A Major Milestone - Final Chemo Treatment!

 A MAJOR MILESTONE!

Well, here we are – not totally finished, but a MAJOR milestone achieved!  We're all done with Chemo!  Well, at least the nasty stuff (Taxotere and Carboplatin).  We started the first chemo treatment on my birthday (yes, this is Justin writing this post), and ended with the last treatment on Jill’s.  Not the ideal way to celebrate a birthday, however, certainly birthdays that neither of us will forget anytime soon.  Either way – it was great to “ring the bell!”

Before I spend some time recounting the journey, I feel it is necessary to say thank you to everyone for your love and constant support for Jill, the kids and me.  Without you, the cancer treatment is just medicine.  All of YOU have made the treatment something that is healing to the body and soul.  I could write for hours about each of you, so please forgive my brief and condensed “thank you.”

To my beautiful wife, Jill – yep, I am thanking you.  You’ve inspired me every day.  The way you’ve faced this challenge and been an example to me and so many others, it is truly amazing.  I wish every day that I could take your place in this challenge…..I am so blessed that I can help you through it.  It has truly made us grow even closer, and I love you more every day.  You are beautiful, you are strong and I love you – always, always.  I am so grateful for our challenges, that we can face them together.  I am so grateful for our cute kids – it gives me that much more of you, but in a totally different version.  They are wonderful.

To Frankie –  I’ve told people, “the best way to describe Frankie is a whole lot of Mother Teresa, and a little bit of Rosa Parks”…..love with determination.  You’ve been so absolutely incredible to us – there isn’t a week in this entire journey that doesn’t have your fingerprints on it – you’ve given Jill and me so many reasons to smile.  This list can go on and on, but I will never be able to thank you enough for all that you’ve done.  I pray one day that we’ll be to show the kind of charity you have shown us…..for the yummy dinners, for the “Frankie Blankies” to Jill and Addi, for helping Jill with hair, for opening up your home and loving family, for setting us up with Komen and Ann Partridge, for being the most incredible boss, for the encouraging and loving emails just when we needed it most.  For your family (here in Utah and those fighting a similar battle in California) and their love – thank you.  For learning about the medicines and always asking questions we didn’t come up with, for all of the advice, for all of the laughs and for all of the smiles.  We love you very much.

To Jill’s family – Thank you for being there – for reaching out to Jill and me and always showing that you love and care.  For all of the dinners, support and watchful care for the kids.  I’m not even sure Addi will remember just how rough it was this summer – she’s had a pretty good couple of months because of all of you.  Even the extended family – thank you Natalie for flying out and spending a few days after Jill’s fourth treatment.

To my family – Thank you for all of your support for Jill and the kids.  Again, for the meals, texts, phone calls and care for the kids.  Mom – you especially have been so truly amazing, doing all that you do on a daily basis and still being the best Mom anyone could be blessed with.  We love you all.

To our JetBlue family – AMAZING.  This goes way beyond a company and values.  We are so grateful for each of you – you make JetBlue what it is, and there is nothing or nobody else out there like you.  For all of the care packages, the books, the t-shirt days, the pictures, the meals, the cards and letters of encouragement, the blankets – wow we have so many blankets!  Nannette – not just Jill’s boss, an incredible friend and (don’t get mad at me), mother to us both.  We love you.  To the wolf-pack…yeah, you know who you are.  For your constant support and love – you truly are Jill’s sisters.  To everyone who helped make the video in prep for Jill’s last treatment – so touching and gave her a dose of something you just can’t get in medicine.  Incredible.  Julie and Janet – you are both so great – we love you both.  To all of the JetBlue leadership, from everyone in SSC and also those in New York – thank you for everything. 

To our neighbors – For constantly checking in on us, for the meals, and for your support to keep our house from falling apart.  Kelcy – to you specifically – thank you so much.  I am so grateful for everything you’ve done and for your charity and friendship.  For the time you spend with Addi and Carter – for inviting them into your home and family.  Addi especially thanks you for the chocolate milk, cookies and other forms of sugar J.

To everyone else – THANK YOU.  If you were part of Jill’s cancer treatment team, someone in passing, or anyone that hasn’t been mentioned above – thank you so much for your love and prayers.

Now for a quick timeline of events – what a six month blur!

·         2/14 – Valentine’s day. Addi hits her head on Jill’s chest, first notice of a lump.  I still remember thinking it was nothing, and not wanting Jill to be concerned about it

·         2/15 – Jill’s 28 week appointment.  Her doctor recommends we have it checked out – doubted it was anything beyond a clogged milk duct

·         2/16-2/17 – Ultrasound and biopsy.  They knew all along it was cancer at this point.  Ultrasound found the first lump which looked abnormal, and second lump was found when they went to perform the biopsy.  At this point, I remember being in complete denial

·         2/21 – Mammogram.  Nothing official yet, but getting closer to telling us.  Recommended we setup an appointment to see a surgeon “just in case.”  Oh, how bad you want them to be wrong.

·         2/24 – Diagnosis day.  I still remember we agreed to go to work so we wouldn’t spend the day pacing at home. I was looking at my phone every five minutes – going crazy.  We took the call from Frankie’s office and just cried when we heard the results.  It was unreal, and I’ll never forget that moment.  Telling our family was just as hard, but we did it that night to start moving forward.  The support from JetBlue was faster than immediate and absolutely incredible.

·         2/29 – Dr Rosenthal.  This was our first time meeting her – felt very uneasy around her – she just seemed like she was ready to cut.  Hearing her say that they may consider chemo while Jill’s pregnant.  Are you crazy!

·         First week of March – Cancer clinic. This was great information, but we just weren’t ready for it – a round-table of doctors for Jill based on what had been discovered.  I’ll never forget, however, the oncologist – Dr. Samuelson.  He was so incredibly insensitive and had no tact.  Watching him tell Jill her hair was going to fall out and then watching his response (or lack of) to our response – just too bad.  This was probably the hardest day.

·         3/5 – OB appt. – Safe to say he was as shocked as we were.  He was incredible though – he collaborated with the surgeons and oncologists and helped form a plan that he felt very comfortable with.  Jill would be having surgery on 3/28, then delivering on 4/18, then starting chemo on 5/8.  Incredible timing to say the least – a few weeks earlier and the conversation about our little Carter would have been much different

·         3/7 – Dr. Rosenthal.  Back again we go – after having a treatment plan set, making sure we’re all setup for appointments with her – did the BRCA test this day as well (thank god it turned out normal)

·         That same week – Dr. Chen. First time meeting Jill’s plastic surgeon. She was fantastic, and gave Jill such great encouragement.  We started getting more comfortable at this point.  I still remember, however, just as we were leaving her office….another patient, who was visibly far into chemo stumbled in looking very sickly and feeble.  This was very hard to see and Jill immediately became emotional.

·         3/19 – Dr. Rosenthal.  Frankie joined Jill for this one – it was great to have her join, and I was stuck in some meetings that were very challenging to reschedule.  That day, Jill tried on her first wig in Frankie’s office – I still remember standing there amazed while she tried them on – the love, friendship and support.  I will never forget that moment.

·         3/20 – 3/25 – Pre-surgery getaway.  A quick trip to San Diego, and then meet up with Addi and some family at Disneyland for a few days.  Lots of late night conversations and a great pre-surgery prep.  This was SO helpful in getting Jill mentally ready.  So grateful for this time.  Pushing Jill around Disney in a wheelchair was not easy though!  She was near full term, and it was hot outside!  Addi loved every minute of it.

·         3/27 – day before surgery.  JetBlue ordered “fight like a girl shirts” and the entire leadership team was wearing them in support.  They also put together some incredible care packages for Jill, Addi and me.

·         3/28 – the big day, surgery.  This started SO early, and we didn’t get any sleep the night before anyway.  I remember laying by Jill the night before knowing we were about to start the journey  - neither of us slept at all.  She finally got into surgery after 10AM, and wasn’t out until the early afternoon.  The time in the waiting room seemed to last forever.  Tried to pass the time by getting food, and keeping friends and family updated.  Spoke to Frankie just after lunch and will never forget the conversation.  Ran up to the Apple store to get Jill something to keep her from going nuts over the next few months – a new iPad.  We spent the night so they could keep monitors on Carter and Jill – making sure that the little guy didn’t want to make an early arrival.  Dr. Chen and Rosenthal said she did great – they only had to take out a few lymph nodes, but did not see invasion into other areas.

·         3/29 – 4/3 initial recovery.  Lots of pain medication, and not a lot of sleep.  This was really tough, and hard to see Jill in pain.  JetBlue and our families were great – our entire table was covered in flowers and we had meals to last for more than 10 days. 

·         4/3 – Dr. Chen. First post-surgery appointment with Dr. Chen.  Everything looked great.  Scheduled next tissue expansion for the following week

·         4/10 – Dr. Stinnett.  Our first time meeting Dr. Stinnett, our oncologist for the treatment plan.  He was great with Jill, very personable and knowledgeable.  He also reached out to Ann Partridge (Frankie helped us contact her) to align on the best treatment plan for Jill.  We scheduled our first treatment for May 8^th, and planned to go to chemo class.

·         4/11 – Dr. Chen. First tissue expansion.  She did great, but WOW the pain!  Added over 100ml to the expander.  Pain meds were wonderful this night! Just one week away from the little guy and everything was on track!

·         4/18 – Carter’s arrival. The best day of the year for all of us.  We got the hospital quite early and were in our delivery room by 10AM.  Jill’s brother Todd was kind enough to bring up some Barbacoa to eat while we waited.  JetBlue also sent along some flowers – thank you!  Everything went great.  Carter was born at 6:54 PM, weighing 6lb 13 oz.  They initially measured him at 18.5 inches, but his first week appointment showed him corrected at 20 inches.  Friends and family visited us that night and the next day, and “most” everything was great.  A true blessing in the middle of everything.

·         4/26 (5/1) – Chemo class! We missed our first class – totally wrong schedule issue.  At least we got a night out together!  Chemo class is really not that exciting trust me.  A group of five of us – three with cancer, and two spouses watched a VHS (yes, a VHS) video about chemotherapy.  The video was less than impressive, but sparked good conversation about what drugs and other supplements can be used to make life “normal” during the side effects of the main chemo treatment.  We met a great lady who just found out she has stage III breast cancer.  She was planning her daughter’s wedding the weeks leading up to this, and now had to plan around a heavy chemo regimen.

·         5/2 – Addi’s big test. All the while, Addi had been struggling with urinary tract infections – starting about the same time as Jill’s diagnosis.  Major fevers, quickly onset, and way too many antibiotics.  She was tested this day for kidney reflux, which tested positive.  She was so difficult, they had to give her an amnesiac – made her have double vision and all.  I felt horrible for her, but will admit, it was a little funny listening to her be a little loopy.

·         5/4 – Dr. Chen.  Second (and final) tissue expansion before Chemo.  Not as much fluid, but still some very familiar pain.  Glad we were going into the weekend on this one – pain meds were a close friend again.

·         5/8 – First chemo treatment – Very scary – Jill had an allergic reaction to Taxotere, and her heart rate fell to the high 30’s.  We decided to try again the next day, which is the normal course for those who have reactions to Taxotere.

·         5/9 – First chemo treatment (let’s try that again) – Very scared as we went in again, worrying that she’d have to face the “second best” treatment if she couldn’t continue with Taxotere.  Lots of steroids and Benadryl before the dosage.  Her heart rate stayed in the low 40’s and we finished the day relieved, but exhausted. 

·         5/10 – Neulasta shot – Following each treatment, we go in the next day for a Neulasta shot – which helps your body produce more white blood cells.  During vitals, Jill’s heart rate was in the high 30’s – dangerously low.  Oddly, she didn’t feel faint and had plenty of energy given two days of chemo.  We were sent to the cardiologist following the appointment, a few hours later.  UGH!  We sat in the Cardiologists office for over 90 minutes, just to be told that they wanted us to head to the Emergency Room so tests could be done and we could be seen by a real doctor.  So, we walked to the ER – when we arrived, they were surprised Jill had the energy to even walk.  Two hours, five x-rays, one Echo and one EKG later – and nothing.  Just go home and watch for more symptoms.  We searched the web based on what drugs she was taking and initially concluded that the Intravenous Zofran was the culprit.

·         5/12 – Race for the cure – So determined, Jilly wasn’t going to miss this for anything.  She was still very puffy, nauseated and tired – but that wasn’t stopping her.  We drove downtown (with a few more thousand) to support the Susan G. Komen race for the cure.  It was a great event, and Jill had supporters from our family, JetBlue and even quite a few from the neighborhood.  It was very touching to us – we all sported our “Jillybean” shirts and walked the mile in about 30 minutes – and had a great time.  Following the event, we spent time with some very close friends – it was so healing.

·         5/15 – Nadir. Following each treatment, we have a Nadir appointment about seven days later – your “low” point to be tested and meet with the Oncologist.  We agreed with Dr. Stinnett that we’d try a different anti-nausea for round II.  Just one week in all so much adventure and stress already.

·         5/18 – Cardiologist.  We’d had simply had enough – we were so sick and tired of doctors, needles, and even the smell of the hospital.  We weren’t going to find anything new, so we called Dr. Stinnett who had an “appointment on our behalf” sharing everything with the Cardiologist – thanks, Doc!  He said that there really isn’t anything else we should be digging for unless there are more accompanied symptoms – shortness of breath, etc.

·         5/22 – Time for the port. If there wasn’t enough poking and prodding, we spent the day at IMC getting Jill’s port placed – another device made just for poking and prodding.  The surgery was fairly short, but the doctors left enough dermabond on Jill to hold the world together.  Gave her some pretty strong pain in her shoulder and neck as well.  More meds, please!

·         Weekend of 5/25 – The big haircut. This was one of the saddest days of all.  There is nothing more challenging in the cancer treatment for a patient than getting used to a new look – one without hair.  It was so hard to watch Jill cry as we cut off each braid of hair – Addi watched as well in wonder.  I don’t remember sleeping at all that night thinking about how hard this was on Jill.  I wanted more than ever to just take all of this from her – I’d do it in a heartbeat – just didn’t want to see her cry again.

·         5/29 – Second chemo treatment. This round, we were a bit more prepared for the routine.  The side effects were worse, but Jill did great.  We sat next to another patient who was terminally ill – very sad.  His treatment was rough – every week, and the outlook was not good.  It was very humbling – there are so many others in such worse situations –as bad as it is for Jill –we are so grateful that we have options and time.  Some just don’t get that luxury.

·         Weekend of June 4^th – Anniversary. Because we couldn’t really get away, and were still getting use to life on chemo, we booked a night up in Park City for us and the kids.  It was just far enough to relax, and close enough to be comfortable.  It was really good for Addi too – it felt like we’d spent more time with doctors than we did with the kiddos.

·         6/19 – Third chemo treatment.  This round became more difficult as Jill began seeing blood in her urine – a kidney infection.  As well, she experienced very severe back pain and required some additional tests and imaging –which didn’t find anything (a good thing), but didn’t indicate there was anything else we could do except stay ahead of the pain with drugs.

·         6/22 – Evacuated. A major fire hit Saratoga Springs this week and over 1,000 homes were evacuated. Friday morning of this week, we woke up to a huge cloud of smoke at the top of the neighborhood and sirens throughout.  We were evacuated shortly after 10AM and were able to return the next day, telling the FIMA guard that Jill needed medicine – yeah, it was bad, but totally worth getting back in our home.  When we left, Jill was feeling very sick, and very tired.

·         6/30 – Spartan Beast.  Us boys signed up for the Spartan Beast – a 12.5 mile obstacle race.  We rented a home up in Midway, and Jill’s sister Stephanie and family flew out.  We had a great time, and Jill was feeling great, with the exception of some digestive complications.

·         7/4 – Fourth of July.  Jill was feeling great as this was her third week after the third treatment.  We spent the day with family, and ended up watching fireworks from Redwood Road.  Oddly, the better sight was the Quail fire in Eastern Utah County. 

·         7/10 – Fourth chemo treatment.  This treatment was definitely the most challenging treatment – the nausea got ahead of us and we never seemed to get caught up.  Jill is usually down from Wednesday through Saturday – sleeping for just about the entire day, taking anti-nausea medicine, Claritin and ibuprofen as needed.  This treatment, she didn’t start feeling better until after Sunday – and at one point was foaming from the mouth – feeling completely toxic.  Not fun at all.  A huge thank you to her cousin Natalie for flying out and spending time with Jill and the kids – we appreciate you!

·         7/17 – Routine Echo.  With Herceptin, there are risks of heart damage as it targets the rapid dividing cells with a specific protein makeup – some of which are found in the heart.  This was Jill’s third echo in a year, and all checked out.  Just glad this one wasn’t in the Emergency Room like the last.

·         7/31 – Fifth chemo treatment. This treatment was the most mentally challenging because Jill was at her physical lowest point, and knew it wasn’t the last one.  Because Jill struggled so much on the fourth round, her doctor gave Amend and Aloxi as part of the treatment, and also provided oral Zofran, to take with Prochlorperazine – which made a huge difference.  By Sunday, Jill was feeling much better and ready to get out of the house.  Knowing the final treatment was just three weeks made SUCH a difference – the end was in sight!  We scheduled our first meeting with her radiologist, to begin radiation in September.

·         Weekend of 8/18 – A little Beach for the Birthday. In prep for final treatment, and to celebrate Jilly’s Birthday, we flew down to Southern California to spend two days in Newport Beach.  This trip was so incredibly relaxing – we spent plenty of time in the sand, ate great food, and spent Saturday night in the sunset watching whales and dolphins just off the shore.  At this point, unfortunately, the symptoms are still very strong – dry eyes, dry skin and finger and toenails that are ready to fall off.  Is it over yet!? 

·         8/21 – Sixth chemo treatment. Just walking into the hospital, Jill started feeling sick – the smell, the sound of the elevator – all too familiar to feeling sick.  Even before we were past the waiting room, Jill was anxious and feeling nauseated.  The effects were immediate – tons of Benadryl, steroids and even more anti-nausea.  It was so liberating seeing Jilly ring the “I’m done” bell – the doctors gave us a bottle of sparkling cider to celebrate :)

Looking ahead:

I couldn’t be more proud of you, Jill.  She’s faced such a touch summer, and done it with composure, grace and a positive spirit.  We’re not done with the battle, but we definitely feel like we’re out of the woods.  It’s Wednesday now and she’s sleeping off the treatment – cannot wait for the weekend with her and the kids!  Once again, thank you to everyone for their love and support.  We love you all.

And the Adventure Continues...

Carter’s Blessing

On June 16^th, Father’s Day, we blessed our baby boy! It was such a beautiful sunny day, surrounded by family and friends. It couldn’t have gone better. Here are some pictures of Carter dressed all in white – as Addi would like to call it, Carter is in his wedding outfit. J

As a journal entry for myself, I was asked after the blessing to bear my testimony (surprise, surprise for me). I won’t put it all down as I don’t want to get too churchy, but I want my kids to be able to reflect back on this day and remember some of what I expressed to the congregation. I have a true testimony that everything happens for a reason, Heavenly Father has a greater plan in store for each of us, no matter how little or small it is. It sounds weird but I believe it can even come down to needing to sneeze or saying hello to someone. These small motions may put a thought in someone’s mind which then requires them to action it or not, but there is still impact there some way or another.

During this trial, I have never asked myself the question “Why me? Why do me and my family have to go through this? It’s too much, I shouldn’t have to be going through this, I have always been healthy…” The reason I don’t ask those things is because I know there are great things in store for us. Whether it is teaching me to be a better person, to take a step back – slow down and enjoy life. Not letting the small moments in life pass me by. Ability to let others serve me, since I like serving others and have had to learn to let others help me. It may also be so I can help others in the future through their trials and have more compassion and love for them. I am not sure exactly what it is, but overall, I am grateful for this experience. I may not be grateful on a daily basis especially right after my chemo treatments but I do believe my family, friends and I are being blessed by all of this.

3rd Round of Chemo

On June 18^th, I received my 3^rd round of chemo. Everything went smoothly, my heart rate and vitals are back to normal and we used the Aloxi instead of the Emend(anti-nausa meds). Even though everything went well while sitting in the cocktail (chemo) chair this round of chemo hit me harder than the 2^nd treatment. My red blood cell counts were very low 27% (if you reach 25-26% you receive a blood transfusion) so I was anemic to begin the treatment so as you could imagine, it knocked me down pretty quick and hard. I was face down on the couch for  four days, asleep all but four-six hours a day. I hated it as I do not like to sleep my life away. I like to be able to get out of the house enjoy the sunshine, play with my kids, help others, run errands – feel like I accomplish something. I am hoping my next treatment, on July 10^th will not kick my butt as much as this treatment did but I have been told over and over again, the treatments will get hard and it will take my body longer to recover…yuck!

Unplanned Side Effect

Thursday after treatment, June 20^th, I was not feeling well. My body was exhausted, I was still sleeping a lot and then I began to receive a little bit of back pain. Come to find out I had blood in my urine and needed to start an antibiotic. At first, the doctor thought it was a kidney infection (I have never felt one of those before and my heart goes out to those who have) but after taking the antibiotic and not having any blood any longer the back pain came back in full force (pain scale from a zero to a nine within a matter of minutes) we ruled out with a urine culture it was not a kidney infection. After a CT scan and ultrasound we determined everything was normal. They don’t know what was causing the pain or the blood. The doctor told me that something’s just aren’t explainable but it is common for the neulasta shot and taxotere to have an allergic reaction and inflame the bones, so that is a possibility of what happened and the pain I felt.

I just truly hope that doesn’t happen again as I hate to take narcotics but when the pain is that severe I have no choice.

Fire Evacuation

The Friday after chemo, June 21^st, our neighborhood received orders to evacuate do to a fire in the mountain above our home. It was not a pleasant day as I wasn’t feeling well from the “not so much kidney infection” and couldn’t move easily. Luckily Justin was working from home that day and with the help of his Mom, they both got us out of the house quicker than I ever could. We stayed at Justin’s Mom’s house for the day so I could rest and then spent the night at my Dad’s. It was a nice set up for us in these conditions but nothing is like our own home and bed. We couldn’t wait to get home to know that our home was safe from smoke and any fire damage.

Family Time

My Sister, Stephanie and her family from Pennsylvania were in town for a quick summer visit to spend some time with me prior to my 4^th chemo treatment, so we decided to spend some time as siblings up in Midway, Utah. We rented a nice house and had a big slumber party. It was like to good old days when we were all young and living in our parent’s house. Not to mention all the grandkids had a blast and didn’t want to leave. I truly enjoy all the time I get with my family. There is nothing better than enjoying the grandkids and reminiscing about old times with my siblings.




Kids building another bridge in the backyard.

 




Sister's Family - The Kozels

 

Spartan Beast!

What an amazing accomplishment Justin and my Brothers (Mark, Todd and Jordan) did. They ran the Spartan Beast – 12.5 miles with 25 obstacles with little training for the event. It was so fun to get out in the sun and enjoy the day with my family. I got great pleasure watching each of them cross the finish line together as a team. It gives me so much strength knowing they set out to finish this daunting task and were able to finish it, even though at times they all wanted to quit do to the exhaustion. It gives me courage to keep going with my treatments, no matter how difficult they may become. It will all be worth it in the end. Just like the Spartan Beast finish line, I will get to celebrate my victory soon as well! I am really looking forward to August 21^st, my last chemo treatment, when I get to throw a party to celebrate with all of my family and friends. Even though the journey won’t be 100% complete, as I will have to complete radiation once a day for 5 weeks, Herceptin every 3 weeks until May 2013 and last but not least take an oral antibiotic - Tamoxifen for 5 years. But at least the most difficult treatments will be complete! I am extremely proud of Justin for being such a great example to me and for finishing the race. I love you baby!




 

 





Aston & Ryker finishing the kids Spartan race









Hair Loss, Port & 2nd Round

A lot has happened since the last time I wrote…I have lost my hair, had a port put in to my chest, and received my 2^nd chemo treatment.

The Port

After being poked and prodded during my 1^st week of chemo, I wanted very much to have the port put in as soon as possible. For those of you who might not know, due to the lymph nodes being removed during the mastectomy surgery, I am not able to use my right arm to take my vitals, draw blood or pretty much anything medically with it to help prevent Lymphedema…..so my left arm gets to take all of the beatings – blood draws, IVs, vitals, etc. and it had had enough “pin-cushion” so I decided to get the port put in a week after my first treatment. Either way, I would have had to get it so I thought sooner the better.

Getting my port was an interesting experience - it was a 90 minute outpatient surgery, but in total, it was a 5 hour appointment. For those of you who don’t know what a port is - it’s a little device that is implanted in the chest, and is connected by a soft, slim catheter tube that goes through a vein all the way to your heart. The catheter protects your vein during treatment. The port acts as an entry point for all treatments, it can be used for a blood draw, as well as infusion for all the chemo drugs. This port will help tremendously so the nurse won’t have to hunt for a good vein to use.

The surgery went well but I was not happy with the surgeon because the appearance of the incision site was hideous. First, the incision was made on an angle instead of being straight. Second, the dermabond (like super glue) they used to close the incision site, was blobbed on me, unnecessarily. And, third, they used me like a napkin – I had derma bond on my shoulder. You could see the person’s finger print as if he/she was getting finger printed for committing a crime. I didn’t take a picture of it but now wish I had.

On a positive note, I wasn’t too sore from the surgery, the dermabond came off quickly and the incision site has healed nicely. The only downside to having the port is that it is sensitive to the touch (Carter bonks it a lot when I burp him) and it hurts to sleep on that side of my body. For whatever reason it irritates my neck. But other than that, I am pretty happy with it.



Picture of the port



Picture of the port in my chest (the picture is turned sideways)

Torture! One of the worse things I think you can do to a women is make her shave her head…

From my first visit with the doctors to discuss my treatment plan, I knew I would lose my hair and have to see my bald head. I remember when the doctor was listing the side effects of the chemo and said “hair loss” that is when I cried for the first time in front of a doctor. When I got up to use the bathroom I couldn’t look at myself in the mirror because I couldn’t imagine myself without hair, eyebrows and eyelashes. It was the first time I felt sorry for myself.

I tried to prepare myself to cut my hair, but I dreaded thinking about it, so didn’t do a very good job preparing emotionally for it. Thanks to my very special friend, Frankie, I had a few wigs (cut and styled just like my hair) and hats ready for the event, but I wasn’t ready for it (the clippers) to shave it all off. Every morning following my first treatment, I would wake up and look at my pillow for chunks of hair. Even though my head hurt really bad, and the doctor told me it would feel better if I cut my hair, I decided I wasn’t going to cut it until it started to fall out on its own. I figured that women go through pain for beauty all the time, what’s one more thing. J My plan was to cut it once it began to fall out, and then donate it to Locks of Love. Lucky for me, it wasn’t until day 18 that my hair started falling out. I remember me panicking when it started because I was in the shower and every time I ran my fingers through my hair small chunks would cover my hands. It was bad enough to where the drain would clog. I knew I needed to stop touching my hair and the time had come for me to cut it.

I was very nervous and concerned how Addi would react to me having no hair so prior to the event, Justin and I talked to her about it quite a bit. Addi understands (at her level) that I have an “ouwie” on my boob and that I have to take medicine to make it go away, so we told her that Mommy won’t have hair for a little while due to the medicine I am taking to help with the “ouwie” on my boob. Surprisingly, Addi responded very well and actually understood. She would say to others, “my mommy isn’t going to have hair and she is going to give it to a little girl who is sick.” I am very thankful with how much she understood and how compassionate she was about it.

While being tortured (cutting my hair) I had Addi in the bathroom with me and Justin. Since I didn’t prepare every well for it emotionally, I cried during the process. Addi recognized it was a difficult time for me so she held my hand and began to remind me that it would come back and that my hair was going to help a little girl. It took a lot out of me, however, I couldn’t help but smile knowing that my baby girl was so compassionate and sensitive. Though it was extremely difficult, it was a happy moment to know that my husband and daughter truly love me for me and don’t look at me different. 

I plan to post pictures of me wearing all the wigs and hats for you to see and maybe I will have the courage to post a picture of my bald head. It took me a week or so to get used to seeing it so I hope it doesn’t freak you out. 

Round 2 of Chemo

About a week after I got my port I had my 2^nd round of chemo. Unlike the first time, this treatment went very smooth. Due to my heart rate dropping during the 1^st chemo treatment, we switched anti-nausea medications from Aloxi to Emend to see if Aloxi was the cause of my low heart rate. Well, it wasn’t the root cause, my heart rate was in the high 30s while I got my port and I did not have any anti-nausea medication in my system. Also when I checked in for my second chemo appointment, my heart rate was in the low 40s (prior to receiving any meds). We are beginning to think that it might just be my new norm and could have potentially been my normal heart rate prior to being pregnant. The good news about my heart is that I don’t have any other symptoms that would cause the doctors to be concerned or stop my chemo treatments.

While sitting in the chemo chair we met a very cool gentleman, age 40, who was diagnosed with a terminal cancer. He has tumors all throughout his body and is on a very strong chemo regiment, so strong he can’t exchange any saliva with anyone for 48 hours after treatments. Even though he knows he may only have a maximum of 3 years left of his life, he had the biggest smile on his face and was very positive about his life. He talked about all of his friends and his brother and how much each of them meant to him. He even told jokes and told us all about his love of being a bus driver for UTA. He is such a kind sole, I hope that we will get to sit next to him again. Also while I was sitting in the chemo chair I got to witness another gentleman ring the victory bell (a bell that you get to ring after your last treatment to celebrate). I was very cool to see, everyone began clapping and cheering for him. I can’t wait for the day I get to ring the bell. 

Side effects…unlike the 1^st round of chemo, this round hit me pretty hard and quick. I began to feel tired on the first day and was very nauseated. I don’t like the Emend as much as the Aloxi, so I will be switching back to Aloxi for the 3^rd treatment. Even though I never throw up, I felt very sick and had to take the strong anti-nausea medication, Larazapam. It knocked me out cold for 12 hours straight. I didn’t even hear Carter in the middle of the night. Luckily Justin was there and took care of the kids. Not only did I feel like I needed to throw up, I could not get my butt out of bed for the first 4-5 days. Even though I would sleep through the night, my body felt like I hadn’t slept in days. All I did was move from the bed to the couch. I hate being so lazy, it is definitely not my personality to lay around all day. In addition, my taste buds changed quickly, nothing tasted good or even sounded good to eat. I began to get a few mouth sores and my fingertips began to get tingly. Also, my least favorite side effect of all is my digestive system got all jacked up again. The reason this side effect sucks so bad is because it lasts the entire time - all 21 days. It does not get a break, ever! 

The doctor told me that as the treatments continue the side effects will get worse and that I will feel more and more tired. I hate hearing that because who wants to be in bed all day, especially when you have two little kids and the weather is so nice that you just want to be outside all day. I want to hear something like, it will only last for 2 days and then you will feel yourself again but since that isn’t realistic, I keep reminding myself - I am putting my body through temporary hell for 4-5 months so I can ensure I have a lifetime of memories. It hasn’t been easy but I know it is all worth it.

I want to say I am looking forward to round 3 because I will be that much closer to being done but honestly, I am really not looking forward to it. The truth is it sucks but I know I will have my good days again soon.