Rower Michelle

#4 done and dusted . Solo 3 hour trip to treatment centre and back as no support person allowed into unit. Persistent cough and mild shortness of breathe. Doc listened to chest and clear of noise. Bloods all stable and within normal parameters. Still couple months away from next CT scan. New Zealand in strict lockdown. Only essential workers allowed out homes or if have ssentialntravel like mine yesterday. Slow increase in numbers of positive cases but last 3 days been almost static . Some people not playing by isolation rules and getting a hard word from either their community or the system
 
Thanks for everyone’s positive approach and goodwill
 
Grahame

Wow Barb and Tomm are nearing the finish line.  Almost there peeps. Keep the faith (and the jokes) going!!!

#25 done with good blood work and some fatigue
When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19.  All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients.
I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. 
good luck to my fellow Durvies..
Joke #1    I know a great joke about Corona Virus, you probably won't get it though.
Bonus joke...  Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice.
, 

Thank you Michelle snd DFK. I did tell my drs about the symptoms and she looked at my ct scans and didn’t see anything.  Shortness of breath has subsided and I have an appt with the pulmonologist in April. But I’m not due for another scan until May. 
Staying indoors except for s grocery run or drs appt. New York is eerily quiet. I live near Times Square and have never seen the streets so desolate. 
Be safe everyone 
Polly

Hi Polly,
I’ve been thinking about you in NY. Please stay safe.   The symptoms you describe could be a routine side effect or potentially pneumonitis, a more significant but treatable side effect.  Call your doctor and let them know right away.  Living in this world there is no such thing as a false alarm, only peace of mind.  Report everything.  It’s not complaints it’s informing the medical team. It takes a little while to make that mind shift.  Hang in there!
Michelle

Hi Durva Club!
In  case you all missed this, Kristin of Lungevity is hosting a virtual coffee under the “General” section of this Forum tomorrow at 10am ET. 
For many of us, activities have been canceled so this is one way to pass the time & keep each other company.  We are invited to chat about anything.  
Hope to hear from you all!  So great to hear about the fabulous news from Barb and Kate! 
Like Steve Miller said- keep on rocking! 
 
Michelle 

Hi, just catching up on posts, I worked in the Insurance field, and yes they will deny deny deny, you just have to keep after them like a barking dog! Unfortunately =( until you get the right person and you will get approved. Rule of thumb was deny 3 times before approval, made no sense then, but that's how they did it. I had a headache everyday, getting people approved in the mental health field. I'm sure it's the same in the medical field as well.

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

Thanks DFK 
your optimism is contagious. Let’s just replace Covid19 with your contagion 
Grahame

Good to hear Tomm
Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in  NZ 
Grahame

Hey Barb, 
Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine.
Take Care, DFK
 


 

Well here I am waiting for #22. Saw the onc. She also states CTs are better than PETs and she’s not worried about it. Asked her how will we know if I get to NED. “I consider you NED and you are all scar tissue”. Woohoo 

No uptake= No cancer, as far as I was told. My PET on Wednesday, great results, clear, so I'm good for another 6 months check with PET. So I am going to live it up! At home, with my compromised lungs until the Corona virus is in the rear view mirror! So now is clear= NED? Thanks Kate

Look out peeps! Kate was’t kidding when she said she got her Irish up!   Go Kate go! 

Barb- that totally sucks!  Aside from the appeal process you might want to call the Department of Insurance or your Senators.  They despise insurance companies and are happy to advocate on our behalf.  Plus it’s another way to get out this frustration.  😡 

So ticked off right now. Insurance denied PET again. Said unless CT is inconclusive won’t approve a PET. So now it’s another CT to be scheduled. How are you supposed to know if it’s dead or spread somewhere else without a PET?

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

Sorry- Jersey Girl. It was too early in the am to type out the full word.  Sorry about that.  Maybe get some soft serve ice cream too.  

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Polly it's good hear your on your way with Durva and your killing your cancer. I look at side effects as part of the battle going on in your cells with the Chemo and radiation still in the fight and now getting help from Durva. It's OK for you to call your Doc anytime you have a worry and he-she may have some help for you & or ask here and someone may have an answer.
keep us posted and drink lots of water
"I have a lot of growing up to do. I realized that the other day inside my fort."