forced to give up are my short term memory, word recall, attention span, concentration and multi-tasking.  I have started referring to this as having ADHD-OCD. And I am not even a Virgo! (that joke was for my Mother).

Before my diagnosis I was a multi-tasking maniac!  I could have an entire conversation without struggling to find the word I was looking for.  I had put myself back in college at 41 years old and was a master of the essay.  Once I began treatment I had to take a five month break from classes because it was so hard to retain information, read, or write, and my GPA was at risk.  Needless to say, I only attained my Associate Degree because I ran out of funds and the brain power to continue to the Bachelor Degree.  Life changing.  Sad.

The Mayo Clinic website describes the term chemo brain as "...a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment."  They go on to say... "Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience."

Some people have suggested to me that it must be a combination of several other things such as the stress of a cancer diagnosis; medically-induced menopause; hormonal changes; related fatigue and/or insomnia; and medications.  All I know is my brain has not been the same since.  

This has forced me - and many others - to change the way we think and work.  Some have started to journal, others keep post-it notes all over the place.  Using the calendar function on my cell phone has helped me remember appointments by setting up the alerts to remind me a day or two in advance.  I kept showing up to appointments either at the wrong time or the wrong day entirely, and it was really starting to worry me.  With Alzheimer's in the family, it was a growing concern.

Enter friends and family.  We start to pull away because we find it harder and harder to communicate. The funny looks as we stumble around for the right word or forget what we were talking about all together, is almost too much to bear.  Facebook? Forget it!  I would scroll past about 3 or 4 posts and lack the concentration to keep going.  Isolation.  It is never intentional, but inevitable when you grow tired of trying to explain your chemo brain to everyone.  We start turning down invitations to socialize because we do not want to embarrass or humiliate ourselves. Well that, and in my case the fact that I only have one breast and am suffocating in my self-loathing.

I implore anyone with a friend or family member dealing with cancer to be patient.  Yes, coming from the queen of impatience this makes me sound like a total hypocrite but I am being serious here. A little patience and understanding goes a long way with us. Hey! If you know that word I am struggling to come up with, just blurt it out, I could use the help! You have no idea how many times I had to stop writing this post to look something up on Dictionary.com! Writing about chemo brain, while having chemo brain...priceless.

These days more and more people are surviving cancer than ever before.  This presents a new opportunity for the research community.  We have spent the last few decades researching a cure, while ignoring the cause. Now we need to focus on the long-term side effects from treatment that survivors are dealing with.  

Speak out. Talk to your doctors.  Talk to other cancer survivors. Read.  

❕ Let's start a movement before we forget what we were talking about ❕

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