It's been awhile

I’ve started and even finished some entries but never actually saved them and I really don’t know why but here it is.  I’m going to start, finish, save and send today. 

 

I am done with chemo.  I’ve been done for awhile, honestly I don’t remember my last chemo date but even on my last day we didn’t know it was my last day which is a little upsetting.  I didn’t get the end-of-chemo celebration L and I wanted it!  I think I’ve said this before but this time around things seemed to be treated as more of a routine type thing and it was far from routine.  No one should have to go through cancer once let alone twice.  The chemo treatment itself was easier on me but I still HAD chemo AND radiation AND 2 surgeries so far, 2 biopsies AND a gazillion doctor appointments.  Anyway, I’m done with chemo and I suppose that’s the important thing. 

 

The swelling I had in my arm and breast has gone down a lot.  I can wear my wedding rings and watch and I’m not in constant pain.  The therapy helps and I continue to go once a week right now.  I also started wearing a ‘normal’ bra last weekend.  Yippee right?  For those of you who have to wear one every day you’d think I’d be happy to not wear one but I kind of need one.  Kind of, and kind of not since I had my reconstruction surgery last year.  Anyway, wearing a bra is one step closer to getting back to ‘normal.’  Obviously I use the term normal lightly and it will never mean the same thing it used to.

I have an upcoming surgery that is scheduled for July 17^th.  I hesitated about the date and would like to go a little later but the next opening is August 15^th and I’m not sure I want to wait that long.  This surgery is the one I was supposed to have last November but got postponed because of my recurrence.  It’s another reconstruction surgery with Dr Sullivan at the fancy hospital.  Dr Sullivan said it’s Stage 2 with a twist.  Part of the surgery will be removing the lumpectomy scar which I think is pretty cool!

I still have my port in and I’m not sure when I’ll get it out.  My Oncologist said to leave it in for awhile.  Sweet, does that mean I might do more chemo? Does she expect another recurrence?  Ugh, I try not to figure some things out.

I have friends; friends’ husbands, wives or parents and kids; people I don’t know but find out about who are dealing with cancer and I feel so bad.  I pray for you and them.  I can’t imagine a child with cancer.  I can’t imagine Bobby dealing with this or Micah or Helena or my mom or anyone!  Please be diligent and get things checked if you think something is off.  Don’t worry if it’s nothing, wouldn’t that be better than if it were something?! 

Tomorrow is my 39^th birthday.  Holy cow!  39!  I made it!  And I plan to make many more so consider yourself warned that I will continue to remind you. 

 

I guess I haven't taken many pictures lately so here it is, make fun all you want!

 

I'm taking a break!

I had an appointment with Dr Barnhill yesterday to see if I’d be doing another chemo and she said she’s still thinking I’m done but…  I also got an MRI yesterday because of pain I’ve been having, probably associated with the swelling in my arm and breast.  When I go back to Dr Barnhill in 2 weeks we’ll know for sure if I’m done with chemo. For now, I’m taking a break from Chemo.

I requested something, anything, to be done a few weeks ago when I was having serious pain from the swelling and lymphedema.  Dr Barnhill ordered an MRI but for whatever reason it was never scheduled so yesterday the nurse made sure to get it scheduled.  The MRI was scheduled for 5:30pm last night at a different hospital.  No big deal – I’ve been to this hospital before for other people and I’m not afraid of hospitals.  However, the experience could have been better.  The people were nice, the facility is fine but my arm was beat up!  They needed to find a vein for the contrast IV.   Person One could not see a vein but tried to get one, unsuccessfully.  Person Two could not see a vein but tried to get one, unsuccessfully.  Person Three was from the IV team and found one with no problem.  She’s had 30 years of experience with IV’s.  But during the MRI (which was very uncomfortable) I started to feel a cold sensation in my arm and just figured it was the dye going into my arm.  If you’ve had any type of contrast MRI or CT scan you know the feeling, although it’s usually warm.  When the MRI was done I looked at my arm and the contrast dye was dripping from my arm along with blood.  Oops I guess Person Three didn’t do as good as we thought.  Luckily, apparently, the dye is not harmful and I don’t have any bruising from any of the needle sticks.  But I’m ok and we’ll get the results soon.

I think I’ve determined the pain I was having in my arm, chest, ribs and abdomen is from lymphedema in my breast, not my arm.  Ok, maybe both my breast and arm and maybe my new therapist determined it but whatever!  I think we’ve found some treatment that will work.  When I took 3 pain pills within 4 hours (don’t scold me!!) that did NOTHING for the pain my mom suggested maybe I was taking the wrong medication.  So I tried an extra strength Ibuprofen and almost immediately felt relief.  My new therapist, Mary, also did a lymphatic drainage massage (very, very light massage to get the lymphatic fluid moving) which seemed to help.  I have 5 appointments with Mary in the next few weeks and I’m about to call her and ask her to call me if she has cancellations.  Her office is 3-4 blocks away and I can be there in 5 minutes and I think her therapy is helping.

Last Thursday was the fundraiser at Bayou Beer Garden.  People from work came (thanks for coming, it was great to see you all!), the United Fire Fighters Association made dirty rice; a retired chief from the Jefferson Parish Fire Department made hot dogs, chili and gumbo; my friend Meghan made red beans and rice; Bobby made potato salad; and my mom made her version of Swedish bread.  There were lots of raffle and silent auction items, grab bags and door prizes.  And I think we all had a good time.  I hate that these fundraisers are for me although I’m glad they’re not for any of you because that’d mean you were sick and I don’t want that either!  I am forever grateful to all of my friends and family who have supported me in any way through this time in my life.  And although this may sound morbid (and selfish?) it’s wonderful to see how loved I am BEFORE my funeral, which I think/hope is a long ways away.  I’ll try not to get a big head :)

  

I’m including some pictures of jazz fest, which I did get to go to but it was soooo different from other years - I missed a few days, I left early one day and went later than normal other days, used SPF 45 instead of SPF 15, wore wide brimmed hats and I took it much easier than in the past.  Two friends visited for jazz fest and I spent as much time as I could with them but I didn’t go out with them because I just couldn’t do it :(  My friend Erin came to spend time with me and help out with the fundraiser.  We had a great time but again, it was much different from other visits.  No matter what we did the day before I rested the next day.  And the plans we made rarely happened because I was just too tired.  When I’m out and about I try really hard to ‘Be There’ but when I’m home I’m taking it easy.   

While I might be done with Chemo I’m not going back to work yet.  I need to get my lymphedema under control and I have a few more surgeries. I also need to get my stamina back.  It’s hard for me to wait but I need to be healthy!

Nikki and Angie going to Jazz Fest without me :(

Helena passing time by making something in the sand for Robin Thicke

Wide brim hat - fancy!

Possibly//hopefully my last day of chemo.  With Missy, my favorite chemo nurse.

Ahh, the love. It's so cute!

Working at his computer, headphones and all.

Micah and his buddy Portland

Fanning ourselves with my Mother's Day Fan made by Micah

What a difference a day or two makes.  I decided to not put my sleeve on yesterday because it made the swelling and pain worse on Monday.  Today I can actually see my knuckles.  I still have pain but I'm starting to wonder if it's due to radiation side effects still occurring, chemo side effects and the white blood cell shot I got on Friday.  I'm wondering and hoping because lymphedema is a dreaded illness.  I won't say I'm off the hook though, I had swelling a month ago and it went down then the swelling came back.  And lymphedema is a risk I'll have for the rest of my life because I had lymph nodes removed.  Monday was definitely a bad day for me and I thank everyone for your prayers and concern.  

I have a check up with my Radiation Oncologist today and I’m going to badger him with questions about radiation side effects and how long they’re going to last.  I’ve been having pain in my left breast since I had my biopsy in February, which is probably normal because of all the treatment I’ve had but I want to make sure it’s normal and not something that needs to be addressed.  Unfortunately I’ve heard the side effects can last years.

  

I haven’t really provided updates on my chemo treatments in a few weeks.  My blood counts were good for my Day 1 treatment on April 3^rd.  For my Day 8 treatment my counts were low, really really low but Dr Barnhill decided to give me a dose dense treatment (I’m assuming dose dense means less of the drugs) and then Friday I went for the dreaded white blood cell shot.  I’ll see Dr Barnhill again on April 24^th for Day 1 treatment again, as long as my counts are ok again.  I’m going to ask about her plan for future treatments since that will be the beginning of my 4^th cycle.

Lastly, it is hard for me to ask for help because everyone has been so helpful already and it is all appreciated.  If you haven’t seen or heard, my friends, family, United Fire Fighters Association and the Bayou Beer Garden are holding another fundraiser for me.  There’s a suggested donation amount of $15 – if you can’t pay that (or don’t want to) I’d still love if you could make it!  I enjoy silent auctions and the chance to bid on cool items and I LOVE seeing friends and family.  If you, or someone you know wants to donate an item or if you have questions you can email me and I’ll put you in contact with the right person (ksmoore2211@yahoo.com).  

Despite a swollen, aching hand I am still able to laugh with my friends! 

swollen hand w/sleeve - no knuckles.

This guy makes me happy too!

Grrr I'm mad

I haven’t really been too upset about the whole cancer thing, I’ve accepted it and my treatments.  I even accepted losing my hair!  Cancer seemed to be a short term bump in the road that I would deal with and move on.  Even when I was given my second diagnosis I accepted it, started treatment and was looking forward to the end of treatment when I could start life over again.  But I’ve got this problem now and I’m not ok with it. 

My left hand is swollen, hurts and honestly looks ugly!  It’s probably lymphedema which is a risk when you have lymph nodes removed and I had 5 removed last year.  I think we have around 20-30 in our armpits so having 5 removed didn't seem like a big deal to me or the doctors.  It looks like my hand is broken, I want to get an xray to make sure it’s not and I think that’s a common desire.  I read a comment from someone who wished she was having heart problems vs lymphedema.  My watches and bracelets are tight.  I can’t even wear my wedding ring and I really like it! 

The treatment for this is a compression sleeve, physical therapy and exercises I can do at home to help move the lymphatic fluid along but there’s no cure.  I have a sleeve that seems to make the swelling worse, my therapist doesn't think I have too much of a problem (I guess the swelling goes down when I see her) and I’m really upset that I have to deal with this, especially if there’s no cure.  And it really hurts.  It hurts to touch my hand, it hurts to type, it hurts to make a fist, it hurts just sitting here. 

So here it is, my attitude is not positive today.  I am mad and sad and hurting.  If you wondered how I was able to remain positive you can stop wondering because today I'm not. 

How quickly I forget and how quickly I'm reminded

With 3 weeks since my last chemo, I started to forget that I was actually being treated for breast cancer.  The first week I had some nausea, the second week it started to go away and the third week it was gone!   And then came Day 1, last Thursday, and I was reminded that yes, I’m being treated for breast cancer.  I received my normal Day 1 chemo cocktail of pre meds (anti nausea medicine) and the two chemo drugs I get, Carboplatin and Gemcytobin.  The actual treatment (chair time, chemo, infusion, it can be called many things) wasn’t bad.  And I think because it’d been 3 weeks since my last chemo the purple box with the lunch they provide didn’t even bother me.  I even went to Cancer Yoga that evening.  And I woke up feeling ok but as time went on I noticed the queezy feeling in my stomach. 

Sometimes I feel guilty for being active, doing fun things, hanging out with friends, etc… but when I think about the alternative I try to convince myself I don’t need to feel guilty.  I think a lot of people going through chemo spend a lot of time in bed but all that does for me is remind me that my stomach hurts and/or that I don’t feel good.  I do have to pay attention to my energy levels because when there’s no energy, there’s no action.  I try to stay busy, possibly too busy and perhaps I should slow it down a little but there’s no guide on how to act while on chemo so I just listen to my body.   And today has been a little rough.  I asked my mom to pick up Micah and come over for dinner because I wanted her to but it turns out I needed her to also.

I go back this Thursday for labs and my day 8 chemo.  I asked and there’s nothing I can do to help keep my white blood cells in the range that allows me to get chemo.  Nothing I can eat or drink, or not eat or drink will help.  Hiding out won’t help.  Taking EmergenC or extra vitamin C won’t help.  And I won’t know anything until I go in for labs on Wednesday.  Even last time, when my counts were off I didn’t feel any different (500 is the lowest my count can be, I was at 400.  Before I started chemo my count was around 4300.) Dr Barnhill told me to think positively for my white blood cell count to be within the right range so that’s what I’m doing.  Feel free to help out J

An ultra sound, a biopsy, ct scans, a shot (3 actually) and an ultrasound

One whiskey, one shot and one beer sounds so much better!  George Thorogood really knew what he was talking about.

Two Thursdays ago I felt a lump in my breast and I’m not trying to be paranoid but I told Dr. Barnhill about it and she said to get an ultra sound from Dr. Jones so I did, that afternoon.   While looking at the ultra sound Dr. Jones said to get a biopsy, so I did that last Tuesday.  Then Thursday, while waiting for my lab results for chemo I received a call from Dr. Jones’ office saying the preliminary biopsy results were good, the lump is not cancer.  When the lab results for chemo finally came back (3.5 hrs after my appointment time) I was told my white blood cell count was low, I would not be getting chemo and that I needed shots to boost my count.  I was also told my liver enzymes were elevated and I needed ct scans of my abdomen and pelvis, so I went to the hospital across the way and had that done.  Then I went back to the cancer center for my shot.  Then I went to Cancer Yoga.  Ahhhhh

Friday I needed to go back for a shot and while waiting I received a call that my ct scans showed a 6cmx6cm mass on my right ovary.  I also went for a shot at 7:30am Saturday morning.

Yesterday I had an ultrasound of the 6cmx6cm mass on my ovary.  Luckily this is only a cyst.  I imagine if I didn’t have cancer we’d be a little concerned about the cyst but we aren’t and neither is my doctor.  

Bobby and I celebrated last night.  Maybe not with one whiskey, one shot and one beer but definitely not an ultra sound, biopsy, ct scans, shots or any other ultrasounds!

In memory of my dear friend Cristie

One year ago today, my friend Cristie and I completed the first 5k for me after 8 rounds of chemo and multiple surgeries.  Little did I know this would be our last 5k together.  Granted, we could have done more throughout the year but that’s beside the point!  Cristie got me into running (Bobby tried, Cristie succeeded).  One year she made me do the Crescent City Classic which is a 10k.  When I told my Oregon friends I ran that race they surprised me by telling me they signed me up for a half marathon, so I had to train.  I started running on the treadmill but Cristie explained to me how boring that is and boy was she right!  Just ask Nicole who had to do her long run day (19 miles?) on a treadmill (because of the OR winter weather) while training for the Boston Marathon.  Cristie would get me to go run at the park.  We’d do 2 mile runs, 4 mile runs, 2 mile organized Free For All runs (with beer at the end!), 5k’s on Fridays, 5k’s on Saturdays, The Turkey Day Run (she made me run the entire 5 miles once.  I’ve done it since but man, Cristie you kicked my butt!)  We even put our workout gear on and showed up at the end of Mardi Gras ½ marathon one time, just to hang out!  I often wanted to walk instead of run but she told me that took too long.  Too long to finish and too long to get to the beer J

During my first chemo stint Cristie would call me every other day to see how I was doing.  At first I thought to myself, why does she keep calling me for no reason?!?!  Then I realized, that was Cristie’s way of checking on me, showing she cared and touching base.  Once I realized that I didn’t question her reasoning, I was just happy to hear from her.  I found out this weekend, that was her style. She “randomly” checked on so many people.

I didn’t realize how much Cristie and I did together until Tuesday, March 4^th.  I got a call at 10:50am that Cristie had passed away.  Cristie took her own life.  Cristie rarely complained about anything.  I know she dealt with a lot throughout her life but she always had a smile on her face and was there to cheer us all on.  We are all confused.

I’ve been reflecting ever since that call.  Cristie came to Micah’s birthday party and was so excited to give him the gift she found for him.  She found a camera that she knew he’d love because he was having fun taking pictures with her camera at the Race for the Cure in October.  I started looking at pictures of Cristie and me.  Oh my did we do a lot!  We worked together for 3 years. We went to Wednesday at the Square together, worked out together, we ate Taco Salads from the Purple Cactus on Fridays together.  We went to French Quarter Fest, Jazz Fest, the Irish Channel Parade, Mardi Gras parades, St Patrick’s Day parades, celebrated birthdays, New Year’s Eve, Halloween, Thanksgiving, Easter and probably some fake holidays we made up.  We spent one Father’s Day in baby pools in my backyard and called ourselves the Housewives of Metry.  Our husbands were working but we still celebrated with our girlfriends.  I know her family, she knew mine.  She called my mom “Mom Carly.”  She was so excited for me to be pregnant she bought Micah a onesie well before I was showing.  She came to my bachelorette party in Las Vegas and planned another one for me in New Orleans (with the help of a few of our other friends). I planned her bachelorette party and Bobby and I went to her wedding in Las Vegas.  As you can tell, we did a lot of things together!

I love Cristie.  And I miss her so much.  I’m going to miss her checking in on me and I’m going to miss that she would offer to bring dinner but we all know her husband made it J  Same with the 7-layer bean dips she would bring to parties.  She did make a mean Velveta-Rotel cheese dip though!

I’ve been feeling decent in terms of my chemo. My side effects have been mild.  My next treatment is this Thursday and I’m hoping to continue feeling decent.  I’ve decided to register for a 5k at the end of the month.  I don’t want to say it’s in honor of Cristie because I don’t want to not succeed or get sick and not feel like running and feel like I let her down.  But I will use my memories of her to keep me going.  She always ran faster than me so I’ll just keep going, trying to catch her and one day I will!

Cristie and Micah.

Cristie, Dawn and me after the Crescent City Clascic.

Cristie and me at the Saints Super Bowl parade

 

 

Jenniver, Rachael, Robert, Cristie, Meghan and me after lunch for some birthdays.  Or maybe just hanging out???

 

Cristie and her husband Wade sporting their Kickin It Pink shirts

 

Race for the Cure 2013 (Cristie is to my right (your left) with the pink headband)