Here is the information we learned from my doctor's appointment on Thursday. I have been mulling it over in my head since then.
Thursday night Patrick and I went on a date to a comedy play at the Hale Center Theater. It was so funny and so much fun to be together and have a break! Especially after all of... everything. Friday I didn't want to really talk to anyone and I was glad that no one stopped by to hang out or anything. I enjoyed my Friday night without anyone else around. It was good. And here we are to Saturday. I better write this all down before I don't remember it.
I have Stage 2 Hodgkin's Lymphoma. It is centralized in my chest (where the largest tumor is 10cm long), but it goes up and into my neck, totaling 14.2cm. Because it is over 11cm, it is classified as Stage 2. However, it's EARLY Stage 2 because I don't have ANY other symptoms - and the fact that I don't have any symptoms is a REALLY good thing. The size of it makes it "unfavorable" in cancer definitions, but, again, since I don't have other symptoms, this is still okay. It's just kind of.... really big.
There are also other factors that put me on a scale from 0-5, 0 being good, 5 being not good. These come from The International Prognostic Score for Hodgkin's Lymphoma. One point is given for each of the following characteristics below present in the patient, for a total score ranging from zero to 7. (Oh, I guess it goes to 7... anyway....)
- Serum albumin <4 g/dL (this test was done Thursday with my bloooood. So we don't know this one yet.)
- Hemoglobin <10.5 g/dL
- Male gender
- Age >45 years
- Stage IV disease
- White blood cell count greater than or equal to 15,000/microL
- Absolute lymphocyte count <600/microL and/or <8 % of the total white blood cell count
I'm "negative" for all of those things, and since we didn't know the answer to the first one, that makes me a 0 or a 1.
So that means that I have a 97 or 98% recovery rate chance thing and 84 or 88 people out of 100 were HL-free five years out, like didn't have it reoccur. If it did reoccur, they were cured.
So those are REALLY good numbers. Plus, I just know that I'll be fine.
So the drug combo they will use the
AVBD that he thought they'd use.
A can cause heart failure in a very small % and can make your pee red or orange. It also has the chance of causing you to get leukemia 8-10 years down the road. Cool........ (this is why they did the echo - which looked fine and dandy, by the way.)
V can cause numbness, tingling, and constipation (so eat lots of fruits/veggies, take stool softeners if I miss a day - you wanted to know that, huh? Just keep things regular and it won't be a problem.
B can cause fever, inflammation of the lung, something about "growth factors" being bad or something which can make the inflammation of the lung worse. (Someone feel free to explain that one to me because I forgot already.) :)
D doesn't do much as far as super fun side effects. Nausea and vomiting. Okay, that's super fun.
One of my friends from high school who is a pharmacist drew me a picture of "Chemo (Wo)man" and I think it's amusing and helpful, so here it is. I'm sharing it with you. :) I think it's an awesome drawing.
So after 3 weeks after my first treatment, I will lose my hair. The chemo attacks rapidly dividing cells and our head-hair cell rapidly divide.... so it kills them off first.
For the nausea and vomiting I'll get 2 prescriptions (actually, I just need to go pick them up) - procloperozine (sometimes called confizene) and lorazepam. They both may make me tired, so no driving when I take them.
I'll get an antibiotic called leviquin. I'll keep this on hand in case I get sick on the weekend or the middle of the night or anything like that - it's easier and faster than having a prescription called in and having to chance that getting messed up.
If I ever get a fever above 100.4 (forehead temp is accurate), I call the clinic and they'll assess it over the phone - whether or not to take the antibiotic, etc. If I ever have shaking chills, vomiting, diarrhea, those kind of horrible things... call in.
I might get mouth sores. Basically side-effects I should call in and ask about them or what to do with them.
If my phone call is urgent, always choose the front desk option. All other calls go to a voicemail tree system and if I don't get a call back within two hours from that, call back. If the front desk is busy, keep calling back.
I can use essential oils, but not ingest them. On my skin, there is a smaller concentration, so it should be okay. Patrick thinks I should lay off of them. We will see how I'm feeling. The concern is that they may interfere with the chemo drugs, and if they chemo doesn't work because of oils, boy, I'd feel like a schmuck.
Don't take any additional vitamins or anything like that without asking first. I currently take a prenatal vitamin and Vitamin D. Those are okay.
So after 4 months of chemo, I will have another PET scan. The PET scan is like a cat scan that goes an extra step - sort of. I mean, in my terms, it's kind of that. Ha ha. This is how my PET scan appointment went on Wednesday:
I went in and they put radioactive sugar in my blood. Then I went to another room and drank 1 1/2 cans of diet coke with some kind of disgusting syrup stuff mixed in that did something to my intestines so that they didn't glow in the scan. I had to rest for an hour in this room in a reclined chair with warm blankets on me and the lights dimmed. There was a camera in there so the guy could see if I needed anything or started to die or something. The combo of those two meds with having fasted for 9 hours and all that Diet Coke.... really upset my stomach. Like for a full day. But I survived. :) After my "nap" - can't use any muscles during this time or your muscles will take that sugar and they will light up on the scan, which will make the docs think there's cancer there. So you can't read or text or ANYTHING. You're supposed to sleep. But you're at the hospital in a hospital gown and you have to drink a nasty concoction and "relax" in their recliner with a pillow covered in plastic. Yeah, not exactly the resting I was hoping for, but not all bad either. The scan itself took about 30 minutes - they did all the way from my brain to my knees, hit the major organs, and it took about 5 minutes per section. I put my arms up above my head - something about less radiation or something. And that is how they saw where the cancer is.
Oh - my bone marrow biopsy - couldn't feel a thing! I was really nervous - my veins were running away from the nurse (apparently they can do that. they shrink), but I was gone for all of 10 minutes, I was put under and out for everything and I don't remember and couldn't feel anything. I was SO nervous about that! I slept for like a half hour after I came back and then they yelled to wake me up. The first thing I thought was, "I hope Cami can't see my butt." because my fanny was facing her direction. She was my responsible adult for this procedure since Patrick was at drill for the Guard. We were hoping for something hilarious, but nothing happened. I bobbed my head to the side for a few minutes, but nothing really. We got some Zupa's and cupcakes on the way home, watched Pitch Perfect and I took meds for my sore backside. It felt like I had backed into the corner of a counter. And there was some pain down my leg - I assume from the tiny drill they used. It went away by the next morning. And I just took pain meds for about a day and a half and tried not to bump it. It just looks like a tiny dot now. Patrick thought I had a small mole and then he remembered about the biopsy. haha. It's healing nicely.
Anyway, I couldn't remember if I talked about that already or not so there ya go.
So after 4 months of chemo, a PET scan. That will basically decide if I do another two months of treatments or not. We're thinking I will probably do the full six, but we will see!
They will only do another echo if I have any symptoms that suggest that they should.
One month after my last chemo treatment, I will have radiation. That will make me tirrrrred. And because the tumor is close to my heart it may cause heart damage that could cause me problems down the road. But they try really hard to not have the radiation get my heart. :)
So... for chemo.
I can get a porta-cath (portable catheter) if I want one. It would go 1-1.5" below my collar bone. I would go to Radiology to get it put in. They partially put me out, cut me open, and slide the puppy in under the muscle. Then it heals up in a couple of weeks and the nurse said it shouldn't bother me. The doctor said it could. I don't know. I'm torn. Then they poke through the skin and access the port that way to give me meds. I need to do more research on it, but there is a risk for clotting with a port.
I can use my veins for treatment. There is one drug that, if it leaks (and since my veins are weakened, that's a possibility), can eat through my tissue. So that's not good. It can also make my arms sore as my veins get used and weaken.
So I don't know. I'd like some opinions on this because I'm kind of freaked out since that lady asked me to come "feel her port" and I think that's creepy. So I kind of have a bitter taste in my mouth about them. BUT it would make it easier to do things while getting treatments and not weaken my veins and whatnot. It also just freaks me out - having something in me that I can feel and stuff. Ick.
Opinions would be bueno. :) I can get one at any time. It doesn't delay treatments or anything.
So this Tuesday I go to a chemo class to learn about it. Then next Monday, the 11th, will be my first treatment. On the 20th, I'll go in for a nadir appointment, where they'll check my blood count to check my immune system. I will have treatments every TWO weeks. Two treatments makes up ONE CYCLE. So I have 4-6 cycles, which is 8-12 treatments. Everything I do will be at Utah Valley, so that's nice. I don't have to go up to SLC or anything. Somewhere between 2-5 days after a treatment is when I will feel the sickest or most nauseous, down, whatever. So that's when I will probably need the most help. About one week after a treatment is when my immune system will be down the most, if it does. There's a guy there whose immune system hasn't gone down. And I will get more and more tired as we go along. Anyway, everything is INDIVIDUAL and there's no way to predict it. Just like with my hair - I could lose just my head hair, I could lose all of my hair. Cancer is mean. And the drugs are mean. They attack and affect everyone differently and there isn't really a way to predict it.
And I think that's about it.
Questions???
