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Hi Ro!!

Thanks for reaching out and checking in!  I started this self isolation plan on March 7th, almost a month now.  I'm finding each day is sort of blurring into the next.  I have a scan scheduled at the end of this month that I wouldn't be surprised if it gets postponed.  Since it's my first scan at the 4 month interval, I'm not sure how I feel about going.  There was a freak ice storm today (after weeks of gorgeous spring weather).  

My mother in law was transferred to Maine Med in Portland today because po-dunk mid-coast hospital didn't have a pulmonologist on staff to treat a pulmonary embolism caused by broken ribs due to a nasty fall.   Now my sister in law in PA has to drive through the danger zone to get to NE while we continue to hunker down in KC.  Normally, we'd be on point for the parents, but LC is a whole new ball game for the family.  

Every day I pray for hubby's health as he took a part time job at UPS just to get health insurance. They've got less than sanitary working conditions along with a slew of clueless, careless young people who are not taking this situation seriously.   We've got hubby living out the of the guest room just to be sure.   So yeah, WAAAAAH!    I think you know I'm normally pretty optimistic but this is getting hard! 

What's the status of the clinical trial??  I think of you often.  Your note brightened my evening!   

Michelle 

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Hi Michelle,

Sorry to hear about your mother-in-law and your hubby!! I hope your hubby will stay healthy. He should wear a mask and gloves regardless.

There is no clinical trial at this point in Boston. So, I'm waiting to see if there will be one in NY in a few months. But because of the virus, the trials seemed to have slowed down and NYC is not a great place to be. I won't have another scan until mid-May, but we know that the cancer continues to grow. There just isn't a treatment at this time. So, like I said, I'm in "wait mode." I'm still working although since I work in a public school it's all online. But, at least I'm able to stay in the house except for a daily walk. I'm remaining hopeful that there will be a clinical trial for me in the spring but who knows what will happen now. If you have a  scan scheduled at the end of April, they may postpone it. If they don't, then just be extremely careful. I think we are all on pins and needles waiting for this pandemic to slow down so that we can have necessary treatments. As with all Stage IV out there, it's a tough time, but I'm doing my best!!

 

Thank you for your kind note and for responding to me. It really helps! Keep me up to date on what's happening with you, your husband, and the rest of your family.

 

Best,

 

Ro

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I am still getting my scan planned for Friday. Phone visit from onc for results. Since I have one tumor we know is growing— hopefully not more! There may be a discussion about changing treatment plan.   I will still have treatment at the hospital based on scan. They are taking lots of precautions to keep us safe 

I’m in Illinois and we are still are going up in cases. It seems this isolation will never end and even when it does it will be scary to venture into the world.  Keep praying 🙏 that’s all we can do.  
Here’s hoping to HEALTH 

Lin

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I’ve been home since March 2nd. Clinic cancelled my semiannual scan and oncologist consult. Re-schedule is for October. 

Have been bothered by recurrence of severe neck pain from C-5/C-6 vertebrae. It is radiating pain and numbness down my right arm and hand. Had a MRI on March 2nd and an orthopedic consult by video. Was surprised how effective that was. Now on steroids and Flexeril. ‘Roid rage is bothering sleep and amping up appetite, but Flexeril is causing constipation.  Didn’t make much of the bad parachute landing in ‘72, but young soldier injuries are starting to show. Surgery is the fix but we’ll need to wait out the pandemic. I can’t sit at my computer (painful) so am limited to my iPhone typing responses. 

But my complaints are insignificant compared to Lin, Ro and Michele and others dealing with active disease. The pandemic’s attack on the lungs is frightening. I hope everyone stays well buttened up. 

Stay the course.

Tom

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You guys are the best!

Ro- so sorry about the clinical trial delays.  One of my friends who has a different kind of cancer pointed out more people will pass on from cancer than COVID but the world has become an insane place.  It's horrible to think that the NIH will fall behind on research as a result of this pandemic.  So carry on we must.  It sucks.  

Lin- best of luck on this scan.  Even on a good day, this is nerve wracking.  One day at a time I suppose.  

Tom- hubby went to airborne school and is paying the price years later.  He's not allowed to go to acupuncture for the time being and he aches everywhere, never mind the UPS gig.  The virus finally made it's way into the UPS warehouse.  It was only a matter of time, with three employees testing positive.  No deets of course! Assuming we're fine since the county health department hasn't shown up.  

We got some interesting news today, because Tim is working in an "essential business" and I'm in a high risk group, our PCP is starting Tim on a preventative  COVID protocol with the malaria medication for 60 days. In addition he will be taking zinc, vitamin c and vitamin d.  (Similarly structured to the NIH clinical trial for health care providers).   

 None of the Kansas doctors are waiting for the clinical trials.  One of the physicians who is a proponent of this approach is the former Governor of KS who is also the current head of the National Rural Health Association.   

We will continue to keep our Lungevity family in our daily prayers! 

Michelle 

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  • 2 weeks later...

So glad to see all of these posts... It helps me, too, Roz, to know how others are doing. I'm just glad to "hear" all of your voices... but I feel such concern as well.

I'm here in WA state "home of the first reported COVID-19 case"... Wow. What a claim to fame!  Our numbers are going down - they are much lower than what I think we all anticipated they could be. Social distancing is paying off, but I greatly fear lifting the restrictions.  The painful and tremendous impact of COVID-19 continues to snowball. The economic impact is frightening, but I know I am just as concerned about re-opening businesses.

For me - looking towards the future - it is hard to maintain a positive outlook. I don't want to have to remain isolated until an effective vaccine is available. I want to take care of this slow growing tumor now in my other lung. I want to be able to assure my son that he will be able to complete college - but he lives with me and we are both concerned about him returning to college next Fall (if it re-opens) in case the virus has not gone away or if it re-emerges. I'm just having a hard time envisioning / hoping and dreaming plans for the future right now.  My son is on the Autism spectrum and was making great strides attending live college classes. I'm seeing him revert back to old patterns of behavior. He said COVID-19 is perfect for him as an introvert - he loves being home and has not left the house since Feb. 27th, with the exception of some walks in our area. Not good! :-(

Most of all... I really wish I had a garden to spend time in and grow my own food... That would eliminate a lot of stress! :-)

Tom - I am sorry to hear about your pain but glad you were able to utilize tele-medicine. Neck pain is really difficult to experience. I hope the meds are helping and the side effects can be controlled.

Michelle - You and your family certainly have a full plate... You must have an awesome hubby. I hated reading he took the UPS job to obtain health insurance... :-(  I ran an online business that has completely gone under since March. I haven't even tried to file for any assistance; we are doing okay for the time being, but I am going to lose my state health insurance now as it is based upon my work earnings, so that has me greatly concerned. If nothing else, I really believe this pandemic has highlighted the enormous need for universal health care in our country. It's way past time! My apologies if this upsets anyone - I am probably making a mistake by bringing politics into the conversation.

Sending positive thoughts for all of you... hoping clinical trials and treatments can continue and resume asap. Just stay safe and know you are not alone!

 

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I certainly understand what you’re saying!   I am on social security and Medicare (not to rub it in anyone’s face) but financially we are fine. 
of course I’m near Chicago which is a hot spot. It appears from the rollout of the plan Phase 1 some things open -  But at risk people stay home. Phase 2 my gym should open (worked part time at Y) but again at risk stay home. Not until Phase 3 maybe I venture out to gym stores etc. 

I will be nervous but still I need to get back to a little activity - safely  

Michelle how did your hubby do on malaria drug?

Some doctor appointments I had were canceled  so we all have to medicate ourselves til issues can be resolved 

These are the craziest times but I believe we will all come out the other side - Soon!

Good luck to all of us

 

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Hi Lin wilki... Good for you working part-time at the Y in your pre-COVID life! I thought I'd like to work or volunteer at our local Y before all of this. I attended their Livestrong program last summer, but I have to admit, I was always a little squeamish about germs / gyms....  Even if I could do so now, I think I'd be too nervous after COVID-19 to go back to the gym, so I admire your optimism but applaud your caution!

Good luck to you as well!

Yes - Michelle - let us know about your husband and please thank him for signing up for the trial!  I'm just sure he's a great guy. I think of you every time I see an adult trike on the trail. Most of them have little banner flags and I keep thinking of your large, colorful one :-)

 

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