Well, I finally have some answers regarding my health and I wanted to share what’s going on with all of you. There are some family members whose emails I don’t have, so feel free to forward this info. It’s much easier for me to say everything once rather than call everyone individually, so I’m going with this more impersonal route, but know that I have no problem talking with you about this.
1. I have been diagnosed with Sjogren’s syndrome, which is an autoimmune disease that attacks the regions of my body that make moisture (saliva glands, eyes, nose, etc.). There are some arthritis-type symptoms involved with this as well but as of right now it is not too bad. There is no cure, but it is milder than lupus and manageable with medication. For now, however, we will not be treating it. It goes on the back-burner because:
2. I have also been diagnosed with Hodgkin’s lymphoma. This is a cancer of the white blood cells. It typically manifests itself in the lymphatic system, and a classic symptom of Hodgkin’s is unexplained itching (a-ha!). This diagnosis answers many questions. Treatment of Hodgkin’s has a very high success rate, and I am quite optimistic about a complete cure. Now for the question and answer section.
What stage am I in?
Hodgkin’s is staged according to which areas of the body have been affected (just on one side of the diaphragm or on both sides of it). Mine is mainly above the diaphragm but I do have some involvement in my abdomen (which is below the diaphragm), plus my sternum and left hip bone. Both above and below plus the bone involvement puts me at stage 4. Don’t freak out. That doesn’t make it any less curable. It just means I’ve had this longer than we originally thought.
Why wasn’t this caught with the previous biopsies?
Don’t know. It just wasn’t. Poor samples, sneaky cancer cells…who knows? The important thing is I’ve got a doctor who kept pushing and testing until she found the answer and now we’ve got one.
What’s the treatment?
Chemotherapy. There are no tumors to cut out and no big masses of lymph-ness to radiate. If my doctor feels radiation is appropriate after chemo, then we will try it. My particular chemo treatment will be ABVD. Those letters stand for specific drugs. If you want more than that, Google it. I can’t spell the names. This Friday I will do some baseline tests (lung, heart, brain function, etc.) and next Tuesday I will do another PET scan to have a picture of exactly where the disease is before treatment. I will get a port (much easier than doing an IV every time) and do a chemo treatment every other Wednesday until the end of June, starting next Wednesday. If for some reason we can’t get the port done by then, we will start the following Wednesday. Wednesdays are the days my doctor is at the office I chose for treatment. They are also convenient for me schedule-wise. Nothing else special about Wednesdays.
Will I get sick?
Yes. These drugs have some side effects. But I will also get steroids and anti-nausea meds to help with the sickness and the fatigue. My doctor and nurses are very proactive about keeping their patients comfortable. I will not be puking all day long.
Will I lose my hair?
Also yes. Many of you know I have been growing it to donate it anyway. My wonderful hairdresser has graciously agreed to work me in so I can do that before I start treatment. Bobby thinks the Sinead O’Connor look will be sexy on me. I quite agree, though I imagine I’ll have to wear a hat until the weather warms up. It’ll grow back after I finish treatment. I don’t plan to wear a wig because a) just the thought makes me itch and b) I’m not too worried about it. It’s just hair.
What about work and school?
For now, I’m going to try to continue to work and do grad school. If I have to cut things out, I will. But first I want to see how it goes. I’ve promised Bobby that if things get overwhelming, I will take them off my plate. But I don’t want to be home on the couch if my condition doesn’t dictate that.
Why am I not more upset about all this?
I’m not going to pretend this doesn’t suck. It sucks. A lot. But I’m choosing to be positive. I’m choosing to have faith. I believe that my doctors know what they are doing. I believe that God will make me well and whole again, in His timing. I am so grateful to finally have an answer. I am so thankful that the cancer I have is a curable one. I am so thankful that after a couple of weeks of treatment, my itching will go away. That alone is worth trading my hair and a few lunches for. I am also grateful for the wonderful support system I have in all of you. I am not alone in this. I know that when my strength fails me, I will have all of you to fall back on. So keep the love, light, thoughts, and prayers coming. They mean more than you know.
What can you do to help me?
Food – Bobby and I run a crazy schedule. The hours we are home are erratic, and we are rarely all four together at the same time. We’ve talked about it, and we’ve decided the easiest thing would be gift cards to restaurants near us and/or walmart/target/publix. This will also save me the trouble of defrosting, washing dishes, finding room in the freezer, etc.
Child care – If you want to help with watching the kids or picking them up from school, email or text me your phone number, email address, and days/hours you’re willing to do that. We think we’ll have it mostly covered, but we know there will be some days that we’ll need help. I’d like to have a list to rotate with. On that note, we haven’t talked to the kids yet as we just got all this info today. But we are planning to tell them that I’ve found what’s making me itch and the medicine will make me very tired. Beyond that, we’ll just be answering questions as they ask. Please check with me or Bobby before you talk with them about all this. We want to make sure they don’t have any worry or anxiety beyond what is unavoidable. Yes, Mommy’s sick, but she’s going to be okay.
Bills – I don’t even know where to start with this one. I’ve already racked up thousands in hospital and doctor bills. Once we’ve gotten treatment situated, we will start doing the math and setting up payment plans. I don’t have plans for a fundraiser or anything right now. If you want to contribute, let me know. I’ll pick a Wellstar bill and send it to you. 🙂
I love you all to the moon and back. Don’t be afraid to ask me questions. Don’t be afraid to act like I’m a normal person, either. Definitely don’t be afraid to hug me. Don’t worry, be happy. Everything is going to be fine.