Wednesday, May 11, 2011

Let's start at the very beginning - it's a very good place to start

I am not good at things like this. So here it goes...

I have lymphoma.

Phew. That wasn't so bad, was it ? Actually, it is a lot better than telling you in person. In person it is awkward. I feel like I am asking for sympathy or attention. I don't know what to say. You don't know what to say. And then I don't know what to say back. How do you respond to someone saying they are so sorry, or that they are praying for me ? Thank you ? Me too ? Generally, it is a pretty awful scenario. Which brings me to this blog. I've never blogged before, but I guess if there is any time, this would be it. This is 10x easier to keep everyone updated and lets me go without having to have too many of those awkward conversations.

The medical stuff: Lymphoma is cancer of the lymph system. The lymph system is basically like a filter for your body, and is mainly there to work with your immune system to help fight off infections. There are two types of lymphoma, Hodgkin's and Non-Hodgkin's (creative, right ?). I have Hodgkin's Lymphoma, and the subtype is nodular sclerosing. In simple terms I have the most common and most treatable type. If you are going to get cancer, this is the kind you want. My cancer is advanced, but I have been downgraded from stage 4 to stage 3, because the cancer had not yet affected my bone marrow (very good news).

Treatment for me consists of 6-8 months of AVBD (adriamycin, bleomycin, vinblastine, & dacarbazine) chemotherapy, possibly followed by radiation (if I need it). Chemotherapy is given through a port, which is a small device that has been implanted under my skin and allows the chemo drugs to go directly into my bloodstream without ruining the veins in my arms. I go in for chemo every two weeks, and the meds take 5-6 hours to administer via IV. Then I get a shot called Neulasta that keeps my white blood cell count up.

As of now, the chemotherapy has not been horrible to me. I am obviously a little nauseous for the first few days, and a little tired, some stomach issues, and what I refer to as "chemo hands" (which look like I used a really bad self-tanner just on my hands). But overall, I feel amazingly lucky that my body has tolerated the chemo as well as it has.

The biggest question I get about chemo is about my hair. Two of the four chemo drugs I get, are drugs that cause hairloss. Only about 5% of patients who receive this type of chemo do not lose their hair. However, two weeks ago was the day my nurse prepared my to begin losing my hair. My hair has definitely started to thin, but luckily I had 2x times the hair of a normal person and I can afford to lose some without it being too noticeable. As far as I know my hair could continue to thin, or I could lose it all at any time in the next 6-8 months. I sort of feel like a time-bomb right now. This is one of the reasons I made this blog. I don't want to run into you somewhere, with a headscarf on and feel like I have been keeping something from you.

How things went down:

2/11: Doctors appt to look at a swollen area on my neck. Bloodwork ruled out what we thought was a thyroid issue.
2/17: CT scans of my neck revealed multiple small tumors in neck lymph nodes, as well as swollen lymph nodes in neck and chest.
3/8: Fine needle biopsy of neck lymph nodes. Results were "highly suspicious" of lymphoma
3/16: Surgical biopsy of lymph node & bone marrow aspiration.
3/21: Lymphoma diagnosis confirmed
3/28: First visit to Cancer Treatment Centers of America (CTCA). PET scans, CT scans, and tests galore
4/7: First meeting with my oncologist, Dr. Panicker.
4/15: Port-a-cath placement surgery
4/15: Chemo - round 1
4/29: Chemo - round 2

Some super cute pictures to document all this fun stuff :)

Stylin before my surgical biopsy.

Post surgical biopsy.

Before my port placement surgery.

Oompa-Loompa Briana after my port placement. Nurse's instructions were to NOT scrub off the orange. Was she kidding me ? It was up to my chin. That was a fun walk out of the hospital.

First chemo session. My amazing nurse Wendy is in the background. It's kind of interesting if you have ever wondered what actually goes on in chemo.

I hope I haven't bored you to death with my thoroughness. I love you all, and never wanted anyone to think I was keeping anything from them. It is just not comfortable for me to tell people. I feel like I am asking for attention, and I really don't know what to say. But on the other hand, I really do want people to know what is going on. So I hope this blog, can do that job for me.

I appreciate the AMAZING people I have in my life who have been there for me more than I ever could have asked in the past few months. You can't imagine how much I have needed and appreciated you.