Unbelievable

Well just when I thought it was safe to go back in the water . . . the cancer shark was taking a BIG bite out of my household's ass--Julie found a lump in her breast and the biopsy done last Thursday was positive for cancer.  I find it incomprehensible that we could both be feeling so well and dealing with cancer.  

The weekend passed without the test results, although I think we were both fairly certain that the news was not going to be good given what the radiologist said after the first mammogram. My emotions are all over the place.  I've had moments of wrenching sobs, alligator tears, and then a solid resolve that we are in this together and that we will deal with whatever comes.

We will wait for further direction from doctors and do the required research to get to the best care possible.  I have this image of our house having a HUGE red star on it in the cancer surveys--what happened to Passover?????

My own journey seems to be at a good place.  I am grateful to be off the Prednisone for the rest of this round.  That drug is wicked--although I'm sure it does a good job of helping my body cope with the chemotherapy.  I had good energy during the weekend and appreciated the wonderful weather and a great walk.

Julie and I went to the "Wig Lady" and it has now been officially confirmed--I have a BIG head!  I know most of you were thinking it was just my EGO.  Anyway, the wig options are a bit limited by the size of my head and the choices of color, etc.  The wig lady ordered some for me to try next week and we will see what works.  With the news of Julie's situation, the superficiality of wigs and such stuff really seems so inconsequential--but then again, my hair hasn't started to fall our yet.  I guess I can expect that sometime in the next week or two.

So what's my message today?  Enjoy the moments and cherish each other.  Please keep us in your thoughts and prayers.

Take care,

Ellie

It's starting to sink in

With the diagnostics completed, I now know that I have Stage IIIA Non-Hodgkin's Large B-Cell Lymphoma. Of course, I’m still getting used to the news.

Sometimes I find myself just kind of “watching” as if the process is happening to someone else. For example, I’ll think about how amazing it is that scientists have developed all of these sophisticated nuclear imaging techniques to see how things are working on the inside of our bodies without having to cut us open to take a look.

Then I jump back into the personal sphere and realize that because of these scientists, I know where the cancer is in me. The PET Scan makes all the cancer cells "light-up" so that you can see the location of the disease. In my case the lymphoma is both above and below the diaphragm. The PET Scan will be a helpful test to repeat at some point later in my treatment to see how things are going.

Thursday I met with Dr. Friedberg and the first thing I noticed was that he had the permission slip for the clinical trail on the top of my file. I had a moment of panic thinking that it must mean I had Stage IV disease—somehow I had gotten confused and thought you had to be at Stage IV to qualify for the study. He asked me how I was doing and I said, "Maybe not that great given that those papers are on top of the file.” He said, “Let’s slow down and we’ll review everything.”

There was actually very good news to report. My heart test came out perfectly. I also had no cancer in my bone marrow. My LDH blood test is higher than normal—but only moderately so—which is one indicator of disease (1 point). There was evidence of the cancer both above and below my diaphragm (1 point). That means I have only two of the 5 possible points that are cause of concern in determining the prognosis of the disease. I luck out because I haven’t hit the big 60 YET! I also didn’t have any other symptoms—like night sweating or unexplained weight loss. All the pounds that have left this body were hard earned! Finally my performance status is excellent—or at least normal for me ☺.

I admit that I was really anxious about the staging. I knew it was out of my control, but I was still dreading the report. Dr. Friedberg explained that I have Stage III disease and that is considered advanced and qualifies me for the clinical trial which will be the same exact treatment of eight courses of chemotherapy—administered every three weeks, followed by another drug called Bexxar® which is a form of radioimmunotherapy. Now that I realize I had a misunderstanding about qualifying, I’m actually relieved that I’ll be able to participate because I think it will really boost my chances for a full cure.

If you want to know more about Staging you can check out this web site:

http://www.leukemia-lymphoma.org/attachments/National/br_1161891669.pdf

So after talking with Dr. Friedberg, my nurse, Lynn prepped me for the chemotherapy I was going to start. I’m getting the R-CHOP protocol. I go to the Wilmot Center for one day every three weeks and get four of the drugs infused through an IV—Rituximab, cyclophosphamide, hydroxydaunomycin, Oncovin®(vincristine). I then take five days of prednisone pills. Lynn described the possible side effects of the chemotherapy. We then had a LONG talk about POOP! Yes, one of the things that is really important is not to get constipated from the treatment. So I’ll be paying a lot more attention to that particular body function!

The actually infusion went very well. I went into a room and got to pick my chair. 
A treatment nurse, Chris, hooked up my IV—ouch!  They slowly start adding the Rituximab in the IV. Fortunately, I tolerated it very well and didn’t experience any of the possible side effects. It takes about five hours to infuse this drug the first time—they do it really slowly in case you have a reaction.

Julie was with me most of the day—such a blessing to have her constant support. We had brought a nice lunch. I was really glad we had brought our own when I saw the options on the lunch cart they rolled by.

I had some nice visitors--Jessica Spector was in to meet with her doctor and stopped by with her Mom, Paula Brown.  Dr. LaLa stopped by to entertain me too!

After the Rituximab was finished, they slowly pushed syringes of two other drugs and hung a third on the pole of the IV. At almost 7:00 p.m. I got my “get out of jail” card and got to go home.

All in all it wasn’t too bad. Getting home I had a slight headache. I ate dinner and took the required medicines. I had a pretty rough night—hard to sleep. My body felt like it was buzzing. I finally took some meds to help with nausea and anxiety and got through the night.

The rest of the weekend was pretty good. One of the medicines seems to kick my ass into high gear. At one point I was dancing a jig in the kitchen before I harnessed the Prednisone induced energy and went for a long walk up to Cobb’s Hill and around the reservoir. It was a really beautiful weekend and I'm appreciative of the beautiful weather, the coming of Spring, and all the blessings--in spite of this crappy lymphoma.

I balanced the weekend between being busy attending a bridal shower, Passover Seder, and dinner with the Pelz family and taking some good rest periods. There is a certain amount of physical discomfort, but so far it’s been manageable.

I’m trying to focus on not getting too far ahead of myself. The emotions seem to take over when I think about the next six or seven months--it just feels overwhelming. When that anxiety is raging, I focus on just breathing in and breathing out. I’m working to stay in the moment.

Chemotherapy 1st round goes well!

Hi everyone,

Just a quick message tonight to let you know that everything went really well today. I saw Dr. Friedberg and Lynn Rich at 9:00 this morning. All GOOD news. Stage III (not four which was a huge relief!) I was thrilled that I had normal test results for the bone marrow aspiration and MUGA heart test. The treatment plan is that I will have eight cycles of chemotherapy and the first one is DONE! I qualify for a clinical trail and the 8 chemo cycles will be followed by one other drug called Bexar.

I was at the Wilmot center until 7:00 p.m. with the infusion of the CHOP-R drugs. The good news is that while they shared all these scary possible side effects--I didn't experience ANY of them!!!!!

I'm pretty tired and have the slightest of aches around my forehead--not even severe enough to say it's a headache--so I'm going to rest but I just had to let you know that while I'm not sure you can say a day getting chemo is a "good" day, this was right up there.

I'm relieved to get this first treatment behind me. I will post more about it (with pictures) very soon.

Thank you for all the your kind thoughts, prayers and warm and wonderful messages. I am truly blessed by your presence in my life.

With love,

Ellie

And so it starts

I was in for my annual "peek and poke" exam when my gynecologist didn't like the way my uterus felt.  She ordered an ultrasound and wrote "Fibroids" on the paperwork.  Not too concerned because I've had them before, I didn't rush to schedule the test.  After a business trip and some other "important stuff"--I found time in my schedule and went for the exam.  While on the exam table, the technician (a really nice RIT grad) asked me if I was in any pain.  I felt fine and said no--nothing was bothering me.  Continuing the scan, she asked again--are you sure you're not in pain?  By her third inquiry, I was getting concerned.  She told me she wasn't sure what it was--but something wasn't right.  She went to get my doctor, who was conveniently in the office suite next door.  When she came in and looked at the screen, she announced she didn't know what she was seeing, but didn't like what it was.  And scheduled me for a CT scan the next day.

It's so ironic that this was happening when I'm actually feeling better than I've felt in YEARS! I'm physically strong and feel great.  I started swimming last summer, then cranked it up a notch in the fall by working out with a great trainer, Joe Delgado, twice a week with additional cardio time.  I work daily work on my OA program, appreciate the blessing of abstinence and my eating plan, and have dropped 50 lbs.

When the doctor called me Friday night with the CT scan result, she told me of my enlarged lymph nodes--suspicious of lymphoma.  She  also told me to cancel my Sunday travel plan to attend a conference in Washington DC--big bummer because I was really looking forward to it-- a Hillel meeting focused on Higher Education and creating a more civil society.   She wanted me to get a biopsy as quickly as possible.

With the diagnosis pending, I started on the information-seeking super highway and in quick couple of weeks have gotten a crash course in Lymphoma.  

Needle and knife biopsies led to a definitive diagosis--Diffuse Non-Hodgkin's Large B-Cell.  An aggressive form of the disease, which is actually a good thing.  That means that the cells divide quickly and are very responsive to treatment.  Slow growing cancer is --well, slow growing, but is also more resistant to the chemotherapy drugs.  I'm still waiting on other test results to determine the staging-that will let me know how pervasive the cancer is and where it is in my body.

The time between the first test and the biopsy results has been pretty unnerving.  Right after I got the news I was driving and my vanity mirror was flipped down.  I looked in the mirror and had a heart-to-heart with my God.  Probably because of my work over the last year and a half in Overeaters Anonymous, I said--"Okay, God!  I'm turning this over to you and I'm in for the ride." Clipped to my visor is a little card my OA sponsor gave me some time ago.  It says:  "Do your best.  God will do the rest."  That's my plan. 

I am blessed with incredibly supportive family and friends.  During this initial phase, they have helped me sort through the medical maze and ride the emotional roller coaster.   With their guidance I selected an oncologist, Dr. Jonathan Friedberg, at the Wilmot Cancer Center at Strong Memorial Hospital.  When my housemate, Julie, and I met with him we both got a really good feeling that I was in the right place.  His nurse, Lynn Rich, is a neighbor--someone who lives around the block, but I'd never met.  She seems great and everyone on their team was very nice and super competent.  

I start chemotherapy next week.  I am very optimistic.  One of the first things Dr. Friedberg said was "this is curable."  I've begun the journey towards that cure and know that having your support will definitely help me kick this cancer to the curb!