Chronicling my vacation on the Charles-- I better have a room with a view! For those who don't know I will be spending month in Mass General Hospital undergoing a Bone Marrow Transplant with my sister, Sally Ann, as my donor. This website is to help all my friends and family keep up with what I'm going through. I'll try and update as much as possible but I'm making no promises!
Text
Going Home This time for good!
Well my steroids and I are heading to Foxboro. I guess my job is to keep in shape with them for Thanksgining and I can be the Six Flags Blimb. No Hair. More Flags More Fun. Got that down pat.
I had a long talk with the Physicians Assistant Mark today Host /Graft is something that will stay with me for a long time maybe my lifetime. I will have to be more careful then the normal bear about picking up infections but it can not run my life as you all know I do walk the edge at times so this will be different for me. Life changes are good and I will comply. now to get the bathrooms cleaned magically I neeed to work on that one.
Text
The Kennedy’s lent me their room
Well I am back in the hospital as of yesterday. There were no room at the Bone marrow floor so I am up on PHILIPS 20 which is the fancy dancy section of the hopital where the big wigs go. Hardwood floors and furniture nice but still a hospital. I am being treated for GraftV/host. strong steroids are helping so I can not complain. They say it should only be a few days in here. After they work you need to get weened from them.
I have not been near the computer for days I think since i went home Saturday.So if anyone has any news fill me in I need stimulatin! Gettting tired of morning tv and the sox forget MJ. Please let him RIP where they let the children sleep with the icons.
If Anyone hears of any jobs Emily is still looking to fill in some hours. She would make a great nanny
Love to all
Text
Back in Boston now Cityside
Just my luck I am not on the Charles for the fourth. But my nurses have already told me where I can go to see them. Believe it or not this is not a reservation for the freworks my body has been having it’s own display for a few days. my Dr. raised hell with me today for not calling but I tought I was just having a couple of down days. Dr MacAfee thinks it is graft/ host and I don’t. I have made so many wrong calls you’d think I would turn in my degree. In the morning I am going to have 2 procedures one from the top one from the bottom and they are going to take pieces to biopsy of my intestines. that should tell them what is going on. I know DR. has a few more things planned but at this point I am taking thing 1 at a time..
Pass it on the blog is back on and write to me . It is very boring here.
Love to you all
Karen
Text
Last dance on the Charles
My hat and I got up tonight and danced like no one was watching.I know the weather stinks but I still get beautiful lights off the buildings..Leaving here I have one way to go and that is up.I wish I could tell you how slow I am but you would not remember the folks I am talking about so picture your youth and the little italian lady who’s ancles are coming over her shoes. She never complains but used to do all her erands on foot Ours was Mrs. Belmonte and Mrs Rogers. I guess years later I could put Nana in that group. Today we do not have to live like that with PT and attitude.
Another thing I must know it is time to go home i am ravaged. 18 pounds up from the liquids has come off now it is the pre steroids to fight with. I am going to dream tonight of Peanut butter crackers and I am not to sure about popcorn. I have lost my tastse for soda .Thank God. A good movie and popcorn girls! Sounds like heaven /home to me.
Oh and Monday lunches have to be at my place for anyone intersted.they must miss us at Aj’s huh Marianne. One of the nurses and I talked about hummus the tahinni would have to be reoasted Hmmmmm I wonder if that is a possibility. Must check with the excperts. Mybe we can have a hummus day and make some up.
Sccrabble anyone on my deck. Don’t forget an intimate day at the pool gail. Shit if I PUT ON A BATHING SUIT IT AT BEST BE MORE THEN INTINMATE
Beth you may get your wish as yet for the Newcomers but my first action definately would be to change the name to” Foxboro Melanoma Cover up Club.” Or we could just call it “‘Renew” What ever it’s name it is a terriffic club abd I am proud to be a part of such woderful people.
well it is late and time to sleep. I hope I get to sleep I am so excited to have My 3 stooges hanging around me greg making me repeat stupid rap but still being my velcro kid , Emily her up and downs but her maturity showing daily. She is a wonderful young woman who I am so proud of. Keep going ! Joe god bless him if it can’t get any tougher for him .I feel so bad if any one here’s of a simple job a couple housr a week just for his confidence let us know. Me I am on my way back up Watch this!!!!!!!!!!
Now I have to go home nd keep all the hst / graft stuff at bay I am going to do my best I have loads of Med and loads of good feelings. Thanks Everyone
love Karen
ps I do not think I will drop the blog because of people out of state.
Text
I”M COMING HOME!!!!!
Pretty damn good I would say! I am so excited as much as I love my million dollar room .Home is where I want to be. I am being switched over to oral meds to make it easier and to be honest they said I could go tomorrow but my family needs time.
SO CALLING ALL GIRLFRIENDS ………… AGAIN
I was kind of hoping that a group could get together a bunch of Womanfor Friday night and kick it off in 2 hours rather then 1 or 2 and it may take 5 or 6 hours. Joe is going to wash the rug in the den today I hope and I will give the kids a chore of substance. I know Beth Costa and Marianne are willing to go could you please leave me a phone message 508-534-9586. I feel as I am always calling on you guys but you know I have no family and when and if the tables turn I would be there for you . Thanks so much .I love you all.
Karen
Text
Melancholy on the Charles
Hi All
I guess being locked up for 31/2 weeks any one would feel like this why I want to get home to my tv that doesn’t work any better then the tv here and I want my own bed ,soup,soup,soup.kids fighting and husband snoring
They are talking about this weekend so I need to round up my cleaning crew for the tough stuff two teenagers and ahusband don’t see. THose of you that have offered I would love the help. I know I have the best friends in the world and you have all told me how i deerve you as a friend but it really sucks to have no family.Sally has been great but she can’t run home on my beck and call.
I walked around the corridors today and did 13 stairs I am going to use a cane for stability but I also am going to get a higher dose for the nuropathy for at home . what they have already done is a miracle and if this is all the relief i get that is ok because at least i can walk in my house. Girls we’ll just have to find a cool go cart or wheelchair for our trips out doors
Life in here has been as good as it could be. My nurses and I am only metioning the primaries have been during the day Anne has been traveling alot during my stay but she did help with the transplant Julia a dream from the past she has been here berore in the victorian ages she is sweet but with a very strong command of her patients room she is loving and kind and fun and Leslie has been great she is on the bell before everyone else she is buying a condo this week and does not have the time to move into it, Dana on weekends dana is the one after 4 days set out the troops on my sell phone .Jessica, I beliece saved me life the other night what a professional she took right over did what she knew was right jently stepping on toes that feakly should not have bee there she was a master of the art of that and boy did I appreciate it. on nights with my good old friend Linda brown,we have party time Linda is good people she loves her work but i think she loves the people more They have all been terrific
Not to mention my good ole stand bys Kathleen who comes daily to visit and Stephanie my new found friend who is 3 rd year harvard medical student who took liking to me and i like her as much
Blessed Blessed Blessed
when I let the other stuff get me down I give it ti God nad it is not ro hard to swallow
Keep the prayers coming I HEAR THEM
Text
Very rough night
saturday when I got up I wasn’t feeling to good I thought I was just tired from all my company. As the day moved on my body was achey and my back was really killing me so I got some tyelnol and heating pads.If you know me you know how fearful I am to get addicted to stronger stuff well he night went on and I had a headache to beat the band but boy was I thrilled that was my only day without company. Sunday Morning I felt shot of breath headache.piggly wiggly toes and hand and was a mess. Em and Joe came in and I got thr chills And was feeling lousy I did not want them to waiste a visit when i was sick
I started to lose my breath and got very woozy. THank God I had the right nurse in at the time Melissa did things I never wanted someone to have to do for me. I was a mess I had a fever and the sweets to beat. My lungs got overfilled with all the liquids I was on and Melisa shut down all my liquid put me on assix and a steroid. After all I have gained 18 pounds since the transplant. So many times I have waited for my strings on the iv go and out the window I would go . Feet first is my guess.Welli can not tell you how bad the night got I had interns that don.t know shit telling a very in command nurse what to do so my on call Dr arrives at 3 where I had my worse episodes. It stopped at 6 and when I woke bake up at 8 I felt so much better.
Dr Spitzer thought in the morning that it was some weirl name lung episode but after all the testing came back it definately showed Host /graft disease. The good part is my worst episode may be over Hurray!
I feel great tonight just hoping for some sleep tonight. I have already tried and failed.
Guess it is time for drugs!
Text
Comments Enabled!
I finally figured out how to enable comments! To leave a comment click the post you want to comment on. Then at the bottom of the post there will be a comment box. Hopefully that makes communication a little easier.
Emily
Text
Did you know that lamenated hats are the big thing these days
Hi to all.
When I miss a day it is ussually because I am not up to par to write this weekend 1/2 of that is not so. I had the best day in the hospital after having the liver ultrasound which turnd up fine. Jeannie Hudsun and Ellen Gagliardii came to visit. I f any of you know these two old friends of mine would understand how much laughter we had in the room then I was blessed with Brianna and Ken coming in . THe 5 of us really had a lot of laughs. At 6:30 came the enterage from Foxboro so Jean and Ellen left Like soldiers Brianna and Ken then put up with our shenanigans.We had a ball! Beth made me a mood hat because I am bald. It is a 4 inch round circle with a piece of velcro in front now the funny pat is I can change I have a red sox emblem for when I watch the games I have a frog for when i feel like jumping out os my skin lightening bolts for when I am angry, an Umbrella for when I want my shower Pretty flowers for when I feel cute, a sail boat when I want to go for a ride on the Charles,an origional Foxboro founders day hat with the sunglasses that I wore all day yesterday.Last but not least a mortar boardfor whe I get out of hear and a heart with a white ribbon for when i want to have sex. Tell me that’s not a hoot . Well Brianna and Ken left a little after 8 . I was so blessed to have Connie McLaughlin , Marianne, and Paula Dailey along with Beth to stay till 10:30. I felt bad for the patient next door to find out he can’t hear a thing. What a sad thing for him he did not get a few jokes
Now Yesterday I stayed in bed recuperating and feeling a bit punk..
My platlets are 24 upfrom Friday white blood count is low0.5 as is anc is 20 and hermaticrit is 27 today, I am getting more plateletts and magnesium today.I have to keep all my nurse friends happy.
Thank you everyone for coming in It helpedgive Joe and Emily and Greg a break . And to all that have brought food to them thankyou so much !
Love to all Karen
Text
Hair Today Gone Tomorrow
Heh heh.
This is Emily. We just finished up with my mom’s hair. All of us did a little. I cut her hair down, Greg shaved it into a nice mohawk and my dad finished it up.
She’s one of the few women who looks good bald ;-)
Page 1 of 4
