Cancer Journey

I have to tell this story from the beginning so you can understand everything I went through and why I have changed many aspects of my life.  I apologize for how long this post is, but believe me it has been an even longer 18 months for me and my family.

I followed the path that most people follow when diagnosed with cancer simply because I was scared and told that this was the way to go.  I was not presented with alternative options for my treatment and therefore suffered through treatment the way most cancer patients do.  Would I have done anything different if I knew then everything that I know now…..probably.  Do I blame the Doctors or others for putting me through the Slash/Poison/Burn methods…..no.  I do think that they did save my life.  However changing to a healthy lifestyle, I believe, will compliment my treatment and hopefully ensure that I will not have to endure more of what I have already been through.

I have always been a rather competitive, easily stressed, “type A” personality person.  I finished High School at 17, College at 21, Masters degree at 23 and PhD at 25. I worked hard, played hard, and enjoyed whatever I wanted without thinking of consequences.  Marriage and children were happily welcomed but I found myself working a job that had flexible hours and good pay, but no other benefits.  It was highly stressful, unfulfilling, and downright horrible!  I did that job for 13 years until my husband and I decided to move to Florida and start a new path.  For 6 months I volunteered at my children’s schools, became involved with all types of activities and started to think about what direction I wanted my work life to go in.  I was actually starting to relax (not hard when you are in paradise, sandwiched between 2 rivers and 7 minutes from the ocean) and take stock in how wonderful life was when I felt “the bump.”

It was January of 2011, everything was picture perfect and in an instant it all changed.  I had only gone to a new PCP once to establish myself as a new patient.  I was healthy after all and rarely ever visited a Doctor.  I called my PCP and she ordered a diagnostic mammogram and ultrasound (luckily she didn’t just blow it off as nothing since I had none of the red flags for breast cancer).

I had to wait several weeks before I could have the tests done.  They needed my last mammogram films from NY to compare the results to and paperwork and scheduling proved to be a nightmare.  When I finally went in to have the tests done I was nervous, scared and convinced that I had cancer.  My husband, on the other hand, was hoping I was overreacting (with good reason as I once thought I had Cat Scratch Fever from my cat) and was my steady rock of support.  After my tests, I was made to wait for the Radiologist to go over the results.  I was taken into a small dark room with a hefty, unfriendly man sitting in a big chair facing several computer monitors.  Without even turning around to look at me or shaking my hand and introducing himself, he simply said, “See this area here? It looks rough around the edges and irregular which is most likely cancer!”  My head was spinning and I barely heard the rest of what he was saying.  He said that it looked as if it was also in other areas and that I should schedule a “few” biopsies a.s.a.p.  He then turned around in his chair and in a quite relaxed manner asked, “Any questions?”

No one can imagine what that is like unless they have actually been there.  I broke down in the parking lot and called my husband sobbing.  When I got home I started making phone calls.  First my PCP and then a surgeon.  I went to see the surgeon who tried to assure me that it was most likely not cancer because it was painful (and most tumors are not) and I had no family history of breast cancer or other contributing factors.  Also, I was young, only 43.  I started the “hurry up and wait” game as the next Doctor who would be performing the biopsies was getting ready to go on vacation.  Luckily I got in before she left and got the biopsies done, but was then told I may have to wait for the results until she got back in 2 weeks!  I did not wait as I received a phone call with the results in a few days.  A nurse simply called and proceeded to tell me over the phone that it was indeed cancer and I would need to go back to the surgeon a.s.a.p.  That’s right folks…..over the phone…..I received the official diagnosis.  I still get teary remembering the day I found out and the phone call I made to my husband (who was at work and needless to say got nothing done, was an emotional wreck, and couldn’t even make it home, having to pull over sobbing himself).

Back to the surgeon I went with my husband in tow (I couldn’t stop crying any time a Doctor simply looked at me).  He said that I would need to have a bilateral mastectomy and that I would also need to decide if I wanted a plastic surgeon there for immediate reconstruction.  There was no decision of lumpectomy vs unilateral mastectomy vs bilateral mastectomy, as the cancer had already spread to 3 areas in the left breast and the likelihood of it appearing on the right side was 90%.  So off to a plastic surgeon, again with my husband by my side, to discuss the process of expanders and the surgeon’s role in the surgery.

When you are diagnosed with breast cancer and are undergoing surgery they also insert a dye into your nipples (go ahead and cringe, it was complete unbearable pain) so that they can remove your sentinel lymph nodes (the ones that you drain to first).  This is a way to see if the cancer is spreading.  We decided that if the nodes were negative we would move forward with the expanders at surgery since I would most likely not need radiation, but if they were positive we would hold off.

While I was waiting to coordinate 2 surgeons at the same surgery (harder than you may think especially since 1 again was getting ready for a vacation), I was getting antsy and wanted to meet with a Medical Oncologist.  Hoping that I could get a glimpse into what I was in for after surgery.  Through a “friend of a friend” who had been through this just a short while ago, I was given the name of an Oncologist with glorious reviews.  I phoned my surgeon to get a referral and was told that I didn’t need to see an Oncologist until after my surgery since they wouldn’t be able to do or tell me anything until the cancer was staged.  This just didn’t feel right to me as I had so many unanswered questions.   I phoned my friend back and she suggested that I call the Oncologist directly and see if he would see me without the referral.  I did just that and the office asked who my surgeon was, proceeded to put me on hold, called the surgeon, and then came back on the line and said that they agreed with the surgeon that I should wait until after the surgery.

My head was reeling with all sorts of thoughts.  I was on the computer reading frantically to try to find out what was happening to me and what was going to happen with all the treatments.  My husband had to threaten to throw away the computer as it was filling my head with very dark, dreary images.  At this point in the journey it is typical to feel helpless and hopeless and I was definitely there.  Luckily, even though new to the area, I had neighbors who wanted to help and the “friend of a friend” that I mentioned belonged to a group of young survivors (all women dx before the age of 45 with breast cancer) and so the supports started to help lift me out of my funk :)

I can’t emphasis enough at this point how important it was for me to become connected with the Young Survival group in my area.  The women not only had a deep understanding of what I was going through, having been there first hand, but the unconditional support they showed my whole family was wonderful.  I had strangers show up at my door with food and gifts.  I had several of the women bring their same aged daughters to the park one day to meet my daughters and help them see that other mothers have survived this disease.  The women meet each month and form strong friendships and bonds.

One of my neighbors, upon hearing my situation, came to the house and told me that her daughter had been through the same thing about 7 years ago.   She said that she would have her daughter call me.  Shortly after she left my house she phoned to say that she was having her daughter come over to her house that night to meet me and talk to me.  That night changed a lot of things!  I was given hope, I was able to share my fears with someone who had “been there, done that” and I was connected immediately with an Oncologist.  The neighbor’s daughter was a board member of a group called Breast Friends with a wonderful Oncologist also on the board.  She phoned the Oncologist to tell her about my situation and the Oncologist said that I could come in the next day and meet with her on her lunch hour.  Yes, there are still a few Doctors out there who truly care about patients and know that they can’t wait in a situation like this.

I met with the Oncologist the next day and started a whirlwind of tests.  I found out that I needed a DEXA scan of my bones, a PET scan to know if the cancer was traceable in other parts of my body, and blood work to check tumor markers and a variety of other things (one being Vit D which my Doctor described as being “in the toilet”).  This is where my journey took another dark turn.  I have an overwhelming fear of needles.  I know, you are thinking that many people do but I am deathly afraid of them to the point that I would faint often as a kid (and occasionally as an adult) and just the thought and anticipation of a needle would make me sweat, turn red and usually get teary eyed.  But, as many nurses and Doctors have seen first hand, I have had good reason.  I have “rolling” veins, “bad” veins, whatever people want to call them.  The point is I usually get stuck 2, 3, 4, even 5 times in the case of my first PET scan to get a vein and by then I am glued to the ceiling (at the PET my husband had to literally hold my legs down and I left bruised from my hands to my elbows on both arms).  Luckily my Oncologist came to the rescue again.  She phoned my surgeon and told him to place a port at my surgery which allows for all of my blood to be drawn and chemo to be administered with no IV or needles in the arm.  Yes, it is a needle to access the port but with a numbing cream ahead of time and nurses who are empathetic to my cause and spray A LOT of freezy spray on my port, I never feel the needle going in.

So, it’s 2 months out since I first felt the “bump” now and I am going in for surgery.  I first get the sentinel node injections and then after about an hour they take x-rays to see which nodes “light up.”  Then I’m under the knife with the first surgeon who performs the node biopsy, double mastectomy and port placement (5 battle scars).  When the nodes are removed they are given a quick dye test to see if they have cancer.  If they are negative…hooray, you move on with the rest of surgery.  However, if they are positive….boo, they take more out and test them.  They keep doing this until they have negative nodes.  The Doctor thought I was lucky and the 2 nodes on the left side and 4 on the right side that were removed all came back negative.  The plastic surgeon then came in and placed the expanders in and sewed me up (with some difficulty as the tumor was close to my chest wall and I have very little skin…President of the IBTC remember).  After surgery while I was still under some heavy-duty medications, the surgeon came and talked to my husband telling him that everything went well and the nodes were negative (with only a 3 to 7% chance of a false-negative).  What a relief!  My husband was excited about telling me the news knowing that was the one thing I wanted to hear when I woke up.

I must deviate from the story briefly as I mention that my husband has always had this saying, “it’s the Barry luck” whenever things go wrong, don’t work out, or just plain stink!  I’m not sure where this came from or why the Barry’s don’t have good luck but I think from this point on I officially inherited it by marriage.  Grey, no black or white, became the color of my medical case, and whenever there was a bad side-effect, something wrong with a test or small percentage that something would or could go wrong, it did.

I found out a few days later that one of my nodes came back positive for cancer when they sent them off for the extensive pathology testing.  Off to the surgeons again.  He informed me that he now wanted to do a lymph dissection down the left side.  Basically cutting me open again and “scooping out” more nodes and testing them to see if the cancer had spread further.  I was just out from an intense major surgery and was dealing with drains (very gross) and having my husband have to change my dressings and help me bathing and washing my hair (still had it since chemo came next) and was suddenly thrown into yet another surgery.  This didn’t sit right with me and so I was off to have a second and then third opinion.  One of the Doctors even had a round table discussion about my case with the other surgeons and Oncologists in his practice and also a phone consult with a Doctor at Sloan Kettering.  To my dismay, 9 out of 10 Doctors (like the dentists on the commercials) agreed that I should have the surgery.  Two weeks to the day, out from my first surgery, I was in surgery again and coming home with another drain.

The good news that came out of this was that all of the other lymph nodes came back negative which meant that my cancer had been in the left breast and just started to spread into the lymph area and was only in one node.  The bad news was that the second surgery caused some nerve damage in my left arm and I am still left with numbness, tingling, and limited feeling from my wrist to my elbow.  Also, only one positive node lead to the discussion of needing radiation after chemotherapy.  If there are 3 or more positive nodes there is no question you need radiation, no positive nodes is usually no radiation.  However, 1 or 2 positive nodes falls in the grey area.  I once again headed out to a second and then third Doctor to make sure that I needed more treatment that would surely give me more side effects and possibly lead to more problems in the future, but once again it was agreed upon by everyone that due to the aggressive nature of my cancer and my age that I should do everything possible including radiation.

A side note about drains.  If you ever need them be prepared!  They are pretty gross to have to strip and measure the fluid (luckily I have an amazing husband who would do this for me as it really grossed me out).  They also are uncomfortable to walk around with, but luckily I found some shirts that were made to hold drains in the inner pockets.  Depending on the type of drain, they can be very painful to have out.  Luckily my plastic surgeon put in the first drains and they weren’t bad coming out, but the second one that my general surgeon put in was a much thicker and less pliable drain and when it was pulled out I was in excruciating pain which lasted for some time.  Needless to say, after my third and then fourth surgeries (we will get to those later), I made sure that the surgeon put in the thinner drains.

Three months, two surgeries, many tests, even more Dr. visits, and relentless hours in front of the computer have now passed.  I’m getting ready to start chemotherapy which first involves having an echocardiogram done to make sure the ‘ole ticker is healthy to handle the poison that will flow through my veins.  I’ve been staged (IIA, small tumor but spread to lymph node and other areas in the breast), graded (III, the most aggressive), and given a status (ER-,PR-,HER2+, which only 7 to 12% of women are diagnosed with….there are 8 types of breast cancer….and this group has the worst survival rates).  My Doctor knows that I will have to have very intense treatment due to the aggressiveness of my cancer and my Her2+ status.  Just a decade ago women with this status would die.  Luckily a Doctor in CA didn’t give up his research when the funding wasn’t there and no one would back him and thus Herceptin was developed.  Because of this medication, thousands of women with HER2+ breast cancer are still alive.

I headed into the Oncologist’s office for my blood work (which luckily they will take from my port each time) and then proceeded to the “chemo room”, a room filled with comfy recliner chairs, televisions, blankets, magazines and unfortunately other cancer patients.  I got my port flushed (the smell is nauseating) and then they started the first bag flowing.  I got three bags of medicine.  Taxotere, a very strong chemotherapy drug which causes horrendous side effects.  Carboplatin, a platinum based chemotherapy which eventually caused me to go deaf in my right ear (more on that later).  Herceptin, a monoclonal antibody that interferes with the HER2/neu receptor.  I was also given anti nausea medication through the port.  This combination of drugs is known as the “TCH cocktail.”  I received 6 doses of the “TC” every three weeks and the “H” every three weeks for a full year!

At the first Chemotherapy session I was fairly positive in my attitude and upbeat.  I had generally been pretty healthy up to this point and felt that I would get through with flying colors and no problems at all.  My husband was by my side and we sat talking with some other patients and the wonderful volunteers that help out in the Chemo room.  I learned from others that in about two weeks I would lose my hair and that the range of side effects was very individual to each person.  The day after each treatment I had to return to the Oncologist’s office to get a shot of Neulasta, a drug which helps build white blood cells as the chemo kills them making you very prone to infection and other illnesses.  Given my needle phobia, I did not like the shots but once again the wonderful nurses would freeze my arm as much as they could and so I was able to survive.  What the shot does to your body is at times unbearable.  For a few days, your whole body aches in pain. You can’t move and every last cell in your body feels like it is under attack.  Your bones are building the amount of white blood cells in hours that they normally build in days or weeks.

Once over the pain from the Neulasta shot, the chemotherapy side effects kick in.  Because of the anti nausea drugs given at the infusion I luckily never find myself throwing up or feeling overly nauseated, however there are SO many other side effects that happen that you don’t see on made for tv movies or hear about.  I started having chronic diarrhea after my first round and for 6 days could not control it.  I lost 13 pounds and became dehydrated.  I was drinking Gatorade, children’s Pedialyte, and Ensure to try to stay out of the hospital.  I developed a strong aversion to smells.  My body became fatigued.  I craved certain foods and couldn’t stand to look at others.  I had back pain, heartburn pain, stomach cramps and a low-grade fever.  My mouth and gums started bleeding and my nose became runny, red and raw.  My tongue was numb and a metallic taste was in my mouth that would not leave no matter how much I brushed my teeth or ate the suggested lemons.  I found myself being prescribed more medication to counter the side effects and I began to lose my positive attitude and question if I would be strong enough to do this 5 more times.  I would break down in tears every night and my husband would just hold me and let me cry.

Two weeks out from the first chemo, to the day, my hair started falling out.  It came out fast and in clumps.  My head became very sensitive and ached.  I wasn’t really fearful of loosing my hair at first, after all it was just hair and I knew that eventually it would grow back.  What was more shocking was loosing all of my body hair.  The hair on my legs being gone was a plus but I would shave twice a day for the rest of my life to not have to bear the loosing of my eyebrows, eyelashes and nose hair (which caused my nose to run constantly.  My BFF from college and her 3 sons came to visit from out-of-state and they watched as my husband and children shaved my head.  We made a party out of it which really helped the whole family with this hurdle.  I was also lovingly showered with gifts from all my friends and supporters.  Unbeknownst to me, my friend had collected money from others and bought me a new iPad and accessories to help me through my treatments and cancer journey (it’s humbling to know how loved you are when you become sick).

I tried all the options after shaving my head; wigs, scarfs, hats, but stuck with hats in the end.  Living in FL it is very hot wearing a wig and scarfs always made me feel more like a cancer patient and I just wanted to be “normal.”  I didn’t mind the shaved head at first.  It didn’t look that bad.  But eventually even the little stubble falls out and you become shiny bowling ball smooth bald!

Round 2 and 3 of chemo were not as bad as the first (thank God).  The Neulasta shots were still horrific.  The fatigue was still there.  I still fought with weight loss and stomach issues but after a few weeks it lightened up and I did have a good week before the next treatment.  Rounds 4 to 6 became difficult again.  The fatigue that was building up in my system was taking over and I had difficulty walking to the end of the street to put my girls on the bus in the morning.  Then it became difficult to walk to the end of the driveway to get the mail.  Eventually, I had difficulty getting up and walking to the bathroom!  My husband, who has a heart of gold and inner strength of Zeus, would take care of the kids, cook me meals, dress me, bathe me, and move a lounge chair into another room so that I could sit comfortably and watch a movie with my kids since it was one of the only activities I could do with them.

After 6 rounds of “poison” and “shots of pain” I was done with chemo and ready to give my body a brief break before starting 28 rounds of radiation.  The process for radiation I learned is quite complex.  You have to have more scans and x-rays done.  They have to line you up properly with all of the machines and actually tattoo you (yes more needles…yuck) in order to properly place you on the table each time you come in for treatment.  I have 8 purple dot tattoos now to go along with my 5 surgery scars.  Because my cancer was on the left side they also had to be careful as to not hit my heart with too much radiation.  Due to the fact that I had the cancer in my lymph node I had to have the radiation over my left shoulder, across my shoulder-blade, back, under my arm pit and across my chest.  At this point, I was continuing with my Herceptin infusions and blood work every three weeks, echocardiograms every three months and now radiation every day (M-F) for 28 sessions.

After the chemo and before starting the radiation, I did have a second PET scan.  Luckily I was able to find a center that would do the PET through my port so that I didn’t have to undergo the torture of 5 needles again trying to place my IV.  Did I mention that I have a fear of needles and I blew out both of my IV’s during my first surgery.  Great news!  The PET came back clean…no signs of cancer at this point.

The radiation started out alright.  I was having very little side-effects and just feeling glad not be taking the chemo anymore.  But then I started to develop lymphedema in both of my arms and edema in both legs (most likely an effect of the chemo).  I was swollen up like a balloon and needed to go on water pills, have PT 3 times a week and wear compression sleeves and stockings on all four limbs (talk about looking attractive).  Through it all, none of my radiation treatments were stopped or postponed, we kept pushing on.  I had a consultation with a Vascular Surgeon who seemed stumped and just suggested waiting for the chemo to get out of my system.  Eventually the swelling and fluid retention did go away.  But as most cancer patients know, you give up one side-effect just in time for another to start.  At this point all of my toenails and fingernails started to lift from the nail beds and die.  Off I go to see a Dermatologist.  Once again, I was told that it was a side-effect of the chemo that happens rarely but does occur with some patients and that eventually they will grow back normally (16 months since chemo started they are still lifted and down right gross).

Trucking right along, I continue with radiation which is now starting to burn my skin.  At first it starts off as a bad sunburn and makes wearing clothes difficult as it hurts and is very sensitive.  I start slathering on all the organic and expensive creams to try to save my skin as much as I can.  Meanwhile, I am plagued by horrible shoulder pain in my right shoulder at night when I am sleeping.  I wake up regularly in pain and don’t know what is causing this.  Yep, you guessed it, off to more Doctors.  First I get sent to the hospital for a Portogram (test to see if my port has a clot).  Luckily, all is good with the port.  Off to have a venous doppler done on the shoulder to look for a blood clot and then an MRI.  We find a tear in my rotator cuff that I believe was caused during surgery (I had done nothing to cause a tear and it was consistent with research showing injuries that can be caused during surgery).  Since I am undergoing so much at this time I decide to forego any treatment for this issue, heck a tear in my shoulder is nothing compared to cancer.

With Chemo over and Radiation under by belt, I was letting my body try to heal a little before starting the expansion and reconstruction process.  I know that I again am not a typical case since I have very little skin and now the skin that I do have on the left radiated side is pretty much ruined.  After several weeks I go into my plastic surgeons office and start the “fill up” process.  Normally one would receive approximately 100 to 150 cc of fluid at each visit.  I received 50 and felt like I was back to my tiny bump stage.  It was a little tight and uncomfortable but bearable.  The next two “fill ups” were a little more uncomfortable.  I was sore and it was very foreign to have these hard objects under my skin.  Eventually the radiated side was very painful and became red and infected.  Hence, surgery number 3!  My Doctor felt that I needed to get the expander out and “power wash” me so that the infection wouldn’t spread.  He decided to do the exchange surgery, swapping out both expanders for the “real” implants two months ahead of schedule.  I was leery at first because I knew that my Radiation Oncologist said that under no circumstance was I to have my skin cut for at least 3 to 4 months after radiation.  I shared my fear and concern with my Oncologist who picked up the phone and called my Radiation Oncologist to let him know of the situation.  She woke him from a sound sleep as he was on vacation in Las Vegas and it was only 5am there.  I love that about my Oncologist, that was the third time she picked up the phone with me in her office and called another Doctor direct about my case.

While I was a little leery initially about the surgery, I knew that it had to be done and then I tried to look at the positive, one less surgery down the road (or so I thought).

In December, with chemo and radiation over, I was due for another PET scan.  I was expecting it to be clean since my last one in March was and I had undergone more treatment.  How could anything grow in this body?  The results showed a small spot on my right breast, a small spot on my right rib, and a small spot on my left lung.  Oh no, I can’t start all over again!  Into my Oncologist office I go.  She reassured me that the two spots on the right side were probably “hiccups in the test ” or caused by scar tissue from the surgeries.  The left lung was more of a concern because this was the side with cancer but she said that it was so small she would just recommend a follow-up PET scan in 3 months.

I was done with chemo, done with radiation, had my reconstruction done and my PET scan was in the back of my mind not causing too much anxiety.  All was good with the world.  However, once you have cancer you never know what is around the next bend.  I went to bed one night in December (12 months into my journey now) feeling fine and woke up not being able to hear out of my right ear.  At first it was like having water in my ear.  I did the usual jump on one foot and shake your head, even though I hadn’t been under water recently.  I ignored it for a couple of days thinking maybe I was getting an ear infection but as it worsened rather than got better.  I started to panic.  One thing you should know about cancer, it makes you think the worst at times and I was not immune to the dark thoughts.  I started to google my symptoms and feared that my cancer had spread to my brain.  I was sent to my PCP as the Oncologist said that it could not have been due to the chemotherapy since I finished it nearly 5 months ago.  My PCP ordered blood work and an MRI of my head.  Hooray…no brain cancer!  I was then sent to an ENT specialist who informed me that I had SSHL (sudden sensorineural hearing loss) which 90% of the time has an unknown cause, no real treatment, and only 1/3 will spontaneously recover their hearing usually if the loss is not severe.  He then sent me to an Audiologist for testing, put me on Prednisone, stating that it probably wouldn’t help but it was protocol, and sent me on my way.  The prednisone made me sick, made my face swell, made me irritable (more than normal) and did not help my hearing at all.  I stopped taking it.  The Audiologist tested my hearing in a sound proof booth with a lot of expensive looking equipment (my insurance is hating me by this point), and then gave me a print out showing 100% hearing in my left ear and 0% in my right.  She said that I had profound hearing loss and reiterated that the outlook was bleak.

Back to the computer I went.  Hearing loss was terrifying, annoying, and frustrating!  My family was getting use to me saying “what” all the time but I wasn’t. I couldn’t hear anything if there was background noise or loud noises around me.  I couldn’t see myself living like this and wondered “why me” after all I had already been through.  After three days of searching and searching the internet, I found out that the cause can be from damage to the hair cells…light bulb comes on….chemo kills hair cells.  Then after searching some more I stumbled upon a study done overseas in which hundreds of people (suffering from SSHL) were given over the counter high doses of Vitamin E and their hearing improved.  Giving me more hope, even those with severe hearing loss improved and the mean time from when these individuals stopped chemo to when they suffered the hearing loss was approximately 150 days and I was on day 139 when I woke up deaf.  Through more research I found out that the Carboplatin chemotherapy, which is a platinum based chemo, has a rare (there’s that Barry luck) side effect of hearing loss called ototoxicity.  I began my own regimen of high dose Vit E twice a day and within one short week I noticed that I could hear loud sounds by my right ear.  After another week softer sounds were registering.  I went back to the Audiologist to get retested and my hearing went from 0% to 36%.  Another week and it went up to 75%.  One more week and I was back to 100%.  I had cured my own hearing loss!  Needless to say I made photocopies off all the research and gave copies to the Oncologist, ENT and Audiologist who were all shocked.  Lesson learned….don’t give up and be your own advocate along every step of the way.

Ring in the New Year!  2012 is going to be my year, after all it just can’t be any worse than 2011 was…right?  I was planning a trip with five other Young Survivors in the area to go to New Orleans in February for the annual Young Survival Coalition Conference.  I was seeing the final stretch of my infusions coming up and feeling really good physically and mentally.  Then, wouldn’t you know it, five days before I am scheduled to leave town for the conference a problem arises.  Since the exchange surgery in November my left side has been slow to heal.  Everyone, including myself, chalked this up to the radiated side taking longer to heal.  Well, you can imagine my horror when I stepped out of the shower one morning and saw my implant sticking out of my skin.  Once more I find myself in my plastic surgeons office and am told that I must be in surgery the next morning.  NOOOO I am thinking, not again, and I WILL go to this conference.  I go in for surgery to have the implant removed three days before my trip.  Once again I am flat as a pancake on one side.  The drain is annoying and I convince the Doctor to let the nurse yank it out the afternoon before I hop on the plane so I don’t have to deal with it on the trip.  Where better to be and to get support for my latest situation than at a conference surrounded by hundreds of other women at all different stages of their breast cancer journey.  I quickly adopt the nickname “Uniboober” and have a wonderful time in the Mardi Gras city.

It’s now March and I’m ready to do my follow-up PET scan.  Wait there is a glitch…surprise, surprise.  My new insurance decides that they won’t approve a PET scan.  WHAT?  But I have 3 spots on my previous scan and need to know if they have disappeared (fingers crossed) or grown and need to be biopsied.  My Oncologist calls and does an appeal over the phone with the insurance Doctor who proceeds to deny it.  My Oncologist asks for a CT scan of my chest and abdomen with and without contrast and the only thing that the insurance Doctor will approve is a CT scan of the chest with contrast.  This is where my anger boils over.  They want me to do a CT and if something shows up then a PET scan will be approved.  Then I will be exposed to twice as much radiation (and they will have paid for 2 expensive tests) and I’m already glowing in the dark.  If nothing shows up I will worry forever thinking that something was missed as we will be comparing apples to oranges.  I decide to go ahead and have the PET scan and pay out-of-pocket.  For piece of mind it was to me priceless and the right decision.  The PET scan showed that the right breast and right rib spots were gone….Hallelujah!  The spot on my left lung however was deciding to stick around.  The good news is that it had not grown in the three months and so my Doctor was comfortable with wanting to just take another look at it in six months.

March 27th.  My last infusion of Herceptin.  The day I dreamed about as an end to treatment (other than follow-up blood work and scans).  My journey will still continue, as I will still have to undergo more surgery down the road for reconstruction, (no one really ever tells you how extensive this process is when you first get diagnosed) but this was still a very big day.  I went to my Oncologist’s office to get “hooked up” one last time. As I was in the chemo room waiting for the nurse to come all covered in her protective gear to access my port and start the medicine dripping through my veins, my husband walked into the room. For all of you who tear up easily like I do, now is a good time to grab a tissue. He was holding a bouquet of flowers, a congratulations balloon and he handed me a small box as tears started to flow from his eyes. I opened the box and there was an Everlon (love knot) diamond ring. What a guy! After all he had endured and put up with over the past 15 months he still was there supporting me and showing his undying love. Not only did I start crying, but one of the new patients that I had just met started too. I’ve always said that he is a “keeper”.  Sometimes I think that the caregivers have a tougher time with the cancer than the patients.

Now that my infusions are all done……a big jump on the couch Hooray…..I will need to have follow-up blood work every three months and I will keep my port.  At my first follow-up in July my blood work all looked great.  My white and red blood cells are still low, which is to be expected, but slowly climbing back up.  I am scheduled to have more blood work done in October and also a CT scan for the spot on my lung.  I am scheduled for follow-up with the plastic surgeon in September and I’m sure that the next surgery will be a challenge (may even involve a GAP FLAP procedure) but to me this is all superficial as long as I am not battling active cancer.

So, all of that being said, what am I now doing different?  Well, first of all I stopped eating meat, dairy and all animal byproducts.  This at first seemed difficult as it included not only giving up red meat, chicken, fish and all other meat, but also cheese, yogurt, and anything made with milk and eggs. I also gave up caffeine (except for the rare sneak of organic dark chocolate), sugar and alcohol.  Well, most of the alcohol.  I will have an occassional glass of red wine.  I did not do this all at once.  That would be insane.  But over time I would just stop these things as I found awesome alternatives.  I started to eat some soy products at first but then with more research chose to stop this also.

So, what do I eat?  A LOT!  It is amazing how many wonderful things you can eat and make out of vegetables, fruits, nuts, seeds, beans, and whole grains.  With my Vitamix in one hand and my KitchenAid food processor in the other, I am a force to be reckoned with.  I eat a lot of good fats, like olive oil, coconut oil, avocados and nuts every day. I have green smoothies every day.  I drink lots of pure water and green tea every day.  I eat salads and more vegetables everyday.  But there are so many more things too.  I have roasted vegetables with quinoa (a wonderful high protein food).  A huge variety of soups ranging from vegetable bean soups to creamy carrot or pumpkin bisque to a cold melon soup.  I make all kinds of varieties of humus and sauces and dips that are raw and organic and have no chemicals in them.  Nothing processed.  Nothing fried.  Nothing with the four whites…..white flour, salt, sugar or crack (hahaha…definetly no drugs).  I grow herbs and use all kinds of spices like turmeric and cumin and garlic that help prevent cancer.  I even eat desserts occasionally, but they are not the cake, ice cream, canoli and cheese cake that I use to eat.  I make chocolate date nut cookies made with almonds, hazelnuts, dates, almond milk, coconut and raw cocoa powder….that’s it….and they are so delicious.  There are so many awesome raw recipes and recipes that are healthy and delicious out there.

I also exercise every day (ok, nine out of ten days).  I walk 4 to 5 miles with my wonderful neighbor.  I swim laps at a town pool with my daughters.  I ride my bike around the neighborhood.  I kayak with my husband (my favorite Sunday morning activity).  I keep moving.

I do other things as well, like dry body brushing every morning before I shower.  Oil pulling first thing when I wake up every morning.  And silent meditation, prayer, and giving thanks to everything and everyone in my life.  The support that I have received from friends, old and new, from around the country has been overwhelming and humbling.

I now want to share all these things with you.  I have endless recipes and topics related to healthy living and alternative ways to get or stay healthy that I will be discussing in my Blog.  I want to help others avoid illness and disease and everything that I went through.  I hope that you will “Follow” me as I continue to be a Healthy Cancer Chick and a Happy one too :)

UPDATE 4-25-13

I decided to do reconstruction surgery in New Orleans.  After months and months of research I felt that my best option was to do double hip flap surgery in which the doctors took out my right implant and from the fat, skin, and arteries on my hips built two new breasts.  I did this at the St. Charles Surgical Center with the doctors from The Center for Restorative Breast Surgery.  The doctors at this center pioneered the hip flap proceedure and have been doing this surgery at The Center for ten years.  They have dedicated their lives to only doing breast reconstructive surgeries and I can’t emphasis enough how caring, empathetic, knowledgeable, and successful they are.  The doctors work in teams and continue to support and better themselves with every patient.

I had stage one done at the end of Nov. 2012.  It was intense, I’m not going to lie.  I was in the hospital for five days and had to spend a total of twelve days in New Orleans.  I had four drains, two of which came out after one week before I came home, but the other two lasted for four and a half and eight weeks!  This was the worst part.  Luckily my husband and sister helped out and were willing to empty my drains and “paint” my incisions with iodine and help me through the recovery.  I still have a weak stomach for things like that.

Stage two was much easier.  I did this stage at the end of March 2013.  Only one night in the hospital and five days in New Orleans.  NO DRAINS!!!  There was a lot of bruising all down both hips and legs but they have almost completly gone away, four weeks out.

Yes, I have many scars.  Battle scars to remind me what I’ve been through these past two years and also to remind me how lucky I am to be alive.  I’m looking forward to buying new bras and a bikini :)  I’m very happy that I have no implants that could fail agin, that would need to be revised, and that don’t look natural.

I did have a scare at stage one when they did a CT scan before surgery.  They found four spots on my lungs that had never been seen before.  In the past it was only one very small spot and these four were larger.  However, we went ahead with the surgery hoping that they were just missed by different types of scans in the past and that they were due to prior surgeries, colds, or anything other than cancer.  I repeated the CT scan when I went back for stage two in order to compare using the same machine.  Great news….the same four spots without growing in size or multiplying, so we are hoping that means no cancer.

I’m still not “normal” and never will be if you define “normal” as what I was prior to the cancer.  My hair has not been growing back in.  I believe that is due to Taxotere toxicity.  But I am getting hair pieces (smaller and more comfortable than wigs), still wearing hats, and accepting what I have.  I need to do some more physical therapy to regain my strength and range of motion, but I’m on my way.  I will continue to exercise, breathe deep, eat healthy, and be thankful for everyone that has been supportive in my life.  Now it’s time to pay it forward and help others.

Update March 2014

In January (2014), almost three years to the day that I found my breast cancer lump, I found yet another lump (heavy sigh).  FYI…within the first 5 years is when most reccurences happen with a peak at 3 years.  I told myself it was scar tissue and ignored it for a while but the “eating away” at my brain got to me and so I went to see my Oncologist.

She said that she was afraid that it was indeed a recurrence of cancer and sent me to have a mammogram and ultrasound.  After the tests, the radiologist said that he didn’t think it was cancer.  I went back to the Oncologist and she said she wasn’t convinced and still thought it could be so she sent me off to Moffit Cancer Center in Tampa.  There the surgeon looked at the films and said he didn’t think it was cancer but then felt it and changed his mind to “he’s not sure.” The emotional rollercoaster was something else! I’m dying….I’m not dying.  I know I’m healthy and feel great….oh no, is cancer all over my body….no, it can’t be….but it was last time.  The thoughts start to swirl and race.

The Radiologist at Moffit did another ultrasound and said that I actually had about 6 oil cysts (not cancer…Hooray!) and that she was going to drain some of the fluid out of at least the large one so that it wouldn’t calcify and become more painful and also possibly hide any future “issues”.  Yuck…needles….but it was bearable (been through worse).

So, if that wasn’t enough for the new year, I also started bleeding around the same time and needed to have an ultrasound.  The ultrasound showed thickening of the endometrial lining and a cyst on one of my ovaries (here we go again).  I needed an endometrial/uterine biopsy.

Once you stop menstruating for 12 straight months you are considered to be in menopause and chemotherapy quickly threw me into menopause back in 2011, hot flashes and all, so it had been 34 months since I was menstruating.  Blood work confirmed that I was definitely in menopause and depleted of all estrogen and progesterone.

The biopsy was negative (hooray, again…no cancer). The Dr is not really concerned about the cyst on the ovary so we are just going to wait 6-8 weeks and redo an ultrasound.  If no changes, great, if growing, not great.

So the saga continues…..I guess it never really ends….just has quiet times.  I hope that the rest of 2014 is uneventful (in the medical realm anyway).  I still feel great and keep exercising, juicing, drinking my green smoothies, and eating VERY healthy (except when my friend Kelly is a bad influence on me).  The emotional toll and fears that creep up are not pleasant but I AM STRONG and I AM HEALTHY!  That is what I tell myself every day…over and over.

21 thoughts on “Cancer Journey

  1. You go girl!!! You are so inspiring. I look forward to following your blog and trying your recipies. Your fellow canser (don’t give it any credence) survivor friend, Lori

  2. Hi Kristen, thanks for sharing your story! It is very similar to mine, and I had chills reading it. I was 37 and pregnant with baby #4 when diagnosed with breast cancer, no family history, all lifestyle related. My treatment was somewhat different from yours, but all of the steps leading through the surgery were the same. If I had to do it over, I can honestly say I would choose a different treatment path. But when you’re pregnant, everything is “urgent” and decisions are overwhelming and frightening. Over a period of 3 years I went from the Standard American Diet to raw vegan. My family is now living a high raw lifestyle and loving it! Good luck with this blog and your new healthy life. Sharing this lifestyle information is so important to raise awareness about prevention of degenerative diseases.

  3. Hi Kristen, I just finished reading this and did get very choked up after reading the part of your last chemo treatment when Chris gave you flowers and a ring. You have such a tremendous support system and you have remained so positive through all of this which I am sure helped in your recovery. I really appreciate you sharing this with us and good luck with your scan next month. Hope everyone is doing well…..

  4. Wow. Thanks so much for sharing. That is my biggest fear of cancer – the slash/poison/burn. With your back is against the wall. Scary. My take away from your story: don’t give up and be your own advocate along every step of the way.

  5. I’m undergoing chemotherapy for breast cancer (secondaries unfortunately – I had my bilateral mastectomy 10 years ago), and was delighted to find your site and how much we share. I’ve come to many of the same conclusions as you, and am now eating an exciting plant-based, dairy-free diet! I got my Vitamix a couple of months ago, and am really enjoying what I can do with that, especially pure fruit ice creams and sorbets. I’ve recently purchased a dehydrator and so we now have lots of crispy crunchy chips and flatbreads to dip into my dips and purees! I’m not quite as purist as you, and allow myself a couple of cups of coffee a day, and some soy milk/yoghourt, but I’m already finding some amazing health benefits. I’ve always been on the verge of needing medication for high blood pressure, but my BP is now perfectly normal! I’ve also lost 56lbs! I’m trying to walk a couple of miles a day, and am hoping to add swimming when my chemo has finished. The risk of infection in a public swimming pool seems too high risk right now.
    The conventional medics poo poo ‘alternative treatment’ for cancer, but even they seem to give a grudging nod to a plant-based diet and plenty of exercise, so I think we’re doing the right thing.

    • Great to hear from you. Love that your diet has helped your health and weight….keep on truckin :) I would love to get some of your dehydrator flat bread recipes. Good luck with chemo…it sucks that’s for sure but taking care of yourself will help boost its benefits. Take care and thanks for following.

  6. OMG, what an incredible journey. I just scheduled my mammogram which I had been procrastinating on. Thank you for sharing your journey.

  7. Reading your story, So much of your journey has been the same as mine.. I am still undergoing treatment for her2+ infiltrating ductal carcinoma. I too own a vitamix and enjoy using it to make healthy foods for myself and my family. Sadly when I was on chemo I had no taste for anything healthy. As a result I gained 20 lbs on chemo. Thankfully my treatment ended New years eve and I’ve been returning to the heathy eating and vegetable and fruit smoothies. Wish you all the best for a healthy happy life.

  8. Hello! I don’t have cancer but stumbled upon your page and was pulled in because I have a dear friend who has endometrial cancer. Started out as ovarian, later spread to her colon, and now in her liver. They thought she was going to be liver cancer free and had done a banding procedure to strengthen the top 20% of the liver so that they could cut off the bottom 80%. When they went back in for surgery and opened her up the cancer had spread to her peritoneal cavity and they could not do the procedure. Her only hope is chemo or radiation. I have copy and pasted your information on soursop and other recipes to her along with your blog site. I just pray that some of these things will help her. She has a daughter who is pushing up her wedding so she can see it. Please pray for my friend, Deborah.

  9. I am crying reading your story. I am at the part about your hearing loss, :( I am 43 also, I have bad hearing. Can you tell me how much vitamin e you used twice a day? Anything I will try.

  10. Wow, awesome story I cant believe we were going through the same on 2011. I had colon cancer. Went thought surgery twice, chemo for 6 month, ups and downs. But thanks God today I’m cancer free. I eat raw, juice, exercise, pray, meditate, do yoga, dance, run live and love life. I’m 47, mother of three boys 23, 20 and 17. Life is precious! Thanks so much for this blog. I keep thinking on putting mine up, but I keep myself pretty busy. Hugs!

  11. I was googling the environmental working group for information on several things tonight. Somehow I clicked on an ad on the right side of google and got to your page. I am so glad to read it and that you’re well, yet so sad about your journey. I have three children, two with food allergies. I would not be researching and living the way we do now if it wasn’t for their allergies. As a previous reviewer stated we are not as purist as you, but I am trying. We have two nut allergies in our house so the nut aspect is hard for the diet. We are also trying to avoid soy as much as possible. I am uplifted and inspired more now to live a more vegan lifestyle, even though my oldest, the one without food allergies fights it. I am also going to pursue previous liver issues I had in the past, Thank you for profiling your journey and please keep us updated.

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