My Story: Part 2

After I finished treatments, I focused on cleaning up my diet and exercising more. I wanted to do everything in my power to stay in remission. My oncologist was so pleased with my results, that he was encouraging me to move on and start a family. Something inside of me knew that it wasn't the right timing. My body needed to heal, and every other report said to wait 2 years.

I had a scan in early May 2012. After drinking 64 ounces of oral contrast and being injected with iodine (which makes you feel like you're peeing your pants..) it was all clear! I was so confident that my battle was over, that I was ready to sell my wig and all of it's very expensive accessories. I even got the go ahead to get my wisdom teeth cut out. Dental work is typically forbidden during and shortly after chemo because of the risk for infection. So I spent my 27th birthday with major chipmunk cheeks and a hematoma from the lidocaine injections, awkwardly stuffing pad thai into my mouth. I even had HAIR!

 

I thrust myself back into my old life as much as possible; rejoining social activities and covering a maternity leave at work. I didn't have a single doctor appointment that June.

I was feeling fatigued, but pushed forward not wanting to miss any opportunity that got me out of the house. I also had a few low grade fevers, so when I went to get my port flushed in July, I requested a blood draw for lab work. My oncologist and nurses joked around calling me "Doctor Sarah", but they obliged and my blood work was just fine.

 

August was another doctor free month. I was still having intermittent low grade fevers, so by the first weekend in September, my husband made a worried phone call to my oncologist. My nurse called me back, asking questions and trying to determine what might be the cause. She asked if I had any swelling, thinking that there might be a clot in my port line. I stood in front of a mirror, phone in one hand, and tilted my head back. As I did, a small lymph node became visible on the left side of my neck. My right hand clutched at my throat, trying to palpate every structure. The lump was hard, just like before, only in a new spot.

 

The nurse made a call to my oncologist, who was vacationing for the holiday. She called me back to let me know that there was "no way" it could be cancer, my main tumor had been in-between my lungs! So I started antibiotics, only told my mom and husband, and went away for the weekend.

 

 

You can read part 1 HERE.



 



 

My Story: Part 1

I have been working on retelling my story to help raise money for the Leukemia and Lymphoma Society.  I will be participating in the Light the Night Walk on September 27th, and will include the link if you are interested in making a donation.  The research that has been funded by LLS has saved my life.  Donate Here.

 

 

Here is Part 1:

As most of you know, I have been battling Hodgkin's Lymphoma for over 2 years now. I was first diagnosed July 27, 2011 after suffering through the many "B symptoms" for almost a year. After several rounds of antibiotics, the fever and cough remained, joined by chest pain, night sweats, severe itching, and finally the noticeable growth of the lymph nodes in my neck. By the time my diagnosis was confirmed, I was on a strictly liquid diet and had difficulty breathing due to the bulky and fast-growing nature of my tumors. I started chemotherapy that August, after what I call "Hell Week". Each day was spent being poked and prodded, surgery to place my port, and bone marrow removed from my hip.

 

I was admitted to the hospital for my first round of chemotherapy drugs because they were afraid my kidneys would shut down due to the extremely large mass in my chest. I went through 12 of these treatments over a period of 6 months, my symptoms getting worse each time with less and less cancer cells to absorb the toxins. Which was great! My body was responding well to treatment and my PET scans were clear. I still had a 5cm mass in my chest of "residual" tissue. Mostly scarring from the lymph node being overstretched for so long. That lead to a 2 hour long consultation with a radiation oncologist to discuss further treatment to prevent cancer from returning. Unfortunately, radiation can cause secondary cancers and damage to the surrounding tissue. After weighing the risks, we decided to only radiate the residual mass in my chest.

 

I went every day for 15 treatments. Radiation was much easier for me than chemotherapy. It would zap my energy for the day, and left me with a slight burn in the treated area, but there was no nausea, or body aches, hair loss or weak immune system.

It was March of 2012 by the time I was finally done with treatments. I had to get my port flushed every 6 weeks to prevent blood clots from forming, but other than that I tried to jump back into a "normal" life as much as possible. And for anyone who has had cancer, you know that is easier said than done.

 

 

 

Quick Update!

 

I just wanted to drop a quick line to let my sweet followers know that I am still alive and hanging in there!  I will post a more thorough update soon on everything (ok, I'll leave some stuff out) that has happened since I last posted. 

 

I've finished cancer treatments and have been working on getting my home back in order.  I'll leave you with a hair update:

 

 

 

 

 

 

Never give up. Never surrender.

It's been a while since I've posted.  I guess I was waiting for the right time or until I found the right words.  They haven't come to me, so I am just going to babble on.

I found out recently that I am no longer in remission.  Last week I went in for another bone marrow biopsy and a needle biopsy to my neck to confirm my worst fear.  Starting in November I will receive a more toxic chemotherapy to put me into remission once again before undergoing a stem cell transplant.  

When I initially found out I was angry.  Maybe it was the emotional roller coaster my oncologist was taking me on over a period of 2 weeks, "there's no way it can be cancer.  there's a 50% chance it's cancer.  there's no way it's not cancer."  Maybe it was because he said I could be cured, "again".  Either way, out of my anger I found the motivation to look death in the face--again, and started preparing myself for battle.  

That's really all I know for now, I will update when I can.  You can find my original post from when I was diagnosed last year here.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.  ~Eleanor Roosevelt

When something bad happens you have three choices.  You can either let it define you, let it destroy you, or you can let it strengthen you. ~Unknown

You never know how strong you are until being strong is the only choice you have. ~Unknown

But sometimes it is necessary to do that which is too much. 

- Pope John Paul II

If you're going through hell, keep going. 

- Winston Churchill

It's a Small World After All

This has been my view for the last 6 months:

Pretty boring, huh?  I still get out once a week for Fun Day and have only had to cancel a couple times.  Besides that and going to my parents every couple weeks, I don't get out 

much.

I go grocery shopping about once a month, sometimes I stretch it out more.  I stay pretty 

isolated to protect myself, especially after my bout with pneumonia in November.  

The TV is on almost all day because after a while the silence is deafening.  When there's 

nothing recorded, I rely on Wendy Williams to entertain me.  And sometimes I'll even sit 

through the back to back judge shows that plague daytime TV.

This is where I fold my laundry, take naps, read, edit photos and surf the web.

My last chemotherapy treatment for my ABVD regimen is Wednesday.  Hopefully, the last 
one I'll ever need.  Right now, I don't know what my future holds, but I hope it includes lots of energy and a strong immune system.  

Side Effects of Chemo & Updates

I am almost to the half way mark!  Next Wednesday will be my 6th chemotherapy treatment.  I had another PET scan to see my progress with ABVD & received good news!  The scan showed that all activity has resolved, with residual soft tissue in my chest where the 10cm tumor was.  I still have to finish all 12 ABVD treatments (whine) and radiation is still a possibility.  Still just trying to take things one day at a time.


My last treatment took more of a toll on me than the others.  I guess because the cancer is almost gone, so there are only "good" cells left to work on for the most part.  I found that my fatigue started taking over my Saturday as well.  Before I just had to worry about getting through Wednesday, Thursday & Friday of chemo week.  


We did the Light the Night Walk with a great "Team Sarah" turnout.  Thanks SAMC coworkers for coordinating the team & shirts!  <3  We raised a few thousand dollars, I don't remember the exact number (chemo brain--see below).

My sister, mom & I

Team Sarah

I also did Zumba to raise money for the Leukemia & Lymphoma Society.  2 HOURS of it!  Sorry, no action shots :)

My friend Audrey & I.  We've been friends for 20 years!  She shaved her head to raise money for LLS.

Now on to the dreaded chemo side effects.  Some of them have gradually gotten worse and I fear they will continue to do so as treatments go on.  Come on January!

1. Chemo Brain--It's real.  Tonight I left a burner (on low) and didn't notice until I was putting the leftovers away.  I also forgot to make garlic bread to go with our pasta, which I had planned for two days.  If you know me, you know that I am a task master, planner, micro manager, mother hen, the person that holds it all together.  Now I feel like a feeble old lady who can't remember what she's said 5 minutes ago half the time.  I've been noticing that my hubby has been remembering more than me at times.  I sincerely don't remember when our new trash day is, apparently it's Thursday because he already put it to the curb.  And if you know my sweet husband, you know this is a big deal.  Lately, I have to re-read a string of text messages to remember what our conversation was about if more than a few minutes have passed.  For those reading, please don't be offended or get your feelings hurt if you've sent an unanswered e-mail or phone call.  I simply forget.

2. Fatigue--This one is a time stealer.  On chemo Wednesdays, I normally come home and sleep right into Thursday afternoon.  Which is followed by a nap that might last until Friday.  I love to sleep, don't get me wrong.  It's not a normal tired.  It's an emergent need to lay down and pass out, not something you can push through with a 5-Hour Energy drink.

3. And then there is the Insomnia--which is why I'm up writing this blog :)  Once the poison starts to work it's way out of my system, the steroids take over and sleep is an effort to obtain.  PITA.

4. Nausea--LUCKILY, I have not thrown up.  Nausea hasn't been too terrible, thanks to my meds.  But the general queasiness, especially on chemo day, is enough for me.  I usually eat breakfast, try to stomach a small bland snack during infusion, and that's it for the day.  I can't even look at the lunches they bring around without my stomach churning.  It's just a sandwich!  I have weird associations,  I guess.  

5. Heartburn/Indigestion--Chemotherapy is known to break down the lining of the stomach.  This can cause a burning sensation up to my throat, or stomach pains.  Prilosec had been doing the trick, but this round has been a little rougher.  

6. Mouth Pain--I  have not had mouth sores, thankfully.  But related to #5, chemo can also strip the mouth of the mucous membranes.  I relate the sensation to a constant state of that burning you get after eating too many Mike & Ike Hot Tamales.  Not horrendous, but annoying.  It was really bad after chemo #1, and it hurt to swallow water.  I've found that ice helps.

7. Hair Loss--It sucks.  I miss my hair.  I have a little more than peach fuzz on my head.  My eyebrows & eyelashes have hung on, though I can tell they are thinning.  However, I still have the pleasure of shaving my legs.  As Gma Jean would say, "Ain't that a bitch."

8. Food Restrictions--Things I miss: sushi, a medium rare steak, and salad.  The risk of bacteria is too dangerous for my pathetic immune system.  I basically have 2 days each cycle that I can sneak one of these treats when my WBC count is up.

9. Bone Pain--I get a Neulasta shot to help boost my white blood cells to prevent infection.  This causes the bone marrow to expand, thus causing bone pain.  It hasn't been too bad lately, thanks to a tip from another HL victim.  I've been taking Claritin, and for whatever reason I have very little pain now.  Before, I wouldn't be able to sleep through the night because of the pain.

10. Skin Changes--My skin is drier.  It calluses more easily.  And now I'm striped.  The Bleomycin can cause discoloration, so anywhere I've scratched (mostly during chemo #1 when I was still experiencing the itching symptom) is darker than the rest of me.  

That's about it.  So when you ask how I'm doing and I tell you that "I'm fine", this is what I really mean.  <3

Fancy Fights Back

 
Lymphoma Graphics & Tumblr Layouts

I was diagnosed today with Hodgkin's Lymphoma.  I will be sharing my story here along the way and hope to increase awareness in the process.  I work in health care and had no idea that the symptoms I have been experiencing pointed to cancer. 

*Itchy skin
*Night sweats
*Fevers
*Fatigue
*Weight loss

I thought everything was related to my chronic sinus problems/allergies, and didn't take action until the lymph nodes on my neck were noticeably "swollen".  The CT scan showed a mass in my chest, which explained my shortness of breath...I thought I was just out of shape!  Apparently this diagnosis is common among the 15-40 crowd.  While there is nothing you can do to prevent Hodgkin's Lymphoma, early detection is always a good thing.  

I'll update when I know more.  Thank you for all of the prayers!