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

The journey continues

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.