No more wig!

I am so excited to announce that I no longer wear my wig!  I am so proud of myself.  I prayed long and hard for the courage to ditch the wig.  Some might not think it is so hard but it is hard when you look entirely different without it.  So the last day that I wore it was Thursday, June 18th.  That was also the day we left for our weekend getaway ATV trip to Fillmore, Utah.  I never wear my hair camping anyway so the weekend wasn't a big deal.  I even forwent a hat when we went to dinner at Costa Vida during the trip.  I just didn't care, I figured nobody would know me anyway since I was three hours from home. 

When we got home on Sunday I was creating anxiety for myself about Monday and if I should wear my hair or not.  I knew that on Monday night my best friend Heather was going to trim up my neckline to make my new style look like a style.  Waking up on Monday morning I still did not know what I was going to do.  I grabbed the wig to put it on and decided right then and there that I am done!  I tucked it away in the closest and off I went.  As I was kissing Jeff goodbye while he was still sleeping bed, I told him that I wasn't wearing my hair or a hat today.  He called me when he woke up and asked if I decided to wear it because it wasn't in the bathroom hanging up like it usually is.  I told him that I put it away forever!!!  That night when he got home from work he told me that he was talking to his boss and he told her how proud he was of me for going without my hair.  Gosh, I love my husband, he is so supportive of me.  Even last week when I met with some vendors I went on and on about how much I love my husband and how I picked the right guy to marry over 13 years ago. 

The hair thing has been the hardest part so far from the moment I shaved my head to wearing my wig out in public for the first time to now, not wearing my wig at all with my super short boy haircut.  Each day that goes by this week the stronger I get and more I really don't care if people stare at me and wonder why my hair is so short.  It feels good to just be me!  It is also approaching 100 degrees every day and it is so nice to not wear it and be so sweaty.  There isn't much I can do with my new style other than to get out of the shower and just comb down the sides and back.  The top does what it wants and it is shaping itself into a mow-hawk.  I figure I will just go with it and let my hair decide the style it wants to be for now.  I don't think I will ever fight with my hair again, I am just glad to have hair and for it to be growing in brown and not gray.  I almost think it is darker than before.  I love feeling my hair it is so soft and such a different texture than my wig.  It is growing fast and sometimes it grows over night.  Yesterday when I got up it was longer than it was the day before, I even got out the blow dryer to help the style a little bit and when I got to work Terry told me that she thought it looked like I had more hair on top than I did the day before.  I am so glad she said that because at first I thought I might be dreaming!  

Weekend Getaway!

This past weekend we headed down to Fillmore Utah to go 4-wheeling.  This is the first getaway I have had in almost a year.  We invited some friends from work to go with us and had the best time.  We left Thursday afternoon and came home on Sunday.  We took our trailer and stayed at the KOA.  The mountains we rode in were so beautiful.  I love having ATV's and being able to get deep into the mountains.  Without them I would not be able to see how beautiful and breathtaking the mountains really are.  This is the also the first time that I don't think I ever thought about cancer once.  I felt completely normal and loved every second of it.  I know the further away I get from the treatments and once my hair grows out to where I am comfortable, I know cancer will get further from my mind.  I love feeling so good these days.  I try and make the most of every day.  I have told myself that this summer is going to be the best summer of my life.  We have been camping the last four weeks prior to this trip up at our Sourdough lot.  It has been enjoyable as well.  We plan on taking our trailer back to our Sourdough lot and camping every weekend until our RV road trip that we have planned in August.  There is just something about being in the mountains.  You have no cares or worries in the world and it is completely peaceful. 

Looking back to even a month ago when I was finishing up with the side effects of radiation I don't feel like any of it ever happened.  I feel like it was all a dream.  However I know it happened because I have scars and really short hair.  I am also changed on the inside, I have a new appreciation for life and am living it to its fullest.  Nobody knows when it is their time to die and you should never take a day for granted because it could be your last.  I am living in the moment and not thinking to far into the future because I do not know what it holds.  I also don't want to cause myself anxiety about the what ifs of future.  As long as I feel good today I am going to make the most of it. 

The one side effect that I have developed in the last month or so is pain in my hips, knees and ankles.  I feel like an old person every time I get up out of bed or stand up from sitting.  I looked it up online and I think it is post chemo rheumatism (joint pain).  I do not want to go back to the doctor to ask for sure just in case it is bad news, but I really feel that this is what it is.  All the symptoms I have relate to it being this.  It sucks but I try to not think about it and just deal with it when it happens.  I could have every reason in the world to be depressed but I am not!  I refuse to let cancer take away my happiness.  I heard a quote the other day that I just love.  "Cancer is not a death sentence, but rather a life sentence, it pushes one to live." 

Chemo port removal

Today I had my chemo port removed.  I didn't want to have to deal with getting it flushed every 6-8 weeks and have the constant reminder of cancer.  My oncologist said I could remove it whenever I wanted and that if I ever have to do chemo again we could use my arm or worst case scenario they could put it back in.  Others recommend leaving it in for two years.  Honestly I am ready to put this cancer journey behind me and start living.  I have one more follow up with my radiation oncologist this month and then follow ups with my medical oncologist every three months for the next two years.  After all I have been through I think going to the doctor once every three months will be a breeze.

Jeff and Kaci took me to the hospital this morning.  We had to be at the hospital at 6:00AM and my surgery was scheduled for 7:30AM.  I was hoping to be able to sleep in a little bit since I took the day off of work but I had to get up earlier than what I do on a work day.  I was the first on the schedule and they were on time.  When I woke up it was a little after 8:00AM.  We left the hospital at 8:30AM and were home a little after 9:00AM (we had to stop and get some pool salt).  It was a super easy procedure and I was not nervous at all.  I guess that is what cancer does to a person.  I came home and slept until about 1:00PM and took it easy for a while.  Tonight I mowed the back lawn, got some wash done, finished getting the pool ready and vacuumed the house.  I am a little sore but I am trying not to think about it and just keep going. 

We asked if I could keep the chemo port as a souvenir.  Dr. Megan said they just throw them away so she said we could have it.  It is crazy that it was in my body and that is what delivered the hard core drugs throughout my system.  The best part was it was purple.  

My wounds from radiation healed up last Thursday, almost 2 weeks to the day I finished.  That is exactly what Dr. Fisher said it would do.  He said it will heal up fast and sure enough it did.  Last Wednesday my back stopped oozing and felt better and then when I woke up on Thursday my armpit had healed.  It is so weird that it can be all gross and oozing one day and the next all dried up and looking like nothing had happened.  I have never had a wound heal like this one did.  I am so glad it is all better.  I still have some pain but it is definitely feeling a lot better.  The skin where it was radiated feels so tight and it hurts to raise my arm up.  I hope over time it will ease up.

I feel like today is the first day of the rest of my life.  Now all the surgeries, chemotherapy and radiation are completed I can start living again.  I don't know what my new normal will be but I will just take it one day at a time and make every day count.  I will start the next course of my treatment, hormone therapy on June 15th.  I am nervous to start Tamoxifen and I hoping that I don't have many side effects.  I do not want it to diminish my quality of life. 

What a loving and supportive family I have.  I love these pictures because they show the end of "our journey".  All of us have been through so much, both good and bad.  I can't believe we have made it to the end. 

Radiation is not kind to me

I finished radiation 11 days ago and my armpit and back wounds have continued to get worse.  I went to Dr. Fisher last Friday because they continue to ooze and they are sticking to my clothes.  The other night my shirt stuck to my back wound and when I pulled it away it started to bleed because it pulled off some skin.  It is so gross and it looks like big green boogers that get all over my clothes.  I asked Dr. Fisher if I could cover them up with something so that it doesn't get all over my clothes.  He told me I could use non adherent pads and paper tape.  I went to Walgreen's right after the appointment and stocked up.  I keep them on during the day and sometimes at night so that my clothes can stay dry.  He did say that is best to let them air out so sometimes at night I will go without them but I don't like the sticky wet feeling and then the goo is all over my arm and back and I have to literally pick some of it off because when it drys it is very crusty.  I can't believe my body is producing something to yucky.  It is very hard for me to put the Silvadene cream on them because they are so sore.  I am still taking about 10 Ibuprofen a day for the pain.  Dr. Fisher said this moist desquamation happens in about 1 out of every 20 people and I just happen to be the lucky one!  This is also the most painful type of radiation burn a person can have, again lucky me!  I have gotten every rare side effect there is from both chemo and radiation.  I don't know why I thought this would be easy.

My armpit burn

HAIR growth weekly/monthly/yearly etc.

I am going to document my hair growth and will be adding a new picture from time to time.  The pictures are from newest to oldest.

September 29th, 2016.  A few days past 1-1/2 years since chemo.  My hair is really starting to grow.  I started putting some highlights in it since June.  I finally like my hair however I am still going to grow it longer.

One year post chemo.  March 23, 2016.  I have had numerous haircuts but only in the back.  I have only had the front cut one time and it was a very tiny amount and probably was not needed.  I have had to keep the back shorter so that I didn't look like I had a mullet!!!!  I will continue to grow it out and cannot wait for it to get longer on the top.  It is a much slower process than I could have ever imagined.

6 months since chemo back view- look at all those unruly curls!!!!

6 months since chemo front view- my hair is super curly and I cannot do anything with it.

17 weeks 2 days post chemo.  July 22, 2015

17 weeks 2 days post chemo.  July 22, 2015

13 weeks post chemo. 6/22/15.  My best friend Heather gave me a little haircut and shaped it for me tonight.  Today is also the day I decided to put the wig away for good and show off my new hair.  It was hard to walk out the door without it but I felt confident and amazing.

11 weeks post chemo.  6/8/15

10 weeks post chemo.  6/1/15

9 weeks post chemo.  5/25/15

8 weeks post chemo. 5/18/15

7 weeks post chemo.  5/11/15

6 weeks post chemo.  5/4/15

5 weeks post chemo. 4/27/15

Post radiation update- help my skin is falling off!!!

I finished radiation almost a week ago.  My poor skin, it is literally falling off.  My armpit is the most affected by this.  It is oozing and very moist as the skin continues to fall off.  It is hard because it sticks to my shirts.  My back is doing the same thing but not as bad as my armpit and it is not as painful either.  This just sucks!!!!  I cannot let my arm fall to my side, it is so painful.  I take 4 Ibuprofen in the morning right when I wake up and then another 2 at lunch time and 3 before bed.  I have to keep up on the pain pills or else I am in trouble.  I can't believe how painful burns are.  This is another rare side effect that I am experiencing but once again I am not surprised.  They said it usually takes a good two weeks before your skin starts to heal.  My chest on the other hand finally looks a little better today.  It is still bright red but it isn't itching near as bad as it has.

This sure makes sleeping and bathing difficult.  I don't sleep to well.  I can only sleep on my left side and I have to make sure my right arm is propped up on a pillow so that it doesn't fall to my side.  Sometimes I will give in and just sleep in my back with my arm up above my head but then my cream rubs off onto my sheets and my back starts to itch.  I can't win!  It hurts to shower because then the water touches the tender exposed areas.  I have to take a bath and keep the water from touching my burned areas.  

I am continuing to use the Aquaphor and Silvadene cream.  It feels better when I keep the areas moist.  If they start to dry out then I start to itch and then with the itch comes more pain.

I can get through it I am almost a week out and should only have another week left to go.

2 month followup with my oncologist

Today was my 2 month followup with my oncologist, Dr. Stinnett.  We first went over all the of side effects that I had from chemo and the only one that I have left is the hot flashes which will not be going away anytime soon.  He was glad to hear that everything else has subsided because sometimes they do not.

Then we went over my list of questions and he answered each and everyone of them.  A few of my questions were, can I take vitamins like Biotin to help grow my hair, how often do I need to see my surgeon, how do I know if I am in permanent menopause, when can I get my chemo port out, how often are scans etc.  So yes, I can start taking vitamins again.  It is up to me how often I want to see my surgeon but he will be taking care of me as far as cancer goes.  I am free to get my chemo port out anytime, it was only put in for the AC chemo and I won't be needing it anymore. He said he doesn't like to do scans unless you are having a symptom, they give the patients too much anxiety and he would rather wait for a reason to do them, like if you are having a symptom that won't go away.  He said they have done studies where they had two groups of women, one that did regular scans and ones that had a symptom and then did the appropriate scan.  Both groups of women lived the same amount of time.  Stage 4 breast cancer is fatal so it doesn't matter if you find it 3 months earlier from a scan or wait for symptoms to appear.  Either way they will try and prolong your life with maintenance chemo etc.  I was glad to hear that because I would rather have my money to live and to make memories rather than paying for unnecessary scans that would honestly cause me a lot of anxiety.  Instead he said he will check my blood counts every 3 months and talk to me about any new symptoms I might have.  The blood counts will be checked primarily because of the kind of chemo I had, it can cause Leukemia.  He also said sometimes the blood counts can give him a hint that something might be going on if there are changes to the counts.  At that time he might order a scan based off the blood work results.

The we discussed my next 10 years of hormone therapy treatment.  So I have two options.  Option 1:  Tamoxifen hormone blocker.  This drug can cause uterine cancer as well as hot flashes.  However option 2 has a 4% better chance that the cancer will not return but it involves a lot more side effects.  Option 2 involves suppressing my ovaries with a Lupron shot every 3 months or ovary removal as well as taking an aromstase inhibitor which is another hormone blocker but this one has more side effects than Tamoxifen.  Of course the hot flashes are one of them as well as bone loss and joint pain.  For now I decided on Tamoxifen and should my menstrual cycle come back I can always try option 2 with the Lupron shots and aromatase inhibitors just to get the added protection.  If the hormone blockers are too hard on me then I can always switch back to Tamoxifen.  Honestly I want the best quality of life possible even if it shortens my life.  It is hard to make a decision like this because I have completed chemo and radiation, now I need to be sure to keep the cancer away.  I didn't do all of that just to have the cancer return.  I am sound in my decision thus far.  I will start the Tamoxifen hormone blockers around June 15th.  He said he wants me to heal from my radiation wounds first.  I will continue to take Effexor for now.  I really don't know if it is helping my hot flashes or not but I am not getting as much as I used to.  I am still getting about 15-20 hot flashes in a 24 hour period.  He doesn't want to switch the Effexor to something else right now because he wants me to take Tamoxifen with it and see how I do.  Later on we can try something else once my body gets used to Tamoxifen.

I am very happy about the way this appointment went.  I was honestly dreading the scans and the worry that would be involved.  I know my body more now than ever before and right now I know how good I feel with the exception of the localized pain I am feeling from the burns from radiation.  My skin is literally falling off under my armpit.  It is very painful right now.  So I will know if something is not right and that is when I would discuss this with Dr. Stinnett and then he would order the appropriate tests.  I love my oncologist so much.  I love that he is so in tune with studies and not ordering any unnecessary tests.  I love that I might be able to take a vacation each and every year with the money that I would have spent on testing.  I am excited to get my life back and make lots of memories.

I called Dr. Grunander's office when we got to the car.  I made an appointment next week for a followup and the nurse said I could get my port out on Monday, June 1st.  I could tell they were not happy with me because they feel a person should leave it in for two years just in case.  Dr. Stinnett assured me that if the cancer comes back they can use my veins in my arm for chemo.  Nothing is as strong as AC and won't cause any damage.  In fact I met a lot of people who get it in their arms.  I am not going to worry about that.  I just want the dang thing out.  It is a mental thing with me.  I never liked when they had to poke it for chemo and anytime they needed to check my blood I had them draw it from my arm anyway.  I was going to wait until later this year but I want to be done with EVERYTHING so I figured I am in pain from radiation right now, I might as well add to it and then I can heal all at once instead of dreading another surgery all year long.  I have to have it taken out in the hospital under anesthesia which is probably best because it does go up into my neck and then down towards my heart.  I don't want to feel the tugging when they take it out.  After that I can put this cancer journey behind me. 

The last thing Dr. Stinnett said that made my day was that I have more hair on my head than most people have 8 weeks post chemo.  Yay, I think my Nioxin products must be working.  I think another two weeks I will have enough short hair to cover up any thin spots that I still have and then I can start sporting my new short hair!!!!

Next oncology appointment in 3 months!!!  What will I do with my summer?  Have fun and live life that is what I will do with my summer!