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. :)