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!!