Friday, August 20, 2010

"All the world's a stage" wonder what mine is?

The diagnosis of Non Hodgkin's Lymphoma is only the beginning.  In order to determine the exact treatment needed, you have to be tested to determine the Lymphoma Stage.

Non-Hodgkin Lymphoma Stages
Stage I: Involvement of one lymph node group
Stage IE: Involvement of one area or organ other than the lymph nodes ("E" stands for "extranodal," meaning that NHL is found in an area or organ other than the lymph nodes or has spread to tissues beyond, but near, the major lymphatic areas) - We knew for sure that I was at least a IE because of the pathology of the Breast Mass but more likely a IIE since there was also a mass on my thyroid.
Stage II: Involvement of two or more lymph node groups on the same side of the diaphragm (a thin muscle below the lungs)
Stage IIE: Involvement of an area or organ other than the lymph nodes and of lymph nodes near that area or organ, and possibly including other lymph node groups on the same side of the diaphragm
Stage III: Involvement of lymph node groups on both sides of the diaphragm
Stage IIIE: Involvement of lymph node groups on both sides of the diaphragm and in an area or organ other than the lymph nodes
Stage IV: Involvement of one or more organs other than the lymph nodes and possibly of the lymph nodes.

Patients are also divided into either "A" or "B" categories.
"A" patients don't have fever, excessive sweating and weight loss.
"B" patients have fever, a lot of sweating and weight loss.  I had none of these symptoms so I was an "A"

The tests I would be having to determine stage would be a PET Scan and a Bone Marrow Biopsy.  Before testing could even begin, I decided to go ahead and get my preChemo haircut.  Gary initially suggested it and then I found the same suggestion in the Chemo literature.   My friend Lesley provided me with several hairstyle magazines and thankfully Amedae was able to get me in right away.  I was thrilled with the result and it really lifted my spirits.

August 17, 2010 - PET Scan - The only bad part of this test was the timing.  I was scheduled for 6:30 pm and it requires a 4-6 hour fast.  It is one thing to deal with no food from midnight till your morning procedure but I was very hungry by the time I was brought back to the semi.  I loved the fact that I was having a test that was so radioactive they don't even allow you in the building.  They send you out back into a semi trailer.  What a PET Scan does is sends sugar with a radioactive marker into your body.  Cancer cells love sugar and so they have a real party with it trying to eat as much as they can.  After you are injected with the radioactive solution, you sit for about a half hour in the semi and then I guess you are safe enough to enter to the building because then you sit inside for another half and hour.   By this point the cancer cells have gorged themselves and you head back to the semi for a series of scans.  This machine is nice and quiet.  Not nearly as bad as a MRI machine.  It took about 20 minutes for them to get all my scans.  I guess it depends on your size.  All and all not a bad experience.  Plus, I could stop at Arby's on my way home.

August 18, 2010 - More fasting.  No food or drinks after midnight.  I should probably mention here that I am a breakfast eater.  I know there are people that don't but I am always hungry when I wake up.  Not to mention the lack of my morning coffee,  I was pretty cranky when my friend Jean picked me up at 6:15am to head to the hospital for my Medi Port insertion.  Zach was having his first Varisity tennis outing and we really wanted him to have a parent there.  

Before surgery

A Medi Port is an internally installed accessible device that is typically used for patients that need long term IV access. It is surgically placed, usually by creating a false pocket somewhere in the upper chest wall under the skin on top of the ribs. An internal tube is then attached to a nipple on the device, with the other end of the tube then sewn into a nearby large vein (usually one of the subclavians).   The best part of it is no more IV starts for me!

After Port insertion
I am smiling after the port insertion because they finally brought me food.  I had a couple yummy muffins and a cranberry juice.  We were at the hospital from 7 am till about 11 am.  The procedure itself took about an hour and half.  It wasn't really painful more strange than anything.  It felt like maybe a little thread making its way around your veins.  Just strange.  When I got home and the sedation wore off it, was painful but more like a dull ache.  Jean dropped me off and I slept for a few hours and then woke up with a spliting headache.  Oh yes, no coffee today it all made sense so I made myself a giant iced latte and took Duffy for a walk.  By the time we got back, I felt much better.  Well enough to attend the kids fall sports parenting meeting.  Life as normal feels so good right now.  One of the other tennis parents had just finished her chemo and it was nice to talk to a chemo sister.  But probably the best part of the evening was all the compliments for my new haircut.  I'm going to enjoy this hairdo as long as I can!

August 19, 2010 - Bone Marrow Biopsy day and another morning of fasting. Cranky may not be a strong enough word.  Gary is my cancer buddy today and it is such a blessing that Shelby now has her license because she is being a really big help by getting Zach to tennis practice bright and early.  We are at the hospital at 7 am.   Today's procedure is not in the outpatient center but upstairs in the general cancer procedure area.  Lots of great nurses today.  I really felt cared for and one of the nurses even ran to get me information on a house cleaning service for women undergoing chemo: talk about above and beyond the call of duty.  The nurses were able to access my mediport so not pokes for me.  The twilight sedation today seemed much stronger than yesterday.  I am guessing that is a good thing.  Gary and I were home by 10:15am but I could barely walk myself up to bed.  My bone marrow biopsy was bilateral which means I really can't get comfortable on either side.  I understand that moving helps and have been trying to fit in little periods of walking. 

By evening, I still felt lousy which unfortunately meant I'd be missing Shelby's first volleyball scrimmage of the year.  I guess it was a good thing I decided to stay home because by 7pm I had a fever and chills.  A call to the doctor's service and now I had to head to the cancer center bright and early the next morning for some blood cultures.  There goes my chance for a doctor and test free day this week.  Bah Humbug! 

August 23, 2010 - My next appointment with Dr. Black.  All the staging test results should be in and we will be able to get the plan for treatment. 


  1. Thank you for all the info, I love that you are educating us as you go along. You've had a heck of a week and still you are upbeat, you are my hero! Praying for good results on all the tests and bloodwork as well as a doctor/hospital free weekend.♥♥♥

  2. I just read all the posts from your blog and just reading your words and feeling your attitude about all this assures me that this time in your life will end with a postiive outcome! I'm sure this journaling will you help you cope with all you are going through. I can't believe all of this has happened so fast but I am glad you are getting immediate treatment and attention. As always, thinking and praying for you, Gary and the kids!!!

  3. Love you and thank you for posting all the information. This blog is awesome. It helps you with all of us not having to call you all the time asking how everything is going. I have you on 2 prayer chains one here and one of my former classmates is a pastor in Florida and you are on his church's prayer chain!!
    So now we are going to claim it in JESUS name you will be healed and with a quick recovery. We also pray for your family. Praying for JESUS to wrap his loving arms around you and give you comfort and peace. AMEN
    You are never alone! Love & God's Blessings <3 Laura Burmeister

  4. Love you!~ I'll keep up with your blog while I'm traveling....text me too if you have news.

  5. Sis,

    For once in your life be an underacheaver...

    Please? I have a great deal of faith you will overcome this. I just pray it is as easy as possilbe for you. Your big brother really does love you.

    With you every second of every day in thought and prayer. Darron