The Big C

The Big C.  The call that no one wants to hear, either it's you getting the call saying "you have cancer" or it's a call to you from a family member that says "I have cancer".  I don't know everything about cancer.  I am not a doctor.  Everyone's cancer is different.  But here are a few things I've learned that worked for me personally dealing with my breast cancer.  There were many things no one warned me about that I'd wish I'd known to prepare for.

1.  Doctor you like.  I'm so thankful that God hooked me up with a doctor I liked.  No, I can say I love Dr. Charles.  He was wonderful.  Little stuffy at first, but I think he lightened up at the end.  I made sure of it.

2.  Positive Attitude. I worked hard to keep a positive attitude.  This is something that can be more difficult for some that others. But it can be achieved.  I looked at cancer as a bump in the road.  As a temporary thing that was happening to me in my life.  I always remembered there were people worse off than I.  Things people have to learn to deal with and live with the rest of their lives.  I think I cried over having cancer about 5 times through the process.  

In room after recovery for
mastectomy. All I needed was
popcorn to go with the Propel.

3.  Being Nice.  I had bad days.  Sure.  But I tried my best not to take my bad days out on other people.  It wasn't their fault.  I remember a lady came into the clinic one day.  She was rude to everyone in the waiting room.  Mean to the receptionist.  When she went to the back she was mean to the nurse.  I thought to myself, everyone here is having a tough time.  It's not the nurse's fault, the receptionist fault, or our fault. Attitude is the biggest responsibility in someone's life, no matter what the situation is.  It's my choice how I treat others.  No matter what I'm going through in my life, it's still my choice in how I treat others.

4. Appointments.  I always took Chris with me to my appointments or a family member.   The shock, especially during the first appointments, is so great that you may forget important things that your doctor tells you.  The person you take may be able to ask questions you may not think about.  Chris was amazing at my appointments.  He asked several questions that when they came out of his mouth I looked at him and thought, wow, I can't believe you even thought to ask that.  I never would have.

Some of the nieces

5. Chemo Port at time of Surgery.  I went through Thompson Breast Center.  I had my biopsy then got the call with the diagnosis.  Thompson's has a team approach to treatment that I loved.  Every Friday a team of all their oncologists, radiologists, surgeons, nutritionists, etc. met to discuss all new breast cancer patients. Then the next week I came in and met the ones that the team thought would best suit my case.  So in one day I met my team.  And heard their suggestions.  The doctors knew as soon as I had the biopsy I had HER2 positive, Estrogen positive and Progesterone positive breast cancer and the grade.  But not the stage.  The doctors knew I'd need mastectomy, chemo and radiation from the biopsy results.  My suggestion is to find out ASAP, before surgery, if you have to have chemo and if so a port.  Most doctors will know right away.  (I think.)  I'm not a doctor so I cannot speak for certain.  My point is, if you have to have a port, ask them to put the port in at the time of the mastectomy if at all possible.  They put my port in when I had my mastectomy and I am so thankful.  In my opinion if you know you have to have a port go ahead and have it done with your mastectomy.  Why be put under and have two surgeries when it may not be necessary if they can be performed at the same time.  Plus you can start your chemo faster than delaying treatment while waiting to heal from a mastectomy then waiting to heal from a port insertion surgery.

6. I'm so thankful I had the chemo port.  My doctor's really didn't give me a choice since I had to have six rounds of chemo and 12 rounds of Herceptin.  A port is a scary thing.  But was my best friend.  There were no worries about going to chemo and worrying about being stuck or worrying if they would find a vein.

(Chemo is extremely hard on your veins.)  The only big problem that I ran into with the port was with my seat belt.  My seat belt crossed my chest right where my port sat.  This was fixed by taking a clip and clipping my seat belt to the side.  Worked perfectly to reduce the friction.

7. Gowns.  I wish someone had told me to have button up or zip up gowns after my mastectomy.  I was not able to lift my arms to pull on tee-shirts or pull over gowns for quite some time.  So button ups are a necessity.  A tight fitting mastectomy undershirt also felt wonderful.

8. Drain Tubes.  I had two drain tubes-one for each side- following surgery.  I was scared to death of these!  I'd never dealt with drain tubes on myself or anyone else.  I was constantly afraid I would move wrong and yank them out of my body.  Which I am sure would be painful.  And then have to have them put back in, which, would definitely be painful!  I would stick the drain tubes in pockets of my clothes but they kept sliding out. My nephew Jamey brought me a tool belt from Tate's to stick my drain tubes in.  Worked like a charm!  If a tool belt is too redneck for you a fanny pack would also work wonderfully.  And they both fit underneath clothing and go un-noticed.  Another trick is to safety pin the tubing underneath your shirt or into your pocket. 

9.  First Round.  I wish I had prepared myself to be scared that first round of chemo.  I was nervous and wished I had asked more questions about what to expect prior to that first round.  It was a giant room with chair beside chair beside chair.  No privacy.  I was terrified, completely terrified I would vomit in front of a room full of strangers!  I hate throwing up in front of anyone!  Much less in front of 50 strangers!  But chemo is quite different from the olden days--the anti nausea meds are great!  People don't get sick quite like then.  Some do!!!  Depends on the chemo.  But I never saw anyone vomiting in the chemo ward.  So that was a fear I should have not had or not have had so strongly.  I almost made myself sick from the thought of being sick!  

10.  First Round.  The scary part for me was when I got home.  I settled into my recliner.  After a few hours I would feel something in my body feeling different than normal.  Then some sound.  Then something else.  I thought to myself "Is that supposed to do that?"  "Is that sound normal?"  Then I thought to myself, "I just put a ton of poison into my body.  There is no way to get it out."  That was a scary time.  I has six rounds of chemo.  After the second those fears were rested somewhat.  I came to know what to expect.

11.  Nausea.  I had my chemo on a Thurs for the first few times.  Then tried to be back at work on Monday.  I always assumed because I made it through 5 days or so that I would be fine till be next round in three weeks.  No always so.  I went to Walmart the week after my first and became very ill in the bathroom.  I wondered if I was going to make it out!  lol  I think I had so much anti nausea meds the week of chemo I did okay but those had worn off the middle of the next week.

12.  Use meds on time, before you hurt.  I wish I had used my meds more often.  I am a med hoarder.  I am so afraid of running out of medicine that I won't use much.  I keep thinking "well, I might be sicker in a few days and then be out."  My niece who is a pharmacist would get aggravated and tell me the doctors would give me more.  I should have listened.  Not that anything was un-bearable.  

My nephew. UT football game.
My horrible steroid puff!

13.  Weight.  I assumed I would lose a lot of weight.  Often the opposite happens--depending on the type of chemo drugs.   I was on high, high doses of steroids.  I gained 20 pounds on chemo.  So my wardrobe was completely unprepared.  And I didn't feel like shopping.  The un-expected weight gain was emotionally hard to cope with.

14.  Ask for help.   I wish I hadn't been afraid to ask for more help.  This is a big hang up of mine.  Having friends, family and neighbors coordinate to fix some meals for your family is a huge help.  If not to the patient then to the family. 

15.  Food.  Food tastes different from before.  I tried to not eat a lot of things that I loved. If it had tasted yucky or if I had gotten physically ill after eating it I my not have liked it after finishing treatment.   But I pretty much ate anything and everything in sight.  Steroid hunger is torture!

16.  Water.  I wish I had stayed more hydrated.  But liquids tasted soooo bad.

17.  Exercise.  I wish I had forced myself or had someone force me to exercise.  Nothing hard!  Just walking a mile two or three times a week. 

18.  Plastic silverware.  I stocked up on plastic silverware before my first chemo.  Certain kinds of chemo give you a metallic taste to your mouth.  Plastic helps lesson that to a degree.

19.  Wigs.  I hated them!  I ended up buying four.  I wore a wig maybe three times during the whole time of being bald.  Thank goodness good friends gave me many presents of scarves. Unbelievable, but the ones to wrap your hair in are quite hard to find.

20.  I only half way believed the Dr. Charles when he said at day 12 (or maybe day 14 I can't remember) my hair would fall out.  I had the hope that no, it wouldn't.  The day Dr. Charles said is the day my hair started coming out it did--in clumps.  I didn't realize I would have to continue to shave my head throughout the whole time of treatment.  I looked like a mangy dog unless I kept  my head shaved.  Large sections stayed slick bald.  Some other smaller ones grew stuble. 

21.  Smell.  My sense of smell changed.  I remember Amber and Chris taking me to the Outback to eat one night.  I walked in and the smell was disgusting.  I kept asking Amber and Chris if they smelled something bad.  That is the first time I realized that my smell was being affected.

22.  Neulasta shot.  My insurance paid for all but about $80 of the shot if I took it at home.  The shot was free if I went to the doctor's office.  This shot is a $4,000 shot.  I didn't feel like driving back to Knoxville the day after chemo.  Ask you doctor if your insurance will pay for someone to give it to you at home if you would like.  I readily paid the $80 to keep from spending two hours on the road and an hour in the doctor's office the day after chemo when I felt yucky.  

23.  Neulasta shot.  This shot put me in the bed for sure, perhaps just as much as the chemo.  After you receive the shot your body goes through a painful process.  Luckily a friend had warned me.

24.  Clariton.  Taking Clariton helped with some of the side effects of treatment.

Horrible acne after !st Chemo!
Perhaps roughest emotional thing.

25.  ACNE!  Who would think acne would be/could be a side effect?  It can be.  And of course who would get acne as a side effect?  ME!  It was HORRIBLE!!  Horrible acne.  I looked in the mirror the Saturday after my first round and thought "Oh my, I'm 13 again!"  And I hated being 13.....

26.  Brown Spots.  Chemo makes your skin very thin as it kills fast growing cells and skin is a fast growing cell.  I had started getting a few small brownish age spots on my face the past few years.  Well, chemo allowed those to take over my face.

My great niece at Christmas with my
chemo curls. My hard was curly & jet
black when growing out. 

27.  Chemo curls.  My hair came back a completely different texture and with wavy curls.  Be ready for a new color and new texture.  Lots of adjustments on fixing hair. I had looked forward to having some curl.  This curl was not my 80's curls. These were uncontrollable!  I hate it-couldn't style at all!

28.  Dentist.  I made sure to have my teeth cleaned well before starting treatment.  You can't have any cleaning done while on chemo or radiation.

29.  Magic Mouthwash.  I had never had heartburn in my life but got it my fourth round of chemo.  I thought here I've made it through four rounds of chemo without ending up at the emergency room and I'm going to end up there because of heartburn!  It was torture.  Magic Mouthwash did the trick.  It totally numbs your throat.  Just...be.....careful how you swallow.  The Magic Mouthwash will also numb your lips and tongue.  Learned that the hard way......not fun!

30.  Advice.  I got lots of advice from people who had been through chemo or had friends/family who had.  I ran everything by my doctor first.  Being in treatment and taking those drugs are hard on your system.  One of my chemos had to be postponed due to my liver enzymes.  Being very careful about mixing medications and vitamins and herbs is of upmost importance.  My liver was being taxed already.  I had to be careful about further hardships as I didn't want to create permanent liver damage.

31.  Phantom pain. Phantom itching.  Those things don't just happen to those who lose a hand or a foot or a leg or an arm.  Women who lose breasts can also sometimes experience phantom pain or itching.  Be ready so it's not so scary or aggravating should it happen.

Friends at Hiwassee College
"Denim & Diamonds"
fundraiser for equine. 

There are many other things that worked for me during treatment.  Or that I discovered that helped with problems.  I may update my list later. 

My sister. Dolly concert

Oh....one last thing.  Surround yourself with friends and familyand fun and laughter.  It will lighten the load of living a kindanightmare you thought you'd never star in.

Nieces & nephew.
Third Day concert.

Friend Kelley. Out to dinner