My last post, left off with me getting the transfusion.
The transfusion went well. I was finished about 430pm. I got two units of blood. It is kinda scary thinking about a transfusion. Someone else's blood in my body. It's creepy. However it saves many many lives at the same time. I have heard from other cancer patients that after getting a transfusion you have lots of energy. This was NOT the case for me. I was exhausted the following day. I just wanted to sleep all day and I did sleep mostly all day. I didn't have any visitors until about noon on Friday and it felt really good to just sleep. I saw my ID (Infectious Disease) doctor about 230pm on Friday and she told me I would be able to be released that evening. They were going to get me set up with Home Health and get the IV antibiotics ordered to get my first dose that night before I went home. I had my doubts. I didn't think they would be able to get home health set up that night. To my surprise they did. I had my first dose of the new antibiotics that night and was discharged about 8pm. I have to say Good Sam is just an absolutely wonderful hospital. Every time I am in there I have nothing but the best nurses, the best doctors and the over all care they give their patients is just amazing. When I was discharged on Friday my nurse for the day was leaving at the same time, she says "instead of waiting for them to come up and get you, I'll take you down myself." She was fantastic! Such a wonderful nurse.
I was home about 9pm and it felt so good to just be home!! Out of that hospital bed and in my own. Saturday my antibiotics were suppose to be delivered about 5pm. I got a call at 5pm ON THE DOT saying "I am running an hour behind" I let him know my Home Health Nurse will be here to do the infusion at 6pm, and my supplies needed to be there before 6pm. He was there at 559pm with the supplies. My Home Health Nurse calls and says she is lost about 630pm. I give her directions and she says "I'll be there in 10 minutes" about 30 minutes later she is finally here. She was a nice nurse but VERY unorganized. I finally got my infusion done and it made me sick to my stomach. I have thrown up more in the past week than I have my whole life...If I never get sick to my stomach again it will be too soon! I just hate that feeling!!! We had a birthday party to attend on Saturday night as well as Sunday afternoon. It was a lot to do just being released from the hospital, but I was a champ and I attended. I was a lump on a log, but I didn't miss them! After the party on Sunday I got home and just passed out for a few hours.
When I went to the ER two Sundays ago they accessed my port, that was a bad experience and painful!!! I have NEVER cried when my port was accessed, I did that day...I just had tears rolling down my face I couldn't hold it in. I'm not sure the nurse had much experience with port access. There is cream I use to numb the area, or they have a spray which freezes the area so you don't feel it. Well this dumb nurse uses the spray then farts around for 15 minutes, of course it's not frozen by now...so I ask if she can use the spray again. Which she does...then farts around for 15 more minutes...needless to say I wasn't numb and I felt every inch of that needle! I was released from Good Sam with my port still accessed. Home Health was under the impression that my port was still accessed and the line would need to be changed out every Sunday until I wasn't on the antibiotics anymore. This is to cut down on the chances of infection. So when my second Home Health Nurse came to the house on Sunday I told her I would need the line changed out. She was very uneasy and hesitant. I asked her if she could change it she said "yes if I need to" So she takes out the line that was in, and proceeds to clean and sanitize the area. She pulls the new needle out and starts pressing around on my chest to find my port and sticks the needle in. I didn't feel anything, no pain nothing. She then tried to flush it but couldn't. She tried about 20 times to get the needle in and couldn't do it. She says she thinks its my port. I informed her I have had my port for 5 months, I have never had an issue having it accessed, flushed or even getting blood return on it. She says "hmm...I really think it's your port" UH NO LADY IT'S FREAKING YOU!!!!! So she says she needs to call her office to see what they want to do. She asked if she could use my phone so I let her. She says "nobody is answering, let me get my phone and call another number" she goes outside in which she was out there about 10 minutes and comes in to tell me, they recommend I go to the ER. So she leaves the needle sticking out of my chest and covers it with a tegaderm patch and tells me to take my antibiotics with me and they will do it all at the ER. So I am off to the ER yet again...and a little pissed off. Here is to the $140.00 dollar copay that I shouldn't have to pay since BANNER HOME CARE is more than incompetent. I get to the ER and they got me right in and I even got a nurse that had 16 years experience accessing ports. I was right at ease. She was amazing. Like everyone else at Good Sam! :) So I have a few calls into Banner Home Care to make some complaints about the care I received. I can't believe this! I am even a Banner Employee and I am getting this sort of treatment from a Banner facility. I am so ashamed right now!!! Had I gotten into an accident or something and was knocked out, and my port was accessed by the EMT's or the ER they could have blown my vein or my port right out of my chest. Thank goodness nothing like that happened. I did tell Banner Home Care I was NOT comfortable having any of their nurses coming to my home and accessing or de-accessing my port. I contacted my Oncology office and Michelle Dr. Borst's PA told me she would be more than happy to change it out for me every week. I will have a new line put in next Monday.
I was suppose to have my last round of chemo this past Monday, Tuesday and Wednesday. Since I was admitted the week prior my ID doctor said to push chemo back at least to Wednesday, Thursday and Friday. So I did. Well I went in on Wednesday and they told me based off my labs (they were drawn on Tuesday) my levels were too low. They wanted to draw my labs again Wednesday to make sure they hadn't gone up. All my levels were good to go, except for my platelets. Dr. Borst said the only way I would get treatment would be if my platelets were 90 or higher. Mine from Tuesday were 78, then when they redrew them again Wednesday they were 86!! DANG IT...So they said no go for chemo. My last round was pushed back to next Monday, Tuesday and Wednesday. This will give my body some time to heal and recover. I have high hopes my levels will be high and I will get treatment next week! Once I have my last treatment done, It's just going to be eating healthy, taking my vitamins and exercising. I have to get healthy and stay healthy! I don't want this monster coming back! :)
I should have a PET Scan in the next coming weeks. I know I will have a clean scan! :) I will keep you all posted on when that scan is and what the results are when I get them. I hope to return to work in the next month or so. I will more than likely go back part time for a few weeks to a month, until I can get my stamina back up. I am still having to take naps once a day. I get tired pretty easy. I am so looking forward to the return of a normal schedule and life. I know life will never be as it was before August 13th, 2012 but it will be as close to that normal as I can get.
I decided to stop shaving my head, I want my hair back. I miss my long dark hair so much!! I last shaved my head on December 8th, 2012. It has really come in. I would say I have about a half inch of hair now, and it's straight as can be and DARK DARK!! I keep telling Scott I can't wait until I can run my fingers through my hair, its finally at the length I can do so...well a little bit! :)
So today I am just lounging around doing nothing. Just relaxing. I am enjoying these next few days of feeling pretty good. Come Monday the vicious cycle will start all over, but this time for the last time.
Thanks for reading and supporting,