My journey - battling lymphoma

Recently I celebrated my 46th birthday. I love celebrating birthdays! Then I participated as a co-captain for our local "Quabog" Relay For Life and the Pack 57 Rocks! Cub Scout Team. This was the time frame that I had discovered an uneasiness in my stomach and growth in my spleen and stomach. After weeks of monitoring, my husband Steve took me to the doctor who felt the lumps and ordered a CT scan. The CT scan showed a massive area, my spleen enlarged to twice its size and an additional growth lower in my stomach. Next was the localized CT guided biopsy and subsequent PET scan. The biopsy showed positive for lymphoma and most likely Diffuse Large B-cell Lymphoma.

This is my online journal sharing my experience through battling this cancer that has abruptly entered my life for no apparent reason. The story is documented here if you want to start from the beginning, you can check the archives on the side bar.

As a top competitive master athlete this year winning my age group at the Marine Corps Marathon and placing 3rd in the New England Trail Running Championship I have been truly excited with my results of late and am a truly driven athlete. Driven by goals.... my goal right now.... to beat this "thing"!

Wednesday, September 29, 2010

RCHOP #4 - Making some "head" way!

Officially we are more than half way there and making "head" way!  Funny reference to the head.  I thought I would get used to the look, and well I guess I have in my own way been proud of how strong I have been, but it is wearing on me....

  I keep the end goal in mind, and think early November the treatments will be all completed! Yay!  It is hard to share what this is really like, but I am doing my best to update this blog and keep writing about my experiences.  When I don't feel well I really don't feel like talking about it.  So much more fun to share happy and strong thoughts, than when I am down, weak, tired and feeling ALL the symptoms of what chemotherapy can bring.  Denial is sometimes what keeps me strong, denial that my body will get weak and that the symptoms that are truly bugging me are going to slow me down.  OK -- I admit it, I have cancer and the chemotherapy is getting to me!  I am so SICK of being sick!  I don't like the way I look, my bald head, lack of beautiful hair, sunken eyes, pale face and lack of energy that I know I have deep inside.

This is a late post for RCHOP #4 - as it was last week.  Of course having the actual treatment of the "poison" going in your body is one thing, but the reaction to it is another.  The accumulative build up of the so far 2 1/2 months is starting to take affect!  

Symptoms that are BUGGING me are: 
1. Moodiness -- I think I am going to beat someone up.  Best I stay home and not let people bother me.  I had a few instances last week where I have no patience with people.  I have a very short fuse and expect people to be nice to me.  If they irritate me I let them know!  My friend Jessica says it is the prednisone.  Fun times!

2. Tingling of my fingers and toes when I run -- I realize now that the blisters on my feet was actually the fact that I can't feel my feet.  The tingling of my fingers when I type is very odd... it is tough to run in the trails as I feel I am going to trip and break an ankle at any step.  

3. Nausea & Heartburn - taking pills for this, but really doesn't help much.  It could be a lot worse I realize, but my appetite has lessened and I really am eating for fuel right now.  When I eat and the heartburn acts up it is nasty - just hurts, and eating is truly no fun. :(

4. Mouth sores -- OK - I thought I would escape this one after going through methatrexate and not having anything, but it is evident with the last cold sore on my lips and the inside of my mouth just burning from whatever food I put inside that they have arrived.  I take lysine like I did before and that seems to help, but the burning in my mouth is not going away so fast this time.  :(  I feel ugly enough as it is without having sores on my mouth.... hopefully it stays internal. :(

5. Exhaustion -- is that a symptom?  I nap daily.  I get so exhausted late at night I take it out on the people around me (see moodiness above).  It is truly tiring to be treated over and over.   I get blurry, fuzzy, dizzy --- lack of focus at work and really need to take a break.  Which I am planning and have been doing more and more.  I really need my rest.  So I don't become a BEAR! :)

OK - enough complaining...... thanks for listening.....


But with all that said -we received week SUCH GREAT NEWS from Doc Mullally with the results from the PET scan!  The PET scan showed tremendous results and minimal cancer remains in my body.  It works - it's gone!  My body is reacting well to the treatment and we are killing the cancer.  

Highlights from the Cooley Dickinson report:  "No metabolic activity is seen within supraclavicular nodes as was noted previously.  No activity is seen within a previously markedly metabolic pericardial node with node previously measured 9x16 cmm and now measures 10x7mm.   The spleen previously measured at 16cm in AP dimension is  now 12.5!  No metabolic activity suggestive of bone involvement.  Overall TREMENDOUS response to therapy has occurred with marked reduction of tumor volume & metabolic activity.  Mild residual metabolic activity remains.  SUV in the spleen has gone from 17 to 3.6.   


Back to RCHOP #4 -- after meeting with the doctor and setting up shop in our usual place with my MAC, my work computer (which I am sorry - I didn't get to work) - my iTouch and iPad with Steve's headphones to listen to Pandora -- got my snacks and set up camp.  It has to be a funny sight if there are people in the waiting room to see us pile in to office with our bags ready for the day! :)  I downloaded a bunch of new music while they took some blood tests as my Blood Oxygen levels are getting lower (we hope to monitor them for Chicago - so I don't lose too much energy and may need some additional medication to combat).  Then listening to music and some new books on the IPad kept me busy throughout to the point where I did not even get a nap.  Which is a bummer, because the "Benedryl Nap" is amazing!  :)

New nurse in the office (training) -- didn't memorize her name, but she is all smiles and a joy to have in the back.  Her fun attitude and light heartedness made my day. 

Treatment ended around 4 pm on Monday so we were due back for the shot 24 hours later.  My mood was not good and I ended up in tears on the second day - accumulative affect of all of the drugs and time of treatment on my body.  I have no patience for "mean" people and just lost it.   It was good to talk to Dr Lindsay about it and I have since recovered.  :)

Inspirational Shirt of the Day:  2008 Boston Marathon
Charlie says that they are limiting the field to 25K runners so I best figure out if I am going to be in town to run this next year with the Dream Team!  :)  2009 was a good year for me, but before DetermiNation and before cancer!  My how things have changed in such a short time frame!

Halo Protex Skull Cap --- LOVE this cap --- need to get another black one!  :)   Wish it came in pink and dark purple...  for obvious reasons! :)

Below are some great photos of Dr. Lindsay's cute dog that wanders the office.  Her little feet are so quiet and soft and she really has a look of "love".

I love the photo with the patient's bag that says "Keep Calm" -- something I need to do right now, and always.  :)

Thanks for stopping by ---- please leave a comment --- I love to hear from everyone! 
Thank you to the BU for the flowers & Itunes certificate! 

Thank you to everyone for your cards and notes!  It truly means a lot to me!


Jessica said...

Soooo happy to hear that the chemo is doing its job!!!

For the mouth sores - liquid benedryl + keopectate = magic mouthwash. Last year when Lyme killed my immune system and I had mouth issues, the stuff was a life saver. You swish with it for a minute and it numbs most of the inside of your mouth and gums. And the mono this past spring, the prednisone made me an emotional wreck, and I remember when my cousin was going through treatment for Leukemia, she was a terror during the prednisone.


Jane said...

Thank God for the good report! You are going through so much, really sucks. Hang in there!!! Love, Jane