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My life after the passing of my wife - 6 years later!!! (1 Viewer)

cheeseypoof said:
Well it's been an interesting 6 months.  Today (Christmas Eve) marks the 30 month point since my wife's passing.

Medically I think I'm doing good.  In July routine blood work as part of the post kidney cancer surveillance program my iron and hemoglobin were low.  The Oncologist sent me back to my GI doc for testing to see if there was any microscopic GI bleeds.  Also her sent me to an Endocrinologist for evaluation of a few nodules they saw on my thyroid.  He also had me start taking iron supplements.

So in the months of August-October I got to enjoy the following procedures:

Thyroid Ultrasound

Thyroid Biopsy (results were benign)

Repeat Colonoscopy

Repeat Upper Endoscopy

Small Bowel series X-ray

Capsule Endoscopy.

All of the test came back as normal with no GI bleeding sources found.  The iron pills seem to be working as my iron and hemoglobin are still low but much closer to normal than in July.  The CT scan in November did show a couple of lung nodules that had been present the entire time had gotten slightly bigger.  Still very small (less than 5mm).  They are to small to be biopsied.  The radiologist is concerned that it may be a recurrence of the cancer.  The Oncologist stepped up surveillance from every 4 months to every 3 months so I go back for new scans in March.  Trying not to whig out about it but it's still a scary proposition.

Personally, the past 6 months have been a roller coaster.  Shortly after my last update, the relationship with the woman I was dating started to unravel.  By the middle of October we had broken up.  Looking back after the fact I really don't think there was long term potential so it was for the best. It was a mutual decision so it was a very amicable parting.

Black Friday I got a friend request from a woman I dated for couple of months in the fall of 2017.  We started talking again.  We went out Wednesday night and have started dating again.  So we'll see what happens but it's all been very positive so far.

Overall, I'm in a good place.  Feeling optimistic about the coming year.

Merry Christmas Everybody
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Merry Christmas Cheesy. Praying for peace and comfort and continued healing. 

 
So I figured it's time to update this.  Unfortunately, this isn't going to be the most positive update I've provided. 

First, Monday was the 3 year anniversary of my wife's passing.  Like all the milestone dates (birthday's, anniversaries, etc.) it was a very emotional day.

My son is doing okay.  He now has an insulin pump and a continuous glucose monitor for his diabetes (type 1).  He still needs to do a better job of managing it.  He was having a lot of low sugars, including one where he passed at at work and was taken to the ER by ambulance.  That incident scared him.   As a result of that, his Cardiologist pressed him hard to consider the placement of an implantable cardioverter defibrillator.  One of the first signs of low blood sugar is a rapid heart beat, but the beta blocker he is on for his LQTS mutes that symptom.  She wanted the ICD so he could come off the beta blocker.  That surgery is scheduled for August 14th.

I had a follow up doctors appointment with my oncologist on Friday.  He said the most recent CT scan of the chest showed a new 5mm spot in the lung that wasn't there on the CT scan in November and PET scan done in February.  Both the oncologist and radiologist that read the scan feel it's the Renal Cell Carcinoma metastasizing in the lung (one of the location kidney spreads to along with the thyroid and liver).  The spot is to small for a biopsy, but based upon the size and grade of my tumor (Stage 3 Grade 3 with infiltration in the the IVC) re-occurance was very likely.

I have the option of starting treatment now, or waiting.  The treatment consists of a combination drug therapy of a chemo pill (Inlyta) twice a day and immunotherapy infusions (Keytruda) every three weeks.  After talking to my wife's cousin who is a doctor, I decided to start the treatment sooner rather than later.  I'll probably start the treatment in early August to work around my son's surgery and a scheduled vacation him and I are taking August 18-23 (driving trip to Washington, Pittsburgh, Cincinnati, Chicago, Cleveland and Baltimore for baseball games).

Other than the fact that I have, most likely, metastatic renal cell carcinoma growing in my lung,  I feel pretty good physically.  Emotionally I'm kind of a wreck, but I'll weather the storm because I have no choice. 

 
cheeseypoof said:
So I figured it's time to update this.  Unfortunately, this isn't going to be the most positive update I've provided. 

First, Monday was the 3 year anniversary of my wife's passing.  Like all the milestone dates (birthday's, anniversaries, etc.) it was a very emotional day.

My son is doing okay.  He now has an insulin pump and a continuous glucose monitor for his diabetes (type 1).  He still needs to do a better job of managing it.  He was having a lot of low sugars, including one where he passed at at work and was taken to the ER by ambulance.  That incident scared him.   As a result of that, his Cardiologist pressed him hard to consider the placement of an implantable cardioverter defibrillator.  One of the first signs of low blood sugar is a rapid heart beat, but the beta blocker he is on for his LQTS mutes that symptom.  She wanted the ICD so he could come off the beta blocker.  That surgery is scheduled for August 14th.

I had a follow up doctors appointment with my oncologist on Friday.  He said the most recent CT scan of the chest showed a new 5mm spot in the lung that wasn't there on the CT scan in November and PET scan done in February.  Both the oncologist and radiologist that read the scan feel it's the Renal Cell Carcinoma metastasizing in the lung (one of the location kidney spreads to along with the thyroid and liver).  The spot is to small for a biopsy, but based upon the size and grade of my tumor (Stage 3 Grade 3 with infiltration in the the IVC) re-occurance was very likely.

I have the option of starting treatment now, or waiting.  The treatment consists of a combination drug therapy of a chemo pill (Inlyta) twice a day and immunotherapy infusions (Keytruda) every three weeks.  After talking to my wife's cousin who is a doctor, I decided to start the treatment sooner rather than later.  I'll probably start the treatment in early August to work around my son's surgery and a scheduled vacation him and I are taking August 18-23 (driving trip to Washington, Pittsburgh, Cincinnati, Chicago, Cleveland and Baltimore for baseball games).

Other than the fact that I have, most likely, metastatic renal cell carcinoma growing in my lung,  I feel pretty good physically.  Emotionally I'm kind of a wreck, but I'll weather the storm because I have no choice. 
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So sorry to hear. I hope that if it is mets, the treatments put you into remission for the rest of your life. Praying for you and your son. 🙏🏻xxx

 
awwww, crap! times like these i wish i prayed. my aged mother will work you up a Novena and into her daily prayers on my behalf, although i dont know if she knows anyone who shouldnt have already let you off the hook. bless you, my good man. every day is still a gift and i wish you a Kardashian shower's worth of gifts. anything i can do, anytime. that ballpark tour sounds a blast. good luck to you & your boy -

 
cheeseypoof said:
So I figured it's time to update this.  Unfortunately, this isn't going to be the most positive update I've provided. 

First, Monday was the 3 year anniversary of my wife's passing.  Like all the milestone dates (birthday's, anniversaries, etc.) it was a very emotional day.

My son is doing okay.  He now has an insulin pump and a continuous glucose monitor for his diabetes (type 1).  He still needs to do a better job of managing it.  He was having a lot of low sugars, including one where he passed at at work and was taken to the ER by ambulance.  That incident scared him.   As a result of that, his Cardiologist pressed him hard to consider the placement of an implantable cardioverter defibrillator.  One of the first signs of low blood sugar is a rapid heart beat, but the beta blocker he is on for his LQTS mutes that symptom.  She wanted the ICD so he could come off the beta blocker.  That surgery is scheduled for August 14th.

I had a follow up doctors appointment with my oncologist on Friday.  He said the most recent CT scan of the chest showed a new 5mm spot in the lung that wasn't there on the CT scan in November and PET scan done in February.  Both the oncologist and radiologist that read the scan feel it's the Renal Cell Carcinoma metastasizing in the lung (one of the location kidney spreads to along with the thyroid and liver).  The spot is to small for a biopsy, but based upon the size and grade of my tumor (Stage 3 Grade 3 with infiltration in the the IVC) re-occurance was very likely.

I have the option of starting treatment now, or waiting.  The treatment consists of a combination drug therapy of a chemo pill (Inlyta) twice a day and immunotherapy infusions (Keytruda) every three weeks.  After talking to my wife's cousin who is a doctor, I decided to start the treatment sooner rather than later.  I'll probably start the treatment in early August to work around my son's surgery and a scheduled vacation him and I are taking August 18-23 (driving trip to Washington, Pittsburgh, Cincinnati, Chicago, Cleveland and Baltimore for baseball games).

Other than the fact that I have, most likely, metastatic renal cell carcinoma growing in my lung,  I feel pretty good physically.  Emotionally I'm kind of a wreck, but I'll weather the storm because I have no choice. 
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My deepest thoughts, prayers and best wishes to you and your son.  I've said it before in this thread: Life seems to keep throwing obscacles in your path--and your strength, resilience, and positive attitude make you overcome them time and time again.  You've overcome a lot and this is no different.   If you ever feel down--come into your own thread and remind yourself that you have an entire community sending you love.  Please keep us posted. GL.  

 
Combo drug therapy treatment for metastatic Renal cell carcinoma in my lung starts tomorrow morning at the Abramson Cancer Center in the Perelman Center for Advanced Medicine at the Hospital of the University of Pennsylvania.

Therapy will be a combination of immunotherapy infusions of Keytruda and oral chemo therapy.of Inlyta.  The infusions will be every 3 weeks for up to 35 rounds.  The oral chemo is 2 pills daily. From what I’ve been told and read this particular combo has produced very positive results.

Obviously I’m very nervous but at least active treatment will hopefully be better than the 6 week wait.  My wife’s cousin, who is a doctor, is taking me for my first treatment.  I think I’m her new pet project.  Lol. But I’m okay with that.

I’ll update this tread from time to time with my progress.  Anyway, wish me luck and thanks for your continued support.

Cheesey

 
Gawain said:
Good luck. Cancer sucks. Did I read it correctly that you could be doing infusions for more than two years? 
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Yes.  35 rounds every 3 weeks is 105 weeks or 2 years+.

Hopefully not that long.  The therapy won’t cure just stop the progression and shrink the tumor, hopefully.  It’s a small spot, about 6mm, to start with so hopefully good results will enable shorter treatment.

Trying to stay as positive as I can but it’s very difficult.  It’s not in my nature.

 
cheeseypoof said:
Combo drug therapy treatment for metastatic Renal cell carcinoma in my lung starts tomorrow morning at the Abramson Cancer Center in the Perelman Center for Advanced Medicine at the Hospital of the University of Pennsylvania.

Therapy will be a combination of immunotherapy infusions of Keytruda and oral chemo therapy.of Inlyta.  The infusions will be every 3 weeks for up to 35 rounds.  The oral chemo is 2 pills daily. From what I’ve been told and read this particular combo has produced very positive results.

Obviously I’m very nervous but at least active treatment will hopefully be better than the 6 week wait.  My wife’s cousin, who is a doctor, is taking me for my first treatment.  I think I’m her new pet project.  Lol. But I’m okay with that.

I’ll update this tread from time to time with my progress.  Anyway, wish me luck and thanks for your continued support.

Cheesey
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Rock on Cheesey. We're pulling for you. 

 
Stay positive.  I’m sure it’s hard not to dwell on the negative in this situation.  And for sure it sucks and I’m really sorry for your situation.  But what will happen will happen and there is plenty of good in the world to experience, regardless of circumstances.  Hope you can find joy and peace in these terribly trying times.

 
cheeseypoof said:
Sometimes my life seems like the fight against Clubber Lang in Rocky 3.  I get my ### kicked early but stumbles through then wins in the end.

The phrase: “You ain’t so bad” is rattling around by brain!  Lol

https://youtu.be/I7krz_Krn4k
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Think of yourself as a role model because you are. Once I got past my diagnosis 4 years ago, I found just how many people were looking at me and others like me who seemed to cope well. Even though I am 4 years out, I still help people facing this scary disease by showing strength and hope. I also share fears as they come up but always leave the person with a positive, which helps me as well. If I ever get rid of some of my side effects which includes terrible fatigue, I'd love to volunteer as a support person.

 
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Thoughts and prayers. Fight the good fight. Hopefully you will find a cute nurse or two in your infusions and it will be a bit more tolerable 

 
Tom Skerritt said:
Any chance that this is not metastatic disease? Can a biopsy be collected at a future date? Several things can present as small lung nodules.
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A slight chance, but unlikely.  Based upon the stage and grade when the cancer was discovered (stage 3/grade 3, with infiltration of the tumor into the IVC) metastaces was the ultimate outcome.  Also due to the quickness that this particular spot/nodule appeared (not there to 6mm in 4 months) makes it highly suspicious.  The other nodules present are static or have only grown slightly in the past almost 2 years.

Too small to biopsy.  Needs to be 1cm at least in order to be able to needle biopsy.

 
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