Welcome to 7 EAST!!

The adventure continues....So I guess its pretty safe to say that I still haven't wiped the smile off my face since last night. I was really actually looking forward to returning to the Stem Cell Suite today to reconnect with all my friends and caregivers. These wonderful people become an extension of your family in no time.
Del and I returned to the hospital today for what we are hoping is one of the last times. I almost cannot believe it. I am now Day+15. An easy day by this past week's standard.
Speaking of last week, I guess it's only fair to continue where I left off last night.(see previous blog)...

Although my little "detour" is well behind me now in terms of time, it is still something I must think about everyday because I still have so much time ahead of me in terms of waiting for my new blood to mature enough to protect me from bacteria (or anything else for that matter) before I can resume my "life".
When we left off yesterday, I was finally admitted to the hospital and they took us up to 7 East, the hematology/oncology floor. We were ushered into the room by Molly who would be my nurse throughout the night. I could not have been in more capable hands (by the way Mayo's...she hails from Cincinnati!) I was absolutely exhausted at this point and wanted to do nothing more than just go to sleep.
I have not spent many nights in a hospital other than when I had my children so I really don't know what to expect....other than sleep. Sleep is after all so important to people, especially sick people. It allows the body to rest and is crucial to healing. However, someone forgot to tell this to the folks on 7 East @ BU Medical Center!  After getting settled in my room, Del returned to the apartment and Fred attempted  to settle in to a recliner in the middle of my room. It would not be for long. As my fever continued to come and go all night, the wonderful nursing staff monitored my vitals, cultured my blood, (I tried to tell them I had plenty of culcha...but  they did it anyway!) and made me as comfortable as possible. In other words, they took wonderful care of me...but sleep was elusive. One thing became very clear to me though. This is exactly why BU Medical Center's Stem Cell Program has been so successful when done "outpatient ". A lot of folks were surprised that I would not be hospitalized for this whole treatment program. BU has always maintained that patients recover faster when treated outpatient, rather than having to stay in the hospital for a couple of weeks. They have years of research to document this. Makes perfect sense now! The hospital is always right here if you need it, (as I did) but you are much better off going back to your own place each night to rest.

Monday, Day+11 came very quickly and the monitoring, culturing ....and fevers continued. I was able to catch a few naps throughout the day which was refreshing. Doctors still couldn't find the source of the fevers but put me on a very intense regime of antibiotics in an attempt to "stem" any infections. Now in case you didn't already know...besides a research mega center, BU Medical Center (also called Boston Medical Center) is a teaching institution. Fabulous right?? Absolutely, except when you open your eyes in the morning, and you are looking into the eager, stethoscope-ready  faces of 20 residents, medical students and fellows...and you haven't even done your teeth!! I wanted to crawl under the covers until they all went away!
The best part of my first day came shortly thereafter when a gem named "Teresa" waltzed into my room. Teresa introduced herself  and announced she was my "hospitality assistant" for the day.! I thought WOW, I could get used to this! Teresa's job was to keep me fed and nourished during my stay. She would make me anything I wanted as long as I was there...neutropenic diet of course. Unfortunately for me, I really had no appetite and everything tasted like cardboard or metal. Plus my fluid retention was getting worse by the hour so I was very uncomfortable. Scrambled eggs were (and are) becoming my best friend.

Tuesday, Day +12, the fun continued, same routine, different day. I was very weak, very warm, very swollen, and now covered from head to toe in a lovely rash!! Overnight my body began to develop an allergic reaction to the antibiotics they gave me. And fortunately for you...that is the only reaction that I am able to blog about...if you know what I mean! (TMI- too much info!) On top of all of the above....as my Hematologist, Dr. Seldin was examining me first thing that morning...he very nicely says to me..."you know your hair is falling out, right?" And sure enough...there it  was...all over my pillow...you were right, Anthony...it was ALL coming out! (While I was able to hang on to my hair than longer than I originally expected, I was ready for this side effect and it was the least of my worries! Nothing a pretty head scarf can't handle) But my numbers were not improving as fast as they wanted so they decided very late in the day to give me a boost with some red blood cells.  I attempted to sleep...with no more answers than when the day started. To say this was testing my patience would be an understatement! LOL! I felt like I was going backward instead of forward...(Can I please go home???)
 

Wednesday, Day+13, Today was literally a breath of fresh air. Besides the Starbucks coffee that Fred brought me at 7 AM, I awoke today with my body feeling the boost of fresh oxygen from the blood they gave me throughout the night. However the fevers continued...and so did the testing. (We are here to find answers after all)  Now I am well aware that when you "culture" blood,  you have to give it time to grow, but here I was day after day, laying in bed, getting more bloated (I never said "super-size me"!!), redder, and increasingly frustrated. At 5o'clock I decided to do some laps around 7 East (complete with my mask, my ever-so-lovely hospital johnny and Del by my side. We got to lap 18 and I decided to try to make a getaway from the ward.  When I felt that Del's attention was diverted, I made a bee-line for the elevators, and guess who is walking towards me...Fred! Bagged! They dragged me back to my room and put me back in bed. Can't blame a girl for trying! 

Thursday, Day +14 We began the day much the same as the day before...including the Starbucks Coffee! I was really feeling pretty good and had slept a whole 4 hours during the night!When the doctors came in for rounds I was very hopeful that they would see things my way this time. You see...not everyone has an entourage like mine but I was determined to convince them that we could manage this whole fever thing on an "outpatient" basis and that lying around all day in a hospital with lots of really sick people was not contributing to my progress. Needless to say, I presented my case to them and thankfully they agreed with ME. At this point since all of my blood cultures were coming back negative, they decided that the infection causing the fevers must be viral not bacterial,and that this pattern could continue for several weeks. (!!) They also took into consideration the fact that I had the entourage of dreams (Del & Fred are the talk of the stem cell suite- if only everyone could have caregivers like this, it would make their jobs so much easier.) So at 10:30AM  they told me I would be discharged today with strict instructions for fever and rash control, etc. So Fred and I set about pulling all of our belongings together to get ready to leave...I am ecstatic! Around 11:30 AM, we call Del, who is now enjoying a well-deserved day off: power walking the Esplanade, shopping and reading to let her know that we will be returning to the apartment at some point, and that we were waiting for them to process the paperwork. Now remember...I already told you I haven't spent much time in a hospital...so when they said they had to do some paperwork...I'm thinking "discharge instructions". By 2:30 PM I was starting to get a little worried. They kept coming in to do my vitals. Mind you...Me, my port and I were sitting on the side of the bed, fully dressed to go, with a pen in my hand. (Just how much paperwork is involved here??) Fred was trying desperately to keep me calm, but I was getting a little nervous that they had changed their minds and that they had found something in the latest blood draw. Besides, my nurse Kim had made the comment that morning.... "I hope its before 3 o'clock". How long can this go on you ask??? At 5:00 PM I am beside myself and no one had come in to let us know anything. Kim continued to tell us that the doctor's paperwork needed to be completed. At 5:30 PM...7 hours after they have told me I would be leaving, Kim finally came in with the "paperwork". I could have cared less what was on those pages! I signed the last page and Fred and I practically ran down the hall for the elevators. Free at last...free at last! (a glass of wine would have come in handy right about then) But I had to settle with whining instead !
Now before I end this, I must tell you that my care on 7 East was exceptional. The nursing staff, aides, hospitality assistants, etc. were truly caring and professional. They made my stay (hopefully my last!) the most comforting I could have possibly have asked for and I am lucky they were there for me.
As Paul Harvey always said..."So now you know the rest of the story...".
I feel like I am finally moving forward....excited to be back at the Stem Cell Suite and definitely ready to finish this treatment program. I miss my kids terribly and cannot wait to move back to Easton.
Del and I had a wonderful reunion on Friday, Day+15 with Jane, Jim, Mary Kate, Teresa and of course, Anthony, and left with improved blood counts in hand, Rx instructions for the weekend, and great hope for Monday's appointment.

I know this chapter of the blog is long, but I wanted you to know that all is well...I am strong and ready for the next phase. I could not have come this far without all of you! The cards, letters, prayers, emails, and blog comments keep us energized and laughing. It is so comforting to know I am not going through this alone...that you are along for the ride!

Have a great weekend!
Love, Cheryl