Life in Albany

So here we are -- now at Albany Medical Center.  We met with our new doctor yesterday morning and Andrew was admitted last night.  Dr. E looks just like Lisa Loeb (for all you fellow Gen Xers), but she seems very thorough, so we're encouraged despite her youth and funky eyewear.  It's been stressful, starting with another new team, and they're still trying to gather info from all of our previous adventures. Don't get sick around the holidays -- it just complicates everything even more -- everyone is on vacation, no one knows where anything is ... Poor Dr. Liu doesn't even know yet that we're no longer in his care.  But we're in the hospital and Andrew has started the B cycle of his treatment, so everything seems to be on track as it should be.  At this point we're learning to go with the flow as much as possible.

 rock and roll 

The B cycle is more rituximab (wonder drug), methotrexate, and cytarabine -- some is IV, some is intrathecal.  This cycle is supposed to be very tough, but fortunately, Andrew is in much better shape than he was when he started the first cycle.  At WMC we were told that we would be there for 4-5 days, but AMC has told us 7 days.  The AMC pathologists will also be looking at the slides, so we'll now have 3 opinions on diagnosis, which I guess is a good thing.  Maybe one of them will be able to figure out the inscrutable McTiernan NHL.

Some good news .... the second bone marrow biopsy came back with "undetectable" levels.  It doesn't mean that there's absolutely no lymphoma present, but certainly a promising result after just one treatment!

I'll update more as we settle in here.  We hope everyone is having lovely holidays and staying happy and healthy!

xo
L

Guest Blogger: Andrew

Hi … this is the first time I read the blog … so many kind thoughts …. Thank you, it means a lot. I graduated from high school 30 years ago and to see so many familiar names from the past, wishing me and my family well was a lovely surprise. Brought me back to a time in the late 70's early 80's when it seemed so simple and ok. I guess that's why it's called home. Thanks NYC for the food, care and kind words. It's been a big help. And thanks to our friends in the Hudson Valley. The moment I got sick …. They made certain the fridge was full … the boys were cared for and the Christmas Season wasn't forgotten. Special love to Linda also. For me, it's a shadowy fog, and yet she's taken my hand and walked me through this. I hope everyone has a Merry Christmas and Happy Holiday Season.
Many Thanks,
Jay Andrew McTiernan

December 23, 2011 1:18 AM

Guess Who's Getting Coal In Their Stocking?

Our health insurance company, that's who!  Andrew has not checked into Westchester Medical Center for the second round of the R Hyper CVAD that's waiting for him, because our insurance company will not approve any further treatment, as WMC is out of network.  Never mind that he's in the middle of care for a complicated disease, or that we were given all indications that they would approve the rest going forward .... blah, blah, blah.  It' so boring and reprehensible, that I can't even talk about it anymore.  It's taken 2 very stressful days to sort it all out -- we are now being forced to start from scratch with our 4th hospital and third set of doctors. We next head up to Albany Medical Center (IN OUR NETWORK!) on the 28th to have yet another oncology office visit, and hopefully convince the doctor to admit Andrew immediately for his very overdue 2nd round of chemo.  I feel like one of those families that the politicians are always inviting to their speeches -- you know, the husband with two little children who has a deadly cancer, and the insurance company denies treatment right before Christmas Day?  That's us!

We have met the devil and her name is Vincristine.

As lovely as it's been having Andrew home, he has had a very rough time of it.  The last little pop of chemo they gave him before he left the hospital had some crazy awful side effects. You know, you can read about it to prepare yourself, but until you experience it you have no idea what's really about to happen.  I keep telling Andrew that it's only because he's so Young and Virile that they're able to subject him to such a torturous regimen, but alas, Vincristine has also dampened his sense of humor. ;)

He was feeling pretty good those last few days at the hospital, up until around the last day.  Although all of his blood counts were fine to go home, he started feeling pretty low with abdominal pain and fatigue.  It's continued in different ways with each passing day.  We were a little befuddled at first, as well as a little freaked out (I wanted to call the doctor at one point, but Andrew was convinced they'd put him right back into the hospital so we practiced some "watchful waiting"). After a little additional research we realized that he was still having after effects from the Vincristine.  According to the literature, Vincristine can cause fatigue, constipation, painful extremities, hair loss, nausea, mouth sores, metallic taste, mental confusion, insomnia -- all of which Andrew got to experience!  But the freakiest part (for all of you science weirdos) was the 2 days of non-stop urination that follows the death of a billion cancer cells.  I made a few trips to the store for gallon jugs of Gatorade to restore the balance.  I had to reread my own blog to find the part where Dr. W warns us of this happening.  Now we know.

The other news is that last Friday we saw our WMC doctor, (Dr. Liu) in his office for the first time.  Andrew had to have another bone marrow biopsy to see how that situation is all progressing.  He was absolutely dreading it after the first painful experience, but Dr. Liu appears to have the magic touch because it was pain-free this time.  Dr. Liu was pretty adamant that Andrew will have to undergo a bone marrow (stem cell) transplant after the 6th cycle.  The purpose of the transplant is to help prevent the lymphoma from returning.  The hope is that after the 4th cycle of chemo, Andrew's own marrow cells will be clean and can be harvested for the transplant.  The riskier path is to have matched donor cells used -- this approach tends to have more complications.  But they said he's already had such a dramatic response to the first cycle, that I'm very hopeful that his own marrow cells will be good to go.  We were hoping to forgo the transplant, but apparently it's not advisable due to the aggressive nature of his lymphoma. So that should be fun.  :(

The other interesting bit, is that the WMC team of pathologists, as well as Dr. Liu are a bit confused by Andrew's particular cancer.  They wanted to re-examine all of the pathology slides to confirm the Large B Cell diagnosis, because it still exhibits many characteristics of Mantle cell. Ultimately, Dr. Liu told us that they couldn't really confirm that it's one or the other with 100 percent certainty.  He said it's like 2 different lymphomas at once -- it has some of the markers of Mantle, and some of Large B Cell -- a very rare case.  The treatment is the same, so that's not at issue.  The pathologist has a theory that it began as a low grade, slow growing lymphoma that for some reason, one day turned very aggressive.  Dr. Liu, said he's not sure if he buys that theory, but they really don't know, only that it's very unusual.  Maybe his case will end up in some textbook someday ...

We're back to WMC on Tuesday to begin round 2, which is the B cycle (of alternating A and B cycles).  The nurse told us that the B cycle is "really intense".  Umm, you mean more intense than A?  Oh Lord.

Home

He's home!!!!!!!  After 5 intense weeks, 2 ambulance journeys, 3 hospitals, rivers of tears, and more tests and procedures than we can begin to count, Andrew is finally home. He's still weak and his immunity is very low (so unfortunately no visitors yet), but the doctors finally felt he was well enough to be discharged.  What an emotional and wonderful day!

Friday morning we will meet with our doctor at his office for blood work, and to schedule the next round of chemo.

Heartfelt thanks for all of the wonderful cards, messages, phone calls, food, and love!  We are so thankful for such support and affection!!

xox
L

PatiencePatiencePatiencePatiencePatiencePatience

Liver counts still too high, blood counts still too low ....

Hospital is starting to feel like prison.

Visiting Hours

I was finally able to bring the boys to visit Andrew today.  It was the first time they had seen each other in two weeks!  Uncle Chuck came along to share the fun.

Progress

My husband is back!  Well, not back home -- not yet -- but he's back!  He's feeling so much better, and it's just fantastic to see.  He's still weak and gets tired easily, but he's making phone calls, he's on the computer, he's walking around the ward, he's eating meals -- all things he was unable to do for the last month.  I feel such relief, and also amazement at this poison/medicine that works so quickly.  I was speaking to one of the nurse practitioners on the floor today, and she said that's one of the (only) good things about lymphoma -- it responds really well and quickly to chemo.

They're still loading him up pretty good with various things -- he has IV antibiotics every day, sometimes IV diuretics to flush the chemo through the system.  Today he had a few bags of platelets, one quick shot of chemo (15 minute infusion of a single drug called vincristine), plus IV steroids and an injection of neupogen (which stimulates the bone marrow to make new blood cells).  His liver function is improving everyday, and now we're just waiting for his blood counts to go back up.  The doctors told us it takes about 10-15 days for the blood counts to return to normal -- just in time for the next chemo treatment to knock them out again.  We're hopeful that they might let him come home for a few days next week, before he starts round 2.  He's going a bit insane being in the hospital so long, though the nurses all love him, (well except that one he yelled at -- but he didn't mean it, it was the steroids!).  He's really missing the boys and being at home -- we're planning a family visit tomorrow, which should help us all get through a few more days.

Romance

You might think that there's absolutely nothing romantic about cancer, but you would be wrong.  Though both Andrew and I would certainly take a pass on this whole experience in general, we have been able to find many positive moments .  No, really.  For example, we've gotten to spend a lot of uninterrupted time together during these long weeks at the hospital. During the first nine years of our marriage, we were together constantly -- we worked together all day, into the evening at the theatre, and then we would go home together to our tiny 3rd Avenue walkup.  After having our children we shifted into a more traditional, busy existence. We were recently spending an afternoon in his hospital room, reading the papers, watching TV, and I thought -- this feels like 3rd Avenue!  Cramped room, both of us sitting on the bed (because there's nowhere else to sit), just spending a quiet day together.  It was so great, and I realized how much I've missed that time with him, without even being aware of it.

People have reminded me to take care of myself and not get too over-burdened, but rather than feeling burdened, I feel very grateful to be able to help him through this.  I see many people on that oncology floor who have no one with them -- they are all alone, and it breaks my heart. I wonder, "how do they manage?  how are they getting through this dreadful thing without someone?"  Andrew and I have been married for 14 years, and though this is an unwanted experience, it also feels somehow like an important, natural part of a marriage -- helping your spouse through a terrible illness. There is another couple in the room next door, about our age.  The wife is sick, and the husband is constantly at her bedside.  I know he's there a lot, because I'm there a lot, and I always see him.  We're always passing each other in the halls as we go to fill ice buckets or flag nurses, or make trips downstairs to the cafe.  He doesn't seem to speak much English, but we always exchange a smile or nod in solidarity.  We both understand the bewilderment of being here at this point in our lives.

So tonight I got to shave Andrew's head -- and it was one of the most romantic things I've ever done. I know that sounds strange, but I was really glad to be able to do that for him.  The whole hair thing is a  huge part of this experience, because it's such a visual signifier of the disease.  We've made a lot of jokes about it in anticipation, but the truth is, whether you're a man or a woman it's a tough moment.  It's like Samson becoming completely vulnerable -- you really are a cancer patient now, and it's there for everyone to see.  Being able to help him through that was really great. We decided it seemed sort of pointless to wait for clumps to start coming out, so I brought the clippers with me tonight and we went to town.  Phase 1, and Phase 2 :

cycle 1 down!

One down, seven to go!  Andrew finished his first round of chemo -- now he's going through the after effects.  Though he hasn't been vomiting or had any really extreme reactions, he feels generally terrible.  Very expected and normal, as his blood counts hit bottom.  In a few days he should start feeling better as they build back up again, just in time for round 2!  We're doing lots of hand washing and mask wearing as he has no immunities right now.  Freaky.  The nurses are constantly around, hooking him up to bags of antibiotics.

The docs at WMC (there seem to be so many of them) want to keep him in the hospital for several more days yet, to monitor his liver function as it filters out the chemo. :(  Keep your livers in good shape, you all!
So he will have been 4 weeks in the hospital soon -- unbelievable.  Not a breath of fresh air in 4 weeks!  We're hoping though, that he'll be out soon and have about a week at home before he goes back for the next cycle.  He has to be admitted for each cycle for about 4-5 days, as this chemo regimen is very intense -- he needs monitoring and possible blood/platelet support throughout.  Kind of a drag, but a small price to pay for a return to health -- we're really learning patience. So our calculations put cycle 2 beginning around the 20th -- that's 4-5 days of infusion, which means the after effects should start around ... let's see ... Christmas.  Merry Christmas!


Andrew wanted me to mention that he's sorry he has not been able to look at emails or messages yet.  I've been passing along all of the good wishes, but he hasn't been well enough to get on the computer.  He really appreciates all of the care and support!

shock and awe

Yesterday Andrew and I agreed that I would take a day off from the hospital to spend some time with the boys and get caught up on things at home.  Nothing spectacular was going to be happening at the hospital -- he wasn't scheduled to do anything except sit quietly and have some more chemo gently coursing through his veins.  But any of you who have been following this blog know that nothing about A's cancer is ever quiet or smooth.  This morning when I arrived, I learned that yesterday had been what can only be described as the "shock and awe" portion of the cycle.  They just blasted him.  He's pretty sure he received a total of 11 bags of chemo yesterday (there aren't too many docs around on saturday, so I'll have to wait until Monday to find out the particulars). He said that he could feel every cell of his body just exploding. They don't really tell you any of this in advance, you see, unless you are knowledgeable and sophisticated enough to ask VERY SPECIFIC questions. I think they don't want you to know what you're in for, at least in the beginning.  All he could think is ,"I have to do this 7 more times?  Are you kidding?" Apparently, this is why hyper-CVAD R is only given to young patients.  The upside, he said, is that any sin he ever committed is gone.  That carcinogenic BBQ he ate last summer? gone.  That excess sun he got in the 70's? gone. Completely blasted away -- the ultimate Master Cleanse.  We thought it would be a very good business idea if someone could market a once-a-year, "clean out your potential cancers" chemo experience.  That would be such a hit with the Manhattanites! Of course, they would have to address the unfortunate hair loss issue.   Anyway ... between that experience and the various narcotics he's lately been on, he says he mostly feels like he's living in the film Yellow Submarine.  And, that he understands the universe on a whole new molecular level (I'll let you figure that one out for yourselves).

The bigger bummer is that it doesn't appear that he's getting out of the hospital anytime soon.  He hasn't been home in about 3 weeks.  They're giving him a break now, to monitor him while his blood counts hit rock bottom, then give him another bit of chemo on the 8th.  I'm so confused -- I don't know if that is part of round 1 or round 2, or what ... I'm planning to be at the hospital bright and early Monday morning, so I can talk with his doc, and ask some SPECIFIC QUESTIONS.  See?  I'm getting better at this.

Life in Westchester

Sorry i haven't updated recently.  I can't seem to access my blog at Westchester Medical (they have some sort of block on certain sites) and I've been staying overnight at the hospital frequently.

Andrew is on day 4 of chemo now.  He's responding really well to the treatment.  He had some very enlarged nodes around his chest that were making it difficult to breathe, but they are already shrinking and he's breathing easily.  The doctors are very pleased with his progress -- hooray!  He's getting a touch of brain chemo today as a preventive measure -- sounds dreadful, I know, but it's very important to prevent lymphoma from reaching the brain.  He's scheduled for 7 more cycles, 3 weeks apart, and will have to be admitted to the hospital for each cycle for 4-5 days.  This regimen is very intense and completely wipes out his immune system, so they need to monitor him very carefully during each cycle and provide support with blood or platelets if need be.  He's on a special neutropenic diet, which means no raw fruit or veggies, no sushi (poor Andrew), no takeout -- basically nothing that could have any sort of bacteria at all.  It kind of reminds me of the pregnancy diet, except  x100!  He can't even receive flowers or anything that might have any bugs, microbes, etc.  Crazy.  He can eat most anything that's really well-cooked or super pasteurized.  I think during the recovery period between cycles, he's not continuously neutropenic, but I have to check on that.

I just want to say a few words about his team.  It's ironic that we chose to stay in our nearby small hospital and have ended up in a huge medical center.  His case has been so difficult to diagnose, so aggressive, and had so many unexpected challenges (gall bladder infection), that no one could have predicted any of this.  The entire time, Dr. W had been consulting with Dr. Ahmed, the head of Lymphoma at Westchester (where Dr.W did his residency).  During the gall bladder recovery, Andrew took a bit of a bad turn, and Dr. W and Dr. A decided it was urgent that he be transferred to a hospital that could handle his high level of care needs quickly.

When we first arrived, I was a bit nervous. WMC seemed so enormous and impersonal, and we had become used to our nice, small Benedictine.  But I must say, it has been remarkable being here -- Andrew has an entire team now working with him.  They are so amazing, so caring, and they get everything done so quickly!! He was in bad shape when we arrived on Monday night, but by Tuesday afternoon he was already stabilized and in treatment.  We're so grateful to Dr. W for getting him into the right place, and under the guidance of Dr. A.  The two of them are now sharing care, and we feel like we're in really good hands.  Dr. A spoke with us after Andrew started feeling a bit better.  He called himself a bit of a Lymphoma-maniac -- it's his speciality and passion.  He told us that lymphoma has tripled (not doubled, as i read) in the last 30 years, and is indiscriminate -- it effects all races, all ages, all genders equally.  He said when he heard about Andrew's case (young guy, 2 little kids, very aggressive and complicated lymphoma) he said he knew he had to get us here immediately, and get us a cure.  After 10 minutes of talking with Dr. A, both Andrew and I felt really positive for the first time -- that we're really going to make it out of this.

My next concern is dealing with the insurance company.  WMC is recently out of our network, which is a big problem, as this care is going to be very expensive.  The case worker, though, is being very helpful, and thinks we'll get it all sorted out.  Dr. W told her that WMC is the only tertiary care hospital within 60 miles of us (the limit), so we will most likely be able to continue all of our care there.  Hopefully we will have it all sorted out within the week.  I would hate to start all over with a new team.  What a lot of bureaucracy!  But we expected it of course.  ;)

Anyway, onward -- another day closer to being lymphoma-free, and putting this behind us.  Thank you from both of us, and Jack and Ewan for all the wonderful messages, cards, food, and well-wishes.  We are so grateful and amazed by the amount of support and love that we're receiving.  If i haven't personally responded, please know that I'm trying, and am receiving all the messages.  The last several days since Thanksgiving have been absolutely frantic, but things seem like they might settle a bit now (I pray). xoxo

Linda

Lifesaving Bags of Chemo!!