Saturday, July 9, 2011

Day four

Today was the day that the effects of the chemo are showing up.  I don't know why, I guess I was getting comfortable with how he was feeling the past couple of days and was kinda surprised that he was feeling so poorly.  But, it's to be expected.  Even with the meds, he's not feeling well at all and with that the appetite has left him.  He had to force himself to eat half a grilled cheese and a cup of tomato soup.  I brought the kids with me today.  We brought Ben along with the girls into the nurses area of the floor; Andy was in a mask and gloves so that he could see Ben in particular.  Ben is just too young to understand the need for a mask and gloves and then keep them on.  So, he had a few words and some hugs for Daddy and then it was off to the waiting room with Lauren.  Jenny came into Andy's room with me; showed her the procedure...squirting some Purell on the hands, putting the gloves on and then putting the mask on and then you can go into the room.  She stayed for about 15 minutes and then she left and Lauren came over to visit with her dad.  She stayed for about 15 minutes and then I stayed with Andy for another 20 minutes or so.  He was in the middle of his chemo treatments while we were there and was feeling cold in a warm room.  Cute thing is he has a star wars robe...with a hood..lol..anyway..he had to put that on, that's how chilled he was.  I was rubbing his hands to help warm them up.  After we left he took a nap and now, through chat, it seems like he's feeling better stomach wise, but the ativan is having him feeling a little fuzzy brained.  I'm going to see him tomorrow by myself but leaving later like today..after noon...but staying longer.  It allows the kids to sleep later and gives my mother and the girls a little break from taking care of Ben.  That's all for now.  :)

Friday, July 8, 2011

Day three

Today was not as routine as we first thought it was going to be.  I arrived at the hospital at the usual time; a little late because it was raining buckets from the time I left home till just outside of Boston.  I brought Andy more clothes (pj's and what not).  They are more comfy than the johnny with bottoms that the hospital provides..oh I also brought his slippers.  Anyway, shortly after I'd gotten there he was getting his first dose of chemo and he also got the anti nausea meds.  I spent a little time with him and then I went down to the cafeteria for lunch.  As I was munching on my salad Andy emails me on my cell that he pulled out one of his Hickman catheters a little bit.  He'd been moving in his bed to get comfortable and inadvertently pulled on the catheter, tearing the stitch that was holding it in place and in turn pulling on his skin very painfully..part of the catheter was pulled out too, making the whole area kinda bleeding a little bit.  I quickly finished my lunch and went back up there.  In the meantime the doctor had been summoned and he in turn paged the PA for the surgeon who put in the catheters.  She showed up about an hour or so after I got back up there, in the meantime, Andy was in a bit of pain.  Finally the PA gets there and says she needs to consult with the surgeon on what they need to do.  Surgery to take out and replace the catheter or try to re stitch the catheter in place again.  The re stitch was decided on.  So, she came in and did her thing.  She numbed up the area around the catheter but was concerned she'd pierce it so there was space where the numbing med didn't reach.  So, it was pretty painful for Andy.  After she was done that whole area was pretty sore/feeling like it was burning.  He was given pain meds for that so after another hour he was finally starting to feel comfortable again.  While the PA was doing her thing, Andy's nurse hooked him up to the second dose of chemo for the day.  He was also given his various meds.  He started to feel pretty sleepy.  By that time, it was time for me to go home anyway. Tomorrow I am going over later because I am bringing my mother and the kids with me.  We will be going after lunch and then for a couple of hours instead of like 6 hours.  Ben won't go in his room because he doesn't understand about masks and gloves so we'll have Andy come out into the nurses area with his mask and gloves on.  Then the girls will take turns with Ben in the waiting room while the other visits with Andy in his room.  Hopefully he's feeling good tomorrow.  Take one day at a time. :)

Thursday, July 7, 2011

Day two...chemo starts

I woke up thinking that by that time Andy would have met with all his doctors; rounds usually being bright and early.  I was wrong.  I woke up around 7 a.m. with Ben looming over my face saying , "wake up, Mommy".  So, we came downstairs, I made some iced tea for me and chocolate milk for Ben and we logged on to the computer and I fired up my email to find that Andy had gotten up bright and early because he just couldn't sleep very well last night.  He was hot, he was cold and then he figured out the thermostat.  Once he was able to sleep a nurse or PNA would come in for vitals and of course the ambient noise that occurs in hospitals; even with his room door closed and shades drawn.
After chatting with him a bit in instant message (or was it video chat?..lol..I'm tired enough that I can't remember!!) it was getting ready to go time.  Woke up the girls and once I had everything ready to go, gave out instructions and did the whole kisses and hugs goodbye thing and off I went.  Traffic wasn't too bad; spending most of my time on route 9 in Westboro where there was just shear volume causing stop and go traffic.  Once I was free of that I was able to get on 495 and then the Mass Pike with very little trouble.  I was a little nervous I'd forget how to get to the hospital or that the parking pass wouldn't work, but everything went without a hitch.  It's a good mile from the garage to Andy's room..maybe a little less..lol..but it seems like a mile..take a left here, a right there, go down stairs, take another right there, then a left to the elevators up to the 6th floor and then a right, a left and through the double doors and going around the nurses station..things have to be wiped down, my purse has to go in a plastic bag, my cell and charger and glasses have to be wiped down and I have to put some Purell on, the gloves and then the mask and then I can see Andy. :-).  By the time I arrived, it was about 10 a.m.  The doctors had made their appearance and I missed them.  All sorts of things happened while I was away..he has a special toothbrush, toothpaste, mouth rinse and mouth wash..one to spit out and one to swish and swallow...there are many different pills to take for many different reasons.  Anti viral, antibiotic, something to help the lining of his esophagus, stomach and intestine linings from getting infected or something like that, vitamin E to help his skin heal, potassium (because he was found to be low in this), extra protein in powder form, he has IV liquids, his pain meds and that is in addition to the tiny IV bag for the first dose of chemo and then the not so tiny IV bag for the second dose of chemo..both are different toxins but critical in doing its job of killing off the bone marrow in Andy's body.  He was given anti nausea medicine before the chemo to prevent nausea from even starting.
Right now Andy's appetite is normal but he's feeling pretty tired.  Maybe more than normal and that's probably because he is a little at loose ends on top of his disease..not a lot to do or places to go and he's not smoking anymore.  He did walk around the nurses station but it's a very crowded area and there were quite a few people moving about so after a few minutes we just went back to his room.  Tonight he's going to have an iv sleeping medicine which should help him sleep all night..hopefully.  And that's about that for today.  :-) and on that note..'Goodnight' all!!

Wednesday, July 6, 2011

Day one...t minus 7 or 8 days until day zero

Today Andy was admitted to the hospital.  Brigham and Women's to be exact.  We were told to be there around 7 a.m. so that he could get a platelet transfusion before his surgery.  So, we get there, answer the usual admitting questions, sit down and wait.  We must have said several times that he needed a platelet transfusion and that no..the leads had not been put yet.  Andy had to speak to two different people on the phone at their reception desk to explain the whole thing again and again.  After about 1/2 hr we finally are told to follow this woman down to PACU..post op..Andy gets into the johnny (very cute with his hairy legs sticking out..lol) and onto the bed.  The nurses then start an IV, taking blood to see what his blood counts are at that moment.  Another half and hour or so goes by and the nurse comes back to say..'your counts are 68 so that's above protocol..so we don't need to give you platelets!!'...well, that just means we have to sit there and twiddle our thumbs for two hours while we wait for his surgery to start.  He met up with the physicians assistant, the OR nurse and the anesthesiologist.  Finally, just before 11 the anesthesiologist comes for Andy to take him to the OR and I was shooed away.
That being said, the 'waiting room' is actually called the 'family liaison'.  You give your name to this receptionist person and the name of the person having a procedure then you're given a beeper for when the doctor or nurses are ready to talk to you.  There are phones, computers, copiers/fax machines, many tables w/chairs, sofas and little alcoves with a grouping of comfy chairs for families and maybe their privacy and there are a couple of tv lounges and a couple of consultation rooms as well as an extensive book/educational and dvd library.  They offer free coffee/tea and water and if you want to eat, there's an restaurant around the corner and the cafeteria around another corner.  I had my breakfast and then read a book.  Closed my eyes for a while and after about two hours was told that all went well (PA called me on my cell to say that) and the nurses to say I could go and see Andy.
I went downstairs to post op and there he was, as alert as someone can be after surgery.  He wasn't put under general anesthesia but a twilight kind of sleep so it wore off pretty quick.  We had to wait for the resident anesthesiologist to consult about Andy's cpap machine that he needs on account of his sleep apnea before they could bring him up to his room.  He now has two Hickman catheters, each with two leads.  The one on his left kept bleeding a little bit at a time.  Anyway, he was brought up to his room sometime after 2 I think.  I had to wear a mask and gloves right away..my purse has to go in a plastic bag before I can take it into his room and anything like his computer, etc..has to be wiped down with an antibacterial wipe.  Before you put gloves on you have to rub in a squirt of Purell on your hands.
The room is on the 6th floor in the B pod..lol..there are 4 pods...he's in room 38.  He has a room to his self.  While I was there with him in his room, a resident came by to check on him, then person from the dental department.  Not sure what they talked about because I'd left just as this man was coming in the room.  The nurse, Nancy, was taking care of the bleeding from one of the catheters..it wasn't a huge amount but it just kept weeping if you will.  Before I left Andy was able to eat a hamburger.  I'm pretty tired right now so I'm feeling a little disjointed in my thoughts and probably sounding like it too...lol.  So, I'll end this for now.  I can wake up a little bit later tomorrow.  My plan is to leave the house b/w 8:30 and 9 a.m. and leaving in the afternoon for home around 3 or 4..at least for the next two weeks or so..while he's going through the chemo and then the transplant.  After that we'll see how things are going.  I am very grateful that my mother is home to help out and that Jen and Lauren are working more like a team to watch Ben than at each other's throats.  Hopefully they will continue to get along.  Anne, my mother in law, is coming over next week to help out too and to visit Andy of course. :)  One day at a time..that's our mantra nowadays...one day at a time.  I miss my hubby. :-(  but..the end result..his being cured..is worth it.

Friday, July 1, 2011

the day is almost here

When Andy is admitted to Brigham and Women's Hospital in Boston, MA.  Six more days.  Not too long ago it was months away.  How quickly time can pass.  Just over a week ago we were in Boston over at Dana Farber. Andy and I met with his oncologist, Dr. Antin, to go over the consent forms.  We also met with a social worker and the RN coordinator.  The social worker, a woman named Tami, told us all about support that is available and that we'll have a free parking pass as well as $250 in gas cards which will help with the cost of travel immensely.  The RN coordinator is Toni and she gave us a calendar of events that'll happen once Andy is admitted to the hospital, which I'll get to shortly.  In between all that, Andy had to go to the lab for blood and urine tests..21 vials of blood!!  He also had to go for a TB test, chest xray, lung function test and an echocardiogram.  That was an all day event for us..from 7:15 to 3:30 ish.  We didn't know we had to go into the hospital for two of those and that was interesting.  We got lost trying to find our way to the radiology..or the one we needed to get to and to top that off, the fire alarms went off and some folks were leaving the building while others weren't..very strange and confusing.  Finally this kind nurse brought us where we needed to go.  The hospital and Dana Farber are actually connected to each other by a tunnel of sorts...they call it the tunnel of hope and someone painted a mural of all these birds..very nice. :)  It was a long day for both of us.  For the girls and Ben too, since they had to fend for themselves for the day.  Thankfully, they managed not to burn down the house or kill each other. ;-)
Now, for the timeline of Andy's hospital stay.  Because he has low platelet counts, he's going to start his first day there getting a platelet transfusion.  Right after that he'll be having surgery to insert two separate venous catheters into his chest; each catheter will have two leads.  One will be for his chemo meds, one for pain meds, one for fluids/other meds and the last one for nutrition should he be unable to eat.  After his surgery, which he'll be getting general anesthesia for, he'll be in recovery and once he's awake/alert, they'll bring him up to his transplant room.  I imagine he'll be getting visits from doctors/nurses/specialists and maybe even a nutritionist and social worker.  Not sure if that'll happen that first day or not.  The very next day, Thursday, July 7th, he'll receive his first dosages of chemo...he'll get that on Thurs, Fri, Sat and Sunday.  He'll start getting an imunosurppresive(sp?) to help his body from rejecting the new stem cells...bringing his counts down real low and finally to zero.  He'll hang out for a couple of days and then get his stem cell infusion on July 14th...the stem cells are being flown in from Europe.  So, they'll be frozen.  There's a product that they use to help the stem cells from getting damaged during the freezing..I forget what it's called but apparently it can cause an odor to exude from Andy as it works it's way out of his body..they claim it smells kinda garlicky and I think he might have a bad taste in his mouth.  He'll need to be watched real carefully during this time of his transplant b/c it can cause real low blood pressure among other things.  Once that's done, he'll be given a drug that is supposed to suppress the possibility of GVHD(graft versus host disease).  It's actually a drug that is in clinical trials right now; Andy agreed to take part in it.  GVHD can cause all sorts of problems from skin rashes to intestinal as well as other organ damage and it can happen at any time in the one year from transplant.  Andy will also, mostly because of the chemo, be losing his body hair, his taste buds will be off and his mouth may be real sore (hence the inability to eat) as well as the nausea, vomiting, headaches, fevers and diarrhea.  They'll be encouraging him to get out of bed and walk around and sit in his rooms chair so that he doesn't get too weak.  They'll do their best to keep any pain at a minimum so that he can eat and move around.  I believe that about a week/two weeks after he's received the transplant the stem cells should be starting to engraft to his bone marrow and making healthy blood cells and those blood cell counts should be going from zero to as well as they are now; maybe even better.  If all goes well, he'll be out of the hospital and home by the end of the first week of August.  There are lots and lots of potential side effects that can get serious real quick that might extend his stay in the hospital, but a positive frame of mind is what I/we have to have to help Andy to move forward minute by minute to day by day and eventually month by month.  He'll be getting uber amounts of antibiotics as well as blood transfusions during the times when his counts are bottomed out.  Once they start coming up again, the transfusions will stop and the antibiotics will be tapered off.
Once Andy is home, he'll be able to walk around the house, be in the car and even outside, without a mask and gloves.  That's when we'll have to be very careful in regards to hygiene and house cleanliness.  Any visitors will have to be in excellent health as well as anyone they've been around.  People don't think about it, but if you've been around someone who's been sick, could be you'd caught whatever they had but aren't showing symptoms yet but you could potentially be very contagious yourself and not even know it yet.  God willing we'll get through the fall/winter and coming spring without any major setbacks..that being said..we can certainly expect them or at the very least not be surprised by them.  Right now, I just have to get through these next few weeks for Andy and pray that no one here gets sick or I get sick.  My plan is to see him every day for those first weeks and then maybe the last week or two taper it to every other day or so.  I already have two days in July where I won't see him that day b/c of household chores and appointments.  He'll probably be sick of me by then anyway ;-)..so a day off here or there will probably be needed...lol
My mother has been visiting her sister in North Carolina this whole month of June, coming home on the day he gets admitted to the hospital.  She'll be here to help Jenny and Lauren out, looking after the boy and the house and hopefully everything will run smoothly and without too much drama.  Andy's mother, Anne, is coming to stay on the 13th till the 1st of August, going home on the 2nd I think.  I'm still unclear if my mother is going to see her other sister, in Florida.  I guess I'll find out when she gets home.  Between all of them, I shouldn't have to worry about the home front too much.
One note; our landlord came by this past Friday to have us sign an addendum to our current lease which will allow us to rent this house until March 31st 2012 and then we'll have a month to month lease after that..having to give 60 days notice of moving or if they need to move back.  Before he came over we decided to wash the rugs ourselves so we bought a new steam carpet cleaner.  I did it myself..cleaning the rugs in the dining and living rooms which saw most of the traffic from the front door not to mention Ben, dog, cat and other messes that ended up staining the rugs.  Somehow I must have really stirred up all the germs and what not in those rugs.  I'm the only one who had a seriously clogged/runny nose...it was like I came down with a bad cold.  When we were at Dana Farber I started having a runny nose and then my right ear got all clogged up.  The next morning and the one following that I had a sore throat, swollen glands and headache along with the nose issues.  But, no one else came down with this 'cold' so we figure it had to do with all the nasty dirt and stuff that was picked up by the carpet cleaner that only I was exposed to..I had to empty the waste water container and I was the one with my face over the machine while it cleaned..so, I guess...there you go. :-)
Now, with sleep..not getting much over night.  I can't shut my mind off.  I lay there for hours sometimes.  Sometimes I'll fall asleep and others I give up and come down here.  Tonight was no exception.  I took two of my anxiety pills not too long ago in the hopes it'll make me sleepy enough to sleep..maybe mellow enough to shut up this mind of mine to get to sleep.  I do feel sleepy now..tired enough to go to bed.  So, I'm going to wrap this up.  Once Andy is admitted, I'll try to keep a daily blog of events and how Andy is doing.  There may be nights where I just don't want to or have the time to.  But, I'll do my best...so, night all..or good morning..depending on where you are and what time it is. :) lol