I was diagnosed with Hodgkin’s Lymphoma, my sub type is Nodular Lymphocyte Predominate.
August was a crazy month, I had surgery to remove a very large lump in my neck on the 1st. Since then it’s been numerous appointments trying to prepare for the inevitable, chemo.
I guess I’m finally letting this all out because tomorrow I go in for another surgery to get a port placed in my chest and on Monday the 14th I start chemotherapy. I’d be lying if I said I wasn’t scared about all of the crazy side-effects and the damage that is done to every cell of my body undergoing this kind of treatment.
Last week I received the news of chemotherapy as my treatment, all month long we were hoping and praying for the lymphoma to be in my neck only and I would only have to endure some local radiation. However I’ve been classified as stage 3A. The 3 meaning that the cancer is spread throughout other lymph areas of my body and the A meaning that I do not have any symptoms of the disease.
Over the past few weeks I have endured many tests, from simple blood samples, to a bone marrow biopsy, and a 3 hour CT/PET scan of my neck, chest, abdomen, and pelvis. The good news is that my blood work came back normal. And the big praise is that the bone marrow results came back negative. Since lymphoma is a blood cancer and bone marrow is where your blood is created, this is a very good thing
However the CT/PET scans showed “uptake” in lymph nodes in other areas of my body other than my neck. I have enlarged nodes in both of my armpits, my back, and pelvis as well as the obvious neck area. So basically for the PET scan I had a radioactive sugar mixture pumped into me. Since cancer gobbles up sugars more quickly than anything else that mixture collects in cancerous areas which is what is seen on the scans, or uptake. The CT scan with contrast allows them to look at the actual nodes and measure them. Most normal nodes are under 1cm. Mine are all between 1.5 – 2cm. The one that was removed from my neck was about 2.5cm. My spleen, which is the biggest lymph node in your body, is normal.
I’ve also had many other tests last week to check how I will do with the chemo. I’ve had heart and lung tests, pulminary and MUGA. The chemotherapy is called ABVD, which is the most common. It’s a super long abbreviation for four different drugs. All which require other drugs to counteract the side effects of those drugs.
We also got a second opinion from a doctor at Hillman Cancer Center in Pittsburgh, but it was just to ease our minds on what treatment is already laid out for me. Tomorrow I will be getting a “port” installed in my chest to make blood work and the chemo more tolerable. I will likely be getting stuck with a needle several times a week and the chemo breaks a lot of tissue down. So there is greater risk of collapsing a blood vessel or two. I already bruise pretty easily from regular needle work. A port is a little plastic disc that sits just under the skin that has a numbing agent. Needles can be inserted into it without any discomfort.
Chemo will be administered once every other week for approximately 3-5 hours at the oncologist’s office by North Park. Then I will “recover” for 2 weeks and do it again. We are planning on heading down to Myrtle Beach on the 18th. We are still undecided about whether we will try to start and go down, if I feel bad we will skip our vacation, or if we will push back the start of the chemo for two weeks further.
We appreciate all of the love and support that we have received so far and look forward for more to come.
In a previous post I listed a timeline of how this was discovered and my journey thus far. You can see it directly here: My Hodgkin’s Lymphoma Timeline. I will try my best to keep this up to date. I’m keeping a physical journal to keep track of everything and transferring later.
Now that I’m letting everyone know about this I may as well post about it, so stay tuned here for current information. You can add my site to your RSS reader here: RSS Feed
Lastly I know that we have been receiving amazing outpouring from everyone. There are many who have asked us how they can help out. There are fundraising events throughout the nation at www.lightthenight.org if you would like to help awareness and support for sickos like me. Also if you really feel the need I’ve set up a wishlist of silly things that will make me smile through this next six months or so of chemotherapy and testing. You can see my wishlist here: Wishpot. I realize my gadget boy tastes may be a little crazy so like I said it’s just for fun.
Thank you everyone, information is listed below for the curious. Call me or email me if you want to check up, it makes my day!
Light the Night – Participation and Awareness
Leukemia & Lymphoma Society
Hodgkin’s Lymphoma – Wikipedia
Nodular Lymphocyte Predominant Hodgkin’s Lymphoma – Wikipedia
Lymphoma – WebMD
Adult Hodgkin’s Lymphoma – Cancer.gov
Hodgkin’s Lymphoma – Mayo Clinic
LymphomaInfo.net
Lymphoma.org
Chemotherapy – Wikipedia
ABVD – Wikipedia
Bone Marrow – Wikipedia
Rituxan – Wikipedia, also www.rituxan.com
CD20