weekend update 9/25

Happy Friday. We are looking forward to some beautiful fall weather this weekend. Emma rows in her first regatta on Saturday (which also happens to be her 14th birthday).  What a perfect day Saturday promises to be. Grandma and Jim will watch her row. I am a bit wiped out after  this week and will catch the next one. Emma also had her 8th grade retreat this week and had an absolute blast.  Joseph continues to enjoy Bowdoin.  The community of Brunswick is very tied into the school and Joe has begun both tutoring and teaching a Tae Kwon Do class to area grade schools.  The TKD class is part of a new after-school initiative for at risk kids.  Joe said his first class consisted of drills along with some basic kicks and punches until the kids begged for him to "do something cool."  He did some flips and kicks and it seems all were well entertained.  Oh, and I think classes are going well too.

On Tuesday I had a barrage of tests to determine why I have been so tired and short of breath lately. They ruled out the nastiest potential culprits (blood clot in my lung, scaring on my lungs from the chemo) and on Thursday found I have  the Epstein bar virus. Apparently this is a virus that quietly lives in most of us at acceptable levels.  I am tested frequently and the most recent test shows me to have an elevated level of EBV - my levels are not alarmingly high but could explain the fatigue. The hope is the virus will run its course quickly.

My elevated liver numbers detected last weekend led to me temporarily stopping Sorafenib (the pill chemo/immune stimulant).  My numbers are back to normal and I am back on Sorafenib.  Next week the doctors will make a determination if/when I start the infusion chemo.

So while it was a week of some uncertainty, nothing that came up has taken me off track in the treatment of my leukemia.  The medical team is very pleased with how well I am fighting the disease as we have seen no leukemia blasts in my blood in a couple of weeks.

I unexpectedly and happily have Friday and Saturday off.  Back on Sunday and will figure out after my labs are drawn what the plan is for next week,  In the meantime I am enjoying some time with my Mom and getting ready for a lovely Fall weekend.

Thanks for checking in

Thursday September 17

Another day, another visit to the clinic!  Today I learned the details of my upcoming treatment plan.  I will have another round of Infusion chemo beginning next week.  This will be the second cycle for this chemo and will last 7 days.  Again it is out patient.  I remain on the pill chemo which I continue to take daily.

Next up after the chemo is a bone marrow biopsy to learn the state of the leukemia in my bone marrow.  Depending on the biopsy results I will either have another round of chemo or the cell infusion from my original bone marrow stem cell donor.  The biopsy is at least a month away.

So I think we are settling in for another four weeks of basically quiet as the chemo does it's work and we wait for the biopsy.

Two bits of encouraging news - my medical team is very happy with the way I've tolerated the chemo.  If I was not doing so well we would not be going in such a good direction.  Also my blood continues to be blast free which means the leukemia is not in my bloodstream (again thanks to the chemo regimen).

Emma has started her second year of rowing and seems to really enjoy it.  All good reports from Joseph as well.

My Mom is in next week which will be so helpful as I go from every 3 days at the clinic to every day at the clinic!  It will be wonderful to see her.

Weekend Update Sunday 9/13

What a chatty post on Friday!  Well it has a lot of info so check it out for the latest and mostly greatest.

Saturday morning had me back in the clinic for a brief trip to get more platelets and get the final clearance for going to the One Direction concert with Emma!  We've had the tickets for almost a year.  My Doctor cleared me during the Thursday visit and all continued to be well on Saturday.  So we made the trip to Foxborough Stadium, I strapped on my mask and applied purell about 30 times, and we enjoyed the last North American tour of Emma's favorite band.  Emma and I could not have made the trip without the company of my friends Karen and Dina (and their kids).  I was a bit wabbly on the walk too/from the stadium and would not have trusted myself to the long/late drive home.  I thank you from the bottom of my heart and also had a great, great time with you.

Back to the clinic on Tuesday for my now standard every 3 to 4 day visit.  Moving toward getting another bone marrow biopsy and should get it scheduled soon for sometime in the next week or so.

That's it and have a great week.

Thanks for checking in!

Oh, and a Joseph update - Emma sent him a text asking what kind of cookies he wanted in an upcoming care package (she could not decide between two recipes).  He also asked for the hammock Aunt Kate sent for graduation and a Nerf gun.  We feel bad we did not send him to Bowdoin suitably armed.

Friday September 11

Quick Summary:  I am responding well to the chemo (one cycle so far since the recurrence of the leukemia).  One measure of this is the absence of ‘blasts’ in my blood according to recent lab results.  Blasts are immature, abnormal white blood cells produced by the marrow that crowd out production of the good cells.  Next steps in my treatment will be determined by a bone marrow biopsy not yet scheduled but likely in the next week and a half.  In the meantime, I will continue to go into the clinic every 4 days or so getting labs taken and replenishments (red blood, platelets, etc.) as needed.  The chemo and other medications impact the target levels and it is standard to get these replenishments at this point in my treatment.

Moe’s Musings…Woke up today feeling strong and well rested.  WOW – I did not fully appreciate how depleted I was until actually feeling good again.  Yesterday (Thursday) had a clinic appointment and my lab tests showed both my magnesium and platelets were both crazy low.  Those were replenished intravenously making for a long clinic day but well worth it!  My prayers to those who have chronic fatigue or pain with no respite - God be with you.  Also many thanks to those who donate blood and platelets – I am your best customer these days.   Never do I hear ‘oh we don’t have that type blood to give you’ or ‘we’re fresh out of platelets’. 

My friend Ellen is due some credit for the rise in my blood counts as we recently enjoyed her gift of  ‘Moe’s Extra Hearty Blood Cell Strengthening Sauce’ (honest to goodness that’s the name she gave her sauce – a great name albeit with  a limited audience J)

Heading back to the clinic on Saturday – it seems I am going in about every 3 to 4 days.  They take multiple vials of blood (the ghouls) and check all sorts of levels.  Based on the story my levels tell them I’ll get some type of replenishment (red blood cells, etc.) – the levels also dictate my next visit…the lower the levels the more frequently I go in to get topped off.

A little more on blasts…One other thing they are looking for in my labs is ‘blasts’ in the blood.  These are abnormal, immature white blood cells that fill the marrow crowding out production of the good cells.  Presence of blasts in the blood is an indicator that leukemia is active.  The presence of blasts in my blood work about a month ago led to the bone marrow biopsy which confirmed the acute myloid leukemia has returned.

In the past few weeks we have been watching the presence of the blasts and they have been going down.  The last three labs showed no blasts at all.  This is great news per my cautious and conservative medical team.  The story this tells is that my leukemia is responding to the chemo. 

So what next…at some point in the next couple of weeks I will have another bone marrow biopsy to learn the status of my disease (sadly lack of blasts by itself does not equal lack of leukemia in the bone marrow).  This will determine the course of treatment – either another round of chemo or straight to the booster infusion of my original donor’s cells.  The cell infusion will strengthen my new immune system again fighting and eradicating any lingering leukemia or any that should surface in the future. 

My understanding is the original transplant worked in that it kept the disease from exploding when it presented itself again.  This is great news – the lousy news is the leukemia returned at all, an indicator it is pretty aggressive.

In other news…Today was the first Friday mass at St Michaels and it was wonderful to be able to attend.  The eight graders watch over the preschoolers at Mass and all us parents of eighth graders were reminded how amazing it is our kids are no longer those little kids being watched over themselves.  Off to dinner and then Jim and Emma head to the North Andover High School football game (go Knights).  

Monday September 7

Coming off a very nice Labor Day weekend. Emma, Jim and I spent the day in Gloucester yesterday with our great friends the D'Abates. Jim and glen took the boat and the girls drove to a waterfront restaurant where the boys docked and joined up for lunch. Kirsten, Emma and I toured glouster by car identifying several waterfront homes that met our criteria for a second residence.  We made our way to a lighthouse and long concrete pier/brake wall which we walked down passing artists and fishermen/women and other day trippers. Saturday had been extremely low we energy day for me. Days like that are inevitable but still so frustrating. I am weepy, cranky, tired- a real pleasure to be around.

I am in the clinic for a scheduled visit this morning.  My nurse today said low days are inevitable and they get worried if a patient does not bounce back in a day or so. Also my platelets were very low today and typically I do get tired when they are low.  In the clinic now getting the platelets.

I am on two chemo regimens (one infusion which was administered every day for seven days ending Tue 9/1) and a pill chemo I am taking daily.  My routine since my infusion chemo ended has been to come into the clinic every 3-4 days and get my labs drawn.  One side effect of the chemo is low blood counts so I frequently get replenishment of platelets and red blood.  

Still neutropenic meaning I have very low white blood cells including low neutrofils (disease fighting white blood cells). So I am wearing the mask / gloves in indoor crowded places and back to a restricted diet.

When the leukemia came back the plan was to do one to two cycles of the infusion chemo (taken intravenously at the clinic) while continuously talking the pills.  The infusion is 3 weeks apart so, if we do a second round it would start on or about 9/23.

The next step is the DLI (donor lymphocyte infusion) which is a booster of cells from my original donor to improve the efficacy of the original transplant again helping my own immune system fight any remaining leukemia. So the strategy is twofold targeted chemo to kill the leukemia cells (the type of chemo I am taking also acts as an immune accelerator) and an infusion of new donor cells (a mini transplant -my words not the docs) to boost my immune system and continue it's frontal assault on the leukemia

The determination of which will be the next step (round 2 of chemo or straight to DLI) will be determined within the next week or so. It is too early to say the chemo is working but there are no signs it is not (how's that for hedging my bets).  There are signs I am responding to the chemo which is very encouraging.

Anyway thanks for slogging through this. This is what happens when I have a high energy morning and I am in the clinic by myself.

Oh and before I go the Joseph update. He is enjoying Bowdoin and had a visit from his best pal Megan this weekend   Jim Emma and I hope to get there soon. Well all done at the clinic so off to home.