Days

My ob found the lump on my 38^th birthDAY.  I received my second diagnosis one year and 2 DAYs after my original diagnosis.  Today I found out I’m 5 DAYs too early.
Here’s the story: I refinanced my car in April and decided to get the disability insurance.  I never would have gotten it before but I got it because I HAVE FREAKING CANCER.  Today the disability insurance company called to let me know that it seems like I might not qualify because there’s a waiting period.  A six-month waiting period and I stopped working five DAYs before the six-month mark.  DAYS!  It’s not that big of a deal, so I have to make my car payment.  I mean that’s what I expected, until I refinanced and was asked if I want disability insurance and I said yes, because I HAVE CANCER.  Are you kidding me?  I don’t even know what the word is – ironic?  Stupid?  Funny?  Lame?  Probably lame because I use that word a lot. 

I also had a call regarding a Social Security claim.  A claim was submitted before by a company my employer contracts with to file Social Security disability claims (I totally don’t understand, so glad this company exists).  I asked if I needed it, I was only going to be out for about 6 months but the person said it’d be good to do it because I’ll have been out for close to two years when I’m done with treatment.  Wow.  Two years?  Yes, I went back to work for close to four months but it’s considered an unsuccessful return to work. 

This all got me thinking.  And almost freaking out.  Cancer, Recurrence of cancer, disability, social security…  I am hearing about things, dealing with things, learning about things that I don’t think I ever thought about having an effect on my life, ever really.  Not even when I am old.
BUT I DON’T EVEN FEEL SICK!  And I don’t want you sad that I’m “dealing with things” because I’m not sad.  I’m just kind of shocked, I guess.  Or in shock.  I guess I’ve been in shock since September 24, 2012.  You, my friends and family, were more mad that the cancer came back than I was.  It could be that being mad won’t change the facts so I just remain in shock.  And still in disbelief.  I mean, while I wait for radiation to start I wonder if I should just go back to work and live as though I don’t, didn’t have cancer.  But that’s silly because I do, did have cancer.  And I don’t want it again!
I generally don’t let these thoughts linger because they don’t matter but… sometimes it feels good to follow the train and see where it takes me.  And there’s always Xanax if I don’t like where it goes J

I’ll be starting radiation on Monday, 12/9.  In total I’ll get 35 treatments, 5 days a week for 7 weeks as long as there are no setbacks.  I guess if my skin gets too irritated they’ll have to postpone treatment.

I hope everyone is enjoying the holiday season.  Bobby and Micah picked up a Christmas Tree yesterday and then we all (Bobby, me, Helena and Micah) went to Celebration in the Oaks at City Park last night.  It was cold but festive and fun to see Micah loving all of it!  We plan to go again so Helena and MIcah can go on the rides.

Tattoos, Cruisin’ and Friends

Bobby and I just returned from our 5^th Wedding Anniversary Cruise, a wonderful and much needed gift from my mom.  The cruise ended in San Juan, Puerto Rico so we stayed there for 2 nights to check out the city.  We enjoyed the relaxing and fun trip but were happy to get home to our family. 

Last week I had an appointment with Dr Kraus, my radiation doctor and an appointment with Dr Barnhill, my oncologist and had a CT scan and got lined up for radiation.  I have 3 new tattoos but they’re kind of lame.  They’ll start to blend in with my freckles and moles but they’re very important, to help line my body up with the lasers and radiation things.  I’m sure once I start I’ll know the actual terms for the ‘radiation things.’

Dr Kraus and Dr Barnhill are very optimistic about everything.  In case you missed the last post, or didn’t understand, the bone, abdomen and chest scan results were good.  They showed no more disease (cancer) in my body.  But I will still complete radiation and chemo.  The radiation will get the area around the location where the tumors were found (my left breast) and the chemo will hopefully kill any remaining disease that might be in my body.

Radiation should start next week and I hope it does because the more things get pushed back the longer I have to deal with cancer! 

People have been asking how I feel and it’s weird to me becuase I feel fine.  I’ve recovered from surgery where they removed the lump and I’m waiting for radiation to begin.  And from what I understand, radiation shouldn’t make me sick but it will wear me out.  Unfortunately the chemo might make me sick but from what I hear, the drugs I’ll be given are not as harsh as the drugs I was given with my first round of chemo. 

We had a very nice Thanksgiving, first at Bobby’s moms house and then to spend some time with friends.  Thank God for friends and family! 

Speaking of friends, I have amazing friends!  My Portland friends surprised me with a fundraiser while I was in town.  The invite went out on Facebook and was planned and pulled off without me knowing or suspecting a thing.  I was in shock for at least an hour after I walked in to the place it was held.  I have always thought I have great friends but I never expected something like this and am so honored that everyone came together to do this for me.  Plus, it was fun to see everyone again since I had already said good bye to some of you.

It's fun to be 6 and 1

High level version:  Scans were negative.  I need to do more chemotherapy after I am done with radiation.

Detailed version:

As I was sitting in the waiting room for my post op visit with Dr. Jones on Thursday I got a call from “No Caller ID” which I’ve come to learn is a call from someone at Tulane Hospital so I answered.  It was Linda, Dr. Barnhill’s nurse telling me that something wasn’t sitting right with Dr. Barnhill so she started looking further into my pathology reports, conferred with other medical experts and has determined that she wants me to do another chemotherapy treatment. 

And then I was called back to get my vitals checked.  Needless to say I wasn’t surprised when my bp was 160 over something.  My normal is somewhere under 120.  We walked to the back, past Dr. Jones’ office and into a exam room so I figured things couldn’t be too bad (we always go in the office when there’s bad news, I told them they need to either always go in the office or always go into an exam room so we don’t know what the news will be) but it didn’t matter because I was just told I’d have to do more chemo.  Still, I was anxious to get the scan results.  Dr. Jones walked in and asked me how I was doing and for the first time through all of this I said “Not Good.”  He examined my incision from the lumpectomy and told me to come back in 2 weeks for another check and I was like, um what about the scan results?  I can tell you my incision looks fine!  So they got the reports, confirmed that the scan results were all negative. Thank God!!!  But more chemo?  Ugh!

Dr. Barnhill went into the office last Friday specifically to see me, and only to see me.  She had been trying to decide if she should tell me before or after our cruise and decided I would want to know before.  She again said that she is treating me like her daughter in this so when I asked about a second opinion or going to MD Anderson she had already considered it and answered all of our questions about this and encouraged me to get a second opinion if I wanted, or do whatever I feel is necessary.  She also said she conferred with someone that she really respects (and says is very wise) about MY cancer and the best treatment for ME. 

I will start radiation the day after we return from our cruise.  Hopefully I can continue with no problems (like skin irritations or blistering) but they are kind of expected.  Once I finish radiation I’ll begin chemo. 

I’ll be on a 21 day cycle where I have chemo on Day 1 and Day 8.  Then day 21 is day 1 again.  It’s hard to explain!  Often times Day 8 can’t be done on the 8^th day because the blood and platelet counts are not right so treatment gets postponed or even started over.  I can’t get the Nulesta shot (the white blood cell shot I got last time) because you have to have that at least 14 days before the next infusion and with this cycle there aren’t 14 days between infusions. The shot would help with the whole blood and platelet issue but it just doesn’t fit here.  Dr. Barnhill said she can probably count on one hand how many people have made it through without the originally planned schedule being altered.  I’m a little confused about the side effects this chemo will bring so I’m trying not to worry about them.  Besides Dr. Barnhill told me I’m not allowed to worry until November 19^th, when we get back from our cruise. 

Onto happier things, the New Orleans Race For the Cure was last Saturday and we had a great day!  The weather was amazing, our team was smaller this year but still a good turnout. 

 

 

 

 

 

 

 

 

 

Sunday I got to go to the Saints game with Bobby’s sister, Patricia.  She invited me to go with her because it was the Saints Breast Cancer Awareness Day.  Bobby ended up getting a ticket too and it was fun spending the day with him and his sister!  Who Dat!  (this is where the fun, 6 and 1 reference comes into play for those of you who don't follow the Saints or the NFL)

 

 

Logically...

Logic doesn’t work with cancer.  I explained to Dr Barnhill how this logically should work and she said, yes logically that is how it should work.  But cancer isn’t logical. 

I remember writing during chemo about having 6 appointments in one week.  I topped that with 6 appointments in 2 days.  Thursday I had 3 appointments and Friday I had a bone scan (1^st appt), doctor appointment (2^nd appt) and 2 CT scans (3^rd appt).  I’m not complaining, these appointments weren’t difficult but I sure am worn out! 

One of my appointments on Thursday was with Dr. Barnhill, my Oncologist.  She took some time talking with us about the “new” diagnosis and answering questions then she introduced us to Dr Kraus, my Radiation Oncologist.  He is great, another great doctor added to my list of doctors.  He assured us he will treat us, all of us, as his family.  I have his cell number, he hugged me, kissed my mom on the cheek and shook Bobby’s hand.  He said he has no margin for error, that he will radiate me perfectly.  I feel like I’m in good hands. 

The doctors ordered some scans for me because I was unable to get the PET scan.  Now that I’ve had surgery they think we should wait until after radiation for the PET scan so I had two CT scans and a bone scan which we should have the results for on Thursday.  For now, I just have this rocking bruise from the needle and stuff they injected.






 

Oh yes, I’ll share part of a commercial I heard this morning.    I only remember the last statement – The two risk factors for breast cancer are being female and getting older.  Gee, thanks for that awesome information. 

How many setbacks can one handle?

I was hoping to provide an update last Thursday, after I got my PET scan results but I didn’t get a PET scan so I had no results to share.  My insurance was being difficult so I couldn’t get the PET scan but my doctor assured me he’s going to do what it takes to get the scan approved so I’ll probably be getting it in the next few weeks.

I did have my surgery yesterday to remove the tumor.  Everything went well and I came home last night.  This morning I was supposed to meet with my Oncologist but she got a flat tire on the way into work so we postponed that appointment til Thursday. 

I should probably be more frustrated with these setbacks but I don’t know, maybe I’ve learned to accept the things I can’t control (cancer, other people, car tires) or maybe it’s the Percocet that I’m on J 

If you’re going to sign up for the Race for the Cure it’s next Saturday, 10/26.  The last day to signup online is tomorrow, 10/16. The team name Kickin’ It Pink (not Kickin It Pink for Kristyn!)   Bobby and I plan to push Micah in the stroller, I know some people are running and I imagine someone will stay back and hold down the fort so don't try to get out of it by saying you're out of shape because we have every fitness level covered here!  this link should take you to the signup page:

http://www.info-komen.org/site/TR/RacefortheCure/MTR_NewOrleansAffiliate/1769929888?pg=team&fr_id=3386&team_id=275388

Micah and me watching Mickey

Helena at the Sweet 16 her mom threw for her

Nana and Micah















Bobby and Micah

Weird, if you can call it that

I certainly wasn’t expecting to hear what I heard today.  I’m not sure I ever heard it actually.  Dr. Jones looked at me and shrugged his shoulders.  And I said it’s not good?   And he said right.
Well I think that’s what happened.  Bobby was out of town so my BC friend Jolie came with me.  Jolie and I met while I was in the ER with my punctured lung in February.  She also had breast cancer (get it? BC friend) and is a patient of Dr Jones so it was like a big old party.  Except we weren’t celebrating. 

Apparently there are lymphatic vessels that run across the breast and there must’ve been a loose cell in one of my vessels.  And when my OB/GYN said she felt something weird, she was right.  It was the cell, growing into a tumor.  It’s the same cancer, kind of like they missed a piece of it when they did my surgeries.  It’s close the skin.  If my left boob was a clock and you’re looking at me, this tumor is at 4:00.  My last one was at 1:00.  There’s like a 2% chance of recurrence in the breast when you have a mastectomy and like a 5% chance of recurrence when you have a skin sparing mastectomy, which is what I had.  But that’s low and we didn’t expect recurrence. At least not this quickly. 

On Wednesday 10/9 I’m having a PET scan to make sure it hasn’t spread.  I asked Dr Jones if he thinks the cancer spread and he said no, that he didn’t even think the PET scan was necessary but we’re doing it.  On Thursday I’ll go back for the results of the scan and get a biopsy of another mass they’re curious about.  On Monday 10/14 I’ll have the lump removed in an outpatient surgery.  And about 6 weeks later I’ll start radiation.  

I am approaching this with a positive attitude. I am so thankful I’m not doing chemo.  I’m a little nervous about radiation but I have friends who’ve recently gone through radiation and I will lean on them during this.  It sucks to have to do this but It’s kind of like a prolonged treatment.  I had a break and now we’re finishing up. 

However, I will tell you honestly that my fear right now is that I’m dying.  I’ve been assured that I am not.  I think I’ll feel better after I see the PET scan results, which I will get the day after the test instead of a week later like I had to wait for the biopsy results.  Although waiting the week gave the doctors time to discuss my case in the breast conference on Wednesday before seeing me yesterday. 

I sent out an email last week that you might not have gotten because I sent it from my phone.  We are doing the Race for the Cure again so if you’re free on October 26^th come out and join us.  Here’s the link to sign up, team name: Kickin’ It Pink

http://neworleans.info-komen.org/site/TR/RacefortheCure/MTR_NewOrleansAffiliate?fr_id=3386&pg=entry

4-0

It’s the second day of Breast Cancer Awareness Month and it feels like every other day to me. I’m sure that’s because every other day I’m aware that I Had Breast Cancer. And even though I had it, I’ll live with it for the rest of my life. It’s not just the scars, boobs, short hair and doctor appointments either. It’s the thoughts that pop into my head like Oh I’ve had a headache for 3 weeks now, crap I’m supposed to call someone if I have a symptom for more than 2 weeks. Or the, my nose is running. How long has it be running? Crap I don’t know. Or the, did I take my pills today? Should I get one of those old-people pill holders? Or maybe it’s that today was the first day Micah saw my port scar and asked what it was.

It’s hard to believe that 8 months have gone by since I had my last chemo. I’ve only missed one doctor appointment, which was yesterday, and I’ve had A LOT of appointments. Bobby is taking classes 4 nights a week this term, which is a pain for me and him. And in true fashion, I find the positive - I think it’s a blessing because it’s making me slow down. I like to get Micah to bed around the same time every night which means I need to be home early. In turn, I haven’t been able to run myself ragged like I usually do because I’m home close to 6 almost every night (but not EVERY nght!).

I really only have 2 points for writing today. One is that I had a check-up with my Breast Surgeon last Thursday 9/26. It was a follow up from my lesson-teaching bday appointment. The mass they thought was a fat necrosis in June had grown and I think they said had blood feeding it or something. I say“or something” because I thought I knew what they were talking about but I don’t think I did. And I must’ve been subconsciously telling myself to not ask for clarification out of being scared, but I didn’t feel scared. Dr. Jones said “We better do a biopsy.” Hmm ok, still not scared because this is like a normal appointment for me where I have another test before I leave. l was ‘fine’ until I left the office, walked past the spot where Bobby and I stopped to hug after my diagnosis only 367 days before and to my car. I got in, started to drive away and felt something on my cheek. It wasn’t just a tear, it was the first of many that came in a short burst before I pulled myself together. After all, I was driving and meeting some friends for lunch. We agreed, it can’t be Cancer. Not this soon. Certainly not this soon. But maybe. Crap, I won’t worry. I won’t tell people. I will tell a few people, how can I not tell my friends I’m meeting for lunch?! And my husband. And my friend who randomly answers her phone THIS time when I call. And my mom. And now I’m telling everyone but only because I find out the results tomorrow and I’d rather tell you Everything is OK! Than to tell the story starting with my bday appointment.

The other reason for writing is because it’s Breast Cancer Awareness month. If you notice somethingweird get it checked. If you just read that and thought to yourself that I told you that last year, You’re Right! So get it checked! Wouldn’t you rather know?

 



Did you miss me?

It’s been almost 3 months since my last surgery and 6 months since my last chemo.  I often forget I had breast cancer which is an awesome thing!  But I’m reminded with things like scars (3 from reconstruction and mastectomy, 1 from the lymph node removal, 1 from my port, 1 all the way across my stomach and a fake belly button, plus a bunch more from the last surgery when they did lipo).

Or when I schedule my annual exam on my birthday because, why not?  I like my OB/GYN and I’m always in and out with those.  Except this time she felt something “weird” in my breast and wanted to make sure it was nothing. Which it was but she sent me down to my Breast Surgeon to get an Ultra Sound.  It was nice to see them J  And then my pap was abnormal.  So a few weeks later I went back for a Colposcopy (when the dr takes a further look at your cervix).  I tested positive for HPV.  My OB started the appointment by saying she normally tells her married patients who test positive for HPV to have a serious talk with their spouse because HPV is an STD.  Lucky for me I just went through chemo so we know the abnormal pap and positive HPV results are related to that somehow (most likely had HPV already, chemo weakened my immune system and HPV surfaced).  I know there’s a vaccine for HPV but I think you have to be under age 28 or so and I hadn’t heard of HPV or the vaccine until I was too old.  My OB isn’t concerned, I’ll go back every 6 months until I have normal paps.  As you know I’m no doctor so in my words, HPV somehow makes the cervix susceptible to cervical cancer in which case we’d remove the cervix but the risk is so low that my OB doesn’t recommend removing the cervix now.  Lesson learned from this?  No more doctor appointments on my birthday!

Or when I take my pills every morning, luckily I’m down to 4.  Tamoxifen (to help prevent recurrence of cancer), Lexapro (for my anxiety, darn that anxiety.  I take 2 because we up’d my dose) and biotin (hair growth!).  I am about ready to buy one of those plastic containers with the slots for each day. 

Or when I try to fix my short hair.  Sometimes it shocks me – where did this hair come from?  Sometimes it shocks others – where did that dark hair come from?  Either way, I think I’m glad I have it although yesterday I wished I was bald again.  But I didn’t wish hard enough to make that happen.

Or when I look at my calendar and see 2 doctor appointments every week.  That’s a pain but hopefully they’ll slow down soon.  It’s better than 6 like I sometimes had during treatment.

I had my last hot flash about a week before I went back to work.  THANK GOD!!!  Those are horrible!!!  Especially in the heat down here.  Oh man. 
I’ve been back at work for 7 weeks now.  It was nice to start at 30 hours/week but I’m back at 40 now and we’re making it work.  Bobby picks up Micah when he’s not at the fire house which is super helpful .  And Bobby has really encouraged me to work out which has been great. I’ve been going to an outdoor boot camp 2-3 times/week and trying to work out other days at work.  I definitely see the difference in what I can do now vs what I could do before I was diagnosed and sometimes get frustrated but I know I’ve improved since I started working out. 
So what’s next?  I have a follow up with the reconstruction surgeon this Monday.  My next Oncology and Breast Surgeon appointments are in October.  My next pap is in January.  I see my therapist next week, she actually let me go a month between appointments this

It’s been almost 3 months since my last surgery and 6 months since my last chemo.  I often forget I had breast cancer which is an awesome thing!  But I’m reminded with things like scars (3 from reconstruction and mastectomy, 1 from the lymph node removal, 1 from my port, 1 all the way across my stomach and a fake belly button, plus a bunch from the last surgery when they did lipo).

Or when I schedule my annual exam on my birthday because, why not?  I like my OB/GYN and I’m always in and out with those.  Except this time she felt something “weird” in my breast and wanted to make sure it was nothing. Which it was but she sent me down to my Breast Surgeon to get an Ultra Sound.  It was nice to see them J  And then my pap was abnormal.  So a few weeks later I went back for a Colposcopy (when the dr takes a further look at your cervix).  I tested positive for HPV.  My OB started the appointment by saying she normally tells her married patients who test positive for HPV to have a serious talk with their spouse because HPV is an STD.  Lucky for me I just went through chemo so we know the abnormal pap and positive HPV results are related to that somehow (most likely had HPV already, chemo weakened my immune system and HPV surfaced).  I know there’s a vaccine for HPV but I think you have to be under age 28 or so and I hadn’t heard of HPV or the vaccine until I was too old.  My OB isn’t concerned, I’ll go back every 6 months until I have normal paps.  As you know I’m no doctor so in my words, HPV somehow makes the cervix susceptible to cervical cancer in which case we’d remove the cervix but the risk is so low that my OB doesn’t recommend removing the cervix now.  Lesson learned from this?  No more doctor appointments on my birthday!

Or when I take my pills every morning, luckily I’m down to 4.  Tamoxifen (to help prevent recurrence of cancer), Lexapro (for my anxiety, darn that anxiety.  I take 2 because we up’d my dose) and biotin (hair growth!).  I am about ready to buy one of those plastic containers with the slots for each day. 

Or when I try to fix my short hair.  Sometimes it shocks me – where did this hair come from?  Sometimes it shocks others – where did that dark hair come from?  Either way, I think I’m glad I have it although yesterday I wished I was bald again.  But I didn’t wish hard enough to make that happen.

Or when I look at my calendar and see 2 doctor appointments every week.  That’s a pain but hopefully they’ll slow down soon.  It’s better than 6 like I sometimes had during treatment.

I had my last hot flash about a week before I went back to work.  THANK GOD!!!  Those are horrible!!!  Especially in the heat down here.  Oh man. 

I’ve been back at work for 7 weeks now.  It was nice to start at 30 hours/week but I’m back at 40 now and we’re making it work.  Bobby picks up Micah when he’s not at the fire house which is super helpful .  And Bobby has really encouraged me to work out which has been great. I’ve been going to an outdoor boot camp 2-3 times/week and trying to work out other days at work.  I definitely see the difference in what I can do now vs what I could do before I was diagnosed and sometimes get frustrated but I know I’ve improved since I started working out. 

So what’s next?  I have a follow up with the reconstruction surgeon this Monday.  My next Oncology and Breast Surgeon appointments are in October.  My next pap is in January.  I see my therapist next week, she actually let me go a month between appointments this time!  And we continue living this life the best we can.  Oh and in November Bobby and I are going on a cruise for our 5 year anniversary (thanks mom!!).

March, April and May

I’ve attempted to update everyone a few times and not succeeded so this post was started a few weeks ago but is pretty current.

The fundraiser we had on March 28th sponsored by the United Firefighters Association was a blast. I thank the UFFA and everyone who attended or contributed in any way for everything you did. And to show my appreciation I volunteered at the UFFA beer booth at Jazz Fest on opening day. Ok, honestly I’ve always wanted to work a beer booth and it worked out to do it with the UFFA. That was a blast too!

In case you haven’t heard, or possibly forgot or maybe were confused… The surgery on Feb 5^thwas successful. The tumor was removed and I can officially say I HAD breast cancer. My lymph nodes were negative. A biopsy of the tumor showed it was Estrogen Positive, we originally thought the tumor was triple negative. Basically what you need to know about this is because I’m estrogen positive there is further treatment to help prevent the recurrence of this cancer so I’m on a drug called Tamoxifen for the next 5 years. It’s just a daily pill with some possible side effects I talked about in a previous post (uterine cancer is one of them) but the risk is small and I’ll be having regular checkups with multiple doctors so we’ve accepted this risk.

Now that I mention drugs, I take A LOT of pills these days! Tamoxifen, Lexapro , Biotin (to help my hair grow faster), an anti infamatory for my wrists and an antibiotic. Right now I take 6 pills a day, eventually I will hopefully only take Tamoxifen and Lexapro and maybe not need one of those plastic things that has compartments for each days pills.

And since I mentioned my wrists, I have carpal tunnel syndrome. I was diagnosed yesterday and will find out the course of treatment on May 20^th. When I went in for my first appointment for this I also had my pinky toe x-rayed because it hurt pretty bad after accidentally kicking something. The x-ray showed that my toe was broken. Seriously? After a breast cancer diagnosis, chemo, surgeries and a punctured lung these little things like a broken toe and carpal tunnel are a walk in the park. I put tennis shoes on the day after the x-ray and went for a walk. I’m not letting a broken pinky toe stop me! (5/20 update - I got steroid shots in both my wrists today.  The Dr said the one sure way to fix the problem is surgery but it's possible the shots will help.)

I had my port removed on Monday 4/22 which means NO MORE CHEMO! What an exciting surgery to have. Everything went well, I was the first surgery of the day at 7:30 and home by noon. Bobby and Micah took good care of me and I was off pain pills by the next day.

May 10th I had my final surgery related to breast cancer.  Everything was successful, the doctor is  pleased with his work and I am too!  I'm still sore, have to wear this almost-full body girdle 24x7 for another week, am bruised and occasionally take pain pills but actually feel pretty good.

We took a trip to Gulf Shores between my pre-op and surgery date on May 10th.  What a wonderful escape!  Thanks to our friends who made this possible.  And as most of you know, Bobby and I met on my first trip to New Orleans for the Jazz Fest (this is my 8^th year!) and we enjoy spending time together at this festival.  It might seem like a bit much for me during my recovery but more than anything, it feels so good to be able to do things I did before cancer came around.

And the most exciting news of all (well, not really) is that my hair is growing back!!! It’s dark brown, which some of you have never seen but is actually my natural color. I can’t really tell yet if it’s the same texture since it’s so short. Some days I put it in a Mohawk, some days I let it be. There are some grays which I cover with mascara (it works perfectly!) or pluck out :) My hair is about an inch long right now. I even trimmed it around my ears the other day.

This was the first day I discovered I could do a Mohawk (3/27)

Check out the hair one month later (Cate and me taking a break at jazz fest.)

Sunday at Jazz Fest – messy!!!

No White Flags - this is me and Steve Gleason, the former Saints player who had a big play the first game back in the Superdome after Katrina. Gleason has ALS and seems positive in all his endeavors. Obviously I don't know him personally and am sure he has tons of challenges but I thought it'd be cool to get my picture with him. I asked if I could and he said yes. Now I only wish I would've chatted with him for a bit. Next time!

This is me being silly with the camera (and Bobby).  I have never worn a scarf or jacket or gloves at jazz fest but I did this year!

 

 

And the sun finally came back to Jazz Fest



Micah at the beach - the first day he wouldn't take his pj top off and got mad at the water for not staying away when he told it to. Second day he didn't go near the water. And this is the third day - the shirt is a swim shirt (the pj thing was actually a good idea) and notice his shoes. Those would not come off at the beach no matter how much sand he got in them. Bobby and I finally got him to sit in the surf with us letting the waves splash on us (Micah's shoes still on).

 

 

 

 

We are rescuing the Tatas again!

We are rescuing the Tatas again!  The United Fire Fighters Association is sponsoring a fundraiser for me at DBC (formerly Daiquiri Bay Café) on Veterans in Metairie. The event starts at 7pm and we’re working on getting some fun items for the raffle and/or silent auction.  A $10 suggested donation will get you food and beer so grab a friend and come by to check everything out.

Estrogen Positive

Being estrogen positive brings about a lot of things for Bobby and I to discuss and make decisions about. 

Should I take the drug Tamoxifen that blocks the effects of estrogen in premenopausal women, in turn preventing my cancer from returning?  I am only 2% estrogen positive which is very low but it’s above zero making me a candidate for the drug.  The risks are uterine cancer or blood clots.  Awesome, let’s block one cancers recurrence with the risk of a new cancer. 

I can have a hysterectomy but I’m not sure I’m ready to say we definitely do not want more kids.  The hysterectomy would remove my ovaries (which make estrogen) and the uterus (which would eliminate the risk of uterine cancer).  But if I do that I can’t have more kids.  All signs lead to no more kids for us but what if we change our minds in 2 years?  I can start the Tamoxifen now and if we decide we want more kids I can go off it to get pregnant or if we decide we definitely do not want more kids I can have a hysterectomy.  But if we’re going to decide in 2 years that we won’t have more children why not just have the hysterectomy now?  The hospital for my Stage 2 surgery said they’d give my OB privileges to perform the surgery there which is a benefit because 1 – I really like her and 2 – it’s one less surgery.

And you might ask, why does all of this matter if you had your tumor removed?  Ahh this is where cancer gets ugly.  A single cell could have escaped and could be lurking somewhere in my body waiting to catch some estrogen and grow, or divide and replicate.  We hope the chemo killed all those cells but we don’t know for sure so this is why I’m lucky to be estrogen positive.  There is additional treatment that I can have and we know the treatment is effective in preventing the cancer from coming back.  Dr Barnhill says that we got the tumor but she will never say I’m cured because we don’t know for sure that all cancer is out of my body. 

I am sure I’ve said I should have a hysterectomy in the past and I’m sure I’ve said I’m done having kids.  But now I’m wondering why, at 37, do I actually have to make these decisions???   None of it really mattered until I was told I need to decide.  I have a feeling I’ll start the drug and then we’ll decide what we want to do but being able to have my OB perform the surgery at the same time as my Stage 2 surgery would be nice so that I don’t have to have two separate surgeries.  Ahhh and we’re back to needing to make a decision.

So much to say

So much has happened in the past few weeks.

·         My lung healed itself.  No problems breathing since I was released from the hospital.

·         My cancer is not triple negative.  We found out on 2/25 that my cancer is estrogen positive, meaning it grows in response to estrogen.  Previously we thought it was triple negative meaning it lacked estrogen and/or progesterone receptors.  There are no targeted therapies for triple negative cancers.  But there are targeted therapies for estrogen positive cancers so ultimately it is a good thing we found this out.  Besides chemo, radiation and surgery, Endocrine treatments are usually taken for 5 years after treatment (a pill taken daily) to help block the effects of estrogen. 

·         I plucked my eye brows for the first time in about 5 months.  I used to do this daily, not obsessively (or maybe?) but I made sure I’d get the stray brows before anyone else saw them so sometimes there’d be nothing to pluck.  But to go for months without NEEDING to pluck them was hard.  And then all of a sudden I had 5 hairs left on either side, sticking out like an old mans white eye brows that need to be cut.  So I trimmed them because I couldn’t pluck the only brows I had left.  And then I looked and there were stray brows that needed to be plucked! 

·         My hair is growing back!  It’s black and straight so far.  Bobby pointed out to me that it’s less than a centimeter long but it seems long to me.  Long enough to have trimmed it twice which is why Bobby pointed out the shortness of my hair because he wants me to let it grow. (hey wait, is this kind of like me thinking I’m tall???)

·         My Stage 2 surgery date has been set for May 10^th.  The recovery time is shorter since the surgery is not as invasive.  So I’ll be out of work until about 2 weeks after the 2^nd surgery. 

·         As far as my healing goes, I still take pain medicine but am trying to take a little less.  I can sleep on my side now and have tried it but it’s extremely painful on my breasts.  I feel sort of normal when I don’t move but as soon as I move my breasts hurt.  I think this is the nerves starting to work again.  Goose bumps are also pretty painful.  I once told some friends one of my goals in life was to be warm and I think that goal is moving towards the top of the list.  It’s a good sign that goose bumps hurt because it means my nerves are working but ugh, they are very uncomfortable!  I am looking forward to some good, humid heat to keep me warm!  Our house is 73 right now and I’m thinking about getting another blanket.  Then again, a hot flash could come over me and I’d need to remove everything and put the laptop somewhere besides my lap.  I feel like my core temp has gone up since surgery and my hot flashes are more intense.  Who really knows though?  Anyway, the incisions are still healing and I am to clean them twice per day with iodine.  The scabs of my stomach incision are gone.  My stomach is numb so I can’t tell if my pants are falling down or not J.  I wore jeans on Sunday and it was a weird feeling to have something tighter around my mid section.  And I think they fell down a lot.  At least I know I can wear jeans instead of sweats all the time

I’m going to do a few posts because there’s a lot going on.  The next post will be about being estrogen positive.

Home!

Today the x-ray machine was brought to me, I didn’t even have to get out of bed.  Now that’s what I’m talking about!  And the results were good.  Dr Jones came by my room to say my lungs looked better and he was sending me home.  I haven’t had pain when breathing since Friday morning and I know what to look for as a sign I need to return to the hospital plus we only live 10 minutes from the hospital so we were all comfortable with me going home.

I am lucky I didn’t need to get the chest tube although I will say, my train of thought is kind of messed up.   I sort of believe that the bigger the war wounds the worse I must’ve felt so I was ok with having to get the chest tube, if I needed it.  After further research and details from the nurses, I’m quite alright being sent home!