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

keeping our heads down

Well, round 6 was very eventful.  we thought it would be smooth sailing to the end, but we were reminded, as always, that cancer and chemo are in charge, and it ain't over until it's over.  Round 6 actually went well -- it was our first outpatient experience.  We were in and out in about 6 hours, which was wonderful.  Andrew felt a little beat up, but not too bad for the next few days.  We were out in the garden planting, cleaning up, and having a great time.  Then day 8 hit him like a ton of bricks.  He was on the couch all day.  Day 9 he couldn't move from the bed and we knew he was struggling.  We decided to head to the doctor's early the following morning.  Andrew was back in the wheelchair, as he was unable to walk into the clinic.   I was trying not to panic, but it was so unexpected -- we thought we were beyond this point.  They drew his blood, while he rested in the infusion suite.

Dr. E. came right over to see us, and told us that all of Andrew's counts were near zero again -- critically low, and that he would have to be admitted for transfusion and antibiotics.  Andrew was not happy to hear this -- he has reached his emotional limit with hospitalization.  But we knew there was no choice -- his bone marrow has been so beaten up by the chemo that it's not yet functioning well on it's own.  Dr. E. told us that this is not unusual -- lymphoma patients are in and out of the hospital all the time, due to the aggressive nature of the treatment.    We waited around until the hospital had a bed for him.  That night, Andrew was given 2 units of red blood cells and round-the-clock antibiotics.  The next morning he was given 2 more units of RBC's, and his counts started creeping back up.  The following day, the on-call doc decided Andrew was well enough to be discharged.

So we have 2 more rounds to get through.  Most of us think "2 rounds -- hooray, no sweat, it's almost over!"  but for the person going through it, the last rounds are usually the hardest.  The body is just so weak by the end, that it's like glimpsing the top of a mountain and you're unsure if you have enough strength left to get there.  So keep your good wishes coming for the last 2.  We will all get him through this!!!

xoxox
L