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Triple Negative Breast Cancer Day – 3-3-13

Today has been designated the first annual Triple Negative Breast Cancer Day by the Triple Negative Breast Cancer Foundation which helps to raise awareness and to fund research to find a successful treatment and cure of triple negative breast cancer.  As I have said in the past, I have triple negative breast cancer.  That means that my tumor was negative for the three most common receptors known to fuel breast cancer tumors – estrogen, progesterone and the HER-2/neu gene.  There are targeted therapies for other types of breast cancer depending on what types of receptors the tumor has.  At this time, there are no targeted therapies for triple negative breast cancer which occurs in 15-20% of cases.  The only treatments available to me are chemotherapy, surgery and radiation.  One good thing about triple negative breast cancer is that it usually responds well to chemotherapy – in my case it responded very well.  The bad thing is that triple negative breast cancer is more likely to recur in the first 5 years after diagnoses than other breast cancers.  There are no targeted therapies to prevent the recurrence at this time.  If it doesn’t recur within the first five years it is very unlikely to recur.  I guess I am really looking forward to Dec 12, 2017!!!

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http://www.tnbcfoundation.org/ is a great resource for women with triple negative breast cancer.  The website has lots of information about triple negative breast cancer and research.  There is also a forum so that you can interact with other triple negative breast cancer patients.

I plan to enjoy life as much as I can without worrying too much about the possibility of a recurrence.  I also plan to eat well, exercise, reduce stress and follow my doctor’s orders.  My last regularly scheduled appointment with my medical oncologist is tomorrow and my planning meeting with the radiation oncologist is Tuesday.  There is a good chance I will be back in the classroom really soon!  Should be a very busy week!!!

I  also wanted to mention an awesome breast cancer online support group – http://mybcteam.com/.  There are over 3000 women sharing their experiences with breast cancer from all over the country – from the newly diagnosed to long time survivors.  It is a very positive place.  I encourage all touched by breast cancer to join My BC Team so that we may share our journey together.keep calm

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Life As I Know It….

Yes, I am still alive and kicking!  Sorry it has taken me so long to catch up on my blog.  My surgery ( I’ll finish my blog about that really soon – I promise!)  was on December 11, 2012 – 8 weeks ago yesterday!  SO hard to believe it has been so long already.  My pathology report came back after the surgery and there was good news and not as good news.  The good news was that the AC chemo worked so well against the tumor that my medical oncologist recommended only two more cycles of AC and no Taxol!!! Yeah!  I was so worried about the possibility of losing fingernails and toenails and neuropathy.  The not as good news is that my breast surgeon was only able to remove the sentinal lymph node because the other lymph nodes were scarred down from the chemotherapy – that lymph node was still positive for cancer.  I saw the radiation oncologist yesterday and she said that the lymph nodes were probably scarred down because at one time they had cancerous cells and I probably would have had 3 or more positive lymph nodes if I had my surgery first – which is a clear indication for radiation therapy.  She said that although I fall in a “gray area”, I would sill have at least a 25- 30% reduction in the chance of recurrence of my breast cancer locally if I had radiation.  I definitely don’t want to do this again – so I guess radiation is in my near future.

Chemo 5 on a snowy day!

Chemo 5 on a snowy day!

 

My 5th chemo was on January 17th.  It went very smoothly and I had very little side effects.  I wondered if they gave me too small of a dose since I felt so good!  My oncologist called me and told me to not go back to work the next week because she wanted me to rest at home and let my white blood count build up naturally.  So I stayed home and rested up.  A week later, I had my blood levels checked because I wanted to see my nieces perform in the musical, “Mulan”, that night if I wasn’t too low.  My WBC was 3.4 so I was really happy!  The musical was postponed until the next week because of snow though! Oh well!  I finally went back to work for the first time on January 28th.  My c0-workers were not in the office that day so I went over to say hello to my co-workers at my child development center.  I figured I had just wasted my time driving so far that day, but they put me to work on some filing.  I figured it was my dry run!  I worked a whole 3 hours.  Then I met Laura and Diana and Earle and Doug for dinner before the musical.  Dana saved us seats in the front row and I had a whole row of kids in front of me – I have to admit I was a little worried about germs – but Earle had started giving me neupogen shots again the day before – so I thought I was golden.  Silly me!  The musical was wonderful and I was so glad to be able to see my nieces first performances.

With my nieces after their performance of Mulan.

With my nieces after their performance of Mulan.

On Tuesday, I worked for a whole 4 hours.  I figured I would build up to 6 hours by the end of the week!  I really didn’t do much more than make copies and make plans to buy tickets to Disney on Ice for Diana’s 21st birthday!  That night I met my good friends Maureen and Tina for dinner at TGI Fridays.  I had missed a “happy meal” the night before because of the musical and they were gracious enough to meet me on a different night!  The company as always was delightful and time passed quickly.  We were making plans to celebrate my 6th and final chemo on Februrary 7th.  I was so excited about getting my chance to ring the bell!

Early Wednesday morning I had my lab appointment.  We were shocked to find out that my white blood count had dropped to 1.0!!!  Yikes!  That was the lowest it has been since I started back in October.  My oncologist said that my body was still recovering from the surgery. It was also the 5th chemo and the effects on my body were cumulative.  I guess the dose wasn’t too small after all!  So of course I would not be going back to work the rest of the week.   So far I had only worked 7 hours since December 7th!  Thank God for my co-workers that donated hours to me.  I was able to get 2 full paychecks thanks to them.  This is a hard time of year to be out of work – the beginning of the new school year (college text books are way too expensive!), the beginning of birthday season (4 out of 6 of our family members have birthdays in February!) and all these co-pays add up fast!

We had a full, but relaxing weekend.  Diana was home for the weekend and wanted to learn how to crochet!!! I was more than happy to teach her.  My sister and my niece had started crocheting the week before.  It was cool that they were all interested at the same time.  One of Earle’s childhood friends, Jon, and his wife, Chris, came to the farm with their kids and dogs.  The girls spent so much time outside with the animals I am surprised that they didn’t turn into icicles!!! The menfolk practiced their shooting skills while the women folk visited in the family room.  Our dogs enjoyed having a play date too.  We even had my favorite pizza – Ledos!  Yummy! They even brought a delicious dessert.   Around 8 pm I started yawning and Chris packed up her family right away so that I could get my rest.  It was a lovely visit.

Beautiful flowers from the Doerings to brighten my day!

Beautiful flowers from the Doerings to brighten my day!

Then it was Super Bowl Sunday. My sister and her family and my Dad came over.  The girls and I crocheted and  Earle and Neil cooked.  We were all rooting for the Ravens and the girls were wearing purple.  The first half was great…the Ravens were on roll.  Earle took Diana home at half-time.  When the lights went out  at the Superdome, everybody else decided to go home too.  I was getting tired anyway.  The lights finally came back on and the 49’s came roaring back.  By the time Earle got home it was a close game.  What a relief when the Baltimore Ravens finally won.  I am happy to say that my Redskins beat the Super Bowl Champs! 

I was still tired on Monday so I stayed home and rested.  I had my appointment with the radiation oncologist Tuesday afternoon so I didn’t go to work then either.  Yesterday morning at 8 am (February 6th)  I had my lab work done and an appointment with the medical oncologist.  I was waiting in the exam room and I overheard a nurse on the phone with the Infusion Center saying that my white count was too low and could they reschedule my chemo?  DARN!!!  Dr. P. came in and told me the bad news that my last chemo would have to be postponed until Monday, February 11th.  My white count was only at 2.2.  She was also worried about my granulocytes.  I was at .9 and she wants me to be above 1.3.  Granulocytes help to fight infection.  When your granulocytes are low you are more likely to get a severe infection.  She said that we could push it, but that the benefit would not outweigh the risk.  She also said that I needed 3 more days of Neupogen shots. Oh joy!  I think that the shots are making my muscles ache.  I am fine sitting down, but when I first get up I feel really stiff and sore.  She also said that I should probably not go back to work for 3 or 4 weeks after my chemo because of the risk of infection.  Wow!

After the bad news, I was so grateful that I had an appointment with Melinda for reflexology.  It was so nice to relax and chat and try not to worry about how much longer this whole process was going to take.  I also found out that it is really a small world.  Melinda met a friend of ours, Helen, at a book club and she told her that she had read about her on my blog!  I should shout out to Helen’s husband Ron for keeping us in soup over the last few months!  So many supportive friends and family are praying and sending good wishes – it helps to make this road a little easier to travel.

I am very disappointed that I don’t get to ring the bell tomorrow!  I was looking forward to putting the chemo chapter behind me.  The radiation chapter will not begin until 4-5 weeks after my last chemo.  It will last 6 and a half weeks.  The reconstruction chapter can not be finished until 6 months after the radiation chapter ends.  Seems like I will never make it to the end sometimes, but I realize that I have come a long way.  I have to just keep swimming….swimming

Interruption!

We interrupt the chronological order of this blog to bring you a real time update!  A few weeks ago I had a breast sonogram to see if my tumor had shrunk at all after 3 rounds of chemo.  The good news – the tumor hasn’t grown! The bad news – it hasn’t noticeably shrunk.  My team met and decided it was time to remove my tumor (along with my breast!)  The breast surgeon wanted to do the surgery 2-3 weeks after my last chemo which was 2 days ago today.  Yikes that’s quick.The big problem would be coordinating the two surgeons schedules – the breast surgeon and the plastic surgeon. I have opted to have a bilateral mastectomy with immediate reconstruction. The past week has been a flurry of doctor’s appointments. We got the word on Wednesday December 5th – my surgery is scheduled for Tuesday, December the 11th!  That’s less than a week away.  I appreciate your support and prayers through this difficult time.  At least by Christmas the worst should be over!  After the surgery, they will look at the tumor and decide if the AC chemo was working at all – if it is killing the tumor I will have 2 more cycles of AC.  If isn’t affecting it too much I will just have 4 more rounds of T. 

I appreciate your support and prayers and good wishes through this difficult time.  I really feel that it is helping me stay positive and keeping my spirits up.

My friend Lynn Brown Natolly made this for me!

My friend Lynn Brown Natolly made this for me!

Attitude of Gratitude! Part 1

I decided to spend November giving thanks for all the blessings in my life.  On November 2nd  I posted on Facebook “I am thankful for loving and supportive family and friends!!! My husband, Earle, who constantly cooks healthy meals for me and makes me green smoothies. My sister, Dana, who is willing to do anything asked. My children who are always checking on me (Doug even does the dishes without being asked!) My Dad for always being there. My Mother-in-law who constantly keeps me in her prayers. Laura and Randy who check on me often. My sister-in-laws, Debbie and Janette, who share their stories of survival with me. Friends who make soup and meals for us. For all the family and friends who brighten my day with cards, emails, phone calls and text messages and keep me in their thoughts and prayers. I feel truly blessed.” 

I was still struggling with neutropenia – my white blood count was only 1300 on the morning of Nov 2nd.  I had to stay home from work again.  I felt pretty good except for being tired and having a little trouble swallowing.  I saw Dr. P.  and I told her about the trouble I had swallowing and she told me to get Prilosec to help with heartburn and to protect my throat.  I also showed her a spot on my head that was revealed when my head was shaved.  She said that she was pretty sure it wasn’t skin cancer and said to use cortisone on it.  She said if it didn’t clear up I could see a dermatologist later.  She also said to use cocoa butter on my scalp to help keep it soft and unprickly.   Dr. P said that she did not like how low my white count was dropping the week after chemo.  This time no Neulasta shot the day after.  Instead, I had to have 1 Neupogen shot everyday for 5 days in a row starting on Monday.  I could either come into the office early in the morning or at 4 in the afternoon.  Neither of those seemed very convenient to me!  The other alternative was for Earle to learn how to give me the shots.  That seemed like the best plan to me – although Earle wasn’t too thrilled with the idea!  We arranged to come back on Monday afternoon which was a day off for both of us.  She also said that she wanted me to wait until Thursday to have my blood test to make sure I was fine.  Then she sent Dana and I to lunch and then we got all the new supplies at the drug store.

Diana was home for the weekend which very nice.  Friends of ours, Terra and Bruce came over on Saturday afternoon.  Bruce and Earle went hunting on the back 40 while Terra, Diana and I chatted.  Bruce got a deer – which was exciting.  When the guys got back we sat down to a delicious meal cooked by Terra – a yummy chicken and broccoli casserole.   As I said on Nov 4th, “I am grateful for wonderful friends that share their company and yummy food with us!!!”  It was a lovely and relaxed weekend.  The deer had to go to the butcher so Terra and Bruce would have to come back the next week to pick up their meat. It was a lovely and relaxed weekend.

Handmade quilt to keep[ me warm during chemo.

Handmade quilt to keep[ me warm during chemo.

On Monday,  November 5th, Earle and two of our friends, Bob and Maricela met me at work for Cruise Night.  I had to work late, so they came to find out about our cruise services.  At 8 pm we finally were able to leave to go to dinner.  We met two of our oldest friends from our Navy squadron days in Maine, Kenny and Vickie.  The 6 of us had  a lovely meal at Big Fish Grille in Crofton.  Vickie presented me with the most amazing and thoughtful gift – an absolutely beautiful handmade quilt!  The pictures don’t do it justice.  There are words embroidered all over the quilt -hope, pray, friends, Jesus, joy, laugh, dream, family, love, smile and grace are just some of the words.   As I said that day, “I am grateful for long lasting friendships that span across many states and many years!!!”  It was a very special evening.

The next day was election day.  After I voted I wrote, “I am grateful that I live in a country where I am able to vote to make my voice heard.”  I stayed up too late to watch the results and went to bed disappointed.   On Wednesday I got to go to Reflexology with Melinda again.  So relaxing.  That day I wrote, “I am very grateful for kind nurses, doctors and other health care providers associated with The Center for Breast Care at Calvert Memorial Hospital. I am also grateful that they offer free Reflexology for breast cancer patients – thanks Melinda!!!”

On Thursday it was time for Chemo number 3.  But first we had to get my Labs done.   As I wrote that day, “I am very thankful that my white blood cell count was up to 7000 today! I am thankful for wonderful friends and family that help and support me in my fight! 3 chemos down, 5 to go!!”  My friend, Tina wanted to come help keep me entertained for Chemo 3.  She also brought a delicious dinner for that evening!  I wore the “Stick to Cancer shirt that my friend Maureen gave me.  My daughter cut the neck bigger so that my port could be

accessed.  My sister Dana came along too and we laughed and joked and enjoyed each other’s company while the drugs went through my system.  Once again I had my free lunch and Dana and Tina left to go to Panera.   Soon after it was time for the “Red Devil”! And then it was time to go home.  Tina watched me try on various hat and wig combos and then helped Earle and I wrangle the “teenage” chickens into the chicken coop! 

I rested on Friday, November 9th.  I also entered an “Attitude of Gratitude” contest sponsored by the Chicken Chick.  My entry said, “I am so grateful for all the family and friends that have gathered around me in my time of need. I was recently diagnosed with breast cancer and we are very hopeful that it was caught early. In this picture I am undergoing my 3rd chemo treatment with my sister and friend by my side and a handmade quilt by one of my oldest and dearest friends in my lap. I am also grateful for all the wonderful doctors, nurses, and other health care providers that have made everything so much easier. We are all very hopeful that with God’s help and blessings I will become another breast cancer survivor so that I can enjoy my chicken’s antics for many more years!”  The picture I entered is the one in the middle.  A few days after I received the chicken hat in the mail.  What a nice surprise – I laughed out loud!  Kathy – the Chicken Chick saw my entry and sent me the hat her Mom made and a nice card.

We had a very busy weekend!  On Saturday, I posted, “I am grateful for a gloriously beautiful Fall day and a quick visit from my son and my lovely daughter-in-law!” They came in Friday evening for a an over night visit and it was really nice to visit with them.  That afternoon, neighbors of my Dad came over with their 3 kids to pick up the chicks that we ordered for them when we got our last order.  They had just finished their chicken coop.  We had a nice visit and chatted about chickens and cancer.  Later on Terra and Bruce came back to spend the afternoon and pick up their deer meat.  This time Terra made some delicious Enchiladas. Yum! I am getting so spoiled!

On Sunday, I was pretty exhausted!  My sister and her family came over in the afternoon.  Her husband and my husband headed to the basement to start brewing their first batch of beer.  I sat on the couch and tried to carry on a conversation.  My sister kept saying, “Isn’t there something I can do?”  I finally got up some energy to go down to the barn with my nieces.  We visited the animals for a little while and then headed back to the house.  Dana finally talked me into taking a nap.  And while I napped and the guys brewed, Dana and the girls straightened up the house.  It was very much appreciated!  After my nap I felt rested enough to go to dinner with my husband’s childhood friend and his family.  It was lovely to see them!   Their children had grown so much! 

The good thing about cancer is that it causes you to get together with people that are special to you – there is no time like the present!  Life gets so busy sometimes it is hard to fit in all the things that you need to do.  It is more important than ever to do the things that you WANT to do!  Friendship, laughter and love are the things that will sustain me through this chapter of my life,  I hope that when this chapter closes I will remember how important it is to continue to make time to be with all the people that bring joy to my life!

On Monday we had the day off for Veteran’s Day.  I wrote, “I am grateful for all the veterans past and present and their families. I am also grateful that Veteran’s Day means an extra day of rest for me!!! Thanks for your service.”  After a nice, restful day, Earle and I headed to my oncologist’s office so that Earle could learn how to inject me with Neupogen shots.  He just watched and asked questions the first time.  He was not too thrilled about this idea, but I knew he would rise to the occasion.  On Tuesday, he got his first chance to be a nurse.  He took my shot out of the fridge early so that it wouldn’t hurt as much.  He did a fine job, but wasn’t happy that the shot hurt me at all!  He is determined that he will get it just right so that I barely feel it.  I kept telling him that it hurt a lot less than the Neulasta shot – that one really stung! 

That same night I posted, “I am grateful for the – mailman!!! I got three packages today! One from my kids at school (courtesy of Maria), one from a co-worker – Chrystal and one from the The Chicken Chick!!! What a nice surprise!!!”  It was so fun to open up the goodies.  I am so grateful for all the love and support I am getting from everyone.  Hardly a day goes by that I don’t get a card, a package, an email, a text message, a phone call, a comment on this blog or a Facebook post.  I can really feel the love!

On Wednesday, November 15th I had my Lab appointment to check my white blood count.  ” I wrote, “I am grateful for my husband Earle who learned how to give me shots this week – it worked!! White Blood Count at 9000 this morning!!! Highest since I started all this. Wondering why I am so tired today though…”  It was so nice to get good news for once.  The attitude of gratitude will continue through this journey – I think it is really helping!  Thanks for all your prayers, positive thoughts and support!  To be continued…231059_4984660220260_1900762342_n

 

Aftermath – First Chemo

On Monday, October 15th, Dana and I went over to Scalped Salon and Spa in Prince Frederick to meet with Margaret the owner of Scalped.  She teaches a class called “Look Good Feel Better” through the American Cancer Society. She was very friendly and happy to help. She brought out a bag of make-up from the American Cancer Society and a little booklet of instructions.  She showed me how to apply the make-up to make me look healthy.  She also explained what I should do if I lost my eyebrows!!! Yikes! After she “fixed” my face, she looked at the wigs I had taken home the last time.  Margaret decided that the donated wigs were too big for me.  She picked out a few more to try at home. One of them was pretty blonde with bangs.  Not quite me!  I made an appointment for Friday, October 26th to have a wig fitted and to have my head shaved – because my hair was expected to fall out almost exactly 2 weeks from my first round of chemo.  Too hard to imagine at this point!!! Then we were off to lunch at Panera.  I am so blessed to have a stay-at-home sister nearby to share in all my “adventures”!!! Makes a lot things easier to bear.

The next day, I started my new job at Leisure Travel.  I showed up around 9 am to find a sign on the door saying they were closed for the day! The door was locked and I wasn’t sure what to do.  I called my director and he called the building and someone came out to let me in.  My new supervisor was out of town, so my new co-workers didn’t know I was coming.  They were very gracious to me and started to show me what types of things they did.  I started to help straightening up and refiled monthly statements.  I enjoyed having an hour lunch, but by the afternoon I was really tired.  (At my “real” job I only get 30 minutes.)  I just assumed it was because I hadn’t worked in a while.  Wednesday was my first day with customers, so I started to learn the procedures for taking payments and learning the prices of various tickets, vouchers, passes etc.  I also started to answer the phone – most of the time not knowing the answer to the customer’s questions!   All in all, the first two days at my new job were uneventful and pleasant.  I was grateful for the chance to work at a new job while undergoing treatment and my new co-workers were friendly and accepting of me.  I also went  over to my school on Wednesday afternoon.  They gave me a shirt that said, “Even Heroes Need Heroes” from the Fort Meade Fire Department and were holding a Breast Cancer Awareness event.  I was able to see some co-workers and receive some hugs and words of encouragement.  My Facebook status that day said, ” Thoughts for today…A bad hair day is still a “hair” day.  I have the most awesome family, friends and co-workers!!!  And Parenthood does an excellent job portraying what it is like to find out you have breast cancer.  Thanks for all the love, prayers and support!”

On Thursday, October 18th, I had my first blood test to check to see what my white blood count was.  First S. asked me how I felt, and I said that I had been struggling with my allergies since I had switched to Claritin instead of Zyrtec.  She asked me if I was tired and I said just a little.  Then she dropped the bombshell – my white blood count was only 1.1!  The normal range is 4.0-11.0.  Neulasta, the shot that I had on Friday was supposed to keep me from dropping that low.  I told her that I had been having trouble eating in the morning since I went back to work.  She said that I had to eat something -even just a little yogurt!  She also said that I needed to go home and rest because it was dangerous for me to be out and about while my immunity was low.  She told me to switch back to Zyrtec and to call the office immediately if I had a fever of 100.5 or higher.  I was a little shaken up by this news.  I had been hoping to go to my high school – Elizabeth Seton’s 1st Homecoming on Saturday.  It was disappointing to know I was going to miss out.  I also had to call work and tell them I wouldn’t be back til Monday. Oh well!

That night I had a slight earache – but I didn’t want to take Tylenol because I read that it can lower your WBC, as can antihistamines like Zyrtec and antibiotics.  I had a really hard time sleeping and finally gave up and took the Tylenol – after I took my temp to make sure it wasn’t 100.5 or higher.  When I got up in the morning, I called my oncologist’s office at 9 am and told the receptionist I had an earache and that my eardrum had perforated last year and I was worried.  I didn’t have a fever, but I was in pain.  She said the nurse would call me.  I waited a couple of hours and then called back.  I was afraid I didn’t give the nurse my number.  I left another message for the nurse and made sure I gave her my info.  I waited a while longer and I was starting to get a little frantic.  Finally the nurse called me and she said she would call me in a prescription for antibiotics.  I had an appointment with the plastic surgeon at 1pm and Earle was coming home from work to go with me.  I had him go get the prescription and meet me at the Dr’s office. I took my first antibiotic at 1pm and while we were talking to Dr. E. my eardrum popped!  Double Yikes!

Anyway, Dr. E. was very nice and explained the procedures for reconstruction after the bilateral mastectomy and showed us what everything looked like.  It was interesting and a little scary!  He would start the reconstruction right after the surgeon finished the mastectomy so I would only need one surgery.  He also said that I have a “very good anatomy” which made me a little happy!  Then he said he wanted to check my ear.  He was extremely worried about my Neutropenia (low white blood count).  He didn’t like the way my ear looked at all.  He had his nurse call over to my Primary Care Nurse Practitioner and arrange for her to see me right away without waiting in the waiting room.  He also gave me a mask to wear!  We headed over to the other Dr.’s office and got taken back immediately.  She looked and my ear and conferred with Dr. P. ,my oncologist.  They decided that I was on a good antibiotic, but she decided to also prescribed ear drops.  I told her that I was beginning to get a sore throat.  She looked at my throat and said it looked fine – but it was lower down than the back of my throat.  She also said that Dr. P. said to call the hospital to get a hold of her over the weekend if I needed her.  She said next time to keep calling back every half hour if I am having trouble.  Hopefully there won’t be a next time!

Earle got me a Steak Salad from Outback for dinner to get me some extra protein.  I enjoyed eating the salad but I felt like I had a lump in my throat after eating it.  I had been coughing off and on for the last week – seemed like it was being caused by post-nasal drip.  Late that night I started coughing and it caused me to be sick for the first time.  I actually felt much better after I did.  I was glad that it had been almost 11 hours since I took the first antibiotic and I had waited to take the second one!  My ear, of course, felt much better once it popped.  On Saturday, I got a phone call from Dr. E., My plastic surgeon, checking on me!!! What a nice surprise.   Saturday and Sunday, I rested, and took all my medicines and tried to eat right.  All of the sudden, I had trouble swallowing and had to be really careful about drinking citrus juices and eating things like tomatoes.  Boo!  I started to gargle with salt water.  It seemed to help some. Eating was becoming a chore. Looking forward to next week -back to work!