We’ll lay on our bed and I’ll run my fingers over his prickly beard and explain that I need him to live at least one day longer than I do. You see, I can’t imagine wanting to be alive with out this sweet man. He nods and points out that women typically live longer than men, but he promises to do his best. In our hypothetical world where we choose our deaths he’s willing to live a little without me to make me happy – though he points out that he would be rather unhappy with out me. I’m mad about this man. I want to spend the rest of my life with him. He gives me reason to live, he gives me reason to fight.
The day after Christmas, 12/26/2013, I set my phone down in the kitchen. My cheeks felt pallid, I could feel my heart… faster… or maybe slower… I don’t know… I shouldn’t feel like this. Ginny sat in her green chair with an episode of Micky Mouse playing in the background as Brandan sat at his desk. I laid down on the bed and asked him to come snuggle. My fingers on his scratchy beard, I repeated what the doctor had just told me: “I don’t have kidney stones. I have several masses in my lymph nodes. The largest is the size of a tangerine. 7 cm.” I held up my fingers to help my metrically challenged husband. “It’s called lymphoma.”.
Lymphoma is a type of blood cancer. I think people assume blood cancer = leukemia, I may have been guilty of that, but thanks to hours upon hours of Googling I’ve learned a lot more about blood cancers than I feel any person should ever have to learn. The lymph nodes are kind of like the car-wash of the blood system. At every second of the day 80% of your blood is in your cardiovascular system (veins, arteries, etc.), while the other 20% is working it’s way through the car wash (your lymphatic system). It’s slightly more complicated than that – in that the lymphatic system is a filter and so only plasma is actually circulating through your lymph nodes, but the gist of it is: my body is confused.
Lymphoma is a cancer of the white blood cells.
We are still waiting on results. In the last week I’ve had 4 blood draws, 2 CT scans, and a tumor biopsy. Now I have a PET scan and bone marrow biopsy scheduled, and I am having port “installed” because my veins suck and every time I have something that requires a needle it takes four needles, lots of pain, and 30 more minutes than it SHOULD take. So… there’s that.
Other technical stuff:
My cancer is currently “Stage 2″. You can read more about Lymphoma staging here. But basically, Stage 2 means that more than one set of my lymph nodes in infected, but because both of the infected sets are on the same side of the diaphragm it is still “okay”. I have a bone marrow biopsy scheduled for this week. If the results show cancer cells in my bone marrow then it will jump to Stage 4. If you rest your hands just below your rib cage on your tummy you will feel exactly where my tumors are. Under the palm of your left hand I have a 7 cm tumor, and then several smaller ones scattered across that area.
Understanding the “prognosis” can be confusing. It’s very subjective, but the general statement from my doctor was that people my age, in my health, with my blood results, with my type of cancer have a 70% survival rate of 5 years. This is supposedly good. It pisses me off because I shouldn’t have to think about this. But 70% is a lot better than say… 40%. So I’m trying to stay positive. I have zero of the “risk” factors that indicate poor prognosis, and unless my tumors reject the treatment it should be… relatively… smooth sailing.
My symptoms were exhaustion and back pain. Let me rephrase that. My symptoms were the symptoms of being the mom of a two year old.
I’m scared. The last few weeks have been full of shitty experiences. I’ve had three CT scans, a biopsy of one of the tumors, and thanks to my uncooperative veins each IV and blood draw has taken at least 3 needles in less than optimal locations (for some reason my inner elbow thinks it’s too good to be poked with a needle. Go figure.). I’ve been forced to think about things like how is Brandan going to handle this? How am I going to take care of my daughter and myself? If I don’t die will I ever have more children? Will I die?
I’m bitter. I’m 25. I have an awesome life and I hate that I’m dealing with this. Not that I think any one every “deserves” cancer, but I feel like… well… I really don’t! lol. This feeling comes and goes, but when it comes it’s difficult to shake.
I’m hopeful. We immediately reached out to our friends and family. We are incredibly blessed to have people who love us so much. Preliminary results showed that the cancer seemed to be well contained in my abdomen, my other organs look healthy.
I’m tired. Because let’s be honest – I’m the mother of a two year old who doesn’t nap, and being exhausted is not a new feeling. Unfortunately this disease has left me even more tired than usual, and the medicine to take care of the pain also makes me tired…. so I’m just tired.
I’m thankful. Before this point I’ve told just family and a few friends that I needed to lean on. Already I’ve felt the out pouring of love and support. It gets me through those bitter moments.
I feel like the luckiest unlucky person in the world.
So that’s my life right now. Emotional, over whelming, busy, crazy, exhausting, slightly painful, generally uncomfortable, and tired. Yes… my exhaustion deserves to be mentioned twice. lol.
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