Tag Archives: Breast

The empty bag

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the empty bag

Yesterday I had my 18th round of chemotherapy (since January 2013).  God willing, today was the last round of chemo I will ever receive.  I’m almost afraid to write this because I don’t want to jinx myself.  I thought I was done last August after 8 rounds of chemotherapy, when cancer reared it’s ugly head again.  I was planning my return to work & the craziness that would ensue once back.  Though last July, I felt two lumps in my breast, so even when I was saying chemo was almost done, in the back of my mind, I knew something was wrong.

I’m not sure how I feel.  I am happy.  But I am also apprehensive.  I will see Dr. G every month for the next year or so.  I will get blood tests done.  I will have yearly breast MRI‘s (once the expanders are removed), PET Scans, and chest X-Rays.  As time goes on the visits  to Dr. G will switch to every 3 months, then every 6 months, then every year.  I will be fearful every time I have a new ache or pain or bump or lump somewhere on/in my body.  I’ve been through this before, I know what to expect.  But regardless of the fear, I will live my life.  I will enjoy all the time I spend with friends and family.  I will enjoy going to work (for a while at least) because going back to work means that I am normal.  I am well.

My journey is far from complete.  I still have a couple of surgeries to go.  I will probably go with another tissue expander (with implants in the future).  I had a talk with Dr. W.  He removed about 60 cc’s of fluid last Friday from my right breast pocket.  Dr. W will remove the scar tissue that formed (most likely from the radiation).  He will place the expander and either Alloderm or some of my own fat cells in the pocket as well. He will also remove some of the radiated skin.   (I read that implanting fat cells in the area improves the success rate of implant after radiation therapy).  I was seriously considering one of the flap techniques for reconstruction but there appear to be a lot of side effects and the surgeries are long.  I don’t want to be under general anesthesia for hours.

It’s 0200 hours and I planned on trying to sleep but I’ve got too much going on in my head to sleep.  I will type instead.

I went on a bike ride with Gillian yesterday before chemo.  We rode about 10 miles on the Heritage trail.  After a few miles, I switched bikes with her.  She was falling behind & I knew one of the problems was her bicycle.  When you pedal, your leg should be almost straight on the down stroke.  Her legs weren’t.  I looked at the bicycle seat and saw that it couldn’t be raised any higher.   She is 5’10” and I am 5’6″, though her legs aren’t much longer than mine.  I found this out while I was riding her bike.  I couldn’t extend my legs either.  I kept up pretty well until the last two miles.  Then I fell behind by about 3 minutes.  As soon as we got home, I told Charles that Gillian needed a new bike. Charles took her to get a new bike (and while I was at chemo, he called me and told me to look out the window.  He drove by with her new bike, so that I could see it!  I got a better look when I got home).

chemo 18 before

Xavier brought me to chemo.  I stopped and picked up some goodies for the nurses and doctors at the chemo center.  Cupcakes, cake, cookies, and croissants.  I thanked everyone for all their help and I said goodbye to Dr. D.  Chemo went alright but my port was a bitch.  No blood return so Nurse T had to take blood from my arm! We were at the chemo center for over 5 1/2 hours.  When we got home (after stopping at Sam’s Club), Xavier made celebratory scones, using the Tea & Sympathy recipe.  They were good, but they didn’t taste as good as T& S Scones. Why????

On Monday, I went to acupuncture.  As I have been experiencing neuropathy in both feet and legs.  Dr. Shen, placed around 20 needles in my legs and feet (I now have little bruises all over my legs).  All told, I had over 40 needles on my legs, feet, abdomen, arms, face, and head.  A few more and I would have looked like “Pinhead”.  It seems to be helping.

bruised legs

I picked up an ice cream cake and extra “crunchies” for Christian’s 18th birthday.  We sang Happy Birthday, he blew out the candles, scarfed down his cake, and left to take his girlfriend to the Drive-In to see a double feature!  I had just gotten home from a “Look Good, Feel Better”  session at Orange Regional Medical Center that ran a little long.

chris birthday

The session was supposed to go from 5:30 pm-7:30 pm, but we started a little late (partly my fault, ORMC is a new hospital & I went to the wrong location twice before I was directed to the right room).  Also, once the session ended, I spoke with a couple of the women who are also undergoing chemo.  In addition to the facilitator, Angela Cooper, a former English teacher and licensed cosmetologist, and me, there were three other women at the session.  Two of the women, Shelly in treatment for uterine cancer) and Jeannette (in treatment for colon cancer),  had just lost their hair recently (Sorry if I spelled the names wrong.  Chemo brain).  Mine is growing back, though my eyebrows and eye lashes are noticeably thinner.  We received a lot of good pointers.  Regarding my thinning eyelashes, Angela advised me not to use too much mascara so I wouldn’t call attention to the bald spots or spaces.  As for the eyebrows, she advised that pencils aren’t the best for filling out your eyebrows.  They just make your brows look fake.  Of course if that is the look you are going for, knock yourself out.  She used a product called Eyebrow Express, which is like eye shadow for your eyebrows.  It worked really well on Shelly and me.  I’ve got to pick some up.  The other two women had make-up one when they arrived so they didn’t use the products at the session.  Angela applied a lot of my make-up.  I was the guinea pig.  I highly recommend this session to every woman undergoing chemotherapy.  I had tried to apply for an earlier session in May but I didn’t receive a response.  I should have done this 18 years ago!

The idea behind “Look Good, Feel Better” is simple.  If you look good, you Will feel better.  Various cosmetic companies (such as Estee Lauder, Mary Kay, Avon, L’oreal, Elizabeth Arden, Maybelline, Olay, Clinique, Revlon, and Biore) supply products and licensed cosmetologists, estheticians, etc facilitate the sessions.  They go over skin care, make-up application, nail care, and go into hair care and what you can expect when your hair grows back in.  Every participant leaves the session with a make up bag filled with items such as moisturizer, concealer, foundation, blush, face powder, mascara, eyeliner, eye shadow, and make-up remover.  The kits come in light, medium, dark, and extra dark.  I went with the light kit, though the only difference with the light and medium kit appeared to be the lipstick shade.  The medium kit shade was a bit dark for me.  You can find additional information about “Look Good, Feel Better” on the American Cancer Society website.

I still can’t sleep.  The typing continues…………………………………………………Last Thursday, I started taking tap dancing lessons again. I haven’t taken tap in over 21 years.  I am taking the class with teenagers.  (I remember when my mom took dance lessons with me and my sisters when we were teenagers).  I kept up.  I still remember my flaps, shuffles, flap ball changes, time steps (stamp hop step flap step), pull backs, soft shoe, wings, shuffle off to Buffalo, and flap shuffle hop toe ball change turns………………. and Dr. W, I barely moved my arms so my chest muscles are good.  I learned a few new steps.  My balance was a little off.  That could be chemo or one boob so I’m lopsided related or it could be that I haven’t tapped in heels in ages.  We will see.

My throat is still bothering me a bit and I’ve noticed that my voice is starting to crack while singing. Noooooooooooooooooooooooo!  I love to sing.  I must make an appointment with the ENT.  I read posts written by other women who have been on Taxotere and have had similar side effects.  I hope that that is all it is.  My body aches.  My face, legs, and feet are tingling.  Constipation is a pain.  Last week, after chemo, it lasted about 4 days & that is just too long, especially  with Metamucil, a stool softener, and Ex-Lax.  Thank God that is one side effect that should go away relatively quickly. Chemo Brain, finger nails that are pulling away from my fingers, hair loss, weight gain, and the all too present nausea.  Oh the joys of chemotherapy.  May I never experience you again.

xavier and funky feet chemo is done  I AM TIRED & I WANNA GO TO BED.  NIGHT ALL.  MUCH LOVE.

Little Pink Houses

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I’m sitting here at chemo with Xavier.  Once again the nurse was able to get blood return from my port so my arm was spared.  Thank God for small miracles.  The neuropathy continues to be a problem.  I can’t sleep.  The numbness, tingling, and pain continue to keep me awake, as do the non-stop thoughts that run through my mind.  Unisom doesn’t help at all.  My right breast continues to fill up with fluid.  I see Dr. W on Friday, if not sooner.  He will probably remove about 100 cc’s this time.

I got some nice news yesterday.  Back in April I saw an article in a magazine that mentioned a website that caters to breast cancer patients/survivors.  The website is breastcancerfreebies.com. This website is exactly what it sounds like, a place where people affected by breast cancer can find freebies such as wigs, mammograms, scholarships, lymphedema sleeves, retreats, and financial assistance.  I found a retreat that I thought looked interesting: little pink houses of hope.

  • Little Pink Houses provides FREE week-long beach retreats in private homes in North and South Carolina for breast cancer patients and their immediate families. The aim is to promote recovery and reconnection in a relaxing environment. Meals are served in a common area with other families. Activities include fishing, yoga and parasailing. Babysitting is provided so parents can have a date night. Click Here, or call 336-213-4733.

I applied for one of the retreats that same day.  I then forgot about it until a week or so ago.  I figured if we had been accepted, we would have been notified in early June.  Well, yesterday, I received a call and the woman informed me that my family had been accepted.  I guess we were on the wait list.  One of the families that had been accepted had to cancel.  We will be going to Emerald Isle, NC for a week this summer.  I am excited.  We could definitely use the break.  According to the woman I spoke with, all of the families get their own houses for the week.  The house is stocked with breakfast food and some snacks.  Lunch and dinner is usually with the other families.  There are also activities that the families do together. It will be nice to be with people who are going through the same things that you are.  In past retreats, the activities included kayaking, sailing, fishing, hang gliding, golf, stand up paddle boarding, massages, etc.  It looks like a lot of fun.  The only expense to the families is the cost of getting to the location.  We will probably drive down to North Carolina and maybe visit some family on the way.

This morning I did 35 minutes on my stationary bike (the Tour de France model).  I did a part of stage 2.  I didn’t have time to finish the stage because I had to get to my appointment.  I think I’ve only ever done Stage 1, Stage 2, and Stage 3 (not at one sitting, my butt would be hamburger).  In one of my last posts I joked that steroids aren’t included but I realized later that I do take steroids.  Every week.  Unfortunately they are the kind that PLUMP YOU UP.  They don’t PUMP YOU UP.  When all this is done, I’d love to get rid of the spare tire that has been developing in my stomach area.  Damn you steroids.  I always had some junk in the trunk but my stomach was always pretty flat, even after 3 kids.

Just finished up with chemo.  The needle has been removed.  We are heading home.  Later!

PS- Family-  that date that I mentioned as a possible going away party for Chris, it isn’t going to happen.  We will be heading home from North Carolina.

Radiation…again….Burn baby burn..

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Last I left off, I was getting ready to see a radiation oncologist to see if I was a candidate for breast re-radiation.  I made an appointment and saw Dr. E. At first, Dr. E  thought my oncologist lost his mind because you just don’t re-radiate.  The doctor advised that some of the possible side effects to radiation therapy included lymphedema (swelling) of my right arm, rib fractures, heart damage, etc..etc.  Dr. E hadn’t realized that I had been diagnosed with breast cancer for a 3rd time.  Once he understood, he stated that he wanted to put my case before a “tumor board” (basically a bunch of doctors get together to discuss a case), because my case was so interesting and unusual.  Great! My case is interesting and unusual! Why can’t I win the lottery? That would be interesting and unusual!

It was the opinion of The Tumor Board that my third diagnosis (August 2012) was most likely cancer cells that were left behind in the needle track from the needle biopsy I had in November of 2011.  Because I had a skin sparing mastectomy, all of the cancer cells were not removed.  The Tumor Board recommended additional radiation therapy.  Apparently the chemotherapy I was on at the time, did not kill the cells that were in my breast.  A doctor (can’t remember which one) told me that it was possible that the chemotherapy didn’t stop the tumor growth in my breast because I had so much scar tissue, so the chemotherapy didn’t circulate through the area very well.  Dr. E also recommended I get a second opinion with a radiation oncologist who dealt solely with breast radiation.  He recommended a specific doctor based out of NYU.

I was able to get an appointment for 10 days later with the doctor (Dr. F) at NYU.  My appointment was scheduled for 11 am.  I arrived at 10:30 am.  When I paid my co-payment, I was given a receipt and when I looked at the receipt, the doctor listed wasn’t Dr. F  & my appointment time was changed to 12 pm.  I brought this to the attention of the receptionist and was told that Dr. F was busy and that I was going to see a doctor that worked closely with Dr. F instead. (No one called me to tell me that my appointment time had been changed).  This doctor was also running behind schedule & the receptionist was unsure as to when I would actually see this other doctor.  I had plans to go to lunch so I asked if my appointment could be rescheduled until later.  I rescheduled for 2:30 pm.  I returned at 2:20 pm & the receptionist seemed surprised to see me.  I was brought into an exam room and a nurse entered a short time later.  She told me that they had just started using a new computer system so they were running behind.  About a half hour later, a very young looking doctor came into the exam room and started examining me.  I asked how old he was because he looked very young.  It turned out he was Dr. F’s intern.  I had no problem being seen by an intern because I know that doctors have to train & I was informed that the other doctor would be in shortly.  Apparently the doctor was discussing my interesting and unusual case with other attending doctors.  I waited about an hour for the doctor to come in an examine me.  He did an exam & then explained the possible side effects and various techniques they could use for radiating me (radiating twice a day).  He then explained that since I had such an unusual case, he really wanted me to see Dr. F.  Well Duh! That’s who I made an appointment with in the first place! He told me that it would be at least an hour as Dr. F had some sort Dept. Chair meeting (or something).  I could have left the office and come back but I was wearing  heels and I didn’t feel like walking around the city.  I didn’t see Dr. F until a couple hours later and I was totally confused by what she had to say.  I think I was at the office for far too long.  I started to feel like I was in a Charlie Brown movie. After listening to 3 different doctors, all I heard was “wah wah wah”.  The bottom line was that Dr. F recommended that I be re-radiated as well.

*Recommendation from me- the first time you see any doctor, don’t go alone.  I was overwhelmed with information & after awhile, I heard nothing.

The day of Superstorm Sandy, I had a PET Scan. When we left the office, the wind was whipping like crazy.   I am not good with MRI’s and PET Scans.  I never used to have a problem with these tests but now I get anxiety and I freak out.  Xanax anyone?  The PET Scan results were negative, thank God.

I started radiation therapy about a week after Superstorm Sandy.  Prior to radiation starting, I had a CAT Scan to map my right breast.  This occurred about a week before I actually started.  The physicists do their calculations and a radiation plan is made.  A foam-like form is also made prior to radiation therapy.  The form is made so that you are always in the same position during radiation, with your arm over your head.  I went to radiation therapy for 5 days a week for approximately 7 weeks.  The areas radiated included my whole right breast, my armpit, the subclavicular lymph nodes, and the mastectomy scar.  I ended up with a very nasty looking radiation burn.  Every day, I put Aquaphor on my breast.  I also had prescriptions for hydrocortisone & silvadene.   Right before Christmas, Dr. E gave me a week off from radiation because my skin was looking really crappy.  My right underarm was peeling and my breast was extremely itchy and achy.  On Christmas day, I ended up having an allergic reaction to something (possibly a combination of the silvadene cream and shrimp) and spent the evening in the Emergency Room.  This was after an EMT and paramedics showed up at my house.  It was quite the adventure.  NOT! I finished radiation on January 7th, a few days after my 46th birthday.

The actual radiation therapy itself doesn’t take very long.  I’d show up at the radiation center, change into a gown, sit and drink some hot cocoa & wait to get called into the radiation room. Before I entered the room, a radiation tech would scan my bracelet.  I’d enter the radiation room, the tech would lay a sheet and my foam like form onto the table.  I’d lie down and the tech would place the radiation machine in the proper position and then leave the room.  Then the machine would start doing it’s thing.  The actual radiating took about 2 minutes.  Sometimes the techs would take a few X-Rays, so it would take a few minutes longer.  Then I’d be done.  I’d leave the radiation room & change back into my street clothes.  Once a week, I’d see the radiation oncologist, Dr. E or Dr. G & then I’d be on my way.

Besides the nasty radiation burn, my side effects included fatigue, and itching and pain at the radiation site.

Radiation burn

Radiation Burn

The journey continues

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So August 22, 2012, I found out that the two lumps were cancerous and the margins weren’t clean. (Basically both of the little pearls that were removed were all cancer, so I would have to have additional surgery to make sure the cancer didn’t spread beyond the lumps into surrounding tissue).  I had additional surgery on September 13, 2013.  My nipple (which had been saved with the skin sparing mastectomy) as well as about a couple inches of skin were removed.  Thankfully, no further cancer was found.

Prior to the re-excision (as the surgery was called), my surgeon wanted me to get a breast MRI so he could be sure that there was nothing else he needed to remove.  I went to the Imaging Center, had an IV started because the surgeon wanted an MRI with and without contrast, and then found out that the tissue expanders that were implanted when I had the mastectomy were NOT compatible with an MRI.  Aargh!  It took long enough for the nurse to find a vein in my right arm, just to have the IV removed.  I wish I would have remembered to read the little card the surgeon gave me after my surgery in January, I would have saved myself some time and pain in my arm.

After the surgery in September, I went to a number of doctors.  My oncologist wanted to start me on additional chemotherapy, a six month regimen of the drug taxotere.  To lessen the side effects, he recommended I receive chemotherapy once per week for three weeks, followed by one week off.  My oncologist also wanted me to see a radiation oncologist to decide if I should receive additional radiation to my right breast.

Definitions and explanations

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I got some feedback from friends regarding my first post.  There were a few technical terms that I didn’t explain.  I have been reading, writing, and living this stuff for over 17 years so I wasn’t thinking like someone brand new to breast cancer.  I will edit my previous post but for now, I will explain a few of the abbreviations, acronyms, etc that I mentioned in my previous post.  Thanks for the feedback.

Triple Negative– a type of breast cancer.  Triple–negative breast cancer refers to any breast cancer that does not express the genes for estrogen receptor (ER), progesterone receptor (PR) and Her2/neu. It is an aggressive type of breast cancer.

CMF– Cytoxan, Methotrexate, 5 Fluorouracil.  A breast cancer chemotherapy regimen.  I was on this regimen from February-August 2012.

FAC– 5Fluorouracil, Adriamycin, Cytoxan. A stronger breast cancer chemotherapy regimen than CMF.  I was on this regimen from October 1995-March1996.  Adriamycin is toxic to the heart.

Taxanes– a class of chemotherapy drugs, including Taxol and Taxotere (the drug I am currently taking).

Neuropathy– damage to the nerves.  In my case-pain, tingling, and numbness in my extremities (especially my feet).

mammogram– basically a breast X-Ray

sonogram– an image made from sound waves (another diagnostic tool).  A sonogram can show whether a lump is a solid mass or a cyst (fluid filled).

MRI– Magnetic Resonance Imaging.  Another diagnostic tool.

OWS– Occupy Wall Street

Thanks for all the feedback everyone.