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.  :)

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. :)

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!!

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.

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

testing

Tomorrow Andy and I are going to Boston to Dana Farber so he can meet with his oncologist, Dr. Antin and then to have various testings over at Brigham and Women's (chest xray, ekg, blood and TB).  The first appt, with the doctor, is at 7:15 a.m. and then the last appt is at 3:30 p.m.  So, a long day but busy enough that the time won't drag too much.  We also have their 'teachings'  on the whole stem cell transplant process from beginning to end.  It's becoming such a very real reality..no more putting it on the back burner.  I think that may be a big reason why I am having such a hard time falling asleep.  It's been taking me an hour or more to fall asleep.  Then Ben wakes me up about 1/2 and hour to an hour later; then it's time to wake up Andy at 4:15 for work, then up again at 5:20 ish to take him to the train.  I'm very thankful that Jenny and when my mother is here, will look after Ben for a couple of hours so I can do a little catch up on the sleep in the morning.  That'll change in the fall once Ben is in preschool..but that's another subject for another day.

This weekend, we..Andy and I..were hit in the face with his illness in a very visual way.  He's not supposed to mow the lawn but we were having issues getting Jen to do it so Andy lost patience and decided to do it himself.  We don't have a very huge lawn here but there used to be an above ground pool in the back yard so there's still some sand around the deck area, not to mention small rocks..the kind you find on a path that are rounded out and smooth..anyway...it was warm out and he was sweating and he must have wiped his bald head with his hand and sand grain or something like that nicked his forehead, causing a bit of bleeding.  He didn't notice I think because he thought he was just sweaty.  So, I opened up the door to ask him if he needed a bag for this box he was breaking down and I look and see rivulets of blood running down his face!!  I wiped it up expecting this huge gash on his scalp only to find this little tiny pore like whole on his head.  It took quite a while to get it to stop bleeding but with ice and pressure we managed.  Okay..no problem.  The next morning Andy was shaving his head with a razor and while doing the back of his head/neck area he cut himself.  It was about an inch long and very thin...like several layers of skin were peeled off..So, I applied pressure, got the ice on it and it just wouldn't stop bleeding.  We went off on a ride..ended up in Hampton Beach and along the way we had to change the bandages several times b/c it was just soaking on through with blood.  This is all due to the fact that his platelet count is so low..platelets are what allow the blood to clot if you don't know.  Then he now has issues with blood sugar..or what we think is blood sugar.  If he doesn't eat well for breakfast or any meal really, he gets real shaky and weak and even dizzy.  We'll be addressing that with the doctor tomorrow too so that we can see if he's becoming diabetic.  Just last weekend we were dealing with a uti which somehow managed to get better on it's own..that's a good sign b/c that means his white cell count is still high enough to fight infection.  I'm glad that this is happening so soon because it just means that he'll get better that much quicker.  We're preparing for his return home already.  Cleaning up more than usual; like steam cleaning the rugs. Our landlord is coming over on Friday (he's visiting in the area from India) to talk about extending our lease until March 2012 at the very least.  I'm hoping he'll go month to month after that.  Our concern was that moving on September 1st would be dangerous for Andy..the movers and what they bring in on their shoes..if they're sick, etc.  By March, his blood counts should be almost if not completely normal if the transplant does it's job and cures him or at least puts him in remission.  God willing.  I'll leave it at that for now.  Tomorrow is a big day for us...a big day of coming to terms with what is now our reality.

New date

Well, the original date for Andy's admission to the hospital was July 8th.  The coordinator over at Dana Farber says that it'll most likely be July 6th because Andy will be getting straight Chemo instead of a chemo/radiation combo.  A good thing because radiation is so hard on the organs; I'm not an expert on it by any means, but I think it'll be easier for Andy to recover by having just the chemotherapy instead of having both treatments.  Soon, we'll be hearing from someone over there at Dana Farber for the appointments that'll help Andy prepare for what will be happening and for his recovery at home; they call these appointments consent/teaching appointments.  Dr. Antin is supposed to discuss this chemotherapy treatments with him at that time so we'll understand more and know better what to expect.  It's hard to believe that in one month my husband will be entering a phase in his life that will challenge him in ways he never could have imagined..I think.  He's a strong willed person who keeps his cards to his chest so it will remain to be seen how he handles all this both physically and emotionally.  The good thing is that Dana Farber/Brigham and Women's have so many things in place to treat a person in all aspects so that they can move on (whether with a good or poor prognosis).  There are things out there for the caregiver also but I'm not sure if I will utilize any of it since it's all located in Boston and I can't hang around for more than what I've decided to allot for Andy.  I have to come back home every day to spend time with my kids during this uncertain time.  I'd love it if we could rent an apartment over there, close to the hospital.  If we were rich..sure, but we are not so I cannot.  That's sad really because I'm torn between spending as much time with Andy as I can while attending the needs of my children.  I know it won't be for a very long time, but it's long enough.  I really hate that it's so uncertain, but I try to remain positive.  I have to believe that Andy will get through this without any long lasting side effects, that he won't have any infection once he's home, that he'll live for a very long time and happily at that..and healthfully.  He will be healthy, he will be healthy, he will be healthy...my new mantra :)  Power of positive thinking..I'll let you know in a few months if it works. :)

waiting

Our waits seem to be in two week increments.  Andy had his appointment with Dr. O'Shea today; to keep an eye on his blood levels.  Here is what they are like from April 12, May 2, May 18th and then today, June 1st.
April 12 - white blood cell counts - 3.0, Hemoglobin - 12. 3, Hematocrit - 37.2, Platelets - 46
May 2 - white blood cell counts - 3.1, hemoglobin - 12.2, Hematocrit - 35.2, Platelets - 47
May 18 - white blood cell counts - 2.6, hemoglobin - 12.0, Hematocrit - 36.0, Platelets - 47
June 1 - white blood cell counts - 2.5, hemoglobin - 11.8, hematocrit - 35.8, platelets - 41
so you can see that there is definitely a slow decline.  No wonder he's so exhausted all the time.  Normal white blood cell counts should be 3.8 to 10.8, hemoglobin 13.2 to 17.1, hematocrit 38.5 to 50 and platelets 140-400.
His walking to work and then back to the train again is painful (his hips bother him) and his hands and it'll spread to his other joints too.  There isn't anything to do about it really since regular medicine such as Tylenol doesn't even take the edge off.  He can't take ibuprofen products because they effect the platelet counts.  The oxycodone he was given he can only take at night b/c it makes him so sleepy (when he already wants to nap all the time..the only thing that keeps him nodding off is his determination and discipline..he has a whole lot more than I do..one of the many things I admire about him) In little over a month he might be going into the hospital and this will just change our life.  It's looming over all of us.  Mostly Andy and I; the kids, I think, don't really comprehend what it's all about.
So, we're waiting again.  Waiting for the next two weeks to go by so Andy can see what his levels are like and for an answer from Dana Farber as to when he'll be admitted.  Before he is admitted he'll have to do more tests and 'teaching' about the whole process of getting chemo, radiation treatments, the blood cell transplant and then living with the after effects of all that both good and bad.
In the meantime we are keeping busy making memories.  The other weekend we just went out and went to open houses.  Last weekend we went for a ride into New Hampshire and then Sunday we went to Watch Hill in Rhode Island.  Then Monday (Memorial Day) we went to the movies.  Andy, Lauren, Ben and I went to see Kung Fu Panda 2 while my mother and Jen went to see Bridesmaids.  Then we went out to dinner at Chili's.  It was such a nice weekend we spent with each other.  We had a bit of drama; Andy and I ended up leaving here at 3:15 a.m. to go and get Jenny in Chicopee.  Won't get into it but I hope it never happens again.  It's time for some people to grow up..not just Jen but all involved.  Enough said about that. :)
This coming weekend, Sunday, we'll be taking Lauren out to lunch and then a movie (Pirate's of the Carribean ..the one with Blackbeard) and then she'll get her ears pierced.  That is her birthday gift..along with some pretty nice earrings.  On her birthday, Monday, the 6th (her 13th bday) I will make her her requested dinner of baked mac and cheese w/ham and an ice cream cake for dessert.  The following weekend it's an outing to Canobie Lake Park and then for Father's Day weekend it's to the beach and then the weekend after it's to the Rhode Island Air Show.  Oh, maybe we'll go to Boston and ride on Codzilla.  Not sure about that.  Memories are what we're making.  When it comes to my family, those memories are the best. :)

I should clarify

I said 'facing my husbands death' when I meant to say...my husbands possible death..he is facing a life threatening situation.  I am always hopeful and determined if you will..to see that my husband will live to a very ripe old age. :)

we survived the End of Days

I know at this point, a lot of people are making fun of that guy who claimed we were all going to hell in a hand basket or better yet, to heaven while the evil folk would be left on Earth to suffer for their sins or something like that.  I figure that I just shouldn't worry too much about shit like this because when it's your time, it's your time.  I had a discussion with my brother Shaun about this a little bit before the media started reporting on it b/c there was this video out there on youtube or something that showed how people were going to just disappear and those left on Earth were not the chosen few, etc.  It really ticked me off and it kinda scared me too.  I guess what scares me is that whole 'it's not in my control' kind of thing.  I'm a person who likes to be in control..hence the fear of flying, my need to drive all the time (I make a real bad passenger), etc.  But, I seem to be feeling a bit better about the whole thing.  I seem to feel like I've reached a 'peace' about it all.  Facing death..my husbands death, in particular is sobering to say the least but it also kinda has me feeling like I'm sitting/standing up straighter figuratively if you will.  Over the years I think I've gotten a little bit timid; having Andy handle a lot of things where I most certainly could have done them myself..I don't mean chores, more like handling problems or dealing with other people.  And now, with Andy being in the hospital for a month or more and then home for several months where he won't be able to leave the house much and/or deal with problems...I definitely have to start gearing myself up mentally to deal.  I was a single parent for more than 8 years dealing with issues left and right.  My oldest daughter, Jenny, is a emotional and physical whirlwind..still is to this day (over 22 years later)..I had to deal with her illnesses and then once in school, her significant learning disabilities and eventual stubbornness about going to school.  Going to work and not making a lot of money for the both of us to live on, etc.  I don't have now and I didn't then, have a huge amount of family or friend support.  I have to rely on myself to make sure things get done.  So.  There it is.  The whole scope of it is; I have to rely on myself while Andy needs to pull back from his day to day responsibilities and focus on surviving this illness and its treatment and any complications in relation to it.  I'm gearing up and slowly changing my way of thinking and doing.  I have to get used to being stronger in the face of all this.  I'm blessed in a way...I get to prepare.  Not everyone does.

blood levels

Andy had an appointment with his oncologist today; just keeping an eye on those blood levels and so far, they are pretty stable.  His white count fell a little more, but not in a very significant or alarming way.  A good thing. :)

Some more news from Dana Farber

The coordinator emailed Andy this afternoon to let him know that a 21 year old young man is being asked to donate a blood sample and then be evaluated to donate in July with a possible admission date of July 8th.  That's amazing and exciting.  We're ever so hopeful that this will be what cures Andy. :)

More news.

A couple of weeks ago we were told that Andy and his sister Megan didn't match.  Today we were told that he and his sister, Erin, also didn't match.  However, they found over 400 donors; some of them have already been fully typed and appear to be matches already!!  This is very good news.  So, that June/early July stem cell transplant time sounds like it's very possible.  It's a little scary but very exciting also.  Hopefully, Andy's blood count levels will stay stable and there won't be any real urgency like as if the MDS turned to leukemia.  I've actually been feeling strangely peaceful about this.  I spent a lot of time praying on it, if you will.  I have faith that Andy will be cured with this stem cell transplant. :)  Oh, as a side note...I think I'd like to learn how to play the banjo. :)  Lauren wants to learn how to play the guitar.  I'm gonna look into that. :)  Something else to think about. :)  A good thing.

Some news...

Yesterday Andy had an appointment with his oncologist in Worcester.  Dr. O'Shea does blood levels checking; the good news is that Andy's blood levels are pretty stable.  They are almost the same as the way they were 5 weeks ago.  That's good news in that it means that this disease isn't being aggressively worse.  We'll be going back in two weeks to check the levels again.  He also answered some of our questions.  One of them for me...I was confused why I'd see mortality statistics..some where 4 years, some 5 and some 10 years, etc.  I was also confused as to how someone could get a stem cell or bone marrow transplant and not be cured..well, why aren't all people who get transplants cured?  The statistics are really based on how long the study is on from what I understand.  The being cured part..well, I guess there is a possibility that not all the cells in the marrow can be killed by the chemo and radiation treatments and therefore, that errant cell(s) can actually reproduce itself and before you know it; the patient is back to MDS or Leukemia again.  A patient can die from complications of the chemo/radiation treatments and/or from complications of recovery (such as infection)....That gives me a little bit more in the way of hope.  This one 'paper' that was published online said that there was 31% long term survival from the patients in their study...it kind of threw me for a loop...so, I asked him...so, do people just die after 4 years?  really...a very daunting prospect.  The bottom line...studies aside...is that no matter what, we..Andy especially, has to take one day at a time...never mind what 1, 2, 3 or 5 years from now...lets just take each day, be grateful for it and hope there is a tomorrow for him, for me, for all of us.  I'm looking to when we're both in our 60's and able to travel alone and all over the place :)

Okay...the other news.  That same day..we found out from Dana Farber that Megan is not a match for Andy..she only matches 6 out of 12 markers.  Now we're waiting on Erin's kit to be typed.  They hadn't received her kit as of yesterday.  She'd just sent it out two days later than Megan's, so we're not sure why it's taking so long to get to Dana Farber.  And we're hopeful that she's a match.  If not, another piece of news is that a preliminary search of the anonymous donor database has found several matches for Andy.  They will do further testing on these people if Erin turns out to not be a match, too.

This will hopefully allow us to move quicker on Andy's getting that stem cell transplant.  I went and bought a steam cleaner..to help keep the floors as clean as they can be.  I've developed a schedule of chores for all of us to do so that once Andy is home and these chores will absolutely need to be done, we'll be used to doing them.  We'll be starting that this coming weekend.  I've taken down the curtains and washed them and washed the windows and will be cleaning all other things so that we can start the schedule without having to do a huge amount of scrubbing, etc.  Spring cleaning if you will. :)  I've never been one to keep the house spotless, but that's going to change a little bit.  Funny thing is I would do a huge cleaning if we were getting guests, but now, we won't have to do that because we'll be on top of cleaning for the sake of Andy's health.

A good thing :)  Anyway, so that's all there is to it folks.  I'm not feeling especially introspective or anything like that.  Just kind of in a waiting mode.  I have myself a doctors appointment tomorrow to make sure I'm healthy as I can be considering my weight and that I have hypothyroidism and am prediabetic (other doctors have said that just means I'm diabetic..but I don't watch my sugars with monitor... and my doctor never said I was diabetic..she said I was prediabetic..so screw those other doctors!! lol)...I want my regular doctor to keep an eye on me rather than the endocrinologist..her attitude stinks and I don't want to deal with her.  I also have pain in my right knee and this weird pain in my right lower abdomen and I get this other pain in my upper right abdomen, just below my ribs.  Not sure what that can be..so we'll see.  Going to assume I'm as healthy as can be regardless. :)  Everything tends to work out. :)

A thought or two..

I've been watching a documentary of sorts on The Science Channel, "Megaquake: The hour that shook Japan".  At the end of the show this old man says that in his 70 years of life he's had his share of bad experiences but this was the worst and then he says that they now have to start from scratch.  It also brings to mind the people in our southern states, especially Alabama where over 100 tornadoes touched down yesterday.  The earthquake in Japan..over 13,000 people are confirmed dead with over 14,000 people still missing.  Yesterdays tornado disasters there are over 200 killed with possible missing.  I imagine they are starting from scratch, too.  I have been so lucky that I haven't had to deal with any kind of disaster of this magnitude.  It's gotta be like surviving a war; shock, disbelief and then acceptance with maybe some anger and despair rolling around there.  That being said, the reality of my husband fighting a life threatening illness was earth shaking and it's like we are in the middle of some kind of metaphorical storm or tsunami.  The waves or the winds are threatening us and our lives as we know it  now.  I'm pretty sure we/I have no idea how it is to survive what those people in Japan and in tornado ravaged areas is; but I feel like our way of life has shifted.  Now it's all about survival.  How can we keep Andy alive and well and to live until he's so old he can't stand up straight and has a foot of grey hair growing out of his ears?  I think he and I, together, can conquer this and I know that his strength will bolster mine; prop me up by watching his example.  I was struck by how turned around by this diagnosis of Andy's I am and when I see the devastation that these people are dealing with; I figure that if they can literally pick themselves up; deal with their emotions and the reality of their new life, then I certainly can deal with the reality of our new life and I can stand behind Andy to be his wall, his rock and when he's strong enough literally and figuratively, then I can be beside him and we can continue our life together.  We might have to look behind us; at the destruction an illness such as MDS can wreak, to remind us how we need to keep looking forward, after we start from scratch and take each day and cherish it; hold it close and never, ever take it for granted.

Planning...

I, am a planner.  Or I try to.  If I have time; I'll plan.  Make lists in my head and sometimes I'll write them down or research the hell out of it and plan with that information.  Last year, Andy and I took our very first vacation together; alone.  We started talking about it just before Christmas 2009.  I started looking online for vacation packages right away.  I found that Southwest Airlines has the best packages available for Las Vegas.  Even beats out BJ's and Priceline.com.  I researched all the hotels on the strip up, down, sideways and around till I figured out which one we would be most comfortable in and it wasn't going to cost us an arm and a leg.  I had to wait, before I could book the trip.  Andy's employer gives out bonuses every year at the end of February.  I was chomping at the bit, but I was in 7th heaven just researching and looking at reviews and pictures of travelers over in Las Vegas and just thinking about what shows we'd see and places we could go; it was awesome.  Then the day came for my being able to book the package and the hotel I'd chosen with Andy's feedback, was no longer available.  It threw me for a loop, temporarily, until I could find the 2nd best hotel.  There was some anxiety in this trip.  We'd be leaving our kids home with my mother for a week.  At first, my sister in law and brother were going to take Ben and Lauren for the week, but something happened there where it just didn't work out.  My mother assured me that she and Jen could look after the two younger ones with no issues.  Our biggest issue was whether or not Jen would live up to our expectations and whether or not Ben would be able to sleep without me nearby.  And the next biggest issue was that this was the first time I'd ever flown in plane.  A little background; from the time I turned 13 till sometime in my late 20's; I had terrible dreams of planes crashing; people falling out of the sky, etc.  I was always a bystander in this and never died or was hurt in my dreams, but the fear associated with these dreams made the actual reality of flying a little bit scary for me(9/11 did not help me with this phobia of mine).  Ever here that song from Alanis Morrisette "Ironic"..there's a line there:  Mr. Play It Safe was afraid to fly
He packed his suitcase and kissed his kids goodbye
He waited his whole damn life to take that flight
And as the plane crashed down he thought
"Well isn't this nice..."
And isn't it ironic... don't you think

I went to my doctor and asked her for something that I could take so I wouldn't freak out on the plane.  I'd seen a youtube video about this guy who was having a complete panic attack on the plane he was on and some jerk using his cell phone; shot the video of this man's really bad moment and posted it on youtube for all to see.  I felt so bad for him, but at the same time, was kinda worried I'd be in the same way.  So, that morning we were to leave, at the airport, I ended up taking two pills..one did not take away that anxiety I was feeling.  I was kinda amazed at how small it is in a plane and how they can fit so many people in such a small space.  As we started taking off from Logan, I think I could have easily broken a bone or two in Andy's hand.  I actually leaked out a tear or two once we were up above the clouds.  We had a layover in Denver..so we had to take off twice and land three times along our way.  Landing didn't bother me so much as taking off did.    I think it might be a bit of a control thing.  I hate having someone drive me...doesn't matter where I sit in the vehicle...front.  Back.  I don't like it at all.  Andy has always been very understanding and only once in a blue moon will insist on driving.  This is where planning comes in...a control thing really.  Planning a party..a wedding...a trip....in our case...Andy's return from the hospital after the stem cell transplant...CONTROL...need to have a semblance of it I guess.  With an illness like Andy's, there really isn't any control as to what the doctors think will work best, how he'll respond to chemo/radiation treatments, how quickly he'll grow healthy cells once the transplant is complete...but when he comes home; I can control how we keep him from getting sick and needing to go back into the hospital or worse.  The thing is to keep this home of ours as clean as possible so that there isn't a hint of mold or mildew.  So, the planning comes into play.  I need...get that word...NEED...to plan on how WE (that being myself, the girls, my mother and even Ben) will keep this house clean together.  Right now, chores are done on an as needed basis.  The kids don't have an assigned chore per se; they do the chore (sometimes after much annoying whining or bartering or trying to get out of it) when we ask/tell them to do a chore.  Now, one thing to know about me is that I HATE...get that word too...HATE, cleaning.  I am not obsessive compulsive about cleaning.  I'll clean because it's necessary or if it's clutter that needs straightening out; I'll do that because after a while it gets on my nerves.  So, this whole thing about keeping the house very clean; it's daunting to me but my husband is so worth it.  So, I've decided to plan on cleaning this house from top to bottom..like a spring cleaning and then keeping it clean by putting each chore on a schedule.  I figure that if we can get used to doing these chores on a daily..every other day..once a week kind of schedule; then by the time Andy is released from the hospital it won't be so exhausting to start up this routine and my kids won't be giving us as much a hard time as they would if I just sprung it on them.  It'll be somewhat old hat by then.  I can only hope. :)  I'll check back with you in a couple of months and see how that's going..lol...I'm a bit determined though.  We have to do this to keep Andy as healthy as he can be as he recovers from the transplant and as his body hopefully starts building up new and healthy cells and he is in remission, or even better, cured. :)  As a side note...when I first met Andy, I was not one who made their bed every day.  I'd get the blankets/sheet and pull it up in a messy kind of making the bed; sometimes.  But shortly after Andy and I moved in with each other; he mentioned to me that he needs to have his bed made; it's a thing.  I wasn't working at the time so I felt like since he worked and I didn't, it was the least I could do while he worked all day.  We've been married 13 years now and I now have to have a made up bed.  If I don't make the bed, I feel slightly guilty and I feel out of it.  In a way, I'm hoping that this will become as much of a habit as making my bed is to me now.  I like the idea of a real clean house, but, as of this moment...I still HATE cleaning. ;)

In a day.

Has anyone noticed how when there are trials and tribulations, that more follows?  This past Saturday, our dog, Maggie, started getting sick.  She's been vomiting off and on since then; today being Tuesday.  Andy was working from home today; so he was able to come with me to bring Maggie to the vet.  The bottom line; not sure why she is sick.  She was given a shot to stop the vomiting and we had meds to coat the stomach and for acid reflux and we're told to feed her jarred baby meat.  He took some blood for tests and we'll get the results tomorrow.  I'm praying that we don't have any more to deal with.  I'd feel for Maggie but it's also very expensive.  We need to save for our move in August and well, it's going to be a huge problem if we have medical bills for Maggie.  At least most of Andy's bills are paid for by the insurance company.
It's like; now what?  How much can we all take for heaven's sake?  Hopefully there won't be anything else.  God willing; there won't be anything else.

Introspective...

Today I actually posted on Facebook that I found myself taking 'snapshots' of moments; no longer looking to see what an hour or tomorrow would bring but looking at what is now and committing it to memory.  The other day, I was standing next to Andy and I smelled his deodorant.  I like that scent.  It's clean and not overpowering.  Andy, in his usual considering way; stopped wearing aftershave or cologne while I was pregnant with Lauren in 1998 because the strong scent always had me gagging and eventually throwing up.  I have a sensitive sniffer as it is..but when I'm pregnant; it becomes bionic.  On a side note:  I remember laying in bed, sleeping and dreaming that I stepped in dog poo and I couldn't get it off my shoe and it was making me sick to my stomach.  In my dream I started to dry heave only to wake up dry heaving because Andy had farted!! :) LOL  That's how sensitive my nose was.  So, now that scent, the other day; I put it in my memory banks to treasure for all my time left on this earth.  No one knows when we are going to die.  I might die before Andy; he might die before me.  But regardless, I find that from now on I'll be taking those memory snapshots to bring out and treasure all over again time and time again.
I find myself thinking of how his hand feels in mine or how it feels to have his hand on my shoulder or how it feels when he massages my feet or my back.  He has what my mother calls 'carpenter hands'.  They are not huge hands but they aren't small either.  They are like square hands with sturdy and strong fingers.  He fools around and pokes me and I swear he has iron in those fingers; feeling the poke for many minutes afterwards.  He has gentle hands and hands that are comforting and at the same time help me feel secure.  Almost as if he's holding me and will never let go; protecting me.  I've watched him hug his daughters and son in a bear hug kind of way and hold them as if they are the most fragile butterfly wing on this earth.
His eyes, hidden behind his glasses.  When I met him for the first time, he was into wearing contacts even though they irritated them so badly.  But, that first time I met him, I was amazed by the kindness I saw there.  I am always amazed by how I see how people perceive him. Some people think him to be cold or off putting. I never once thought that of him and I think it's mostly because of what I saw in his eyes that first date with him.
His sense of humor.  Oh my..lol.  Some people just don't get it.  As a matter of fact, there are times where I don't get it. :)  He has a very dry and strange sense of humor.  He is a very logical man and I think it comes from his brain as well as his heart.  I'd cringe whenever I was in a doctors office or at the hospital for various reasons.  He would whip out that humor of his and I'd wonder if these people would get him or just think he was an ass.  I kind of always felt like I had to explain him to them just so that they wouldn't dislike him. I'm laughing as I type this; you really have to be there to understand. :)
Andy and I have grown up together.  Amazing since we met when I was 32 and he was 31.  We've had all these ups and downs that we've shared and grown and made stronger with, together, as a team.  I've never thought as myself as the strong one.  He's always had his hand in the middle of my back; figuratively and in reality, to help guide me and remind me that I was in it with him and not by myself.  Now, the tide has reversed itself and I find that I need to be there for him.  I wonder if I'm up for the challenge.  Since this whole thing started, I just don't know.  I've reminded him that he cannot die on me on several occasions.  Dying is not an option.  But, I don't want him to feel like he's failed me if we find ourselves facing that final door.  I just want him to fight.
I bought a book today: Lisa Niemi Swayze and Patrick Swayze: The Time of my Life.  The final book that they wrote before his death of pancreatic cancer.  I bought it in the hopes that it would give me some insight in how his wife handled his illness.  And death. (It's more from Mr. Swayze's point of view..he and his wife's love story than from his wife's point of view and how she handled his illness.  Although, she does write a little bit at the beginning of the book) I don't feel very grown up sometimes; since this whole thing started.  I feel very immature and I wonder if I'll be able to handle all the trials and tribulations that are ahead for Andy, our family and myself; with grace and maturity.  I look at people like Jackie Kennedy Onassis and how she looked so calm and dignified during the service for her husband.  I saw a woman on tv tonight who's husband died after he was given a heart to keep him alive and then she gave permission to have his face donated to another man so that he could have a face (which was burned off in an accident where he fell onto the electrified rail of a train or subway system).  She seemed so put together, so calm and like Jackie; dignified and mature even after all that she had to endure and in her grief she was able to help another man find more hope in his life.  I just want to be someone Andy can be proud to call his wife; someone he can lean on and depend on for all his needs..physically and emotionally and mentally.  I will strive for that.  I can't do any less because I love him with all my heart and soul.

the mustard seed of hope...and faith..

It's been almost two months since we've been alerted to Andy's illness.  I don't think I'm adjusting so great.  I want to cry all the time now.  Well, not all the time..but a lot of the time.  It just hits me; like someone punching you in the stomach.  Painful and at the same time taking the wind out of you.  I'll be driving in the car or sitting here watching tv or reading a book...then all of a sudden I just feel all those feelings and my eyes tear up.  It's making me cranky, too.  It doesn't help that I'm PMSing..which normally has me feeling out of sorts and well, for lack of a better word..bitchy.  I don't think there was much anyone could do right yesterday.  I think I need to feel like there is hope that Andy will survive this ordeal.  I did read an article; I think it had to do with this cancer center out in Seattle somewhere and they claim that there is more hope for more than just a 20 month survival rate after transplant.  The problem that might contribute to this is that most of the statistics that are out there concern folks who are older and less likely to tolerate chemo and radiation treatments..getting complications from that and dying from that and the dreaded graft versus host disease.  A lot of older folk also have other underlying issues like heart disease or diabetes and that adds to the problem.  Chemo and radiation is a very difficult treatment to get through; it being so toxic to the body..including those pesky 'bad' cells.  So, the doctors don't necessarily offer transplant to them; putting them on meds and/or keep them from getting worse by offering blood transfusions..but after a while, the body starts to get tired of all that and the transfusions don't work anymore.  So, all that being out there, it looks like someone like Andy will be lucky to survive barely 2 years and during all that he'll be in a living hell.  That bothers me on so many levels.  How can all that justify living a living hell..how is that 'quality of life'?  Anyway..(mentally shaking head..)but...I think what might be real important here is that Andy is young and pretty healthy outside of this bone marrow disease.  That should allow him to deal with the chemo/radiation treatment with out any complications and to bounce back from the transplant; again without complications.  The biggest thing being the lack of his immune system and then his body rejecting the transplant cells.  If one of his sisters match him then there's less of a chance of that happening..the rejection.  So, we hold our breath for 100 days...and then we hold our breath and hope he never develops the GVHD.  If..and that's a big IF...he gets through the months and years following the transplant without any major complication, the statistics say it will be a miracle.  I did read that little blurb though...where they are actually seeing survival to 25 years now...there it is..the mustard seed of hope.  I think as mentioned above, that the statistics are with people who are older than 60...but if they start looking at younger patients..maybe the percentage of survival will be different.  So, I'm going to try my best to cling to my faith that all will be well again and that that mustard seed of hope will grow into a huge field of bushes. :)  Hope..a light at the end of a very dark tunnel. :)

Sleep...

I didn't sleep well last night.  I sometimes will feel anxious and it kind of winds me up so that even though I'm feeling real tired, my mind won't shut off and I feel as if I'm sitting on the edge of my seat with the need to jump up and do something, anything.  That's plagued me for a very long time.  But, lately, it's happening a lot more.  I suppose I can't be blamed with all on my plate.  That being said, there are people out there who have more troubles than I do and for which I'm grateful that I don't have to face.  Like how I can put food in my child's belly or worrying whether or not a bomb will drop on my house at any time or if someone is going to decide to blow themselves up as I'm sitting in a cafe having my lunch.  I'm sure there are plenty of things out there that are bigger than my worries..but it doesn't take them away.  I am not going to feel guilty on top of everything else because I don't have the worries that some others face that I've never faced and God willing, will never face in my lifetime. I just.  I just don't know, sometimes, how I'm going to get through all this.  I know I can; I've dealt with issues before.  I think I've said before; this is different.  We are fighting for my husband's life here.  I don't have anyone to plead with though.  Other than God in my prayers.  Please, please...don't take Andy away from me.  Please, God, allow him to get through this with minimal suffering.  God, please, let my husband live a normal and healthy life until he's lived a very long life..like 90 years old or something along those lines.  God, don't do this to me.  How am I going to survive without my husband, the love of my life?  How can you do this to me and my children..how can you do this to Andy?  WHY???  We don't deserve this, God.
So, tonight, I'm going to try not to think about this too much or to allow myself to wallow in this self pity or fear or anger and sadness. I need my sleep... I have normal and mundane things to accomplish tomorrow.  We went out and bought a new refrigerator because the one here in this house that we are renting is a piece of shit.  It's leaking inside it and I refuse to have to take it apart and fix it.  So, we'll have ourselves a new one that will actually have room to put stuff in and have a decent sized freezer.  We have a decent warranty and repair plan on it so if something like leaking inside it happens, we can actually have someone who knows how to fix it, fix it.  I swear, this place is cursed.  It's been one thing after another.  So, tomorrow, I have to clean out this back room so we can store this stupid broken refrigerator.  Then I'm going to move Ben's toys into the living room, start packing the stuff we don't use on a daily basis for the move in a few months that we are forced to do.  I'm going to clean the area that was under and behind the refrigerator and pull out the stove next to it and clean there too.
When Andy comes home from the hospital we have to have cleaned this house from top to bottom to make sure there isn't any mold or mildew or fungus lurking anywhere and one of the overwhelming tasks for me...a person who hates to clean...is that I have to keep this house (or wherever else we are living) as clean as I can keep it.  Andy's immune system will be like newborn babies...or compromised is the word that is used a lot.  So the slightest mold spore can cause him to contract pneumonia or strep throat or some kind of GI upset and with a weak immune system it can take over his body and kill him.  See what I mean...so much to worry about.  We have a three year old and a kid in school and another who works in a grocery store.   We have to teach them all about washing hands all the time, using sanitizer, etc.  Too much..right now anyway.  I'm sure I'll get used to all this...the kids will and before you know it, it will be old hat.
So, I'm going to go to bed right now and read until my eyes cross and hope that I can sleep without too many dreams...been having a lot of anxiety dreams too.  On a positive note; I love my husband, I love my boy and girls and I love my Mom. Our cat and dog..Emily and Maggie..too.  All these beings..human and not...under one roof.  I'm grateful I have them in my life..sometimes that's hard to see, but I am.  I would not be me, I would not be here, without them.  :)

the power of positive thinking

Is there such a thing as positive outcome to positive thinking?  I read a book by Dr. Dwayne Dyer.."The Power of Intention" and I bought his book for inspiration called "10 Secrets for Success and Inner Peace".  I was really inspired to follow his instructions on how to get what you want in life.  It's easier said than done though.  I've always been a worrier.  I don't recall a time when I haven't worried.  I imagine the worst case scenario.  Maybe to prepare myself for the worst?  I don't know.  I remember one time when I was walking somewhere.  I was very deep in some kind of dark thought.  I happened to be walking past this car dealership and this guy blurts out 'Smile!! You look so serious."  It goes to show that I'm a deep, dark thought kind of gal if I let myself be.  I can't begin to tell how many times I've had to drag myself out of those thoughts and imagine myself at a beautiful place.  I love the mountains..the hills/dales and valleys..the lakes and ponds that pool in the natural bowls among all that.  I spent my teenage years in Northampton, MA; growing up in the shadow of Mt. Tom and the nearby Mt. Holyoke.  I loved waking up to that.  When I moved away to go live with my mother in Connecticut; I always looked forward to coming back to that view; that picture if you will.  It always filled me with a sense of peace and happiness.  I also love going into the Berkshires; usually driving through on the Mohawk Trail just after my birthday in October, when the leaves are at their finest colors.  Seeing the tower on top of Mt. Greylock and being totally amazed at all the 'hills' of that mountain range in Western Massachusetts.   So, when I'm having a hard time, I think of those scenes..those hills.  Andy and I have lived through a lot of adversity if you will in our short marriage.  We've had the usual ups and downs but sometimes those downs feel like what must be the pits of hell.  One thing we're fond of telling each other is 'we'll get through this'.  It sucks that we've had to deal with death (my father, his father two years later) financial difficulty off and on through out the years (the worst being when we had no choice but to file for chapter 13 bankruptcy) miscarriage (the worst being when I had to give birth to our son when he died in utero at 20 wks gestation..the other two were at 5 and 8 wks but still heartbreaking) moving three times and now we are faced with another move in September.  But, we've managed.  It is what it is..deal and move on.  This...MDS..however is different.  At first, when we heard about it, we were alarmed, but I don't think it hit me, especially, until I started to research it.  It's a life and death scenario if there ever was one.  There's suffering involved in trying to cure it and even then there is not certainty that a person can be cured.  It pisses me off, scares me and saddens me beyond I've ever been in my life.  Even when we've dealt with our father's passing and the miscarriages; I don't think I was ever this mad, scared or sad.  Add depression to that, too.  And I'm not even the person who is sick!!  I can imagine I'm not even touching what Andy must be going through in addition to the symptoms of his illness.
One of the many coordinators at Dana Farber has given us a notebook that has the three phases of dealing with Stem Cell Transplant.  The BEFORE, the DURING and the AFTER stem cell transplant. (or bone marrow in other cases).  All the stuff that has to be dealt with before, all that has to be dealt with during and after is so overwhelming.  In my effort to prepare myself and Andy, too...I had to go and read this notebook. After I read it I was so sad, so depressed.  The reality is grim.  There is no false hope in there other than their saying...'take one day at a time'.  Then Andy received this book in the mail from The MDS Foundation that he sent away for.  It's called '100 Questions & Answers About Myelodysplastic Syndromes'.  I read most of it that pertained to Andy's situation.  There is hope that the stem cell transplant can cure Andy's disease...a small  seed of hope, but hope nevertheless.  After reading that, I felt a little bit better.  But then, I'll think of this or that, that Andy has to endure and all that we have to do to prepare our home for his return and all that we have to do to change our ways to ensure that he doesn't get sick in the years following his transplant.  It's going to be real hard to change our ways.  But we have to do it real soon.  I tend to get real tired and drag my feet when faced with a problem that feels overwhelming.  Let me tell you, right now all I want to do is sleep.  I don't want to face this anymore.  I want everything to get better and stay better right NOW!!  But that isn't going to happen.  So, here's where the positive thinking comes into play.  I have to find a way not to think so hard on the tough stuff and think more on the way I want this all to turn out.  I want my husband well and to live into his later decades like we all imagine as we are growing up.  80, 90...that's okay...but in his mid 40's...no way...no frickin way!!  I refuse to keep thinking he's going to die.  So, I'm going to be there for him as he deals with all the aches, pains and illness of what he's about to go through and help him get better...help him help his body to heal and be cured from this awful disease.  When I picture us..I'm going to picture us as old people sitting on our rockers on the front porch....cackling at what 'bastards' and assholes' are around us. :)  I'm going to picture us sailing through this process with the most minimal side effects.  He's going to be the exception to the rule.  I think..in small hindsight...that the majority of what's written about MDS has to deal with the folks who are older..in their 70's and 80's..who get this disease and they are unable to get the stem cell transplants, etc.  It's a very tough journey for most. While it is most certainly going to be a tough journey for Andy, myself and our family...we're going to get through this with flying colors!!!  Damn straight snippy!!!

the emotional aspect of dealing with an ill spouse and parent

Now, I've been stressed.  We've had such a full plate for quite some time.  My mother is 72 now.  In spring of 2008 I remember my mother calling me and mentioning that her legs weren't working like they were supposed to.  Like one of her legs were dragging and heavy.  She mentioned she was going to see her doctor about it and we kind of left it at that.  My mother, at that time, lived in North Carolina in an apartment by herself, near her sisters who lived in neighboring towns.  So, I would talk to her on the phone once or twice a month.  I didn't hear much about her situation again until shortly before she came up with my aunt and uncle to visit.  My Aunt Lu (her sister) and my Uncle Marty were coming up to go to a reunion so she was going to tag along and visit with us for a couple of days.  She gets to our house and wow...what a surprise.  My mother went from this older woman with energy and spunk to this woman who moved slowly and couldn't talk very well and just to sit down it took a minute or two for her to get her legs to bend at her knees so she could lower herself onto a seat.  She had trouble forming what she wanted to say and she talked very softly.  There was worry that she had cancer. So, I sent her back home with my aunt and uncle with the promise from her to see her doctors and get down to the bottom of this.  It's easy to forget the seriousness of things with other people when you don't see them and she didn't talk much about it to me on the phone and if she did she didn't really get into it and how bad it really was getting.  I imagine she didn't want to worry me or any of my brothers.  So, fast forward to December and I get a call from my Aunt Pauline, my mothers other sister who lives nearby my mother.  She tells me that my mother is real bad.  She thinks she's dying.  I have to get down there and do something.  So, I call my brother Liam and we form a plan to drive down there and bring her back to my house and I'll get my mother seen by my doctor so we can find out what's going on.  But we manage to get my mother on a flight up to Boston and I'll pick her up.  She is so bad that she needs a wheel chair to move about the airports because she just can't walk fast and she doesn't have the energy to move much.  I am shocked but hide it.  She comes to my house and we get her into see my doctor and my doctor, Dr. Fuller, thinks she might have Parkinsons.  She refers her to a neurologist at the Worcester Medical Center.  She manages to get my mother seen before she has to leave to go back home on Jan 8th (the day after Ben's 2nd bday).  So, we go to see this doctor and he confirms that yes, she has Parkinsons or he believes she does by her symptoms.  He prescribes medicine and she goes home.  She's going to move back up to Massachusetts and live with me and my family.  We move Lauren downstairs into the finished basement, with Jenny and my mother will take Lauren's old room.  My brother's Liam and Ray move her up here..driving a UHaul truck and her car all the way.  When she walks through the door it was like night and day.  She was moving, talking and thinking so much better than when I'd seen her less than two months before.  But you have to understand what it is to worry about your parent.  You go through your life counting on your parents to guide you and worry about you and then when the tables turn, it's stressful beyond belief.  You are now the guide and worrier.  My father had passed away the year following my marriage to Andy (1998). so I didn't have to worry about him and when he was ill, I was living almost a 100 miles away and so was removed from it.  I wasn't that close to my dad so it didn't have this huge impact on me like this was with my mother.  I felt like a weight had now settled on my shoulders.  Don't get me wrong; I always knew I'd be my mother's care giver when that time came.  I just couldn't picture any of my brothers taking that on.  I just never thought I'd have to worry about that until I was at least well into my 50's at the earliest.  This all started in my early 40's after having just given birth to our youngest child.  So, not only did I have my two girls and a new baby and my husband to look after, I now added my mother to the mix and I felt adrift; not quite sure how to go about this.  But, her having started that medicine (carbidopa-levodopa) was really working for her. While she was with us in December, she'd fallen a couple of times and that was very alarming.  She was walking and her balance was so much better than in December.  I felt somewhat relieved and felt I could take a step back a little bit and she could take care of herself for the most part.  We, over the course of the year and a few months, had gone back to the neurologist, a couple of times because it seems that the medicine will stop working at it's current dose over the course of three or four months and she'd get to moving slow again and feeling ill.  She was starting to lose faith in this doctor because it just seemed he didn't care.  She was just a patient and he made his money by her and that was it.  I don't blame her.  He was one of those doctors who asked questions but didn't really say much or answer questions well.  In June of 2010 our landlord of the house we'd been renting over the past 6 years said that he wasn't going to renew our lease. So we worked out a deal with him that we'd try to find a place over the course of the following 5 months.  We managed to find a place for us to move in on Sept 1st.  At that time my mother was having issues with her balance again and she really didn't want to see this neurologist again.  So, the last week of August we were moving some totes into the new home.  I was outside with my husband when his friend, Don, who was helping us move the totes over to this new house, said that my mother had fallen on the stairs.  We run up the stairs to find her struggling to get up at the top of the stairs.  Apparently she had tripped on the last step and fell into the corner of a bedroom door to her left, splitting open her forehead.  She'd also held onto the banister and managed to wrench her shoulder as she tried to keep herself from falling.  I rushed her to the local ER.  Thankfully she didn't need any stitches and she didn't have any concussion or internal injuries.  We brought her home.  But now her shoulder was very sore.  A visit to her doctor had her with appointments with a physical therapist.  Then it was moving day.  Thankfully it went off without a hitch.  But I'm telling you..since we've moved in..we've had one friggin thing after another.  The first couple of days we can't get the heat downstairs to turn off.  It's 90 degrees out and the heater is making it like 100 degrees down there...it took almost a month to get an electrician over here to hook up a new thermometer.  In the meantime our landlord has us turn it off via the main electric box. Two weeks after moving in..we have the bathtub and toilet overflowing with waste b/c apparently there was a blockage out under the road in front of the house.  We had to call the landlord (who is living in India)...we get RotoRooter over here and after two days they find that there's a bow of the pipe line that is making it easy for things like grease to build up and cause the blockage.  Okay...we dealt with that. Then Ben somehow gets into my mother's pill box and three of her Parkinsons pills are missing.  We know he had something in his mouth but we don't know if he ingested all three or just one.  Called the poison control number and they say get him to the ER stat!!  So, we bring him over there and spend hours there, having him drinking chocolate laced charcoal to help get rid of the toxin.  He didn't show any signs of overdose or anything , thankfully, but what a day.  The next thing was my mother.  She'd been having pains in her upper chest area under her right rib area.  I had had my gallbladder out in 2002 and had been having gallbladder attacks for over a year before it was discovered I needed my gallbladder removed.  So, I knew about that kind of discomfort. As Thanksgiving approached in 2010 my mother seemed to be having small attacks on a daily basis.  She started altering the way she ate in an effort to alleviate her symptoms; the pain under her ribs and nausea.  She even stopped drinking coffee because it seemed to set off the pain.  November 23rd she felt especially sick and kept to her room most of the day.  She tried eating dinner that night and decided to just go up to her room and try to rest.  Around 11pm that night, she came downstairs saying she thought she was having a heart attack and that the pain was excruciating.  I called 911 and had an ambulance come and get her.  Thankfully Andy was home so that he dealt with the kids.  As we were waiting for the ambulance I hurriedly pulled on some pants and a shirt since I'd been in my nightgown.  I never dressed so quickly.  Within five minutes they were all here..lighting up our street.  An ambulance, a fire truck and at least two police cars with their lights on.  Sigghh...such a production.  Well, they loaded her up in the ambulance and I followed over.  The ER folk wouldn't let me go back to see my mother 'until she was in the system'..frickin a...I was trying to be understanding but all I could think of was how upset she must be being all alone and all...well, without me that is.  Finally they let me back there and she is still in a boat load of pain.  She kept moaning; real loud too.  The doctor was really an intern and he had her go pee in a cup and then took some blood.  Anyone experience how incredibly slow the ER can be unless you are dying on them right then and there?  Jeesh.  Hours go by and finally the doctor comes back and says well, nothing is showing up other than she has a bladder infection which can sometimes get bad enough to cause that kind of pain.  Did you know that a kidney infection is still called a bladder infection??  How stupid...a kidney infection is just shy of some serious shit..like close to deaths door..it's like they downplay it or something.  Well, anyway, just before she was discharged this twerp of a doctor comes back with this lap top like ultrasound machine and tries to see her gallbladder.  He says he can't see her gallbladder and that she should go to her doctor if she continues to have the pain.  It so happens that this was Thanksgiving weekend so you couldn't get an appointment, they sent you to the ER if you felt badly enough..sigghhh.  So, we were practically pushed out of the ER...I had to bring my mother to the entrance in a wheel chair...it was kind of like they were saying 'don't let the door hit you in the ass on your way out'.  So, we go home in the wee hours of the morning.  She is tired from the meds they gave her and went to bed right away.  I do too.  Thankfully it was a vacation from school for Lauren too so I could lay in bed.  I think Andy stayed home that day but I'm not sure.  Anyway, we don't do anything real special for the actual holiday because my family (brothers, their spouses and niece and nephew) were over the house the weekend prior to this for dinner then.  So, Thanksgiving I made a small turkey for our little group but Mom ate very little.  She wasn't as in that much pain as the previous night, but she had a lot of pressure in her mid section and she felt nauseous when she ate or drank.  I made sure she was drinking and tried to get her to eat little bites of anything.  The next day was Friday so I called the doctors office.  The office was closed and there was an on call doctor.  He prescribed a antacid med and when I said she's in pain for Christ's sake...they were like..well, ibuprofen if it's really bad.  Grrrrrrr....so we gave that a try oh yeah..she had antibiotics for the 'bladder infection'...later on that day though, the hospital calls to say that her infection was antibiotic resistant and she needed a different kind of antibiotic..so they prescribed that and off to the pharmacy I went.  I noticed Saturday that she seemed to be jaundice but I couldn't be sure.  The light in this house isn't the best and she seemed to be okay other than she was nauseous all the time.  She'd eat a bite or two and then throw it back up.  I was getting real concerned.  For some reason though, it didn't occur for me to bring her back to the ER.  I should have in hindsight..as soon as I thought she had jaundice.  Anyway, my brothers Liam and Shaun came by for a visit and I made some turkey soup from the leftover turkey carcass; thinking the broth would help her feel better.  By Sunday evening she was pretty jaundiced and dumb idiot that I was I said, lets wait till the office opens tomorrow and we'll go see Dr. Fuller.  So, Monday we went to see her in the mid afternoon hours.  My mother was positively glowing by then and still having a lot of pressure pain and nausea.  She sent us to the ER immediately..but this time to the Memorial campus ER instead of where that twerp was...if I had seen him then I would have knocked him flat b/c all this would have been averted if he'd just had her get a ultrasound from the big machine instead of that dinky thing that he clearly didn't know how to use very well.  Let's just say; I will never go to that ER ever again..they are incompetent idiots there.  So, we go down to Memorial ER and she gets taken right away.  Many, many and many more hours go by...I was there 6 hours before they finally said (after many tests and an MRI and ultrasound) that she had a blockage in her bile duct of her gallbladder leading to the liver.  She was admitted to the hospital.  Apparently a gallstone had lodged itself in that bile duct which is probably what caused that horrible pain she was in that night the week before.  What happened is that now all that bile was backed up in her liver and had no where to go and it became infected.  So, her gallbladder was infected and now her liver was too; it had a couple of cysts in it that were infected...a real mess.  I didn't realize just how close to being deathly ill she was.  It took the hospital/doctors a day and a half before they finally did a procedure (which name escapes me at the moment) where they went down her throat, through her stomach, through the small intestine and up into the bile duct...so they could dislodge the stone, remove it and then put stents in those bile ducts to prevent any more stones from lodging there.  Because of her liver infection she couldn't have the gallbladder out right away or there was a very high risk of infection to other organs.  So, the biggest thing was to get the raging infection under control.  It proved to be very resistant to antibiotics.  Finally after a week of trying different antibiotics they were able to find one that worked.  Her jaundice was disappearing and she was feeling more energetic and able to get up and walk around.  After almost two weeks of being in the hospital she was discharged with the instructions that she had to give herself shots to thin her blood..the infection was causing blood clotting..and she had to take an oral med (but that escapes me what that is).  Because it was such a resistant strain of infection; she had to have antibiotic infusions..so in other words...she had to go to their infusion center every day to have antibiotics administered via IV.  That went on for a month when she went to see the infectious disease doctor (she had several doctors...infectious disease doctor, doctor who did the stents, and doctor who was going to remove the gallbladder) to make sure all the infection was gone.  She had an MRI done a few days before...but she still had infection but it looked like the infection was getting a lot better so they deemed that she could stop the infusions and could take oral antibiotics instead.  That went on for another month...meanwhile she met with the stent doctor who said she had to have another procedure to take out the first set of stents to replace them with longer lasting stents.  These stents would stay in until she had her gallbladder out.  Once she had it taken out then this doctor would schedule a time when they would take them out.  She also met with the doctor who was going to take out her gallbladder and he was like...have to be absolutely clear of any infection before he would do that.  So, Feb 22nd she had new stents put in and then she saw the infectious disease doctor after another MRI and they declared her cured of all infection.  This is when this doctor showed us the original MRI and the stone that was blocking her bile duct.  I asked if that was actual size and he says..yes...folks..that 'stone' was the size of a small marble!!  No wonder it was so painful..it's amazing she survived that.  So, once she was declared cured of infection, she was able to schedule her gallbladder removal which as in previous post, I mentioned it was March 28th.  Now in the meantime; we asked Dr. Fuller to recommend her to a new neurologist.  She referred her to this woman doctor down in Hopedale..about a 1/2 hr drive from here.  She said she was real good.  Well, her first appointment was in Feb sometime and we sat in that waiting room for almost two hours before we had to leave.  I had to pick up Lauren from school, although i can't remember why, so we left the doctors office without seeing the doctor.  We went back a month later and was able to see her but after waiting another hour before seeing her.  She seems like a real good doctor but she has no problem with making people wait.  We were in her office for at least an hour talking with her.  I felt bad for those waiting in the waiting room.  My mother has a big problem with being able to sleep which is an issue that people with Parkinsons deal with.  Nothing seems to help.  She prescribed another pill that should have helped but it isn't. She's still having issues with not sleeping over night.  She used to be up by 7 or 8 a.m. every morning but now I don't usually see her until around 10 a.m. unless she has an appointment somewhere.  One pressing issue is that my mother has high protein levels which can be an indicator of some kind of cancer somewhere in her body.  The year before she moved here she was seen by an oncologist who did all sorts of tests but couldn't find any cancer.  Some older folks just have high levels of this protein and it could be decades before it progresses to anything like cancer.  There's a name for it but I'm not sure.  So, her new neurologist insists that she be seen by another oncologist just to be sure but my mother has put it off till this July.  Frankly...it's a good thing because I have enough on my plate with Andy being sick and all.  I probably will handle it, but if she's sick too...well she is with Parkinsons, but if she has cancer on top of that and..well, that's just so much to deal with.  Now on to Andy...my hubby...my world...my rock.  This whole thing has just turned my world upside down.  I normally am not so weepy and all but the notion that I could lose my husband before we both are old and grey is just too much.  I find myself wanting to curl up in a ball and just bawl my eyes out.  I'll be driving in the car or watching tv or reading and I will be overcome with the need to cry and I'm so sad.  I am trying very hard to be strong for him.  I'm succeeding for the most part but this 'weakness' just hits me sometimes.  I guess that's normal but it sucks.  Big time.  We have been through so much in our little bit of time together.  We've had 3 miscarriages, two births, a death(my dad and two years later, his dad), two moves, I've had two surgeries, Andy has had two shoulder surgeries and a tumor removed from his breast which was thankfully benign...my mother and my brother Shaun moved in and then they moved out, we had to declare chapter 13 bankruptcy (still paying that off)then my mother moved back in and Andy just had another shoulder surgery this past December, then my Mother's illness/hospital stay and now this with Andy.  I don't know how I'm going to handle the upcoming months, but I know that I'm feeling very adrift.  I am determined though, to imagine Andy as an old man, the two of us sitting in our rocking chairs doing 'our thing'.  :)  He and I get annoyed with people and he'll say "Bastards!!" and I'll say "Assholes!!". :)  We're joking around more often than not, but it's usually Andy trying to take the sting out of a moment.  He's so good for me.  He makes me laugh when all I want to do is yell or laugh or cry.  He has always been an active participant of our household.  Cleaning, changing diapers, taking baby duty or now toddler duty on the weekend mornings.  Working from home when I'm not feeling well or haven't slept much the night before.  We have our moments though.  I annoy him or he'll annoy me..just like any other relationship.  But at the end of the day, we never, ever forget to give each other a kiss and hug goodnight and an I love you and sweet dreams.  This challenge that we are facing is turning our world around and nothing will ever be the same.  It sounds dramatic, but it's the truth.  He has a huge mountain to climb and there might be times when he actually falls back.  I pray that I'm to the task of keeping him going and getting up and over this mountain.  Over the coming months I'll post about the physical and emotional aspects of dealing with this horrible illness.  I know that things could be worse...I just hope it never gets to be that way.  Andy says I'm his rock and I honestly don't feel much like one now; but somehow,  I will do my best to live up to that.

the beginning of our journey-a long winded blog ;)

My husband, Andy, is a man's man.  He's a no nonsense kind of guy.  If he has a pain; so what?  Life moves on, so does he.  So, for many months he dealt with the pain in his hands.  He dealt with the lack of energy.  Thinking that yeah, he's getting older and maybe what one doctor once said..."you are getting older and you'll have aches and pains"..or something along those lines.  So, months went by before he finally made an appointment with his primary care doctor.  He had an appointment for March 1st, 2011.  He told his doctor all about his sore hands and how it feels what arthritis might feel like.  She decides to do a blood test to see if he has rheumatoid arthritis and she must have ordered a complete blood count while she was at it.

So, that Thursday, March 3rd, we're sitting in our living room at the end of the day when his doctor, Dr. Erban, calls.  He starts off joking but as the minutes ticked by and he's listening to what she has to say he gets serious.  She says that his blood counts, all of them, are very low and that he needs to have his blood counts taken again. Andy happens to have this huge project at work that he can't get out of; it's set in stone and people are counting on Andy to do his part so that all will work out in the end.  He has to work that Friday and that Saturday so he can't do this blood work until Monday.  She reluctantly says okay and that's that.  I take him early that morning so that we could get other errands done.  I remember it was misting out that day and very chilly.

Andy has an appointment with a Dr. James O'Shea in Worcester, MA.  He's a hematologist/oncologist.  We're like, unhhhhh...cancer???  The dreaded 'C' word.  We kinda figured that there was something along those lines when he spoke with Dr. Erban, but no one was really saying, so we were in a kind of limbo.  Waiting...the dreaded "W" word.  Don't you hate waiting?  I hate waiting.  It seems like that is all I do. Wait for pay day, wait for the kids to get off their butts and do their chores, wait for someone to wait on you at a restaurant, wait in line at the post office....waiting...a fact of life.  So, he and I wait to see this doctor..never mind hematologist...the title that stands out is ONCOLOGIST.  CANCER....just kind of floats around in our universe while we try to live our daily lives.  Get up, go to the bathroom, take a shower, make the bed, get the kids up, go to work.  Finally, even though it was only two days from Monday, it felt like an eternity.  Andy and I go in to see Dr. O'Shea after spending the morning going to the furniture store to buy Jenny her new bed (actually put it on layaway) and buy a new kitchen table and it's chairs.  We have a dining room table but the house we are living in, it has wall to wall carpet in the dining room.  We can't move the chairs freely so it's a pain in the butt to sit at the table.  So, we decided to get a smaller table and put it in the eat in kitchen.  This way we can eat at the table instead of in the living room like we'd been doing for almost as long as we've lived here.  After that we make our way over to a restaurant for some lunch.  We have our girls, Jenny and Lauren and our Ben with us.  Ben is not a very good little boy in restaurants.  He won't sit still and it's touch and go as to whether or not he'll eat his food..a waste of money as well as food.  We end up having Andy wolf down his hamburger and take Ben for a walk while the girls and I finish up and settle the bill.  We meet over at the Paper Store because I'm looking for a nice eyeglass case.
So, after all that, it's getting real close to time for Andy's appointment with Dr. O'Shea.  We drop off the kids and head on over to Worcester.  It's a beautifully decorated office.  It even has a water feature.  I've never come across such a nicely decorated doctors office ever.  Leather seats, music.  All to take your mind off your troubles maybe?  I don't know.  It was a nice change from the sterile and neutral waiting rooms I've been in.  Andy checks in and then we wait.  Dr. O'Shea is apparently running behind.  This practice has it's own lab and it's own infusion center.  So, the lab tech comes out and takes a couple of vials of blood and he's back in the waiting room.  Now we wait for the nurse to come and take his vitals and then we're shown into this very small exam room..but they have lots of pictures on the walls and they keep the doors open (unless you need privacy for changing, etc).  I think we were there for an hour or more before Dr. O'Shea comes in the room we're in.  He is very soft spoken and has lots of energy but is somewhat laid back and nice..not that cold arrogance you can sometimes (more often than not) encounter from specialists.  He explains that yeah, it seems that there are issues here but without further testing we won't know for sure.  He wants to do more bloodwork.  So, come back next week and we'll go over the results.  What is it I hate...WAITING...we have to do more waiting.
So, we do more living of our lives while we are emotionally sitting on the edges of our seats to figure out what is going on.  A whole week seemed to drag its feet.  Then the day was here..the results day. Oooohhh...dahn dahn dahhhhhnnnn!!  This time we had to bring Ben with us.  He knows how to work that room.  He has everyone eating out of the palm of his hand.  Charming people with his chatter.  We brought a little note pad and pen so he could draw and brought his sippy cup and he's a happy camper.  We don't have to wait as long before the lab tech comes along to take Andy's blood.  And we don't have to wait too long before the nurse comes to take his vitals and brings us to that same little exam room.  Ben is interested in every thing.  He's our very own Dennis The Menace.  He has to touch everything!!!  If there's a button to be pushed..he'll do it.  Anyway, he keeps us busy while we wait.  Finally the doctor breezes in and is of course charmed by our charming little boy.  (I hope he never loses that...I hope he's always outgoing).  Anyway, Dr. O'Shea gets down to business and says, well they ruled out a lot of things that could cause these blood counts being so low.  He does not have multiple myeloma..which we were worried about.  Sigghhhh..BUT..wait...you want what???  He wants to do a bone marrow biopsy.  Hunh. :(  Not crazy about that.  I'm positive that Andy, while not knowing exactly what will happen, has an idea of what'll happen and it sounds like it'll hurt.  So, we're to go back the very next day.  Oh joy.
I look it up on you tube..surprisingly..there are video's of people getting bone marrow biopsies!!  NOTHING is sacred (this is something my mother used to say as my brothers and I were growing up..I find it ironic that I'm actually using this little saying..lol) these days.  Anyway, it looks painful.  I feel for Andy and I wish that he didn't have to do this.
We go back to Dr. O'Sheas..this time without the boy.  I am anxious for Andy and I am pretty sure he's not thrilled.  He knows that pain goes along with this test but no one truly has an idea how painful until they go through it.  It's like giving birth..raising kids...you have no clue until you do it.  Any way, it was upsetting for me but I think traumatic for Andy.  He is told to lay on his belly and has to lower his pants half way down his butt.  I was initially told to go out to the waiting room.  I'm like...ummmm NO!!..I'm here for my husband.  So, they keep me down by his feet.  I want to go up by his head and hold his hand but there seems to be an invisible wall if you will..that the doc doesn't want me up there.  Okay..at least I am in the room with him.  I hold onto his calf and let him know that I'm there.  The doc gets down to business.  He rubs the back of his upper butt..this is the location of where the rim of the back of the hip bone is.  The process is that they will numb the skin so that the doctor can make a very small incision.  Then they take another needle and the doctor kind of bounces the needle off the bone several times while injecting the numbing medicine onto the film like layer around the bone.  Thing is, you can't numb the actual bone, hence the pain that happens.  After the doctor injects the numbing medicine he takes this auger of sorts...he inserts this into Andy's hip bone and with a long needle he withdraws several vials of bone marrow.  Then they put some of that onto slides.  Once that is done he takes this part out of that and it becomes this hollow tube that he pushes into the bone..Andy is practically taking apart the top of the table. I imagine it was real painful.  The doctor meanwhile is pushing this thing into his bone and he then quickly withdraws it..very abruptly.  Andy almost went flying off the table.  He said it was a pain that was beyond all pains.  I didn't like that...could have killed that doctor right then and there if it wasn't that Andy needed me to be calm.
They put a bandaid on the incision; that's how small it was.  And then he gets up off the table, feeling very uncomfortable.  His hip must be real sore.  So, we are told that we have to WAIT 14 days....FOURTEEN DAYS!! for the results.  Sigghhhhhh.  Have I mentioned that I hate waiting??
We leave and now we have to live our lives while waiting.  It just so happens that Andy and I decided to go away for the weekend.  My mother is having surgery to remover her gallbladder (there is a huge amount of drama before all this regarding my mother..so there is some stress but also relief that this is happening.  I'll explain as time goes on all that has gone on regarding my mother..who happens to live with us.) removed on the 28th, so we needed to do this sooner rather than later so that she could help take care of Ben and Lauren.  Jen being the primary babysitter..well, I should say my mother was really.  But..anyway...so after his bone marrow biopsy on the 16th we left for Mystic, CT that Friday..the 18th.  We rented this car..lol..an upgrade got us this HUGE Jeep..Wrangler I think..4wd..lol..it was like driving a friggin tank!!  Anyway, so we made our way down to Mystic in the afternoon, after Lauren got home from school.  We got down there and checked into our hotel and decided to go out for dinner at the place next door.  Looking at me, you'd know I like food.  I especially like this new trend of restaurants (it's new to me anyway) of their making their own potato chips.  We ordered their homemade potato chips and fried whole clams.  Very good.  After that, we went over a couple of towns to the local movie theater.  Andy had his new computer like toy..a Xoom..it has GPS so that we can see where we are and it can tell us where we need to go.  A very handy tool when you are someplace you do not know at all.  We went to see 'Paul'...a very funny movie ...I recommend it to those who need a laugh. Although...it does have a lot of swearing in it.  After that, we dropped by the store for some soda and milk and made our way back to our hotel like any other fuddy duddy middle aged folk. :)  Andy was pretty tired and so was I for that matter.  We just hung out there, watched some tube and went to sleep in a very comfy bed.  The next day was spent at the casino (his Xoom got us there via some very scenic back roads)...blew a few hundred bucks on the slots and had a nice salad at the Hardrock Cafe...We made our way back to Mystic and tried to see the shops at the Mystic Village but they closed early.  We had a nice dinner at this steak place and back to our room again.  Like I said..fuddy duddies..but we are okay with that. ;)  The next day we were going to walk along the historic part of Mystic...like over by Mystic Pizza...but apparently they were having their St. Patricks Day parade that morning..no place to park and all the shops were closed.  So, we settled for the Mystic Village..buying souvenirs for the kids...then we thought, lets just go.  So, we left.  At first we were going to go to Providence to check out this restaurant I'd heard about but decided mid way to just go home.  Both Andy and I were pretty tired.  And I missed our kids.
We got through that first week okay...time dragging.  Then my mother had her surgery.  Then it was results day.  We had Ben with us again.  This time he had a toy with him that he was determined to have all the people waiting in the waiting room play with him.  They didn't seem to mind, if anything they were charmed by it and very patient with him.  Andy gives his blood to the lab tech and then the nurse comes and gets his vitals.  We had a very annoying moment there when she brought us into the exam room, in a distracted way, she looks down at the lab sheet and says.."oh, we need your weight because you'll be getting chemo"...um..jaw dropping moment there and I was NOT happy that she was so indiscreet.  Andy was ticked too.  Really...this woman goes and says this??? Obviously she was not thinking.  Dr. O'Shea walks in and trust me when we let him know.  He says, well, you don't need chemo but here it is, your situation.  He says to Andy that Andy has Myelodysplastic Syndrome with a 1 trisomy and a 1,7 dislocation or some word like that.  There are also mast cells in there that shouldn't be.  Myelodysplastic Syndrome is a bone marrow disorder where one or more of the blood cells are not being produced normally and in low amounts.  As it happens, Andy has all three that are low.  The red blood cells, the white blood cells and the platelets...all low counts.  The chromosomes 1...it is making three instead of just the two and sometimes one of the #1 chromosomes are not fully formed and some of the #7 are not fully formed and his bone marrow is fixing it by attaching the half #1 and half the #7 together...um..not good.
So, Dr. O'Shea says, you know, I know this real good doctor over at Dana Farber Cancer Institute in Boston.  Dr. Joseph Antin.  I'd like you to go see him and let's see what he has to say.  I'd also like you to get a CT scan and lets see if there are any issues with any of the organs and your lymph nodes.  I'll see you in two weeks..we'll do more blood work to see how the levels are going and we'll get you set up with Dr. Antin.  Okay...what are we doing...waiting...again.  Okay..so this seems to be the order of the day with this whole process.
So, we go home and inform family.  I'm sad to say that some family members are not bothering to say a word.  I get that some people don't know quiet what to say when someone is dealing with a very hard issue, but really...you'd think a brother would say...I'm sorry or at least acknowledge that they care.  I am feeling pretty let down and hurt by that.  I do have one brother who is very supportive and while he can't do much in the way of anything..he is here for emotional support and that's fine.  I'm not asking anyone to do anything..NOTHING...but after you grow up with someone, you'd think they would care enough to say something.  It's a whole huge issue with me.  I think if I were to continue to talk about this, it would be like opening a can of worms and I might not be able to stop.
Now, two weeks can seem like two years and that is just what was going on here.  Unfortunately, Lauren and then Ben became sick with the nora or rotovirus.  Both had high temps and throwing up and diarrhea.  Poor things.  They were so sick.  It lasted about two full days for Lauren and then for Ben it lasted almost four days.  He had to be back in diapers because the pull ups just weren't designed to hold basically water BM's.  That caused me to fall ill.  Thankfully it was not as bad as the kids.  It lasted more like a day and a half and while I had a temp it wasn't as high or for as long.  My mother then became ill with it.  Her's lasted about a day and it seems that Andy and Jenny escaped it.  Thankfully.  Last thing we need is for Andy to get sick and Jen needs to go to her job or they'll get on her case and possibly fire her.  She doesn't work much or for much, but it's still a job and gives her a little bit more freedom to do things.  That's a whole other story...lol.  That pretty much took up the second week of waiting.
April 12th  was here.  Our first appt for the day was with Dr. O'Shea.  I was a bit confused as to what our course was going to be.  I didn't know if Dr. O'Shea was going to be treating Andy or was Dr. Antin treating Andy?  I asked and his response was that Dr. Antin was a second opinion and if there were transfusions/infusions kind of thing, then Dr. O'Shea would deal with it and if there is transplants, then Dr. Antin/Dana Farber will be handling it.  Andy gave some blood again and his red blood cells and his platelets seem to be holding steady but his white blood cell count went down a little bit more.  We didn't discuss much other than..okay..what kind of MDS are we dealing with here and I don't think we got a real straight answer from Dr. O'Shea; I think he wants Dr. Antin to be the foremost authority on diagnosis and treatment.  And he let us know that the CT scan didn't show anything to worry about.  Andy has a couple of spots on his liver but it doesn't look to be anything of concern.  Well, okay..so then lets go!!  I like Dr. O'Shea..seems like a nice man, but lets not mess around here.  Tell it straight!  One thing he did for Andy was give him a prescription for Oxycodone to help with the pain in his hands and other joints.  We left the office and went to Stop and Shop and they say...nope..they don't have that and it'll take a couple of weeks to get any in and no other Stop and Shop has any.  Well..effin A!!  We figure we'll just stop at Walgreens on the way home and lets hope they have it.  So, we decide to go to lunch before our appointment in Boston with Dr. Antin at the Dana Farber Cancer Institute.  We spend just the right amount of time and make our way to Boston.  We take the Mass Pike on over there and well, Boston is a very busy city..lots of people, lots of cars.  I'm not crazy about driving in stuff like that, but it is what it is.  I have written directions and Andy has his Xoom.  We get there an hour early.  So we decide to hang out in their atrium like area on the main floor.  I read a book and Andy plays with his toy Xoom. :)  Before we know it, it's time to go up to register Andy in.  That was done pretty quick too.  The only form we filled out was the Healthcare Proxy form.  That's a huge responsibility, to be someone's health care proxy.  But, I know Andy's wishes if we find he can't make any health care decisions.  I just hope I am never in that position where I have to.
What was neat was that we were handed an itinerary.  It said we had our registration and then at 3 we were to meet with Dr. Antin this 'fellow'..Dr. um...jeesh...I don't know.  Begins with an 'S' and he seems to be of Indian or thereabouts ethnic background.  So, we have time to wait, we go up to their cafeteria.  Very well done.  I guess this building is pretty new so everything was pretty well decorated and laid out.  We sit down and then a few minutes before we are to head upstairs to see the doctors, Andy's cell rings and it's my mother.  **drama warning** The fire alarms are going off.  They are all hooked up to one another and all of them were going off.  My mother didn't know why or how to get them to turn off.  Okay...I say...after Andy hands the phone off to me; have Jen (she wasn't there at that moment..she was off getting Lauren from school...on her way back home) see if there are any batteries in any of the alarms and if there are, take them out!!  I also said..get outside so you don't go crazy from the noise.  So, we meanwhile, head up stairs.  We are waiting in the waiting area for Andy to be called when Jen calls and says she found one with batteries but even with them out, they are still going off.  So, okay..call the fire department, but their non emergency number..not 911.  She doesn't know how to do this..she's all in a tizzy...they ALL are in a tizzy.  Okay...get Lauren, Ben and Memere outside and the dog too...get in the car..and wait for the firemen.  Daddy will call them and see if we can get them over there to help out.  We get off the phone.  God Bless his Xoom...it allowed him to be able to find the phone number to the fire department without dialing 911.  He starts talking to them and what do you know...he gets called...so I explain to the nurse and we start our way to get his vitals taken.  He finishes his call and hands the cell to me and I call Jenn back to see what's going on and to let her know that the fire department is on its way.  We get off the phone and Andy is getting his vitals taken and then we're led to the exam room.  We're sitting there and the fellow doctor comes in.  He asks Andy all sorts of questions.  I got the impression he was tolerating me.  Very polite and keeping his emotions to his vest, but every time I said something, he got this look on his face like super brief..but I could see it.  That has me pulling back and waiting for something for me to feel like I'm not going to like this man.  So, he has Andy get up on the exam table and is doing his thing when Jen calls again and I have to start talking to the fireman.  Get this..okay..hold onto your pants now..and your socks...this might just blow them right off.  We have an entry way and just in front of the door is the stairway to the upstairs and under that is the stair way to the basement with the door on the other side of the upstairs stairway.  So, at least once a day, our dog Maggie, feels the need to pee on the tile there.  This house is not very plumb..so the pee will kind of run down to the bottom step and it..the pee, has soaked into the rug there.  But I guess what happens is that it leaks down to the ceiling below and it so happens that there is a fire alarm in that ceiling..under the entry way, in the basement and said pee liquid has....duhn, duhn, duhhhhnnnnnn...SHORTED OUT THE FIRE ALARM, causing it to go off.  !!@##$#$#@!!  Okay..fine whatever..but guess what said fireman says..well being in the basement, we can see that there's a problem with this flue.  (explanation: we have a wood stove in the living room that we have used most of the winter to offset the electric heating bill.  First time we used the wood stove the basement filled up with smoke and as it turns out there is an access to the wood stove flue down there.  The dry wall has a cut out there so I can assume it's so there is easier access to said wood stove flue.  Turns out that whoever cleaned said flue when the chimney was cleaned didn't bother to close the access door.  Once I found that out, I closed it and we no longer had a smoke issue.)  They think that because the dry wall has a cut out that smoke can be drawn down into the basement and causing a fire hazard.  I'm confused b/c, how so if the access door is closed?  It shouldn't matter if the drywall was sealed or cut out as long as the access door was shut.  But the fireman tells me on the phone that it might not be a livable property!!  We rent if you haven't figured that out yet.  Here we are, getting the news that Andy has a very life threatening disease and we don't know if we have a home to go home to!!  So, the fireman says they are getting a building inspector over and that person will determine if we can live here or not.  Mind you, our landlord rented out this house so he could go home to his native country..INDIA..because his work visa expired..he accepted a two year contract over there...we have two numbers of friends of his for emergencies..but they are unreachable!!  So, I get off the phone and explain to Andy what is going on.  The fellow doctor had left to go get Dr. Antin...while we are waiting Jen calls back to say the building inspector was there and they all looked around and then left.  Building inspector says we can't use the wood stove again until it's been dealt with and the fire alarms need to be replaced.  I get off the phone somewhat relieved that we still have a home and a few minutes later Dr. Antin comes walking in with a lady (who, because my mind was reeling, I have no idea what her name is..I even shook her hand and I couldn't tell you if my life depended on it!!)  Dr. Antin seems to be a nice man.   He explains that Myelodysplastic Syndrome is like a factory that has a wrench thrown into it.  He explains about Andy's chromosomes and when it comes down to it; Andy's version of MDS is on the higher risk level.  That being the higher risk of developing AML (acute myeogenous leukemia)  in the next two years, which would be real bad. Treating it with oral chemotherapy is usually used if there is more time..they do a wait and see approach; especially if the patient is older.  So, the course being that Andy needs a stem cell transplant.  To get that he is going to have to be admitted to the hospital and have both chemo therapy and radiation treatments to kill the cells in his bone marrow.  When we first heard of this, I suggested that his sisters get typed just in case he would need a bone marrow transplant or stem cell transplant.  They, Erin and Megan, both live in England.  So, Megan seemed to be starting that whole process on getting answers on how she and Erin could get their blood typed to see if they match Andy's bone marrow type.  Siblings, while the chance of one of them matching Andy is 30%, tend to match all if not most of the markers they need to match.  Dr. Antin says that Andy's insurance will cover the cost of the tests and procedures for any donor..they just have to pay for tranport and a place to stay.  Thankfully, Andy's mom Anne, says that she'll pay for any transportation..and accommodation? not sure on that one.  A load off our shoulders on that one.  Dr. Antin says that Dana Farber will handle all the arrangements for any donor..whether it be one of his sisters or an anonymous donor.  If either Erin or Megan are not a match, the national registry will be searched and if they can't find a match there they will use cord blood donors (blood taken at the time of birth of a baby that is donated and frozen in a donor bank).  Dr. Antin says now we have to decide, according to our lifestyle, when we think we can start this whole process.  It'll take about 6 to 8 weeks to find a donor...so..we're shooting for sometime in June.  We have to move on Sept 1st (this house has had one thing after another happen..plumbing..electrical..you name it..and the wood stove!!!), so we figure with the amount of hospital time barring any dreaded complications, he'll have been out of the hospital long enough to endure a move.   Dr. Antin says okay and he tells us our next step is to meet with this woman, Toni DeBeau..an RN nurse who will help us with coordinating all the things that need coordinating.  We shake hands with everyone and say good bye and they walk out.  We wait a few minutes and this very perky woman comes walking in.  We tell her our drama for the day and it has her laughing.  A good start to our meeting.  She tells us what needs to be done to start this transplant process.  Dana Farber has a department that handles just the donor process.  She gets the addresses for Andy's sisters (again, thankful to Andy's electronics..he gets my email on his blackberry and I open up the email I saved that had his sisters addresses and we can give them to Toni right away) and the donor department will send a dna kit to them.  It's basically consisting of four mouth swabs that they rub in between the cheeks and the gums of each side of the mouth up and down.  They, his sisters, will then send that back to Dana Farber for typing.  (those were mailed out yesterday and today respectively).  She tells us that Andy has to do that too and shows us this notebook that has all the information about the whole process from beginning to end that we get to keep.  Andy also has to have a complete dental exam b/c if there are any infection during the transplant process it could be deadly and if there are any cavities and what not, it could be extremely painful.  So, the order is to get all dental issues taken care of before any problems can occur.  Andy also has to give some more blood at the lab before we go.  So, we finish up with Toni and off to the lab and Andy gives up several vials of blood and then we can make our way home.
We stop off at Walgreens and drop off the prescription and go eat some supper and then it's home.  Everyone was tired and ready for bed really.  A very long and dramatic day so ready to be closed down.
Our next appointment is with Dr. O'Shea on May 3rd to follow up on what Dr. Antin had to say and then Andy has his dental appointment that day.  So that's it for now.  Thanks for listening!!!