Haircut!

Right on schedule, my beloved hair started to fall out this week.  I could run my fingers through it dry and come out with a good amount but where I really started to see it come out was in the shower.  For a few days I had been getting fistfuls of hair in the shower and decided that I was ready to see it go.  It is kind of traumatic to see it slowly come out by the handful.  From my perspective it was better to cut it off on my terms and be prepared than to have to rush to get it cut at the last minute.  So, cut it we did.

Some of my favorite women rallied together and really made it a fun experience. These friends are special because we met as teenagers working at summer camp together (almost 15 years ago!).  Anyone who is a summer camp person knows the unique friendships that are born from hot summer days spent outdoors.  There is no friend in the world quite like a camp friend.  They made t-shirts and filled a basket with snacks and lotion and magazines and other things that I can use throughout my treatments. They also made necklaces with the date exactly one year from now engraved on them that came with the promise that we will get together on that date and celebrate when this is all over. That is friendship.

Special thanks also goes out to Emily Cook at Salon – Image, Body, Spirit in Oakley. She was so generous with her time and was really sensitive to the situation. Thanks Emily!

Bradley has also been a trooper. This has to be a difficult experience for him too but he has been so supportive with it working hard to make me feel like the whole hair thing is no big deal.  I am blessed by his constant love and encouragement.

I have been reading a book with Austin called "Nowhere Hair" that talks about mommy losing her hair because of cancer. I was hoping it would ease the change for him.  He enjoys pointing out his favorite hats in the book and saying "I like that one."  This morning when he woke up I was wearing a head scarf and he kept asking me to take it off but he wasn't phased one bit by the short hair.  

Now that it is done and over with I am trying not to be too sentimental even though it is tough to see it go. However, I keep it in perspective by reminding myself that this is my trade-in for getting to live!  Without the miracle drugs that make me lose my hair I wouldn’t have the privilege of being around see my little loves grow up. With that in mind… bring it on!

2nd Infusion - July 14, 2014

     I received my second chemo infusion yesterday... one full round finished! My port was installed last Thursday (see the picture below) so set-up was much smoother and less painful. Bradley started out with me this morning then tag teamed with Emily (Amerine) Kelly who brought lunch from LaRosa’s.  I took a nice nap after lunch, had a good conversation with Liesl Grause (an old friend and Hodgkin’s survivor) on the phone and before I knew it I was ready to go home.  

 

Some of my blood counts were low so I am going to have to start taking a white blood cell booster (Neulasta) on the day after every treatment. It causes achiness in the bones for many so this is an unfortunate addition to the treatment regimen but not out of the ordinary. Add another set of side effects to the pile!

The meals have continued to roll in which has been a HUGE blessing from our community of friends. It saves precious time so that we can devote attention to the little ones instead of having to plan, shop for, and prepare meals every night. For those who have already brought a meal and to those who are set to bring one in the future, I truly cannot thank you enough. It may not seem like much but it is literally gifting us time to love our babies and there is nothing more valuable than that. 

Speaking of babies. It has been a rough week so far with the sleep situation. Mae has been waking at least twice a night and last night she was up almost the entire night. Bradley, being the good daddy and husband he is, hung right in there with her and even walked away with some of his patience left.  Austin hasn't given us much of a break either. He woke up Monday morning at 5 AM (thanks Gramps for getting up with him!) wanting to talk about Johnny Cueto. I think it was a little leftover excitement from going to the Reds game on Sunday! We could all use a little shut eye around here.   

“Give thanks to the Lord, because he is good; His love endures forever… Let the one who is wise heed these things and ponder the loving deeds of the Lord.” Psalm 107:1 and 43.

The "…" in the verse above is a collection of stories of God’s faithfulness. It is a reminder to us to always live our lives in a posture of gratitude making every effort to incorporate giving thanks into our day to day. With this in mind we wanted to include some things we are thankful for in these posts both to declare our gratitude in writing and to share that gratitude with our extended community.

My Parents.  They have graciously opened up their home and rearranged their entire lives both literally and figuratively to support us during this time.  We couldn’t do it without them.

Chemo Drugs.  Though the drugs make me sick, without them we would be facing something much more grim. How lucky we are to live at a point in history where a cure for the Hodgkin’s in my body is not only possible but highly probably.

Daycare. It is such a burden off our backs to be able to send our kids to a place where we know they are loved and cared for each day.

Our prayer requests for this week are for:

• Healthy little ones that don’t bring home germs from daycare (yeah right!)
• Sleep for everyone!
• Energy to be Mommy and a good patient and work
• Minimal side effects from the Neulasta
• God to reveal himself to us in new ways this week

First Infusion - June 30, 2014

June 30, 2014

My first day of treatment went by fast.  Not bad for having to sit around for 5 hours.







Like I wrote in my prior post, the whole experience was a lot like it is portrayed in the movies. The treatment room is a bright and sunny and is lined with recliners. When we first got there I was one of only two people in the center.  By the end of the afternoon every one of the 15 or so seats were occupied. People chatted quietly with their visitors, slept or read. It makes you wonder what their stories are. 

Dr. Brennan wanted to start my treatment right away so I didn't have time to get a port (portacath) installed.  For those unfamiliar, a port is a device that is surgically placed under the skin on your chest through which chemo can be infused and blood drawn. It is much easier and less painful to have a port so that they don't have to place an IV every time. Since I didn't have a port they had to run an IV through which the drugs were delivered. I received "pre-meds" (steroids, anti-nausea meds and benadryl) before the infusion started. Then the actual chemo drugs.  The typical regimen for Hodgkin's is a four drug combination of Adriamycin (the Red Devil), Bleomycin, Vinblastine, Dacarbazine. The list of side effects for each is a mile long and flat out ugly.

Bradley stayed with me for the morning.  He is a faithful watchman.  Once I was settled in he let me rest. I cuddled up with my soft blanket, messed around on my computer and listened to music on my headphones.  I could only feel one of the medicines burn as it was going in (it left a trace of my blood vessel up my arm!). It was surprisingly comfortable considering my veins were literally being filled with poison. Mom brought me lunch and by that time I was really sleepy so I spent the rest of the day dozing.  They claim that you can drive yourself home from chemo if you want to but I just don't know how that is possible.  My head was so cloudy I probably would have failed a field sobriety test. 

Since that first treatment, the most significant side effect I have experienced has been fatigue.  I have also experienced loss of appetite in the couple of days following treatment, gotten mouth sores, had tingly fingers, and a weakened immune system which resulted in a nasty chest cold on the 4th.  My hair is still here but not for long.

With all of the messages of love and support I have gotten from family and friends my first day chemo wasn't so bad.  It is not going to be an easy 6 months but I know I can do this.

How did we get here?

Hodgkin's Lymphoma, Stage 2A. How did I get here? 

It had been about 7 months since Mae was born and I was ready to lose that baby weight I was still holding onto. Jillian Michael's to the rescue! I started doing her videos a few times a week and after a few weeks I started having some pain in my neck.  One evening after my workout I was explaining the pain to Bradley, thinking it was related to the new workout routine, and reached up to touch my neck. There was a lump there! Hmmm, what could that be? We did a bit of Googling and decided it would be best to make an appointment with the doctor ASAP.   

The next morning I visited the nurse practitioner at my doctor's office.  After consultation with the doctor she decided to order an ultrasound of the area.  The ultrasound results then led to a CT scan.  I had the CT scan done on the literal eve of my 30th birthday.  I remember laying on the table thinking, "What a way to ring in a new decade of life!" The next day I anxiously awaited a call from the nurse with the result from the scan.  When I talked to her she assured me that the scan showed a collection of swollen nodes but that they weren't overly concerned and thought I should wait it out a month or so to see if it would go away on it's own. Relief! It can't be a big deal if I am advised to wait around for a month, right?

So I waited... three days. I talked to an ER doctor friend of ours about the situation and he suggested not waiting, I should get it biopsied right away. Though he is typically one to under-react to these types of things after spending so many years in the ER, his sense of urgency wasn't enough warning for me so I still didn't do anything about it.  I then ran into the same friend a few days later and he more strongly suggested the biopsy. OK, OK, I will do it.

I made an appointment with a general surgeon for a biopsy consult on Tuesday, June 17th. I didn't think the consult would be a big deal, turned down offers for people to accompany me and went by myself.  However, it did turn out to be a big deal.  The surgeon was fantastic (Dr. Kevin Grannan at Group Health if you're ever looking for someone).  He was kind but honest. He told me after reviewing my chart that we should consider it to be lymphoma unless the biopsy could prove otherwise. Whoah. I had been Googling "swollen lymph nodes in the neck" for a few weeks now and knew this was where it could be headed but isn't Googling medical conditions really just an exercise in worst case scenario anxiety? Nobody ever actually has what those medical blogs suggest, right?  We wouldn't be sure for two more days.  In the meantime we did some crying and some worrying. Two of the things I resist the most in this life, for those that know me well. 

Thursday rolled around, Bradley took me to Good Sam early in the morning for the biopsy.  We thought we wouldn't get a result until after the weekend but Dr. Grannan graciously walked the removed node down to the lab himself and personally waited for it to be tested. Within 30 minutes of coming out of surgery he was able to confirm... lymphoma... Hodgkin's. It wasn't one of those big shocking moments with lots of tears. It was just a matter-of-fact statement by the surgeon taken in by us as a matter-of-fact.  Thanks to Dr. Grannan for being honest about what suspicions his experience had taught him so that we could digest the probability for two days before the actual diagnosis. But, now here we were. It is cancer, it has a name.

By Monday we were meeting with Dr. Brennan, my oncologist. It is still weird to say, "My oncologist." The typical course of treatment for Hodgkin's is 4 months of chemo with treatments every other week. Then, a PET scan. If the PET scan shows no cancer, then 2 more months of chemo and done.  If the PET scan shows the cancer is still around it will likely mean some radiation.

The remainder of the week I went through a series of tests to confirm the diagnosis and get some baseline measurements of lung and heart functions to be used as a reference further down the line in my treatment. As a result of all of the testing, Dr. Brennan confirmed Hodgkin’s stage 2A. 2 because it is found in two or more lymph node groups (in my case the left neck and left underarm).  A because I am not presenting with any symptoms.

I received my first infusion on June 30th, exactly one month after my 30th birthday.  That experience is also deserving of its own post so I will save that for a different day.  My hopes with this blog are to: (1) keep family and friends up to date on my physical and mental progress, (2) provide myself an outlet for processing my thoughts on this new journey, and (3) provide a history for my kids so that I have something to give them when they ask me what it was like 15 years from now.
 

Lots of love.