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!!

Finally, Chemo!

Just a quick, tired update ...
Yesterday, we got word that the liver biopsy showed lymphoma present in the liver.  Because of this, Dr. W. said he wanted us to transfer to Westchester Medical Center for more intensive treatment than could be provided at Benedictine.  Sigh.  Par for the course, I guess. The chemo plan has now been revised from R-CHOP to hyper-CVAD, for those of you keeping score.  Last night we were transferred, and today Andrew FINALLY started treatment.  They started him on the Rituxan, which is supposed to be the wonder drug for lymphoma.  He had a bit of a bad reaction to it at first (not uncommon), so they slowed it down, and he's now taking it very well.  He's feeling really, really poorly at the moment, but hopefully tomorrow he'll feel a bit better.  We're just so grateful to finally be under way.

I'm having lots of trouble accessing the blog at the hospital (?), so I'll update as I can, when I'm home.

L

I'm not a scientist, scientific researcher, medical professional, or even Erin Brokovich

Just a wife and mother, whose young, strong, beautiful husband has been in the cancer ward for more than a week.  And while we're in a holding pattern, waiting for A to recover from the gall bladder surgery, I thought I would say a word about lymphoma.

I admit upfront that I know very little about lymphoma, but what I have learned is that non-Hodgkins lymphomas are environmental cancers, not genetic.  Rates of lymphomas have doubled since the 70's, and have been strongly linked to pesticides, insecticides, and other industrial waste chemicals (google lymphoma and pesticides).  Lymphomas are increasing in rural, agricultural areas, such as the beautiful Hudson Valley, where we live --(ironic, since one of the reasons we moved here was to escape city pollution). It's really difficult to pinpoint specific causes, and Andrew and I know that we will never know exactly what caused his lymphoma.

We were talking with his brother Jeff yesterday about this.  Although it seems like a modern problem, man has unknowingly poisoned himself for centuries;  ancient Romans unknowingly poisoned themselves with lead, the Victorians unknowingly poisoned themselves with arsenic.  In 100 years, maybe people will be shocked that we willingly sprayed dangerous chemicals on our lawns and golf courses to get rid of weeds, in our houses to get rid of termites or ants, and on our crops.  These chemicals seep into our drinking water, float on the air, and cling to our skin.  Even if you don't spray your own lawn or trees (which we don't), if it happens in your neighborhood you are still at risk.  Heavy pesticide use in farming gets into the water supply.  It sort of feels like we are helpless against it.  We want to protect our kids, but protect them from which thing exactly, and how?  So we're not going to beat our heads against the wall, but it makes me sad and frustrated nonetheless.

Human beings get sick, it's part of the deal in life.  But young, healthy 40-somethings should not be struck down like this.  I'm just so grateful for the miracles of modern medicine that are going to save my husband's life!

another long weekend

today was a long day at the hospital, letting the antibiotics do their work.  he's already feeling pretty good after the surgery, but gets tired very easily.  he's pretty much sick of his hospital room by this point, but we're settling in for our third long weekend of waiting since this ordeal started.  hopefully sunday or monday we can start treatment, and they'll finally let him come home!

Thanksgiving

Yesterday's endoscopy removed the sludge, but also showed that Andrew's gall bladder was infected.  This is unrelated to the cancer, and has probably been building up for some time.  The G.I. doc said it would absolutely have to removed before starting chemo.  So, Andrew was given a few liters of blood overnight and platelets this morning for support. He had surgery at 9am this morning.  The surgeon said it went very well, and that we should be able to start chemo in a few days.  Fortunately, Dr. W. is on-call all weekend -- he's been moving all of these procedures along for us as quickly as possible, in coordination with the gastro docs, to make sure nothing gets slowed down due to the holiday weekend.

I'm so thankful for all of the fantastic doctors and nurses who are away from their families today, and taking such good care of us here.  And we're incredibly thankful for all of our family and friends, who have given us such support!  Happy Thanksgiving!!

xo
L

Sludge

We had a great talk with Dr. W. today (or as we like to call him, Dr. Superman).  We're still trying to figure out this liver issue, because a healthy liver will be really important once we start the chemo!  Although we don't yet know the cause, the docs think it might just be a bit of sludge in the ducts.  Now go enjoy your Thanksgiving dinners!  Ha -- it makes me reconsider all of my dietary habits -- keep your ducts clean!

So he's having a high contrast scan of the liver today -- more radioactivity -- and then an endoscopy this afternoon.  (this poor guy -- seriously).  The endoscopy will clean out the sludge, and hopefully, fingers crossed, he'll be good to go, with a pop of IV antibiotics. Dr. W. really talked me off the ledge today, telling me that it's ok to take a few days to figure this out properly.  It's not going to change anything for him, cancer-wise.  Apparently the blood cancers are a bit different this way -- it's stage 4 (still very treatable), that's not going to change. In a few days he'll be able to start treatment, he'll respond well, and we'll get rid of this thing.  He said after we see how he responds to the 1st treatment, he can go home, and after the 2nd cycle Andrew should start feeling a lot better.

Feeling so much more peaceful today.  We're going to bring a Thanksgiving dinner to the hospital tomorrow.  I'm making him a sludge-repelling "green soup"  full of every type of green veggie ;), and a nice butternut squash soup. Big thanks to my friend Lasha who brought us a huge box of organic veggies and fruit from their farm!

Heartfelt thanks to everyone for the huge outpouring of love and messages.  It's really helping us through these difficult days.  Happy Thanksgiving!!!!!

xo

L

still waiting.

treatment is going to be delayed a few more days.  there are underlying issues/possible infection in andrew's liver or gall bladder that need to be dealt with.  the bright side is that the prednisone wasn't causing the calcium spike, it was this other condition.  prednisone is part of the chemo mix, so Dr. W. was concerned he wouldn't tolerate it well.  that seems not to be the case, but now he has to have more  blood work and tests (of course!) to find out what's going on.  it all has to be addressed first, because once he starts chemo he will have zero immune system -- he has to be in great shape before he starts.  so it's day 5 in the hospital, but i'm trying not to count.  just hoping we'll start soon and he can come home.

not good news, but we're learning to be patient and calm, and have faith that it will all work out.

Thank you.

I'm sorry I haven't been able to respond to messages the last few days.  It's been a difficult time with Andrew in the hospital.  But I am getting them, and I so appreciate them.

Fallout, pt.2

Andrew had a heart scan today in preparation for the chemo.  He's radioactive again.  I'm sitting out in the hallway now.  Will the procedures ever end?

Sigh.

treatment?

Andrew spent the weekend in Kingston hospital, so they could monitor the calcium levels.  Yesterday morning, Dr. W. came by to tell us that the molecular test on the node had come back, and that we finally have an official diagnosis -- Large B Cell Lymphoma.  We were all relieved because this is the better diagnosis of the two.  Though extremely aggressive, LBCL generally responds very well to treatment and patients can be cured.  But we usually always get some bad news as well ... Dr. W. wants to test some spinal fluid and see if any of the cancer cells are making their way up to the brain.  If they have, they can be treated as well, but they have to be treated separately, through the spine, because of the body's blood/brain barrier.  Nice :(   Anyway, Dr. W. said it's just preventative.  He's very thorough and very cautious, which I appreciate -- nothing has slipped by him yet.  He said that he wanted to keep A in the hospital through Thanksgiving to monitor him during the first treatment.  When the chemo starts killing the cancer cells they spill all of their waste (uric acid, hydrochloric acid, etc) into the body, and it can be rough going for the patient.  Dr. W. said the first round will be the worst, but once he's able to see how Andrew is responding to the chemo, we can go home.  We asked him how long he thinks Andrew has had this lymphoma, and he said only a few months.  Unbelievable.  This type of cancer is so incredibly aggressive that it can start mutating, and basically take over your whole body in a few months time.

Late yesterday, Andrew was transferred to Benedictine, which is another part of Kingston Hospital.  Benedictine has a medical oncology unit (read: cancer ward) where Andrew will stay for the rest of the week and get his first treatment.  What a difference!  The floor is so peaceful, quiet -- Andrew has his own large room with a view of the mountains.   It's fairly plush by hospital standards.  I guess the one plus to cancer, is that you get treated really well in the ward.  The chemo protocol is alternating treatments of rituxin and CHOP (which is a mix of 4 drugs).  Dr. W. thinks we'll start the rituxin tonight and the CHOP tomorrow if all goes well with Andrew's liver readings.  There are a couple of issues there that they're sorting out.  If not, the rituxin will start tomorrow I guess.

I've been spending the days at the hospital with Andrew, and then going home in time to have dinner with the boys and put them to bed.  They're starting to get irritable with all the madness.  They haven't seen their parents, their schedules are all messed up.  Last night Jack was upset because he thought Andrew would be coming home.  Thank goodness for all the Aunties, Grandmas, and friends that have been taking care of them, and keeping their mind off things.  Auntie Terry goes home tomorrow, Grandma Patty arrives for a few days, and then Uncle Chuck will take the boys upstate for Thanksgiving with Grandma Joyce.  We'll be very grateful for lots of chemo this Thanksgiving!

way too tired to post tonight.  i'll update tomorrow.

Hospital

Ha -- we're such cancer rookies!  We really thought we were going to have a peaceful, "pretend this isn't happening" weekend.  With A feeling a bit better on the prednisone, he was hoping to spend time with the boys this weekend, while I worked, and maybe do some nice family stuff later. Friday morning he had to give a blood sample so Dr. W. could check levels of "whatever" while on the prednisone.  At three pm that day, Dr. W called me and said I would have to take A to the ER because his calcium levels were high, and apparently this is bad.  Bad enough to be sent to the hospital.  Sigh. Again, amazing friends to the rescue -- my dear friend Melissa on a moment's notice said she would take the boys for a sleepover.  We really have been blessed with the most loving and amazing friends.  I was dreading telling A, as he was really, really, really hoping for some time off from all of the needles, procedures, etc.  But he was a sport.  We spent about 7 hours in the ER.  The on-call doctor started him on IV fluids and an EKG to get the calcium down.  The ER is funny on a Friday night -- it's all young 20-somethings being wheeled in on stretchers for drunken stupidness.  After several hours, the doctor told us that he would be admitting A overnight to make sure the calcium situation was under control.  But you know everything m o v e s  v e r y  s l o w l y  i n  t h e  E R .  So we waited many hours for all the arrangements to be wrapped up.  I finally had to leave at 11:30 pm, because my sister was driving up from DC to take care of the boys for the weekend.  When I left, A was trying to sleep in his ER room, while they waited for an available bed in the hospital.  Leaving him there was so hard, but I'm actually hoping now that they keep him all weekend, under observation, until chemo on Monday (fingers crossed) -- just to be safe.

Andrew and I started laughing tonight about the "cancer look".  It's the very serious and pitiful look that we seem to be getting everywhere now.  When it's from medical personnel, i always think they know something that they're not telling me.  At any rate, you have to laugh or it's too overwhelming.

Treatment

I realized that I had forgotten to update about treatment decisions.  The rapid progression of A's cancer has made only one decision possible.  Dr. W has been incredible, moving things along very quickly for us -- ordering all of the necessary procedures and tests as rapidly as the insurance companies will allow.  He specializes in blood cancers, and even though we don't have the official subtype, he knows where it's heading. I've heard so many wonderful things about Sloan, and I'm sure we would have had exceptional care there, but their admissions protocol has me completely baffled.  Because this cancer subtype has been difficult to diagnose (this pathology lab consults with Sloan on diagnosis already), we haven't been able to get a first appointment there yet.  Andrew just can't wait.  His deterioration in 2 weeks is proof.  He told me he didn't think he could wait an additional week for treatment, and I know he's right.  Dr. W, Sloan Kettering, and the Mayo Clinic all use identical up-front treatment protocols, so we're staying put in Kingston with this doctor, who has been so exceptional.  Andrew will go for six cycles of chemo, once every three weeks.  His first cycle will be either Tues, Wed or Friday depending on the timing of the path results.

I realize that this all sounds horrific, but we're learning that this is the nature of these types of cancer.  They are not symptomatic until they are in advanced stages.  Fortunately, unlike other cancers, even in advanced stages they are treatable with aggressive action.

Taking a breath

Yesterday, Dr. W gave Andrew some prednisone to help him feel better until treatment starts next week.  Even after just one dose he was feeling a bit better.  We took the boys to a school fundraising event tonight  (briefly) and it was great -- great to be out of the house somewhere that was not hospital-related. We've decided to take the weekend off from cancer so I may not post anything more until next week.

Again, our heartfelt gratitude for all of the love and warmth coming our way.  I'm giving Andrew all of your messages and support (and he's eating all of the delicious food we've received!).  We're feeling your love and light, and it is really helping us through!

Lab Rat

Last night was very rough.  We got the news that it's non-hodgkin's lymphoma, -- still to be determined is the subtype, either B-cell or mantle cell.  Each one is very aggressive, advanced and bad news. But certainly people have beaten it, so we will too.  One test was inconclusive for mantle, so another molecular level test is being performed, and should be done in 2-3 days.  It would all be really fascinating if it weren't so terrible and personal.  I'm giving thanks though, for all of the amazing scientists who work to unravel these seemingly unsolvable puzzles, and find ways to cure these terrible diseases. I never really gave them much thought before, but i think about these people all the time now.

This morning we went in for the bone marrow biopsy -- not a favorite!  Andrew had to lie on his stomach while Dr. W. screwed some sort of tool into his back, into the bone and extracted many samples.  Dreadful.  But my babe took it like a champ. He says he's feeling a bit like a human experiment by this time -- they've done so many procedures on him.  He's feeling very weak but his spirits are up.  We're just impatient for treatment to begin.  Tonight we have to make our decision about Sloan.  We still haven't been able to be seen by them because the biopsy results are inconclusive.  Fear and frustration are the constants. Our doctor in Kingston, Dr. W., has been beyond incredible, attentive, and available to us.  We are growing very attached to him, and have gathered lots of info to help us decide what to do.  Ultimately, we are very short on time and don't feel any sort of delay is wise.  Our doctor here has described the chemo protocol (depending on the biopsy diagnosis), and we can start next week.  He will even get us going on Thanksgiving if need be, though the office is closed.  We feel incredibly grateful to have landed in such fantastic care by chance.  Andrew's family is all here today to help us make our decision, which is very comforting.

Sorry for the lack of pictures.  We're so sleep deprived and stressed at this point, I'm lucky to remember my own name.  I'm actually hoping this post doesn't sound like crazed ramblings -- but i wanted to make sure everyone was updated.  Send us your energy and love, we're sucking it up like oxygen!
xo
L

Fallout

Every day seems to bring some new fresh hell.  Pathology still hasn't finished gene testing the biopsy, so we didn't get any results today as we hoped -- maybe tomorrow.  Today I drove Andrew to his scheduled  PET scan, which is a full body scan to see how invasive the cancer is.  The office prepared us for a 2 hour scan, gave us the dietary restrictions and other requirements.  Unfortunately, they forgot to tell us that he would be radioactive for 8 hours following the scan!  We were to keep our distance, especially myself and the children, ideally for 24 hours.  While we were both taking in the reality of this info, I was making plans in my head for how to keep the kids away from him, out of the bathroom, etc. Jeez.  My good friend Sharon dropped everything and strapped her 3 young kids in the car to come and get me from the radiologist, as Andrew would have to drive himself home now.  He was very funny when he got home, making a lot of nuclear waste jokes, but I'm still thrown by the whole thing.

Sharon's husband gave me the number of another MSK doctor to speak with tonight.  I told him everything I knew so far, as well as A's current symptoms.  He agreed that starting treatment ASAP is necessary.  Tomorrow, we're scheduled to see our Kingston oncologist and Andrew will have a bone marrow biopsy (yikes!) to determine the stage.  This biopsy will take 7-10 days to come back(!!), but I believe the doctor said we will be able to start treatment before that.  I'm going to push for starting the first treatment yet this week.

The Long Wait

This has been the longest weekend of my life.  Andrew and I usually like to complain about how fast the weekends fly by.  Weekends are a really precious time for us; we like to have breakfast at our favorite place, The Wild Hive, or make pancakes for the boys.  Then we just spend time together, the four of us, on the rail trail or exploring a new town, going to a festival, working in the garden, or swimming in the pool. I  often say that there can never be enough weekends in our life like these.  I love them so much, look forward to them, and never, ever get tired of these days with my family.

This weekend, though, was terrible because we are waiting to find out results, waiting to know when we can be seen at Sloan, waiting to know what our life will be now.  Andrew is in some pain, very tired, and we just want to get going with some kind of treatment. I've been getting some great advice from old friends and new friends who have been close to this terrible disease.  They tell me that this is often the hardest part -- just not knowing.  And that soon we will know everything and can begin to fight.  It's Sunday night and I'm so relieved.  i just want this weekend to be over.

real life.

I wanted to start a blog so that I could keep everyone updated on Andrew's progress as we get through this disease.  We are so grateful for the huge amount of support and love we've received, and I quickly realized that it would be impossible to update everyone through emails.  So, some background ...

Andrew first noticed the weird lump on his neck around the end of September.  Neither of us thought much about it, as he's never had any serious medical issue.  We just thought it was a weird swollen gland from a virus or something.  About 2 weeks later he started having some symptoms, again virus-y -- just general fatigue and not feeling great.  We thought it was weird that the lump hadn't gone away.  I started googling.  Neck lumps, apparently, are never a good sign.  Finally, he was convinced to go to the GP and have it checked out -- just to be safe.  We never thought that it would actually be serious.  (Andrew's been to the doctor about twice in the 16 years that I've known him).  So he went -- and the GP recommended a CT scan.  Andrew wasn't sure if that was necessary, but he was still feeling crappy, so he went ahead and had it done on Monday, October 7th, with a scheduled oncology visit the next day.  We had the hospital fax the results to my step father, who is a surgeon, so he could consult on the results.  That night my stepfather called us with the news that it was lymphoma.

We were absolutely stunned.  In the back of your mind you always think "what if", but we didn't really, truly believe it would happen.  He's only 48.  The guy has never smoked a cigarette in his life, never had a serious medical issue, all relatives on both sides had lived or are living into old age.  No risk factors whatsoever.  I won't go into all the emotions, but it's obviously the worst nightmare of a happy couple with two small boys.  And I kept thinking, "Well this is real life.  We're mortal.  This is what people are going through all over the world, every day.  And now we are those people."   Our life changed in an instant.

We went to an oncologist in Kingston on Tuesday.  He confirmed what we knew and found a few more lumps under Andrew's arms.  He scheduled us for a biopsy on Thursday to determine the type and stage of the lymphoma.  By this time, Andrew's symptoms were increasing.  He was developing pain in certain ares of his body which made it very difficult to sleep, and the fatigue was increasing.  The biopsy went well, but Andrew had a difficult night. The surgeon had prescribed some heavy duty painkillers which really helped, and by Friday afternoon he was feeling much better.

During those very stressful few days my amazing sister and our dear friend Michael canvassed all of their contacts to find us the best treatment options.  Thanks to them, I was able to get Andrew into the care of the top Lymphoma specialist at Memorial Sloan Kettering in New York City.  We now are in what seems like an endless wait for the biopsy results.  When the reports are ready they will be faxed by pathology to our doctor at MSK, and we will have our first appointment.  The biopsy will determine which kind of Lymphoma Andrew has (there are about 30 different kinds), and what stage.  Then we will begin treatment.  At this point we really don't know what to expect.  We've heard so many positive things -- Lymphoma is usually very treatable.  But we've heard so many different things about the treatment -- from 3 months to as long as a year of chemo.  So right now, we're just waiting, waiting, waiting ... I really wish these biopsy results didn't take so long!!