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Dan's SCT journal


Dan in NJ stem cell transplant journal

1/5/12- Day One at Hackensack University Medical Center, Hackensack, NJ (Out-patient)

Had my port implanted today. It’s a triple lumen catheter. The ‘surgery’ itself is no big deal-it’s an outpatient procedure that takes only about 20 minutes- but the registration beforehand, and the recovery from anesthesia afterwards makes for a 2-3 hour hospital stay. Even though I’ve had a port put in before- there is still a fair amount of stress that I was experiencing. My anxiety was not helped any by the fact that the surgeon kept us waiting for an hour and a half. When she finally arrived-she didn’t even apologize for keeping us waiting-which I have to say did not sit well with me. So far I must admit I have had very little confidence in the hospital in terms of what I would call “the little things”. Despite the fact that this hospital is rated as one of the ‘top 50 best’ cancer centers in the U.S. - I am discovering that they are not the best when it comes to the all important administrative/customer service stuff. There have been several occasions where they have promised to return phone calls and/or schedule tests- and have not followed through. Today was the 2nd time that a Doctor has kept me waiting for more than an hour…not a good sign especially considering that I haven’t even been officially admitted to the hospital yet. I realize that this will sometimes happen in a large/busy hospital- but it does not create a lot of ‘positive vibes’ for the patient. Hopefully this situation will improve as time goes on. I spoke with the Social Worker about this today and she said she would do whatever she could to make things go more smoothly. I guess only time will tell.  Tomorrow at noon I’ll be admitted to the hospital for what they are calling Day - 6…..my 1st full day of high dose chemo (BEAM). Hopefully things will go smoother than today. My worry now is that if for any reason there are unexpected delays in the next week- my transplant day presently scheduled for Jan. 12th (Day Zero) will be backed out to Friday the 13th. Being extremely superstitious I am seriously hoping that this will not be the case!  

1/6/12-Day 2 @HUMC (transplant day minus 6)

I checked into my room today at about noon. The registration was surprisingly easy- given all the ‘hiccups’ with this hospital up until now. The room is very nice- extremely clean and modern-and so far all of the people I have met have been great. They didn’t waste any time in getting me hooked up to the I.V. machine and I started getting fluids within 20-30 minutes of my arrival. The transplant Doc came to pay me a visit and we discussed the plan for the next few days. Chemo starts tonight and I will have another 3-hour bag tomorrow morning. Pre-meds have all been started and one of the nurses gave me the run-down on the various mouth washes and eye drops that I need to take. Just a few general observations…. The food seems pretty good- compared to Overlook hospital in Summit where I was this past Oct. and Nov. Rather than bringing meals at set times- you get to order ‘room service’ here whenever you want. I expect to take advantage of this for at least a few days while I still have a decent appetite. The other nice thing about this hospital is that they do not expect patients here to wear those god-awful gowns. It would seem that any clothing is fine to wear here as long as you are comfortable. This for me is a good thing since I always feel less ‘sick’ when I’m wearing my own clothing. So generally speaking Day One has been relatively easy. I know that this will soon change-but I’m trying not to think too much about that yet. Tomorrow (Sat.) my wife and son will be visiting- so hopefully they will help keep me positive.  

1/7/12- Day 3-HUMC (-5)

I’m feeling pretty good (as Larry David would say ‘pretty pretty good’) I woke up once or twice during the night. As much as I tried to negotiate with the nurses to NOT do my ‘vitals’ at 2 or3 a.m. …I didn’t succeed in getting my way. They say they need the test results for the day shift nurses by 7 am.  Hard to believe it takes 5 hours to transfer and read a chart with my blood pressure and blood counts on it….??? Personally I think they just like waking us up at ridiculous times since they themselves have to be here all night anyway and run out of stuff to do. I caught one of them reading magazines at the desk when I walked the floor last night before going to bed. I guess even their jobs get boring at times. Anything to break the monotony….. The day nurse just started me on a new bag of chemo. I asked her the usual questions and got the usual answers. I always want to know what the likely side effects are and they invariably always answer me by saying ‘it depends….everyone is different’. I think this is something that all Doctors and Nurses are taught to say in medical school now. It’s called ‘Keep it Vague 101’. I know that too much information can sometimes be a bad thing- but I would  just like it if we all spoke the same language at  times instead of always getting ‘hospital talk’. Expecting visitors in a short while and my machine is beeping so will end this entry here for now.

1/8/12- Day 3- HUMC (-4)

 It’s been a mostly uneventful day. I woke up very early (5am) after only getting 2-3 hours of sleep. They (the nurses) usually come at 2am to take “VITALS” and then again at 3:30-4:00 to take blood. I was able to convince them to do both at 2 am instead. It means I have to stay up pretty late- or go to sleep earlier and be woken not ONCE but TWICE (assuming I can fall back to sleep. Seeing how I don’t usually go to bed before midnight-I’ve decided to stay up later. Sleeping attached to a machine and a having a port in my chest isn’t easy. It’s Sunday and there appear to be fewer staff on call today. I will say however that they are very responsive and punctual when called. No long delays when machine starts beeping. Still I would love it if they showed me a few tricks on what to do when the error message says something simple like “air in line”. I’ve asked for a lesson or two but they won’t further my machine education in anyway. Maybe it’s a good thing that they don’t show me stuff like that. I’d probably just be pushing the wrong buttons anyway. Even the best and most experienced nurses will occasionally not be able to figure out the problem of getting the drip to drip. I’m hoping that there are no delays w/ chemo between now and transplant day next Thursday because if for any reason I get backed up just one day-it would mean that the transplant would happen on Friday the 13th. As superstitious as I am…this would bother me….I think. So this is just the 3rd day here and I have to say I’m already bored. Have had some visitors-but other than one patient I met yesterday-have had very little social interaction overall. This hospital has quickly gone from feeling like a hotel to a prison. I would equate it to a minimum security facility-but that would be somewhat inaccurate since in prison you at least get to go outside to exercise. Dinner just arrived …so that’s all for now and probably until tomorrow.

1/9/12- Day 4 @ HUMC (-3)

 I FINALLY got a good night’s sleep. Maybe it had something to do with the fact that I asked the evening nurse if it would be possible to speed things up for a few hours- so that I can get to bed early. All I know is that when I woke up in the morning the day nurse discovered that there was a ‘loose’ syringe still stuck in my port. Maybe asking her to rush wasn’t as good an idea as I originally thought?  I can’t help but be reminded of a statistic I once heard. The #1 killer in America is Heart Disease…#2 is Cancer….and #3 is hospitals and Doctors! YIKES!!! I’m still feeling okay physically. They were concerned about my low blood pressure this morning so they dropped the dosage of one of the pre-med drugs (not sure which one). Also, since kidney failure is always a possibility with chemo they now have put me on Lasix (?)-- a diuretic.  I never would have thought it possible to urinate as many times as I have in the past 24 hours-but I guess that’s the price one pays for ‘the cure’. Oh well… if this were to be the worst of it…I’d be a happy camper!! I’m still hoping to be released on Wed. to go to the apartment they have me booked at across the street from here.  The transplant Doc said I am doing well. All systems ‘go’. Once again the worst of it has been the boredom-but something tells me that’s about to change.

1/10 thru 1/13/--Days 5-8 @ HUMC (transplant dates….-2, -1, 0, + 1, +2,)

 Okay…so I missed a few days keeping up with this journal. Not because I’ve been feeling sick- but fortunately just the opposite and so have been keeping busier with phone calls, e-mails, reading, visits, etc. Since moving to the “inpatient” unit things have been going pretty well. The set-up here apparently is VERY different from most other transplant centers. Hackensack Univ. Hospital believes that after the 1st week of chemo in the hospital that it is beneficial to resume the treatment in a special center near the main hospital that is dedicated to ‘out-patients’. I’m told that they were one of the first hospitals in the country to do it this way. Apparently Sloane Kettering has now fashioned their model around HUMC’s.  I must admit I was a little bit anxious about this at first but it seems to work. The apartment they have arranged for me is very nice and TOTALLY air controlled and sterilized. My wife gets to stay with me and she drops me off at the hospital before going to work and picks me up after work. What’s particularly good about this arrangement in my opinion is that it forces me to get up every day…take a shower, get dressed and basically get into a routine. All transplant patients obviously get their own rooms, which are not as large as the hospital-but the level of care here is actually much better since there are only 3 patients in this area that the nurses are responsible for. Overall (other than the lingering boredom at times) - it seems to work well. So here I now am in my 2nd day post transplant and for the most part feeling okay w/ the exception of a little nausea- which I hope will be kept under control w/ drugs.  The transplant itself was (as everyone said it would be) a little bit “anti-climatic”. It was just like a blood transfusion and the whole thing took just a few hours from start to finish. The transplant Doc is there when it happens-but truthfully the procedure could probably have been done by one of the nurses alone. Anyway glad it’s over. Happy too that it didn’t happen on Friday the 3th! Today being Sat. the out-patient building is closed-so it’s a good day to have visitors because we can sit in the main lobby w/ them. I’m expecting some company- just hope I’m feeling well enough to meet with them when they arrive Other than that-there’s not much else to report. Just saw the Doc and he says everything seems okay. My really “bad days” (if I get them) will probably be +3 thru +5- so  I guess what I’m feeling now and what I will feel by the end of the day-will be the key. More later….assuming I’m feeling well enough to write. THINK POSITIVE DAN!!!

1/15/12- Day 9 @HUMC…Day +3

 Well pretty much as expected it hit me today. Felt sick last night w/ nausea, stomach upset and later diarrhea. I had very little sleep last night and was feeling like a zombie this morning. Somehow I got dressed and Ros drove me to the out-patient center. They hydrated me and gave me something for the ‘runs’ (Imodium’?) I ate some plain toast and oatmeal and felt a little better-but my stool was ‘bloody’-so they gave me some platelets. Most of the day I felt lethargic and drained and the nausea kept coming in waves. After several more loose and ‘bloody’ bowel movements the decision was made to keep me overnight in the main hospital. They are intending to give me more platelets and release me back to the out-patient wing tomorrow morning. I’m awaiting a light meal-which I hope I can handle and then would like to have an early evening. Doc says this is not unusual as my counts continue to drop.  Right now just wanting this whole business to be over- but still have a week to go. We’ll just have to take it day by day.  

1/16/12-Day 10 @HUMC......Day +4

 I’m feeling 100% better after a double dose of new platelets last night and a GOOD night’s sleep. Yesterday was a real downer. Obviously the low point so far. Today they transferred me back to the Day unit and I feel as good as ever. My counts are still going down-so if more ‘bad stuff’ is to happen it may still happen in the next few days. Right now-I’m just enjoying the moment. Ros is not working today since it’s a holiday (Martin Luther King Day) so will probably be getting a visit sometime later. Haven’t heard much from the boys lately-but that’s pretty much par for the course. They call regularly- just more on their schedule than mine. There’s not much else to report for now….so I’m just counting the days. I can’t wait for this to be over with.

1/18/2012-Days 11 and 12 @HUMC….transplant Days + 5 and +6

 I seem to have literally lost a day or two here in the past 36 hours since it’s been about that long since I’ve felt at all “normal” Monday Night I felt really sick in the apt. and Ros had to somehow get me into the oncology ‘emergency’’ dept. I was experiencing VERY intense stomach pains, some nausea and a high fever (100.5) when I got to the hospital at around 10 pm that evening, I nearly fainted in the apt. and so she called the emergency # and they said to bring me right in. My Doctor had apparently been called but when I arrived on the 5th Floor (General Oncology) –they didn’t, seem to be expecting me- because they didn’t have my charts, they didn’t have a room assignment and they certainly did not seem to have any ‘sense of urgency’ about my situation . My pain level by now was much worse and they put me in a ‘dinky’ little room and kept me waiting at least an hour for the pain meds to arrive.  I was told later there was some kind of problem with the pharmacy, that the nursing staff was short-handed and that there were no beds in the transplant unit available immediately. Needless to say this is NOT what I wanted to hear at that particular time. They didn’t take my “vitals” for a good hour after I arrived….which was also extremely distressing. Yesterday and this morning were about the worst I’ve felt so far- but I’m told that it’s pretty much “par’ for the course. I’m in days 3 thru 6 post transplant now and my counts are still dropping. The only other times in my life that I can say I felt as sick as this is when I had a kidney stone 15 years ago. Also on vacation in Mexico w/ “Montezuma’s revenge”. Both times (now all three) I think I might have said at the worst point in the illness that “I’d rather be dead’. Today I feel a little better- but not entirely ‘out of the woods’. My heartbeat and blood pressure have been low so they have been giving me platelets and transfusions. Occasionally I feel nauseous-but luckily have not yet vomited. I have had diarrhea off and on for 2 days now. No signs of mouth sores. I’m very sleepy most of the time and have VERY little appetite. Other than some juice, and an Ensure (a soy milk-shake product) and a cracker or two I haven’t eaten anything substantial since breakfast on Monday. I’ve been told not to ‘force it’ which is fine w/ me. So these are two days that I’m sure I’ll be blocking out when this is all over. I’ll probably just remember them as the two worst days of my transplant. Feeling very sleepy now…so will probably just end this entry here. More news later….


 I guess I pretty much “fell off the wagon” the final week in the hospital- so this journal entry is being written after my release. What I remember mostly about the final days is that a good deal of the time I was pretty sick w/ nausea and diarrhea- but no vomiting. On the day I was released I was elated to be leaving- but worried that I would be as sick at home as I would have been had I stayed in the hospital….and that pretty much was the case. Luckily Ros was there for me every step of the way. I don’t know what I would have done without her. The first two weeks after coming home I had to deal with MAJOR fatigue. I don’t think I ever experienced it to this degree before. It was difficult getting out of bed and just the easiest of tasks wore me out. This is being written two months after leaving the hospital and I’m still experiencing fatigue and nausea. It’s not as bad as it was- but it still has kept me from doing a lot of the things that I would have expected to be doing by now-such as returning to work. I’ve been on medical leave since last October and although one part of me would like to go back to work-another part is saying that I’m still not ready. So I guess you can say I’m just taking it ‘day by day’ for now. I’m just happy to have the transplant behind me.  Overall I would have to say the whole procedure came off about as expected….some bad days….some good days and many ‘in-between’ days-but DEFINITELY an experience that I will not soon forget. Despite having met many wonderful people during my time in the hospital and receiving the support of family and friends before, during and after the transplant-it’s just not something that I would ever want to go through again. Hopefully I will not need to.