Well Ladies, my dear sisters, after a little over a month of constant hospitalizations- It has come to Hospice.
As some of you may have noticed, I haven't been posting as much as usual. I have been hospitalized 4 times in a little over 1 month. Let me explain the more recent. My 2nd all inclusive stay at the City of Hope was because I was having Shortness of Breath with chest pressure and pain. At this same time, I was undergoing WBR and had to stop chemo because I was going to start Eribulin and there is no data to support the safety of WBR and chemo at the same time. So, my Onc decided to put me on Eribulin due to extreme progression of disease against my RAD ONC's orders. So, the days I would be on chemo I will not do radiation. WORKS FOR ME!
Well, about less than a week after I was discharged I began to get sick with flu like symptoms but my 103 fever will not go away. So, I visited the evaluation center after radiation (on Tuesday 2/22/11) hoping to get antibiotics. Wouldn't you know that my fever had broke right before stepping foot in the facility. So you can imagine how much I looked like a "jackass" at that point. They did blood cultures and said to return or call if I didn't feel better. I received a call from the NP at my Onc's office and she said I had bacteria that grew so I need to get admitted.
I wanted to scream because at this point this was my 3rd admission, one right after the other. It was determined that I had a bacterial infection in my port as well as my bloodstream and there were 2 different bugs in the blood. O'h joy how I love to stay in the hospital! I had my port removed considering it was the source and had a picc line installed in my right arm. Finally, I was dc'd from the hospital and was so HAPPY to feel the air hit my face. They gave me a pump so that I can automatically receive my anitbiotics through my picc line for the next 2 weeks.
Literally, about 2-3 DAYS later, I was feeling pain in my arm where the picc line was. So, just to make my husband happy and he doesn't yell at me, I decided to call into the doctors office (Monday night 2/28/11) to see if it's normal and of course with my luck it wasn't. They said for me to go to the local ER because it was after hours and they are not equipped to handle something like this after hours. (Blows my mind because they are a major cancer hospital- how do you not have the staffing and equipment after hours?)
So I go to the local ER and I have a blood clot from my right elbow up to my shoulder down my right shoulder blade. SAY WHAT? I couldn't believe it was that big. Anyway, there I go again hospitalized for a week. It was really ironic how this happened because the very next day I started with pain and shortness of breath on my left side and then also where my liver is at. CT and MRI later it has come that I have 20 tumors sizes of grapes and golf balls in my liver. By the way, some of my brain mets aren't gone.
My onc said that we have maybe 1 more drug to try and that's the end of my road. So, I decided that I would rather enjoy the rest of my life enjoying it with my family than getting sick off of chemo and being in the hospital.
I feel good about my decision and if you were to ask me 2 1/2 yrs ago if I would consider Hospice I would tell you "O'h heck no". These last 9 months have just gone by so quick with the cancer spreading the way it did. My doc is giving me less than 3 months to live so I decided to take advantage and start my bucket list.
This friday we are taking 40 members of our family on an all expense paid trip to Vegas. We are taking a limo bus and staying at the Palazzo. I want to build memories more than anything else. My kids are excited because they love circus circus of course. Then, at the end of the month we have 15 of us going to my most favorite game show "The Price is Right" too bad my buddy Bob Barker isn't the host. My thing on my bucket list is to spin the wheel. I don't even care if I get called or not. :)
Again, I feel good about my decision because about 3 months ago I knew that I would die from this disease. It's a reality and considering everywhere it's at that there is no chemo that will save my life but maybe prolong it a little. Hospice sends a nurse out 3 times a week and I have a Fentanyl patch on for pain. I can take other meds for breakthrough pain but I hate to feel drowsy and tired. I am not afraid to die but am afraid for my kids and husband. It's those who stay here who have to suffer. That breaks my heart.
Did you know that in every state other than CT, if you take the accelerated benefit of your life insurance then you are forced to take 40% of your face value. That is what we did but we only wanted 10% which is more than enough to do what we want to do.
I thank you ladies for your support and I do plan on keeping you all posted. Love to you all