Movember and more

It is November and a number of men in my precinct are growing their moustaches to raise awareness for men’s health issues such as prostate and testicular cancer.  The Movember foundation encourages men to get involved in their health issues.  It encourages men to be aware of family history of cancer, to adopt a healthier lifestyle, and to get an annual check-up, as early detection can reduce the number of deaths from men’s cancers.  October was a sea of pink.  November is a sea of moustaches of all shapes and sizes.  It’s like big stache fest!  In its early stages, Prostate cancer may not cause signs or symptoms.  Prostate cancer that is more advanced may cause signs and symptoms such as trouble urinating, decreased force in the stream of urine, blood in the urine, blood in the semen, pain in the lower back, hips, or thighs, discomfort in the pelvic area, bone pain, and erectile dysfunction.  Screening tests include DRE (digital rectal exam) and PSA (Prostate Specific Antigen) test.

November is also Lung Cancer Awareness month.  Lung cancer often has no symptoms until it has spread (metastasized).This is because there are few specialized nerves (pain receptors) in the lungs. When lung cancer symptoms do occur, they vary depending on the type of lung cancer and location and size of the tumor. Some lung cancer symptoms are similar to those of other common illnesses such as a cold and asthma.  These symptoms include: coughing, blood in the sputum, shortness of breath, wheezing, pain in the chest, and pneumonia (for local disease, which hasn’t spread beyond the location it started).  Symptoms of locally advanced lung cancer (cancer has spread to nearby tissue and lymph nodes) include: pleural effusion (excess fluid in the lining of the lungs).  pericardial effusion (excess fluid in the lining of the heart), hoarseness, difficulty or pain in swallowing, and a high pitched sound, usually heard while taking a breath, similar to wheezing (stridor).  There are various types of lung cancer.  For information on the types, visit www.lungcanceralliance.org.

Once again I ask for prayers, healing light, positive thoughts, and positive energy for my friends currently battling cancer.  I forgot to mention Bonnie on my last post.  Linda needs extra prayers so please send them her way.  Cancer really, really sucks and the treatment isn’t much better.  I am still dealing with fatigue and brain mush and I completed chemo at the end of July.

I went with my sister Monica to her 30th High School Re-union.  As we are only 15 months apart (two years in school years!), I knew a lot of people.  I had a wonderful time and I danced up a storm.  A couple days later, I was in a lot of pain.  I somehow bruised?? my left breast area.  Too much bouncing knocked the expander out of whack?  I spent the next few days with an ice pack on my chest.  I felt like the character on the movie “Alien” when the baby alien explodes from his chest, except instead of an alien, I thought my expander was going to explode out of my chest.  My breast area was very swollen.  A few days later, I was able to get an appointment with Dr. W (plastic surgeon).  He recommended a chest CT with contrast to see what was going on.  As I had recently had a CT (Cat Scan), I didn’t want another so soon.  I asked if he could remove some of the fluid from the expander to ease the pressure I was feeling.  He removed 30 cc’s of fluid and I felt a lot better.  I returned two days later for a follow-up.  I didn’t develop a fever so at this point, we will keep watch.  No Chest CT, no antibiotics.  I was told to limit my “dirty dancing” in the future.  OK, I know I danced up  a storm, but I wouldn’t call it dirty dancing.  The DJ was playing some great dance music, a lot of early 80’s stuff, I couldn’t sit still.  So……………. I have to take it easy once again.  Zumba is out.  No crazy Tae Kwon Do.  I started using the elliptical machine at work and my stationary bike at home (what a pain in the ass!!! Literally).

Reconstruction will most likely take place some time in January.  I definitely don’t want to do any major surgery before the holidays!

Gillian just finished TKD class.  Gotta go!  Keep up the prayers.  We all could use them.

The empty bag

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.

Bye Bye Boobie.. (Warning..there are breasts in this post!)

On Tuesday I was supposed to get chemotherapy.  I was feeling really tired.  I arrived at my appointment and waited.  The nurse finally called me into an exam room and took my vitals.  My temperature was 101.5 degrees (F).  My temperature is usually 97.9 or low 98’s.  The doctor came in and said, “No chemo”.  I told him what had happened regarding the scar tearing open.  He examined my breast and felt the heat coming off of my skin.  He also recommended that I not get chemo the following week.  Dr. D was pretty certain that I would be getting the expander removed and he figured that I would need time to heal and get over the infection.

I called the Plastic Surgeon‘s (Dr. W) office upon leaving the oncologist. His receptionist said she would call him and get back to me.  About 20 minutes later she called back & stated that the surgeon stated that I should continue with the antibiotics and continue to keep track of my temperature.  If the wound started oozing, or pus started coming out, if my skin got redder, or if my temperature spiked I should call the doctor on his cell phone.

I headed home and vegged out on my couch.  I continued with the antibiotics (Keflex) and Tylenol with codeine.  My temperature started to go down (probably from the tylenol).  I also put an icepack on my breast area to cool down the skin.

Later my temperature went up again.  I called Dr. W and he recommended that I give it another night to see if the antibiotics would do the trick.  I agreed.  I really did not want to have another surgery.

The next morning, my temperature seemed normal.  I spoke to Dr. W and let him know.  I said I would call back if anything changed.  During the day, my temperature rose slightly to 100 degrees.  I took more Tylenol and took a nap.  At around 4 pm, after waking from my nap, I took  my temperature and it was 101.9 degrees.  My skin felt hotter.  I called the doctor again and told him.    The Dr. W said that he could do the surgery that night if necessary or we could try to wait another day to see if the antibiotics would kick in.  At this point I was extremely upset and frustrated.  I knew that the next day would not be a good day for surgery because my son had a bunch of doctor’s appointments scheduled (in order to complete the physical he needed for college) and my husband would be busy taking him.  Dr. W told me to let him know by 6 pm if I wanted the surgery that night.

I texted my oncologist in NYC, Dr. G with an update and he said that he would call the plastic surgeon.

I was going crazy waiting for my husband to come home.  I think I took my temperature every 5 minutes.  I took a tylenol but my temperature only went down slightly.

I called my mom to see if she would be available the following day.  If I had surgery that night or the following day, my husband could still take my son to his appointments.

I ended up opting for the surgery that night.  My skin was getting hotter.  My fever wasn’t breaking.  I was anxious and frustrated and on the verge of breaking down.  I didn’t want to keep waiting for fear that my vanity (not wanting to have only one breast), would cause me to get even sicker.

I called Dr. W and asked him if my oncologist spoke with him.  Dr. W told me that the oncologist wanted him to be aware that I had chemo last week and to be aware of my blood counts.  I asked if the oncologist recommended surgery and was told that the oncologist isn’t the one who recommends these things.  I was on the verge of tears and told Dr. W that I wanted to do the surgery that night.  He told me to head to the Emergency Room (ER) at 6:30 pm and that he would be there around 7 pm.  They would know I was coming.   He also had to call for operating room staff.  (“Same day surgery” would be gone for the day, so on-call people would have to be called in).

I was still really upset.  Charles advised me to take a shower and start getting ready to head to the hospital.  It was after 5:30 at this point.

At 6:30 pm, Charles and I arrived at the ER.  We went to the check-in window and got me checked in.  They knew I was coming.

(On a side note:  the woman at the window, who was clearly younger than me, called me “sweetie” a number of times.  It really annoyed the shit out of both me and my husband.  I know I was on the verge of tears because  I was overwhelmed, but don’t patronize me.  I am not your “sweetie”.  My name is Maria.  I would have said something to her, but I was too upset and I didn’t want to come over sounding like a bitch.  I know Charles bit his tongue).

We were directed to cubicle #9 in the ER.  A couple nurses came in and took my vitals, while another asked questions, whose answers went into the computer.  My temperature was a little bit lower but I had taken Tylenol about an hour or so earlier.  I was given a gown to change into.  They asked me when I last ate (a couple hours earlier) so I could only get local anesthesia.  They stated that Dr. W was due in at 7 pm, but I would have to see the ER doctor first, as Dr. W sent me to the ER.  Charles looked at me and shook his head.  Just more money to bill the insurance company for.  A real “cover your ass” move.  I clearly had a doctor who would be at the hospital shortly to examine me, but  I had to be seen by the ER doctor as well (so he wouldn’t be sued if something went wrong??!!!) I blame this insanity on this litigious society.  Now all doctors must cover their asses at our expense!!!!  The nurses were pretty cool though.  They told me that Dr. W had sent over some orders (blood count etc) that would get done.

The ER doctor came into cubicle #9 to examine me.  “Oh you have a fever?”.  “Yes”.  “Let me check your lungs”.  (They were clear.  No wheezing.  I had been coughing.  A dry cough.  This is how my asthma usually presents itself).  “Well..we are going to do some blood tests, blood cultures,  a chest X-ray..”.  Charles jumps in, “No chest X-ray. That is not necessary.  She is not wheezing.  She’s had enough X-rays, and tests.  She is here to get her expander removed”.  The doctor, “Well, we have to rule out the cause of the infection.”  Charles, “You can see the cause of the infection.  Her breast is bright red”.  The doctor, “Oh it’s just a small dose of radiation.”  Charles, “She’s had more than enough radiation.”  The doctor leaves the cubicle.  Charles goes off.  “They want to do all these unnecessary tests on you.  You don’t need more radiation. You are here to get the expander out.  He can’t see that your breast looks like an eggplant?” (it wasn’t quite that bad)…..”And what was with  that girl calling you “sweetie”.  Did anyone ever teach her manners?  She should have called you Maria, or ma’am, or by your last name, not sweetie.”

Not quite an eggplant!

Not quite an eggplant!

Thank God Dr. W arrived shortly thereafter to stop the insanity.  He took one look at my breast and all he said was “OK”.  He left the cubicle to see if the Operating Room was ready.  He came back and I heard him ask the ER staff about the orders he had sent over.  Someone responded that I was to get a chest X-ray, etc.  Dr. W’s response, “No.  I just want a complete blood count“.  If the surgery doesn’t do the trick, we will worry about everything else later.”  Charles just looked at me and nodded, “See.  I told you that you didn’t need all that other stuff “Dr. Doolittle” wanted to do. He’s just some guy following a book.  Someone comes in with a fever, do this, this, and this.  We know what your problem is.”  When Dr. W came back in, I asked if my breast was red enough.  His response, “It’s definitely red.  Redder than it was on Monday.  If you were my child, I would have tried to wait it out but you are my patient.” As he was leaving the cubicle, Charles stated, “You look good.”  Dr. W was wearing jeans and a blue T-shirt (Adidas I think).  Dr. W made a funny face & left cubicle #9 to get dressed for surgery. I remarked, “Well he is a plastic surgeon.  If he looked bad, I couldn’t see him getting much work!’ Charles and I were able to laugh.  Definitely broke the tension.

Another nurse entered cubicle #9 and he took my vitals.  My temperature was starting to climb again.  He also asked more questions and seemed surprised that this bald woman beside him had a living will and advanced directives.  The phlebotomist came in and took my blood.  The nurse told me to take off the rest of my clothing.  I had been sitting there in the lovely hospital gown and my yoga pants and mint green Converse All-Stars.  I disrobed but left my underwear on.  (Hey..I was cold).  Then I waited…………..

The plastic surgeon came in and told me that everything was just about ready in the ER.  I waited a little longer and ran to to bathroom.  ..In my gown and underwear!  Shortly thereafter I was wheeled into the ER.  It was bizarre.  I have been wheeled into another ER in the past fully alert & I didn’t like it..at all.  Probably the anxiety of it all.  This time I was wheeled in alert and I would be staying alert for the duration of the surgery. I was surprised.  I wasn’t even getting a sedative.  The nurse seem surprised that there was no IV in my arm.  I was surprised as well.

I was hooked up to all of the monitors.  Something cold was put on my left thigh.   My arms were lightly strapped down so I couldn’t move them (which made it very difficult to pop my ears).  But I didn’t panic. The area around my breast was prepped.  Orange colored stuff was painted all over my breast, towels were placed all around my breast.  And Dr. W put some down my side.  He specifically stated that he was doing this because my drawers got saturated on Sunday when he had irrigated my ripped open scar. My response, “Damn..I knew there was a reason I should have taken off my underwear.  I forgot about that!”  Another sterile pad was placed around the area and then the nurse put a drape up.  My comment, “Crap.  Now I can’t watch!”  She replied, “You want to watch?  You are one strong woman.”  I heard that a number of times during the course of the surgery.  I hadn’t expected the drape.   The plastic surgeon or one of the nurses (Mary or Theresa)  told me everything as he went along.  “Your going to feel a little pain.  Stinging.  I am giving you the anesthetic.”  It definitely stung.  I could hear and slightly feel it as Dr. W snipped open the nice neat stitches  (or sutures) he had put in a few days earlier.  He told the nurse that he had stitched me up on Sunday & his whole back story prior to coming to the ER that night.  “You are going to feel some tugging.  The doctor is taking out the expander.”  I felt a lot of tugging and pulling and stretching of my skin. I definitely cursed a few times.   I could see their silhouettes behind the drapes.  I started humming “Me and Bobby McGee”, my favorite Karaoke song, while they worked.  The nurse said I had a nice voice and should sing for them.  I continued humming and asked if they could put some music on.  One of the nurses put an oldies station on.  We started discussing music.  Fluid was suctioned out of the breast area.  Apparently some cloudy fluid had collected in the area below my armpit.  (I had been experiencing pain and swelling in that area).  Dr. W stated that the fluid was to be sent to the lab for a culture because the oncologist would want to know what was causing the infection.  There was no pus.  Dr. W and the nurses remarked at how lovely a breast pocket I had.  (Dr. W had made the pocket previously).  It was pretty funny listening to the banter in the OR and being able to chime in.  They started irrigating the opening in my breast.  It was chilly.  I am happy to report that my underwear did not get wet.  Good job Dr. W and nurses.  Dr. W then began to put the drain in.   Another prick on his end and quite a few “Holy shits” on my end and the drain was completed.  Dr. W began stitching me up.  Then I was all taped up and the surgery was over.  “You are such a brave and strong woman.”  Thank you Nurse  Theresa and nurse Mary.

I was transferred to a bed and was able to sit up a bit.  It was nice not being wheeled into the recovery room and having nurses constantly call my name to try to wake me up nor did I have to hear all the beeping of monitors, when all I want to do is sleep.  I was not nauseous and did not vomit, which is one of  my side effects of general anesthesia.  (The only time I didn’t totally loathe general anesthesia was when I had my double mastectomy.  As I was being admitted to the hospital for a few days, I was allowed to sleep.  I have no memory of the recovery room.  I woke up in my hospital room).

Dr. W left to give Charles an update.  Nurse Mary completed paperwork, while Nurse Theresa counted supplies.  While the nurses finished their paperwork, Dr. W wheeled me into the hallway so that Charles could see me.  The expander was wrapped up in a towel and given to Charles as a gift.  I love his sense of humor.  (There was no one in the area as the Same Day Surgery staff was all gone).  We sat there while Dr. W finished paperwork and we all talked.  Dr. W warned that my fever might spike that night so I should be aware but it would probably be normal in the morning.  I asked if I would need IV antibiotics.  Dr. W stated that we should know tomorrow if my fever doesn’t break.  We then talked about the state of medicine.  About electronic medical files and how the government is asking for more and more information about people in the files.  And how much tougher it is getting to practice medicine.  The costs of schooling is going way up and the pay is going way down.  Etc..  (In a previous blog I wrote about my issue with NYU.  One of the reasons the appointments were running so late was the new computer system that had just been installed.  When I got into the exam room, the nurse basically asked for my whole medical history and entered it into the computer).   Dr. W wrote out orders for the floor nurses and when the ER nurses were finished with their paperwork, they wheeled me up to the 4th floor.  Room 4o1.  On the way, I asked if the nurses were getting paid overtime.  They were “on call”, so they’d be getting paid.

Room #401.  I wasn’t there very long. Maybe 35-40 minutes.  A nursing assistant took my temperature and my blood pressure and a nurse came in to see how I was feeling.  My vitals were OK though my temperature was still a little high.  I was told that I’d  have to pee before I could leave.  I asked for some ginger ale and some water.  I drank a small can of ginger ale and a small pitcher of water.  I was also given some Tylenol with codeine as the pain was starting.  Charles was encouraging me to drink as quick as possible as he really wanted to get home as well.  I called the nurse in, said I had to pee, peed, got dressed.  The nurse emptied my drain and showed me how it works and how to empty it.  I walked over to a wheelchair.  The nursing assistant wheeled me down to the entrance of the hospital where Charles was waiting with the car and we drove home.  We arrived at the hospital at 6:30 pm and left at around 9:40 pm.  Not bad!

I took a look in the mirror.  It’s kind of weird having only one breast.  I know it’s a temporary situation and when chemo is done, I will try the expander route again.  Hopefully next time there will be no complications.  And if there are, we will figure something else out.

Dr. W called me the following morning.  My fever never spiked.  In fact, my fever was gone.  Less then 25 cc’s of reddish fluid had been collected in the bulb of the drain. I spent most of the day on the couch resting and on my hammock sleeping.  My mom and daughter spent the day taking care of me.

Dr. W’s office called this morning.  Still no fever.  Reddish fluid still collecting in the drain.  Hopefully the fever stays gone!  Still taking antibiotics.  I can’t really see the color of my skin because the area is covered in gauze and tape but the area above the tape seems alright and doesn’t seem hot.  I will continue to take it easy today and this weekend.  I see Dr. W on Monday, possibly to remove the drain.  (When I asked him earlier how long I would have the drain, his response, “When it stops draining”.  Wise ass!.  I asked about the results of the fluid culture but they aren’t in yet.

I know this is a long one and just kind of ends.  But my arms are getting tired from all of the typing.  I’ll catch up soon “Sweetie”.

Bye Bye

Bye Bye Boobie

Radiation…again….Burn baby burn..

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