2nd AC chemo

My youngest sister Karen went with me to chemo today and I was relieved to have the same excellent male nurse I had last time.  After coming home and resting for a little while, I wanted to go to the New Year's Eve service at the meditation center, but I didn't think I should drive.  Thankfully, my neighbor offered to go with me.  At the end of the service, everyone wrote down all the thoughts we wanted to release.  Then we completed a walking meditation to a fire pit, where we threw our released thoughts. It was very powerful and I felt very strong and relaxed as I went to sleep, saying goodbye to 2013.

1st AC chemo

After several false starts, it felt good to finally have the first chemo treatment underway.  The UNC hospitals infusion center is very comfortable, full of natural light, and well staffed with excellent nurses.  I had a male nurse with a military background - I've consistently found I really like the manner of these nurses, and I felt fortunate to have him assigned to me.  Maybe it's because I think about the likelihood that they've seen circumstances so much worse than mine, it helps to keep things in perspective.

Home health

I worked in home health for five years, so it's interesting to be a patient.  I'm "homebound" for infection control purposes, which means I can't leave home for two weeks except for medical appointments.

The timing at the end of the semester is a bit difficult, but thankfully my students can post all their assignments online, so I can easily do my grading from home.

Hospital Discharge

I met all the criteria for going home (normal lab work, home health set up for monitoring my wound care).  I received excellent care but I was quite happy to get out of there.  Now I have to do twice daily dressing changes for about two weeks before I can start chemo.  It's hard having the onset of chemo delayed but I'm relieved to know that the wound is "clean" now and will heal the way it's supposed to.

Re-opening the Wound

In the morning, a surgical oncology fellow came to see me.  She asked me in a scolding tone why they had drained my seroma and inserted a drainage catheter.  She asked me if I had any pain or sign of infection.  I said no, I had discomfort, but not pain, and I didn't know why they decided to drain it. She said any time any insertion takes place it introduces a risk of infection, and a seroma is normal and will go away on its own.  I told her I had no way of knowing this and that maybe they should have had a doctor examine me, instead of a nurse.

She told me my options were to get another drainage catheter or to open and drain the abscess.  I said I wanted them to do the most aggressive possible thing to resolve the issue because I was stuck in a no man's land between diagnosis and treatment, and my chemo had already been postponed multiple times.  She told me I would have to have twice daily wound care and asked me if I could do it.  It would be impossible to maneuver your hands to do that to yourself, so it was a bit of an odd question, but I told her I was confident someone would help me with it.  She said the operating room was fully booked due to the holiday weekend, and they would try to get me in as an "add-on," but it might need to wait until the next day.

About an hour later, another resident came in.  He said they had called my surgeon and he told them they could perform the procedure in my room.  My regular nurse told me the resident was excellent and would do a great job.  He returned a little later with a cart and a surgical nurse to assist him.  The procedure was done under local anesthetic and afterward I immediately felt very relieved.

My ex-husband brought my son to visit me later and while they were there the nurse came in to perform wound care.  I told my son it wouldn't hurt my feelings if he wanted to go out in the hall while they did that, but he decided to stay in the room.  I felt very proud of him.  It also made me realize that he wants to have all the facts and information about what is going on.

Admitted

As soon as I woke up, I knew the infection was definitely worse.   A large area around the surgical site was red and inflamed.  But I had plans to go to the Won Buddhism Meditation Temple with my brother, sister and my stepfather who was visiting from Michigan, for a Thanksgiving Ceremony of Remembrance in memory of our mother.  We also planned to go to lunch after that.  So I went to the service, which was wonderful (although I was a bit distracted), and when we got to the restaurant, I called the oncologist on call.

The oncologist told me I should come to the ER and plan to be admitted. So I finished my lunch, asked my brother to take my son to get a Christmas tree (which we had planned to do after lunch), and I went to the ER.

It took 3 hours for me get out of triage and into the ER.  However, once I got to the back, this time I had a private room in the ER, with a TV, and I was able to watch a Barbra Streisand concert while they started me on an IV antibiotic.  My brother came to wait with me until I was transferred to a hospital room.  I told him I felt bad to be in that room, because I wasn't really hurt like some of the people in the open areas.  He told me to just try to practice being grateful, which was the main lesson of the Ceremony of Remembrance.

I was taken to an ultrasound lab where the technician confirmed that I now had a fully infected abscess. Looking at the image, I could see the abscess and a line going straight out the hole where the drainage catheter had been inserted.

I was admitted to the surgical oncology floor, which has 24 beds.  The room was very large and well equipped and the area was very quiet.  I felt fortunate to be there rather than in a small regular room in the noisy main hospital.  I thought about how worried my son must be and I prayed for him to sleep well and not worry.  My sleep was fairly interrupted by IVs beeping, blood draws, and vital signs, but overall I was relieved to finally get the problem taken care of.

ER Visit

I called the oncology fellow on call, and she told me to come to the ER and have them page her.  My son has a learner's permit to drive and I had him drive me there.  We were taken back to a large room with 4 different patients separated by curtains, all talking about outrageous topics.  I called my son's dad and asked him to come pick him up so he wouldn't have to listen to all the crazy talk.

It took a long time for me to be seen, because I had to be seen by the oncology fellow on call, who was busy in the main hospital.  After about 5 hours, the doctor came and did an ultrasound that confirmed that I had an infection.  She gave me a prescription for an oral antibiotic and said I seemed like a "good reporter" so they would trust me to come back the next day if it got worse.  She told me if it was worse I would probably be admitted and placed on IV antibiotics.

I had just enough time to get to the pharmacy to get the prescription filled before they closed.

Complications

The night before Thanksgiving, I started feeling a lot of pain in the sentinel node site, and it wasn't relieved by Advil or Aleve.  I was in Charlotte with my family, and I didn't want to interrupt Thanksgiving.  By the time I returned home on Friday night, it was worse.  On Saturday morning, I called an urgent care clinic. They said they couldn't see me because of my "history" and I would need to go to the ER.  I knew that was the absolute worst place for me to get care, but I really didn't have any choice.

Big Hair and Makeup

I knew I would lose my hair about 2 weeks after my first chemo, 

so I asked my sisters to all dress in 80's big hair and makeup for Thanksgiving.  

My sister Karen teased me up some 80s rooster hair - 

although I have to say, my hair was bigger than this in the 80s! 

Not only did they indulge me in 80s hair, we also sang 80s Karaoke!

Chemo, False Start 3

The drainage catheter met the criteria for being removed, so I went to the infusion chair to begin chemotherapy.  Two nurses tried and failed to insert an IV, so they sent for the IV Team.

As soon as I saw the nurse from the IV Team, I knew he was definitely going to get the IV inserted.  He was bald and wearing black scrubs and I could tell he had a military background and had seen it all.  He did an awesome job and they were able to start the infusion of fluids prior to chemo.  However, after that the nurse told me she couldn't get get "blood return" on the IV and would be unable to safely administer the chemo.

Meanwhile, they called for the nurse navigator to come and remove my drainage catheter.  She explained that I would have to have a port inserted in order to receive chemo.  She scheduled this for the following Tuesday.  Another nurse had asked me several weeks prior if I wanted a port, and I asked her, "Does anyone ever want a port?" She said it was easier and safer than administering chemo by IV and sometimes people appreciate the convenience.  In any case, now it's obligatory, not optional.  It's quite a lot to get psyched up for.

Because of the Thanksgiving holiday, they rescheduled my chemo for Friday, December 6, more than 2 weeks after the original start date. 

Chemo, False Start 2

This morning I was re-scheduled to begin chemotherapy.  However, the seroma had returned so they decided it would be best to insert a drainage catheter and postpone the chemotherapy until Tuesday.  Although this would only be a one week delay, it was agitating to think about dealing with a complication when I was still in the diagnostic stage and not yet in the treatment stage.

Having a drainage catheter is annoying because it has to be emptied and measured regularly, it has to be tied to a string around the waist for showering.  The nurse inserted it and removed 220cc.  She said it would remain until I removed no more than 30cc in a 24 hour period.

Chemo, False Start

I was scheduled to start chemotherapy today, but during the last week the swelling in the area of the sentinel node surgery increased to a golf ball size "seroma" (fluid pocket that sometimes develops after surgery).  They decided to drain the seroma and postpone my chemo to Friday, November 22. The nurse removed 220cc of fluid, which is...a lot.

ER Consult

By the weekend I was experiencing some swelling, numbness and general discomfort (not pain) in the area of the sentinel node surgery.  I hadn't been given any information about normal consequences of this surgery, so I was pretty alarmed by this.  After the surgery I was only given a checklist of signs of infection.

I called the on-call oncology resident and described the situation and she convinced me come to the ER and let her look at it.  She took me into a consult room rather than having me check into the ER.  I had my first emotional reaction to the whole situation, and I explained that this was the first time I started thinking about things that could go wrong.  She had a medical student with her and I told him it was a very good experience for him to see the emotional side of things!  The resident told me that my surgeon is "brilliant," that everything looked fine, and it was normal to have some swelling.

I left there feeling reassured but a little annoyed that I hadn't had enough information to know it was normal.  I really hadn't wanted to do a lot of research because there's a lot of alarming information on the internet.  However, when I got home I spent some time looking for info and found this very helpful document about sentinel node surgery from the UK's healthcare system, which included some recommended exercises.

Sentinel Node Surgery

My sister Karen drove me to the UNC Ambulatory Care Center at 6:00 for the surgery to remove the first 3 sentinel lymph nodes on the my left side.  The assisting nurse told me Dr. Ollila had been her surgeon and that he is "brilliant" and "a wonderful family man."  This gave me a lot of confidence, especially because it was the very first time I had ever been fully sedated for general surgery in my life.  The surgery went fine and Karen took good care of me at home until she was confident I was okay.

Pre-Care

In retrospect, pre-care did not explain much to me about what to expect from sentinel node surgery. The nurse took my vital signs and said, "You have low blood pressure for an old gal!" (I think the term for this is backhanded compliment.) She seemed to be the same age as me and considerably out of shape, so presumably her blood pressure is higher than mine. ;)  She asked me what I do at UNC and when I explained that I am a speech-language pathologist, she asked me for advice about her "artistic" (i.e., autistic) grandchild. We discussed this for a while and then she told me not to eat or drink anything after midnight.

Hematology/Oncology

"HemOnc" is the chemotherapy physician.  Dr. Claire Dees immediately struck me as a very compassionate physician.  She explained to me that the results of the sentinel node surgery would determine which of two different chemo regimens I might receive.  If there was no lymph involvement, I would have 4 treatments over 12 weeks. If there was lymph involvement, I would have two separate courses of chemo with 4 treatments each, 2 weeks apart, for a total of 16 weeks.

I told Dr. Dees that I was pretty sure Dr. Ollila was expecting lymph involvement in one node because he palpated it several times and asked me whether I felt anything.  She said there was still a chance that it might not be. In general it's more helpful for me to prepare for the worse option, so that's what I decided to try to do.

Crown Detour

I developed a pain in my lower left molar that felt like another time when I had a cracked tooth.  I called my dentist and begged him to fit me in for an appointment, which he did the next day.  He told me that I would have to get a crown.  I explained that I really needed to get this done ASAP because I would not be able to have any dental work done while undergoing chemotherapy.  He was very caring and understanding and got me an appointment for the crown fitting for the next day, then put a rush order on the crown.  He did expert work, as always.  If you need a dentist and you live near Carrboro, I can highly recommend Dr. Stephen Randall.

Surgical Oncology

As soon as I met my surgeon, Dr. David Ollila, I connected well with him. We're the same age and he spoke to me like a peer.  He explained that the MRI showed a spot on the right side that they needed to investigate further, so I would have an ultrasound on that side, and if they couldn't see it well enough to perform and ultrasound biopsy, I would have to have an MRI biopsy.

He scheduled an outpatient surgery for November 5 for removal of several sentinel lymph nodes.  The results of the MRI biopsy would determine whether this would be done only on the left or also on the right.

He told me that the cancerous cells on the left were in two main sections connected by a small thread, and overall they form in a web, rather than a lump.  This is why it's hard to detect on imaging.  He explained that it would not be possible to do a lumpectomy.  I told him that I had already figured that out based on the diffuse areas that were biopsied, and that I had already decided I was probably going to have the same surgery Angelina Jolie had.  He seemed extremely relieved that I was the one bringing this up and said, "We're going to get you through the next 34 years of your projected lifespan."  He explained that I would first have "neo-adjuvant" (before surgery) chemotherapy, and the regimen would be based on the results of my sentinel node biopsy.  He told me that I would meet with a plastic surgeon prior to the surgery to discuss reconstruction options.  He said that it's not determined yet whether it will be necessary for me to have radiation.  This may depend on how much the chemotherapy is able to shrink the margins of the tumor.  It can also affect reconstruction options, so I'm hopeful it won't be necessary.

My surgeon is the head of the Breast Center at the top cancer research hospital in the Southeast, so I am quite confident I am getting the best care possible, and that is a great feeling.

Radiation Oncology

I met first with Radiation Oncology, which was a bit out of order, because although they told me exactly what was going to happen after my surgery (a specific number of radiation treatments over a specific duration), when I met with my surgeon he said I may not need radiation.  So this is definitely not on my radar until after surgery, when that determination will be made.

MRI

The MRI was originally scheduled for an outpatient clinic.  When I arrived they told me it had been rescheduled for 6:30 pm in the main hospital, but nobody had informed me of the change.  Thankfully, I knew where I needed to go and I had my "stress relief" tea with me!

This was my first MRI and I handled it fine.  I had brought ear plugs for the noise and I was very relaxed.  I'm not claustrophobic so it really didn't bother me.  I just pretended I was on Space Mountain.

1st Acupuncture session

I originally scheduled an acupuncture session for October 3.  My original goal was to find out why I had been feeling so much fatigue.  I had to cancel the October 3 session because of the biopsy appointment.  When I called to tell Andrew this, he said, "Don't worry, whatever the results are, we'll get you through this."  It was very comforting.

When I finally saw him on October 10,  I knew my results and I was going to get an MRI that evening. Andrew spent two hours with me and by the end I was extremely relaxed.  I slept very well that night.

D-Day (Diagnosis)

My nurse navigator called me to tell me...It is breast cancer, it's very slow growing, which is what you want...It's receptive to estrogen and progesterone, which is what you want because that is compatible with the treatments we already have available. She told me they wanted to do an MRI just to sure they hadn't missed anything on mammogram/ultrasound.  She also scheduled me to see surgical oncology, radiation oncology and hematology/oncology a week after the MRI.

Biopsy

The same physician who conducted my ultrasound also performed my biopsy.  I was relieved because my first impression of her was that she was the smartest person I had ever met, and that she would get to the bottom of it.  When I told her that my gynecologist had given me a supplement to help clear up my breast tissue (thinking it was fibrous tissue), she openly sneered.  She asked me if I had early onset of menstruation (yes), how old I was at my first pregnancy (over 30), and how much I drink (maybe 1 drink per month?).  I later learned these are all risk factors for my (eventual) diagnosis.

The doctor took 7 biopsy sites from my left breast, and a small titanium clip had to be inserted in each site.  She let a resident try one of them and there was some "kickback" from the procedure.  After that I asked for a cool washcloth for my forehead but otherwise was okay.  She told me she was going to put a rush on the labs and that I might have results by early the following week.  I did not expect that I would have to have *another* mammogram afterward to make sure all the clips were in place.  The nurse asked me if anyone was waiting for me and I said no, nobody told me I would need anyone to drive me.  She said, "You seem like someone who would want to do this alone," and I agreed that it would have stressed me out more if someone had been waiting for me.  In any case, I took the bus to the park and ride and drove myself home with no difficulty.

The biopsies caused multiple bruises to emerge over the next few days. 

Mammogram and Ultrasound

After completing the mammogram and ultrasound, the radiologist asked me if I could come back that afternoon for a biopsy.  This was the first I realized something was likely wrong.  I had to teach that afternoon so I said I could come the next day.  It took the scheduler a long time to get me fitted in and she had to involve her supervisor.  Their persistence told me the doctor had expressed some urgency in scheduling my biopsy.

Examination

My gynecologist said, "I don't think this is cancer, but I'm going to order a mammogram plus ultrasound, because this isn't going to show up well on imaging."  Rather than giving me a card for scheduling the mammogram myself, as she normally would, she had her office schedule it. The first available date was October 2.