Update on Melinda

Hello All!,

Melinda has had a challenging time over the last few weeks and we understand many of you are concerned. So I, John, will update you as best I can on what has been going on.

In previous posts Melinda has let you know of the new chemo regimine and radiation that she was to receive. She began her chemo and radiation treatments the first week of January. All seemed to be going well until shortly after chemo. The side effects of chemo resulted in a trip to the ER. She was made comfortable then sent home with a pain and nausea management plan. Unfortunately, after a few days of coming back home we had to rush her back to the ER as the side effects and pain worsened.

They discovered that her blood counts were extremely low so she was admitted to ICU. She's received several units of blood and platelets to help stablize the situation. She has now been moved out of ICU to a standard room and appears to be stable. She will receive two more units of blood today, and will be able to return home once her counts are back up and she is able to tolerate pain with oral medication. The good news is that she is feeling much better and is looking forward to returning home.... possibly tomorrow.

Melinda and I would also like to reassure everyone that our spirits and overall outlook are extremely positive. The professional care and plan going forward are promising to us and we look forward to conquering this disease.

We would also like to share some of the wonderful things we have experienced recently as well! Rachel Rose continues to do well in school and is having great fun with her Martial Arts. She is a joy every day and helps to keep a smile on our faces continually. Caroline is excelling in school and enjoying her dance. Most notably, she just WON her school's "Spelling Bee". We are very proud of her... not only for her win, but how she conducted herself afterward. Once she knew she had won, she immediately turned to the runner-up and gave him a "thumbs up" and reassured him that he had a lot to be proud of since he was just a fourth grader.

So, we will continue with the battle and know that good things are ahead. We cannot thank all of our Friends and Family enough for all the support and prayers.

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 http://www.youtube.com/watch?v=Kh2ni2BVbuw

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!

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!

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.

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!!

So, let's see . . .

Where do I begin this update . . . first, I am out of the hospital (for the second time). The only thing they could find with my abdominal pain was "duodenitis" or inflamed duodenum. They don't know why I have it, what caused it, or what to do to make it go away. I just have to watch what I eat and take pain meds when it flares up. Okay. So they sent me home with a regimen of pain meds that seems to be working. This was on a Monday.

The next day, I had an appointment with a retina specialist to check out the spot behind my retina that my eye dr. had seen during my regular eye exam. It was suspicious and could possibly be cancer metastasized. Well, guess what, after a few procedures to get a really good look, it turns out to be exactly that - cancer spread. On the positive side, it looked to be an old spot that is not longer active, a dead spot. Apparently, it had been there for a while and the chemo already took care of it. And it wasn't affecting my vision. Okay, no need to worry about this, just keep an eye on it (excuse the pun). I asked Dr. S if the PET and CT scans check my eyes and he said no, they only go up to the base of my skull. So from now on, I will get full head scans, too.

Then on Wednesday, I noticed my port feeling very sensitive. They had used it for all my iv's while I was in the hospital. I looked and it was kinda red. Infection, right? By Thursday, it was more sore and more red. I decided to go back to the hospital to the infusion suite and let my chemo nurses take a look at it. John almost parked in the 15-minute space thinking they would take a look, confirm the infection, and send us on our way with a script for antibiotics. Well, here's what happened. The infusion nurses did suspect an infection. They called Dr. S who said I should go to the ER. When I got to the ER, they took massive tubes of blood samples to be tested and cultured and said I needed to be admitted. Nooooo, I had just gotten home!!!

They started me on IV antibiotics and waited for the blood samples to show what the infection was, could be staph or strep or MRSA. Great. Dr. S also wanted to have the port removed to eliminate any chance of re-infection. The port removal was supposed to be easy and painless. Let me say, it was not! I was awake and alert the entire time. And the area was already sore, so the little shots of anesthesia and the unattaching of the port itself were torture!! I had my worst episode of pain yet following the port removal. It was so bad I hyperventilated and almost passed out. Thank goodness for Dilaudid and John. My heroes!

Saturday, the dr came in and gave us the best news yet. The infection was staph, but it was the mildest strain. Years ago, they wouldn't even treat it with antibiotics, just let the immunes system take care of it. But since my immune system was compromised from the chemo, he prescribed an oral antibiotic that I could take at home. Home!!! But, my blood counts were low (I had already received a unit of platelets while I was there) they were hesitant to send me home. Well, after another test of my levels, they saw that they had started coming up, so Sat. night I got to go home!!!

BUT . . . as soon as I got home, I got a call from Mom that she was going to the ER. Remember, she had her car wreck the week before. They didn't find anything wrong at that time, but she was having severe pain on her right side now. Turns out the bones in her ribs where the cancer had spread were now broken. It must've happened sometime after she came home from the first visit. They gave her some different pain meds and told her to take it very, very easy until the bones healed.

Can you believe all this?!?!?!

We're all handling everything as well as we can, but it has been really hard!! I'm going to try and set up a Care Calendar for mom, like I have my meal calendar. She's not able to drive and at the moment not even able to move around much. She needs help. John has pretty much taken a leave from work and has been home with me this whole time. I am sooooo lucky to have his help! But I know he's got to be exhausted. The girls have been really good for him, bless their hearts.

So there you go. Things are pretty rough right now. I still can't eat hardly at all and keep losing weight. I still have bouts of nausea and vomiting that don't help. But my hair seems to have stopped falling out and I think I noticed some eyelashes growing in. Yay!

I am still on my chemo schedule getting Doxil every 28 days. The only thing is now I will have to get it through a regular IV since my port is gone. Once every 28 days shouldn't be so bad to find a good vein. I go for my 3rd infusion on Nov. 7 After my 4th infusion, Dr. S wants to evaluate how things are going and decide if it's worthwhile to keep on with the Doxil or if we should switch to something else. I have not heard what my CA125 is lately. That will be a big determining factor.

Okay, that's all for now, that's enough anyway!!!

In the hospital

Well, I'm here in the hospital . . . I had another severe stomach attack last Wednesday and went to the ER. The ER dr. could feel the hard lump in the upper right side of my abdomen, so he did an ultrasound (I hadn't heard back yet from Dr. Cameron's), then a CT scan. Turns out it is my duodenum that is inflamed. Dr. Cameron was contacted as well as Dr. Salmieri to see what can be done about it. In the meantime, they admitted me so they could manage the pain. I was actually really happy about it, I did not want to go home and have another attack with no way of relief. I compared the pain to labor, worst pain in my life! No amount of Rx pain meds were working. IV Dilaudid was my saving grace!

So for the past 2 days I have felt wonderful, practically pain-free! They are not sure what has caused the inflamed duodenum, but a general surgeon has been consulted to see what kind of treatment I should have. I have not met with him yet. Possibly, they will start with IV antibiotics. But surgery is not out of the question.

John has been with me for the past week and a half. I did have my chemo treatment on the 12th and then a Neulasta shot the next day. It has been wonderful to have him home, but I know he needs to get back to work soon. I am just so grateful to everyone who has made sacrifices so that he can be off. God bless you!

Now for the bad news . . . on Wednesday morning we called mom to come over and help with the girls so John could take me to the ER. I knew mom had been really exhausted the night before and it wasn't safe for her to be driving. But it was 5am and she was the only one I could think of. She made it over just fine. Then, to our surprise, Jan arrived right behind her. Mom had called her and probably Jan thought mom wasn't up to helping either and just wanted to be there, too. So they helped get the girls to school and John and I got ready to head to the ER. Mom was REALLY tired and we tried to get her to lie down and take a nap before she headed back home. But she seemed to think she'd be alright and decided to go ahead. I asked Jan to follow her to make sure she made it. Well, apparently Mom nodded off and drove off the road. She hit a phone pole and turned the car over. Despite how bad the accident was, she was okay - Thank you, Lord! Jan was right there and took her to the hospital. The car is probably totalled. After staying a night at the hospital (Gwinnett Medical, not Northside where I am), she was allowed to go home. But she is in a lot of pain. Her front hit the steering wheel and she is really bruised up.

So, needless to say, we have a lot on our plates at the moment! Poor John and Jan are the only healthy ones able to help and they are totally overwhelmed! Jan is still dealing with her divorce and trying to care for her kids solo, and manage her full-time job! It just doesn't seem real that this much misfortune could hit one family all at once like this. Praying for God to give us strength!

Please keep us all in your prayers and ask God to hold us up with His immeasurable grace. We will be okay, I know it. I just wish it wasn't so hard and didn't take so long!