I spent the next nine days in the hospital somewhat of a guini pig being poked and prodded and just felt like a number on a chart. I can say this this hospital is as good as it gets as far as treatment of patients and their families but I still cant get over some of the crap they
put me through. To say the least they at least didn't almost destroy the port (this is the access port to protect my veins and is very convenient to take blood or deliver medications from me withoug having to find and access a good vein) it is surgically placed and usually stays in you for a year or so to give you the ability to get some tough cancer fighting drugs but if not used properly this port can be destroyed easily if the nurse doesn't know how to use it. Now we know that my right arm is off limits for blood draws or for blood pressures and my left arm now has the port so they give me these little pink bracelets like you get at a water park saying do not us arm and I'm now going to get the port accessed. The last hospital St. Lukes hospital which I went to last week took 3 days to find someone to access the port because they never saw one put into an arm instead of in the chest area and no one would chance it being that this port is smaller than the ones put in most people also god forbid they mess it up it means another surgeryfor me. When they finally came with a nurse who is registered to access this port he had no clue how to use this one and put the needle in backwards and then spun it around and couldn't figure out how to get blood return to show it was in place in the vein. We had used all my good veins in the bottom half of my left arm which is ok as long as its below the port to use for IV'S or drugs and saline. At this point they are panicking until they finally found this guy who swore to me he new how to access this thing and proceded to mess up my only hope was that it wasn't permanent so now he tries again with a huge needle that is usually used for chest ports and gets it in only to find again that no blood return yet and now I am panicking to. I am also ready to do it myself I have seen it done before like 50 times but after a third try he finally got blood yipee.Now here at MSKCC (sloan kettering) they have seen it all and within 10 minutes I had the correct needle in the arm with no pain and voila thats how it goes when you know what your doing. MSKCC starts immeiately changing my meds which is very difficult on moods and on mental thoughts and behavior so I became a raging lunatic when they refused to give me my IV pain meds and I went ballistic to the point that I actually walked out of my room with my skinny flabby ass hanging out of my robe with my IV pole in one hand and said I'm leaving this place. The nurse in the other room ran out into the hallway after me I thought she would kill me she was as mean and nasty as you can believe. She said "the only way you are leaving here is if you ard discharged" So I said great discharge me "she then said "I would love nothing more right now than to discharche you but I cant so now you get to go to a room with a 24 hour a day chaparone" so now i cant even go to the bathroom myself or pick my nose if that suits me I have a strange lady watching my every move. It was so weird every tim I would even shuffle in bed she was like where are you going what are you doing but that was my new life for the next 7 days like it or not.Oh I amost forgot I got another pretty yellow bracelet that says risk of falling down on it. Well folks dignity gone I pretty much gave in and did pretty much what I was told until one night after speaking to three doctors from the pshycology team and the chair doctor told me he would give me back my IV benedryl becaus I had such a bad a bad case of thrush in my mouth I Couldn't swallow my own saliva let alone the 10 pills I would sometimes get at a time so whatever they could give me IV they would until it all healed by the way the benedryl was for the itching I got due to the dam blood thinners they kept giving me it gave me hives all over and also because I am going through menepause and I sweat so much and then get cold and my body just itches from the dry sweat.Now that night time to go to bed and I ask for my benedryl "they said you have no orders for benedryl at all" I said not even pill form she said no also I got so crazy I made them call the doctor for my case he said no benedryl and I just couln't understand why they wouldn't give me something that would help all of us it would make me sleep so as not to keep bothering them and it would help my itching which just made me want to irritate them more so I kept pressing the call button. Well as it turns out I call 911 lol Here i am at the hospital and I call 911 to tell them that they are holding me against my will and just because I was so crazed I think I called everyone in my phone to ask them to pick me up to get out of there of course it was 2 am by now and no one said yes thank god. Next an hour goes by and I called the desk and said I want my benedryl now and the said sorry and if I call the police again they will tie me to the bed like in a psych ward. Now all this for a medication I was promised by a doctor 6 hours ago which he obviously forgot to order and funny enough If I had clothes and it wasn't freezing i could just walk down the street to a pharmacy and get over the counter. WTF does this make sense at all to anyone I sure couldn't figure it out but low and behold after calling the patient advocate she suddenly they were all so nice running in with my benedryl IV bag with big smils on there faces. Now how in the hell does a hospital like MSKCC expain this behavior I am tm the reason they get a paycheck and these nurses were mean and void of compassion I had one nurs yell at me with her finger in my face and numerous ones flat out calling me a liar. At least the next day the doctor confirmed I was not lying at all and that felt good but it was all still a struggle. The lesson here is don't mess with me or I will mess with you right back cancer or no cancer you have to be your own advocate and not let them take control of you when you know you are right.
Thursday, February 18, 2010
I have had the almost immpossible passed 3 weeks of my life.Here I thought OMG I will be finished with chemo in just a couple of days, suddenly I felt that same old feeling after staying home with my family for the weekend Nose dripping uncontrollably throat scrathchy and horse head pressure and sensitiviy to light. Here it is the week before chemo and I am all packed to go to Atlantic City for the Winter Poker Open at the Borgata and I have a nasty sinus infection again but that was not going to stop me so I brought my whole suitcase home from Mom's house just incase. So now Thursday I get my Taxol, Friday I get my neulasta shot to boost my white blood cells in my body and Saturday morning I feel a headache like I have never felt before in my life so we called 911 a second time as you remember the first time was chrismas day. They bundled me up and took me to St. Lukes hospital in Newburgh NY. I spent five miserable days there. Firstly I was going to Atlantic City with my sister and my bff and all our kids to have a great time and now they are telling me I need to be admitted. I was steaming mad and tried everything to convince them I am O.K and can leave the hospital now.well the hospital now puts me on a prison bench for a bed (not actually) a prison bed would have been more comfortable than this one. by the way they admitted me becaus my white cell count was 32000 and normal is 6000-8000. even though I explained that this was due to the neulasta shot they still didn't want to take any chances with me having an infection in my body so they gave me dilauted for the pain and heavy doses of iv antibiotics and antivirals and for some ungodly reason they gave me blood thinners in my belly sub cutainiously (just under the skin)and gave me heavy narcotics to keep me out of pain. my head hurt more than childbirth to me. Well I fell into such a deep sleep and when i woke up in the middle of the night In so much pain not just in my head but in my hip where ever since I had my car accident I have had bump like a gumball size in my flesh of my upper thigh to my hip approximately. They then gave me more narcotics to knock me out again for about 4 more hours until about 7am. The nurses came in as the usually do took my vitals took some blood and came back in about 11am and said my Hemoglobin went down to 6.7 normal is about 11 or more so they were very concerned about my bleeding inside either my brain or my body so i went for every test under the sun all the time complaining about my hip which they said if its been 6 years its probably nothing at all.Well when all the tests came back negative my designated neurologist came back into the room and I showed him my hip he realized I was probably bleeding into my hip because it was three times the size as when i got there and red hot and horribly sensitive and sore to the touch.So now they give me a blood transfusuion for the anemia 2 units of and the ct scan for my hip. It came back showing a mass that is infiltrating the tissuea around it non suspicious looking but should be removed or biopsied since its now 3 centimeters and very painful if i lay on that side. Well i did miss my poker game and thanks to newburgh st Lukes screwing up so badly in this one I am not angry its overbut its just one more fun thing I get to miss while fighting for my life. let mr tell you those dam nurses were so glad to see me leave I think I heard them dancing in the hall from the elevator. I think I should not have been released yet because the night before I got kicked out my throat was so sore and swollen I couldn't eat or drink anythg it hurt me too much I begged the nurse to let me stay one more night because I knew I was getting another bad sinus infection and I only weigh 99lbs I was affraid my body couldn't handle another infection especially after giving me IV antibiotics called the big guns (meaning the strongest ones they have) for five days and yet still getting sick. Just unbelievable that a hosspital can discharge a patient in this condition. The very next day I went to my ear nose and throat doctor to figure out what we can do for my throat which has now blown into a horriffic sinus infection and caugh. Her and my oncologists spoke on the phone and decided not to give me the levequin again I should just wait it out and see. That night i had to call her back I was really sick and it was Tuesday and the only way to get my last chemo on Thursday is if I am on antibiotics for and on the mend so she did she put me bsck on levequin. I took it at about 8:30pm and at 11:30 i notice my right hand is shaking uncontrolably i couldnt even hold a cup of water and then when my feet started to tremble i screame Mom come help me im affraid i cant stop shakin on my right side. I think she took 2 steps and was in my room faster than i finished my sentence. For some odd reason we called my oncologist in westchester instead of 911 two geniuses she basically why the hell are you calling me call 911. Althou in a much nicer way she loves me but I annoy her horriblly because I call her for every little thing. Anyway we sat in the emergency room at Good Sam Hospital for about 11 hours. Brain scans blood draws and ct scans all done that nigh which turned into that day and that was supposed to be chemo day. I was so affraid and tired I just went home and made my appointmens for my ct scan of my brain but this time with dye and at a mmsk(memorial Sloan Kettering) affiliated hospital. As mom and I are in the waiting area at the hospital at Phelps Memorial at Sleepy Hollow I start to notice my tremmors on my hand and right leg are getting worse and now the other leg is starting to shake. Now I've noted thatthe tv was on a spanish station and wante to change the channel so i got up and the tv was mounted on the ceiling so when I looked up at it i saw a million flashes of light and hurried back to my seat. Mom noticed the look on my face was fear and now they gave me forms to fill out and I couldn't write either. I was so scared at this point I got up to take my down coat off so as not to drown people in the waiting room with the sweat from my hot flash and put in on the hanger. As I got up to put my coat on the coat rack i became completely disoriented and my legs were buckling as I walked back to my seat and I said Mom please help me something is wrong with me and then my head started to shake like a bobble head doll. My entire body was trembling, jerking and my head was constant moving like Micjael J. Fox. I have never been so affraid in my like and im prety sure Moms as well it was terrifying. The nurse in the radiology room took charge immediately and brought me into another room, took my vitals and calmed me down and they got me on a stretcher and took me to the ER. They released me after stabalizing me to go straight to the main hospital in NYC Sloan Kettering and both my parents went with me. I spent the next 9 days in the hospital and I will blog the rest of the story later so stay tuned.
Posted by Nicole Rowe at 8:12 AM