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January
29
2021

January 28, 2021

Hello friends and family, It's time for an update!

I completed four rounds of chemo infusion and had a CT Scan last Friday.  On Tuesday I had a blood draw, a conference with my Oncologist and the fifth infusion - which lasted until Joseph disconnected the mobile pump this morning.  It's nice not to have to go in to the Infusion Center every day, but it's nice to be untethered from this pump, too.

I'll start with the results of the CT Scan.  It showed good progress in two major areas - the lesions on the liver and the enlarged lymph nodes caused by the Acute Lymphocytic Leukemia, that the added on  as an additional diagnosis. And, it showed some advance on the cancer to the vertebra.  Joseph said, "I'm not quite sure how to make sense of this."  My quick response was, "What going well is good.  Let's celebrate it!  What isn't going well just might be what gets me in the end.  It would be a lot to ask that everything go well, with so much wrong in there, after just four treatments."  

There are many places on the liver where  the cancer has metastasized.  One which measures 54 mm by 49 mm before the four treatments, now measures 43 mm by 42 mm.. Others have been reduced in size, too.  With the lymph nodes, one previously measured 9mm by 11 mm is now 8 mm by 9 mm.  Another lymph node measured 24mm by 28 mm and now measures 12 mm by 17 mm. And a third one measured 29 mm by 23 mm and now measures 19 mm by 17mm.  So the chemo is succeeding in shrinking those lymph nodes and it was exciting to see that.  And then I asked the Oncologist  what normal was for the size for a lymph node.  Her answer, "1 mm",  suggests we have along way to go!! But, we're heading in the right direction.

There has been some thinning of the wall of the esophagus, which may explain my ability to eat just a bit better. The pleural effusion that brought about the diagnosis of Chyle Leak that propelled me on to this high protein, low fat diet (over 100 grams of protein a day and under 10 grams of fat - under five if you can do it) is still definitively unresolved.  Before I began chemo, there was some effusion on the right side and more on the left side. They decided to drain just the left side.   The CT Scan showed no effusion on the left side and "Small effusion on the right side".  There is no way, apparently, to determine is the small effusion on the right is what was there before or if it represents ongoing leakage. The recommendation was that I say on the diet and maybe moderately allow more grams of fat until nI notice symptoms of shortness of breath, which would mean that the leakage is still occurring.  I don't so much like that uncertainty or that recommendation, so I am being very cautious with additional grams of fat.

The last CT Scan showed a cancerous lesion at the T9 vertebra.  There is now fracture there.  And now, there is a cancerous lesion at the T8 vertebra. The Oncologist suggested that  if the spread in the vertebrae continued and the current chemo didn't stop it, it is possible that he may choose to discontinue the current chemo cocktail and move to one more targeted to what's happening with the vertebrae.  

My blood work was very positive. Basically, everything is in the normal range or moving closer to the normal range.  Particularly exciting to see was the Liver Enzyme count.  The normal range is 30 to 125.  The count was 1,137 on December 1st.  The current  count is 166.  Getting there!!

So, there's a lot of technical information.  Maybe too much!!  But, I feel good.  I have lower energy days after chemo, but very few other side effects besides thinning of hair.  Oh my!! I'm shedding like an old dog.  They have assured me that these drugs don't make you go bald, but I'm not sure having 15 hairs left on a big head is much of a step above bald and it feels like I'm headed that way!!

This is already quite long.  I may add another journal entry later in the week to share my continued karma with unusual roommates.  OH My!!  I ad gotten up at 5:15 to get to a 7:00 appointment and was looking forward a good nap during my 3 hour in office infusion.  Stay tuned!    

Thank you all for your messages of encouragement, your thoughts and prayers and special Masses.  I appreciate your support; it lifts my spirits.  And, it seems to be working!!   Jim

Oh, I have to add my insult of the day.  I lost 30 pounds while I was walking and doing the stairs before all this illness came to light.  I've lost another 30 with the illness, no fat diet, and chemo.  I look skeletal.  When people would tell me I looked so young for my age because I had no facial wrinkles, I would tell them that the fat acted like putty.  Well, the putty has fallen away. but, I have a rather pronounced and protruding belly.  I asked the Oncologist if it was related to the cancer and inflammation.  She did a quick exam on the table and said, "No, this has nothing to do with your cancer.  It's on you.  You lost all the fat around your belly, but belly fat is harder to get rid of.  Start exercising."  Ouch!!  I rather liked the excuse!!

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January
7
2021

January 6, 2021

Hey all,

Not much new news to share on dad's health, but he wanted to share a moment of merriment from last night's celebration of American democracy. 

Here is a picture of dad and I toasting to the state of Georgia by eating some peaches and yogurt. 

 

Joe

January
4
2021

January 3, 2021

Hello!  I hope you each had a wonderful holiday season.  Happy New Year!! I hope 2021 is good to you and those you hold dear.  

I'm sorry it's been so long since the last Journal posting.  Frankly, there hasn't been much to report.  I  can tell you that I just completed the third of four scheduled chemotherapy infusions. I have been very fortunate not to have had any of those side effects you often hear about - or to be more precise, They haven't effected me to seriously.  I tremble a bit at times.  My hair has been thinning, but I still have plenty!  And, some days are marked by fatigue.  But, generally speaking, all has been manageable.  

The last two chemo treatments seem to have brought down the spiking liver enzymes, which has resulted in the fluid in my legs slowly dissipating.  As of tonight, the fluid is almost completely gone from the groin down through the mid-calf.  Whew!  Does that feel (and look) better.  And, many of my blood counts that were wildly out of the normal range, have moved back to normal or are approaching normal.  So, something is working; but just how consequential that something is remains unknown for now. 

The initial plan was to undergo four chemotherapy infusion treatments and then take a break for current diagnostic testing.  As far as I know, that remains the plan.  If treatment is accomplishing what's intended, I would imagine they would recommend additional treatments with the same chemo drugs.  If treatment is not accomplishing what's intended, there may be a recommendation to continue treatment with a different constellation of chemo drugs.  And there is, of course, always the possibility that they will say there is no treatment that will be effective and that I should discontinue treatment.

Gina and Joseph continue to dote on me. Joseph's prowess preparing tasty meals given the guidelines of my diet continues to develop.  I must have in excess of 100 grams of protein a day and less than 10 grams of fat - preferably as close to 0 grams of fat as possible.  We're meeting those goals, but the goal of 2,000 calories a day without fat has us seriously challenged.  Needless to say, I'm losing weight - lots of weight! I always wanted to be thin, but this is ridiculous!!

Thank you for all of your positive thoughts, prayers, well wishes and emotional support.  I appreciate it; they buoy me!!    Happy New Year!   Jim

December
17
2020

December 16, 2020

Hey all,

On Monday we went in to have some of the fluid drained from dad's chest cavity to hopefully provide some additional breathing relief. Unfortunately/fortunately, they found he had relatively very little fluid to drain. So while he may have left not feeling much different than he came, it's great to know that something has been working. It's possible its the continued benefits of radiation/chemo, the new diuretic he started or the significant reduction in Oxycodone/Morphine (and possibly a combo of all three).

The fluid on his legs on the other hand...we're still working on that and hoping a significant increase in dosage of his diuretic will help. Stay tuned.

This morning, just before his second round of chemo we met with the lead oncologist who informed us that lab results indicate that, in addition to the esophageal cancer, dad also has Chronic Lymphocytic Leukemia which is unrelated to the esophageal cancer. For those counting at home, that's a total of four cancers over his life.  As dad said in his typical humor "I think I got the bingo!"

Today's chemo was otherwise uneventful and, despite a little fatigue, dad is feeling pretty good and free of any side effects. 

Keep the thoughts and prayers coming!

P.S. If any of you know Santa, in addition to the new esophagus, we're now asking for a new Lymph system for Christmas as well...)

Joe

December
12
2020

December 11, 2020

Great day today! Dad was up walking around both yesterday and today (sometimes with a walker). Hard to believe that just three months ago he was doing the stairs at the park. He is finally able to eat some solid foods. Yay! Radiation seems to have helped his esophagus as well as relieve some of his unbearable back pain. We are all enjoying those small wins. Now that he can take in some solid foods, he is rocking his daily protein goals. He is still struggling with his breathing-especially in the middle of the night. It is just hard to get a deep breath but his oxygen saturation levels are the same as mine and better than Joe’s! The fluid that he is retaining in his legs, abdomen and lungs is really obnoxious and is uncomfortable. His previous low protein levels and his liver (where the cancer has spread to) are both culprits in causing the edema. He will have the pleural effusion drained Monday and he is looking forward to that. On Wednesday, he will start his second round of chemo. We hope to see some improvement in his liver function as soon as possible so he can shake this edema. He is tired of sleeping up straight in a chair. Thanks to all of you for your support!

December
9
2020

December 8, 2020

Hey all,

Wanted to give you an update from the last 24 hours. Last night around 2am after struggling to sleep and with a lot of phlegm and shortness of breath, Jim felt he needed to be taken to the ER. The paramedics came in, gave him supplemental oxygen to help relieve his shortness of breath and took him in to be monitored. After some testing (and a precautionary covid test that he swears put a hole in the back of his skull) they determined that the build-up of fluid in his legs and abdomen was flowing into his chest cavity and lungs (pleural effusion) while he was sleeping, causing both the phlegm and shortness of breath. They released him around 7am and he spent most of the day resting and having his children dote on him.

While we are waiting on recommendations and next steps from his oncology team, we have gone ahead and scheduled an outpatient procedure with radiation to drain some of the fluid from his chest/lungs that should make him more comfortable for a bit until the benefits of the chemo kick-in.

On a bright side, the paramedic that took him in was so impressed with the house and how new it looked despite being 22 years old he was telling everyone at the hospital! (Gotta take the wins where you can get them right?) Turns out he was also a Queen Anne kid whose family had lived on the hill for 70 years. Small world.

Jim is currently resting comfortably and breathing with a bit more ease. We will update everyone again as things continue to develop.

Thanks all for the prayers and well wishes and keep it up!

Joe

 

 

 

 

 

December
5
2020

December 4, 2020

Hello everyone,

Jim completed his first cycle of chemotherapy today, a 46 hour treatment that started Wednesday afternoon. Thankfully, he has not experienced any strong negative effects as of yet. The most pronounced so far is the intolerance for cold caused by one of the three chemo drugs (as he found out when he defied doctors orders and reached into the fridge to grab something feeling what he described as an electric shock or electric current running through his hands).  While it's promising that he didn't have any strong negative side effects, we know the drugs have a cumulative effect and that it often takes several treatments before they begin to compound and reveal themselves. His next treatment is Wednesday the 16th.

The two biggest issues that continue to cause problems are his legs and his shoulder.

Legs: One of his liver enzymes that should be around 110 is over 1,000. This, the pain medicines and his difficulty getting enough protein have caused his legs to retain fluids and and swell to a significant size, causing him several problems. We're hoping that a new high-protein nutrition plan and the chemo will slowly help to relieve some of these issues.

Shoulder: Jim had an x-ray today to see if the cancer had gotten into his shoulder and that was the cause of his pain. The good news is that the x-ray revealed that the cancer is not the cause of his immense shoulder pain, rather it is his degenerative arthritis. The bad news, of course, is that the chemo won't be effective in helping to relieve that pain so his shoulder will likely stay an issue.

We will continue to update everyone as noteworthy happenings occur. Thank you all for your continued support, prayers and kindness.

Joe

 

 

 

December
2
2020

December 1, 2020

Hello all!    Well, tomorrow I begin  my journey down a new  path - chemotherapy.  I'm a little uneasy because of those lists of terrible side effects.  I am hopeful that none of them hit me very hard and that there are interventions to mitigate them.  I'm not quite sure what to expect - the calendar is a bit overwhelming, but I have confidence that it will all become clear and routine quickly!!  The back pain I was experiencing, has stayed away, but I have begun to experience pain in my right shoulder.  I had thought that it was the result of an injury, but I'm coming to the conclusion that it more likely one more place where the cancer has metastasized.  There may be more radiation in my future if the chemotherapy proves successful enough.  It's very hard not to experience this and think of what a trooper Mary Ann was in facing it.  Gina and Joseph continue to be my rocks in taking care of me.  There are already so many things I can no longer do for myself and without them  - Yikes!  Whoever raised those two sure did a fine job!!

Thank you for your continued prayers an support.  Knowing that you are out there pulling for me means a great deal.  Someone should congratulate me for knowing how to pick family, friends, co-workers and neighbors!!  I've obviously done a marvelous job!!

Jim