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!!!
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