not dead yet

Andrew titled this post -- fortunately, he keeps his sense of humor throughout.  Sometimes it's a real drag to be such tragic figures, day in and day out, so he told me to update the blog with "not dead yet" and leave it at that.

But I know that many of you would like some actual details, so ... We finally made it to Sloan Kettering last Thursday.  We had a very long, thorough visit, which was satisfying if not happy.  We're just so comforted to be there, in this place where all they do is think about cancer, treat cancer, all day long.  We first met with one of Dr. Z's medical fellows.  I can't remember his name, but he was lovely and had really done his homework on us.  He said he wanted to relate back to us our entire journey from the  beginning, and that we were to jump in if he missed anything.  Obviously, this was not something he could do if he only viewed Andrew's chart for 10 minutes prior to our visit.  He knew every detail -- and that was just so amazing.  We've seen so many doctors during all of our many hospital visits, and you end up telling each of them the same story over and over.  Here, he told us our story!  Off to a good start.

After the medical fellow had finished the history and examined Andrew, Dr. Z came in.  We didn't have to go over the whole history again, he just got right down to it.  Everything in cancer, he told us, starts with the diagnosis.  And Andrew's diagnosis has even stumped Sloan Kettering's top doctors and pathologists.  Without a definitive diagnosis it's very difficult to know which drugs to give, because some are only effective on certain types and so forth.  Dr. Z believes that Andrew's rare cancer is most likely a small cell leukemia that transformed into a large cell lymphoma.  The types are difficult to distinguish -- it looks a lot like a mantle cell (which they thought at Westchester), and also kind of like a CLL (type of leukemia), which Dr. E had thought at Albany.  The problem is that they can't say with 100 percent certainty because it's demonstrating certain gene markers of each, but not all.  So, they're planning to continue testing the tissue block from the original biopsy, plus take a biopsy of a new node that has appeared on andrew's neck.  Cancer is very smart, unfortunately.  It keeps changing and mutating, so after a few months you may have something very different than what you started with.

Fortunately, Dr. Z confirmed that all of the treatment Andrew received thus far was appropriate -- no mistakes were made.  It's just possible that the chemo was likely never going to have worked.  He said we really should have seen a clean PET after the first rounds of hyper-CVAD.  We saw a lot of improvement, but it should have been clean.  So ... Dr. Z does not favor the autologous stem cell procedure that was recommended at Albany.  He said that stem cell transplant is not an appropriate term -- it should be called stem cell rescue -- and that what Andrew needs is an actual transplant, which would come from donor bone marrow.  Essentially, the stem cell rescue is just more chemo, and would not ultimately be effective for Andrew.  What Andrew will get is called an allogeneic bone marrow transplant.  He will receive high intensity chemotherapy to put the cancer into remission, followed by a transplant from (hopefully) one of his siblings.  The chemo will be much more intense than the hyper-CVAD he originally received.  In an effort to destroy the cancer cells, it will literally destroy his bone marrow/immune system, thus the need for a transplant.  It's kind of like the bionic man -- "we can rebuild him!"  The first challenge though, is to get a better diagnosis so they know which chemo will be most likely to put the cancer in remission.  Andrew will have a biopsy this week (still waiting on details), and they will use that info to make a decision.  I'm hopeful that the chemo will then start next week.  They do want to start things as soon as possible, because you don't want to give the cancer more opportunity to grow.  He's feeling pretty good now, though fatigued.  I'm glad he's stronger going into this than he was last November.  It won't be easy for him, but we're hopeful.  Dr. Z is so confident and knowledgable -- we're so grateful that we're under his care.

I will try to update more regularly, though sometimes it's just so hard to write about it.  Andrew sends all of his thanks for the love and support.  He's doing well right now, and is feeling very positive and ready to tackle the next phase.

xo
L

the fight continues ...

Tuesday was a terrible day.  The news was unexpected and absolutely unwelcome.  We were in a very bad state on Tuesday -- today on Thursday we're feeling a bit more hopeful.  Still upset, but more hopeful.  After a quick but thoughtful deliberation, we've decided to go right to Sloan Kettering for further treatment.  I still had my old contact numbers from last November, so yesterday morning I called and fortunately they remembered us and were very helpful!  We now have an appt. for next Thursday to see Dr. Andrew Zelenetz, the top lymphoma specialist at Sloan.  He specializes in difficult to treat lymphomas and is currently heading up 26 different clinical trial for DLBC, Andrew's type of cancer. If anyone can help us, he's probably the guy.  We feel like we have one last shot here, and we have to get it right.   Huge love and thanks to my sister Terry and Michael M. for making the necessary calls to get us in at Sloan!  Here we go ...

reflection

I haven't posted in so long, and I haven't been consistent at all of late.  Just wanted you all to know that we are so touched by all of you who have followed this blog through the many, many hard months.  Andrew had been looking so well, feeling so well, doing so well recently that we thought, at last, that this terrible stuff would be behind us soon.  It seems not to be the case.   Two weeks ago Andrew found another small lump on his neck. We were concerned but knew it could be inflammation from the chemo.  We knew there was really nothing to do until the final PET scan.  He had the PET last week, and we went to Albany today for the results.  The PET showed that the cancer has not completely gone.  And there are some spots that are lighting up even brighter than after round 4 PET, most concerning in his liver. Dr. E. was pretty frank -- it's not a great situation.  He will have a biopsy Monday of either the liver or the new neck lump, and then he will start 4 rounds of a new, intense chemo to prepare for autologous stem cell transplant.   Salvage, they call it. We are planning to call our old Dr.'s, Dr. W and Dr. L. from Westchester for opinions, and probably head down to Sloan as well, although it all has to happen rather quickly.  We're very sad, as we never thought it would ever come to this, but hopeful as well.  We're going to give it everything we've got.

xo
L

Lymphomathon

Hi everyone,

Long time no post!!  we've been very busy this month, getting Andrew through his final recovery, wrapping up school for the boys, and participating in the Greater New York Lymphomathon!Huge thanks to all of you who generously donated to our Lymphoma Research Foundation team page!  We reached our goal, and raised over $5000 for the LRF!!! The Lymphomathon was on June 5th in Old Westbury, Long Island.  It was an absolutely gorgeous day and we had such a good time -- it was fun, but also therapeutic for Andrew to see SO MANY lymphoma survivors at one time, in one place.  Friends and family met up with us at the Old Westbury Gardens estate, and we all had a ball. Andrew and I think we'll try to do it every year if possible. 

Knockout in 8 Rounds!

Receiving the last bags of chemo.

After a week's delay (for pesky platelets, of course), we headed back up to Albany Med for Andrew's 8th and final round of chemo.  We had a moment where we thought we might be turned away again -- the nurse thought his WBC's were a bit low still.  But fortunately, the doctor gave the go-ahead and were on our way!  Everything went smoothly and we were finished in about 6 hours.  The entire clinic staff was so sweet and congratulatory -- the gave Andrew a "Purple Heart" certificate, the nurses all blew soap bubbles and everyone applauded.  After all he's been through the past 7 months, the applause certainly seemed warranted!  It was a bittersweet and emotional day.






Andrew is due back in a month for the final PET scan and follow up with Dr. E.  We are overjoyed to be finished with chemo, and hopeful for the future.

We can't express how grateful we are to all of you, who have been following this blog, extending your good wishes, prayers, and hopes for Andrew's recovery.  We are indebted to all of you who gave us so much of your time and assistance over these many, many months.  It certainly would have been a very lonely and scary journey without all of the love and support.


xo

FINISHED!

Linda

Off to the finish line!

Round 7 recovery is going well.  I don't want to jinx anything, but Andrew's blood counts should start climbing back up any day now -- no hospital intervention needed!  What a relief.  He's been very tired and had a couple of bad nights from the neupogen injections, but a much easier recovery this go round.

So now we just wait for the last and final round -- #8.  It's a bit nerve racking as we get near the end.  We're certainly thrilled that the chemo will be over and done, but just hoping that it did it's job and that all the cancer will be gone.  Thank you to everyone for hanging in there these many months with us.  Your love and messages of support were incredibly helpful during the dark days. As I write this, Andrew is outside playing baseball with his boys, and just so grateful that he's able to do it!

xo
L

Nearly there.

Thank you to everyone for all of the continued support.  It feels like the never ending journey!

Andrew had round 7 yesterday, which went smoothly -- in at 9, out by 2.  He wasn't sure that his platelets would be at chemo-safe levels in time to get treatment, but he just squeaked by, thank goodness.  Now we're anxiously waiting for the crash which should happen this weekend.  The goal is to stay out of the hospital!  He's promised to just rest a lot this week, as we both want to finish up as quickly as possible.  It's hard to believe that it's finally coming to an end -- we're scheduled to do the 8th and final round on May 21st.  Our lovely oncologist, Dr. E (or as we still call her, Lisa Loeb) has gone out for 8 weeks to have her baby.  We're happy for her (her first baby), but also sad that she'll miss the last round.  She helped us through so much anxiety and so many difficult decisions when we first arrived at Albany Med.  We don't really know who we'll be seeing for the end visits, but the whole group consults (at "tumor board" ), so whoever it is will be familiar with our case.  Unfortunately, Andrew's case was far from typical, so we're pretty well known there now.  Andrew is now feeling good and healthy other than the constant fatigue.  He's really looking forward to wrapping up this chemo and getting strong again.


I've decided to participate in a "lymphomathon" 5K walk to benefit the Lymphoma Research Foundation.  They are a fantastic organization, and an invaluable support to lymphoma sufferers and their families.  During Andrew's treatment, I spent an insane amount of time on their website gathering resources and information.  The lymphomathon is on June 2nd, on Long Island, NY.  Anyone is welcome to join our team "the Mac Daddies" and walk with us.  It's held at an absolutely gorgeous 200 acre estate, and the course winds through lovely wooded areas and gardens.  I can't guarantee that Andrew will be there -- it all depends on how he feels after round 8 (he may be crashing), but I'll be there with the boys and family members.  Please join us if you're able, to celebrate the end of this madness.

You must register to join the walk -- here is the link to our page:

https://www.kintera.org/faf/donorreg/donorPledge.asp?ievent=1001827&supId=356927680&extSiteType=1


xo
L