Saturday, December 31, 2011

Happy New Year's!

Getting ready for a new year and new happenings, positive ones! With the holidays, it’s been slow and tedious getting dr appts and speaking with anyone, but here’s what has gotten done so far. We got my PET scan results to Dr. Horowitz with Winship at Emory, but when I spoke with his assistant the next day, she said that wasn’t what they needed. Ugh! They need the original biopsy result. So we’ll have to wait until next week to get copies of that. Dr. H is thinking that the bone lesions might be a different kind of cancer. He says it’s rare for ovarian cancer to metastasize to the bone and he asked if I’d ever had a bone biopsy. I said no, we all just assumed it was the ovarian cancer. So I think he’s going to want to do a bone biopsy. If it does turn out to be a different cancer, then that could determine what kind of treatment I need. So far the radiation has been working, but there might be another kind of chemo that would do better. When I went to the radiation dr as planned to get set up for rads to the bone spots, I mentioned this suspicion of Dr. H’s to the rad dr, Dr. Levitt. He agreed that with the possibility. So he’s going to start treating the neck and shoulder and save the lower back (I don’t think I mentioned that spot earlier) until after the biopsy.

Now for the rad appt . . . since I will be getting radiation to my spine in my neck, it is imperative that I not move my head at all. And the way they do this is to place a hard plastic mesh mask over your face and bolt it to the table. Now, if you have problems with MRI and claustrophobia like I have, this procedure is a zillion times worse. First the plastic mesh starts out soft and warm and wet. It takes about 10 minutes for it to harden. But it has to be the exact mold of your face, so to begin they stretch it down hard over your face and bolt it to the table until it hardens. You can open your eyes and breathe through it because it is mesh after all, but it was so tight, my eyelids wouldn’t open all the way and I couldn’t move my lips at all. I knew the panic was coming. Before it got completely solid, I let the techs know that I was freaking out and asked how long it would take. They said about ten minutes. Bless them, they really worked as fast as they could. But after it hardened, I had to have a CT scan to target the spot for treatment. So as I lay there, locked down to the table with a Hannibal Lecter type face mask, I began going in and out of the CT scanner, which is essentially an MRI tube . . . AHHHHHH!!! I began trying to control my breathing, but every time I exhaled I made some kind of vocalization. It began with a light moan, but escalated to a wail, then to a loud cry. I couldn’t speak, but I began to recite the Lord’s Prayer the best I could and that calmed me down a little. Finally, the tech rushed in and unbolted me. I can’t believe I made it through. But I kept telling myself, I had to get this done and over with. I didn’t have a choice. God gave me the strength and control I needed, thank you, Lord!

Here's a video of the mask-fitting process

So, now I will start treatments next Wednesday. I will have 15 days of treatment to my neck, so that means 15 more battles with the mask. I plan to take some medicine to calm me beforehand and the treatments won’t last as long as the mask fitting and CT scan did. I think I can do it. But I would still appreciate prayers of mental strength and control to get me through it.

Also, I will begin a new chemo on Wednesday right after the rad treatment. This one is Topotecan and has basically the same side effects as all the others – nausea, fatigue, general malaise, etc. The plan is for this chemo to zap the lung areas. I will still see Dr. Horowitz at some point once he reviews my original biopsy. It’s not that I don’t trust Dr. Salmieri anymore. I’m just ready to look at this whole thing with fresh eyes. MD Anderson is still not out of the question, either.

Well, I hope everyone has a great New Year’s Eve tonight and a Happy New Year’s Day tomorrow!

Friday, December 23, 2011

PET scan results

Well, the PET showed spread to my lungs and bones. In my bones, there is are spots in my right scapula (that is very painful!), the base of my neck in my spine, and my 11th left rib. He is recommending radiation for the bones. I've had good success with that, so I'm hopeful there. And he is suggesting more chemo for my lungs, ugh! I really don't want any more chemo. I feel it is doing enough damage on its own. I think we may plan on seeing someone from Emory and perhaps MD Anderson. Will let you know what plays out. I appreciate all the prayers!

Wednesday, December 14, 2011

Another hospital stay!

I got home yesterday from yet another lovely stay at Northside Forsyth hospital. I had begun to feel really bad about 3 days after my treatment. Just weak, nauseous, achy, and severe stomach pain. So I finally decided I needed to go to the ER. It was in the middle of the night so we just called an ambulance to take me so John could stay with the girls. It wasn’t a big deal to me, after all I know the routines of the ER pretty good, and I wasn’t worried about going alone.

So when I got there, I was running a fever and my lungs showed pneumonia. They decided to admit me. I only stayed over the weekend getting IV antibiotics and pain meds. They didn’t want to do too many tests since my PET scan was already set up for Thursday. I had, and still have, my doubts about the “pneumonia” since that is what they kept calling it last winter and it turned out to be cancer. But I am congested and have a stuffy nose. It would be a welcome miracle if it is just pneumonia!

So, I am feeling well now. I have a zillion drugs to take now – stuff for the infection, stuff for my stomach, stuff for pain, . . .. I hate taking so much medicine because if you are feeling bad, you really can never know if it’s for real or just an effect of all the meds!

My PET scan is tomorrow and I’m pretty anxious about it. If it’s not good, then he’s talking about putting me on another chemo. I DO NOT WANT ANYMORE CHEMO!!! So I’m asking all of my prayer warriors to get ready for battle!!! I plan to fight against any negative results. Positive! Positive! Positive!! My God can do anything and I know he wants the best for me. I plan to pray out loud so that my voice can give power. I deserve to get well!

Will post again when I get the results.

Monday, December 5, 2011

4th chemo done, scans coming up

I had my 4th infusion of Doxil today. Everything went well. John came with me and all was done in time for us to pick up the girls off the bus. I did see Dr. Salmieri, too. He noticed how bad I was feeling and how much weight I've lost. The plan is to get another CA125 drawn, have a PET scan done and meet again with the gastro/surgical doctors. There are still lumps in my abdomen and I've still got the tenderness and pain. There has GOT to be something there! I just can't believe they can't find it. I'm ready for exploratory surgery at this point!

We're hoping to have results from all these tests in a couple of weeks. If we decide the Doxil is no longer working, he wants to possibly switch me to another chemo. I'm not real excited about this because I'm starting to think the chemo might be doing more damage than the cancer. I mean, I have been on some sort of chemo for the past 19 months with only a 3 month break. You gotta wonder how much poison a body can take!!

I'll post again when we have more news. In the meantime, we are all getting excited about Christmas and enjoying hanging out together. On my good days, I'm able to get outside for a little while, maybe have John take me to the store and use the "scooter" to look around a little. Walking any distance is a challenge and I have to take frequent breaks. I do have my own handicap sticker now, so I'm official!

We actually went downtown this past weekend to see the Grinch at the Fox. It was soooo much fun. Our nosebleeds seats were a nightmare to get to, but I made it to them without losing consciousness! I don't want to stop making memories just because I have cancer! I'm going to do what I can do, as much as I can do, for as long as I can do it!! My girls deserve the memories.

I hope everyone is enjoying this amazing time of year and making memories of your own!!