Sunday, August 17, 2014

time to post an entry 🙂

I took some time and unplugged and went off the grid while in the hospital and up until now. It was so hard for me to be in the hospital for 8 days. My kids had no idea what was going on, I had no idea what was going on.

I was tested and retested and pretty much had the hospitalists, the infectious disease doctors and my oncologists heads spinning. While there were findings in my lungs, there was nothing really telling the doctors why my fever kept spiking and why my blood counts were dropping and making me neutropenic. I was on so many different combinations of IV antibiotics and nothing was really working. They couldn’t tell if I had a gram positive or gram negative bacterial infection somewhere because all of my blood cultures were coming back negative. Every time my fever would spike, another culture would be done and there just were not any answers so they would switch my antibiotics. I was always on a combination of 3 antibiotics at a time and I was not showing improvement. I could not go 24 hours without a fever. The big question was about my port line. Was it infected somewhere? I was a day away from going into surgery to have it removed. Finally, I had enough, I couldn’t take it anymore. I love my doctors and love the exceptional care I get but a hospital is not a healing environment. It works miracles for emergency situations where medical intervention is required but I was just sitting in a hospital room while they were watching me because I have cancer. I know what precautions to take at home and I know what my baselines are and when I need to seek medical attention. What I was doing there, I could do at home in a much better environment. Plus, I desperately needed to see my kids. I convinced them to discharge me and my primary oncologist was not thrilled but I promised I would be careful and go straight back to the hospital if anything changed.

I do have bilateral pleural effusions and very weak lungs which is causing some chest pain but I no longer have any more fevers. The days where I forget I have cancer are few and far between right now because I am more symptomatic but I know eventually I will get back to where I was. I just need some time to heal. Coming to terms with the fact that I am not as strong as I like to think I am is not easy.

I have chemo tomorrow. I have to admit that it is the first time in a long time that I am actually scared and hesitant about going in. Last time I had treatment, they added a new infusion to help strengthen my bones called Zometa. Within 24 hours, I was admitted to the hospital. Scott is convinced that is what put me there. My doctors don’t think so. I don’t know what to think. I just don’t want to go back to the hospital. I know that I need this drug because of the cancer spreading to my bones, they have become weak. The chemo also weakens my bones. My calcium was dangerously low in the hospital so I am on supplements for that now. I know that I am at a high risk for a fracture if I breathe the wrong way. This terrifies me.

I just wanted to post an update and get back on the grid for a bit. I got to spend some quality time with my family in Maine this past week and it was so good for my heart to see the kids having so much fun after the week they had wondering why their mother was not coming home. I cannot express enough the gratitude I have for everyone who helped me out and/or offered their help and services. You all made this easier on me and my family and I am lucky to have an amazing pipe line of support. I will eventually find a way to pay this forward.

On particularly rough days when I’m sure I can’t possibly endure any more crap, I like to remind myself that my track record for getting through bad days so far is 100% because I am still here, and that is pretty good.

Love and hugs, Jessica xo

August 1, 2014

I took a turn the worse last night, around 11:30pm, I spiked a fever. Troops rushed in, blood cultures and all and woke Scott out of his sound sleep. After everyone left, I obviously could not go back to sleep because I knew there was no way in hell they were going to let me go home. My blood counts weren’t the only factors anymore. I am on quite the cocktail of pills here because of how I take care of myself at home. The vitamins and minerals that I put into my body every day from my diet and juicing have kept my body a thriving environment. Since I have been in this joint the whole week, my body is severely depleted of everything and messed with my alkaline and Ph levels that they are throwing pills down my throat like I’ve never seen before. Keep in mind, I don’t even take supplements at home, there has never been a need because I am on top of it. Sunrise comes and I get my morning check up and, here’s a big surprise….they find another complication!!

Off to radiology I go with my get up, mask and gloves.

I make it back to my room and get settled and my very patient (because I have just about had enough) doctor comes in and tells me that I have bacterial pneumonia and I am not going anywhere.

There are pros and cons with this new finding.
-I do not have a bacterial blood infection and it appears my port line is not infected.
-I am in the right place.
-I will have to live in a bubble for awhile when I do go home. No visitors, sterile, masks and bleach. My girlfriends are going to my house tomorrow to clean my house so it’s ready for when I come home 🙂

I have started my new meds for this lovely diagnosis and will see how I do. My ANC and white count are creeping up and if I stay in this direction, I could possiblyyyyyyy go home tomorrow 🙂

Keep checking for updates, never a dull moment!

Scott’s Entry – Fri, Aug 1, 2014

Ok kids. Just a quick blog tonight. It’s been a long week

It’s been a crap week. My poor Jess stuck in the hospital for what will be 5-6 days by the time she is done. Being in the hospital sucks. I know I’m stating the obvious but just awful. Sick people. Some so much worse than Jess. So many people alone. I won’t ever get that. We were in a room and the woman next to us, all alone for the most part. She was really struggling. Not just with her sickness, but she was really confused on where she was. Felt so bad for her.

Her son comes in, his boyfriend the next day and then really no one. They all stayed for a short amount of time and then left. How sad! I was hoping to see the son again, I was gonna say something to him. Jerk.

I would never leave my Jess alone. Truth is I wouldn’t leave anyone alone. Trust me, she hates being here. Isn’t exactly all smiles and happiness in here but wtf, you don’t leave the people you love alone. Especially when they absolutely need you. I say these are the times I earn my right to tell her “STFU” when we are arguing over the TV or cookies or some other mindless item.

Oddly we love some of this time together. We get to laugh and crap on each other.

As for my girl, we hope to go home tomorrow. She has Pneumonia. It’s funny to say, but it is ok. While very serious for someone like Jess, I am glad they know what it is, will treat it and she can get better. That was part of the issue. She had this fever and drop in counts, etc and no one knew why. Drove poor Jess crazy.

I have to make sure I mention all the folks at home. Taking care of the girls while we are here. Debbie, Michelle, Lisa. Just been incredible. Takes a village and we have a great one. My Dad came through for me as well. And I have to say I work for the best people. They have given me my space to take care of my family.

I also want to say thanks to everyone who has sent messages to us. So sweet. It means so much to Jess and has absolutely get her through this week.

Ok. I’m going to call it a night and hang out with sicky until she falls asleep.