Wednesday means Wigs! (Day 23 Cycle 1)

Schedule of the Day:

• 12:30 Cardiac Oncology appointment with _________ @ BWH 
• 5:50pm Wig Appt at The Salon on 10 Newbury Street, Boston 
• Bob & Kim back "home" in Wrentham - Apartment 43D 

PFML: We got the denial from the state on our PFML application which was expected.  They accepted the medical rationale, but rejected due to the amount of time of employment.  This is great - we needed their acceptance of the medical rationale.  Now this decision goes to Unum which will allow them to continue with their processing.  ALL GOOD. 

Parking @ Dana Farber:  The sloth said that our parking expired on May 9th, 2022.  It actually was approved for 2 years on May 3rd to go until 2024.  So Kim put a call into Karen and Jackie to hopefully get it worked out before the appointment is over. Update:  Jackie called Summer directly and said that she is all set on parking until 2024.  PHEW!!!  We love free parking.  

Cardiac Oncology Apt: Laura and Summer went to the appointment.  The Dr. didn't want to Facetime but ended up allowing Bob to join for a bit.  Technical difficulties - so Laura and Summer read the questions Bob forwarded.  Well, some of them! Haha - the ones with strike through got vetoed by Summer. 

        ◦       There is more ‘mass’ around the medialstinal region, like a ‘scar tissue’ (that is not lymphoma cells) Will that inhibit cardiac function in athletic events (gym workouts, running, frisbee, walking the dogs, etc) in six months? One year?  (Example: It’ll shrink as the tumor disappears, but it’ll shrink slowly. After a year, 90% of the ‘non-lymphoma mass’ will be gone.  Nearly negligible influence on cardiac function once the lymphoma is gone, but an image scan will confirm it.) 

        ◦       For the past four weeks, we have been very diligent about keeping summer from ‘rolling over’ onto her right side because the mass/occlusion would collapse the return of the blood into the heart. Is that still as much of a concern as it was four weeks ago?  If she were ‘allowed’ to lay on her side, can we try that today while monitoring heart rate, blood pressure, etc? I feel that practicing rolling over at Brigham and Women’s hospital is going to be the safest place in the world to try this death-defying maneuver. 

        ◦       The lymphoma tissue that is within the heart/superior vena cava - does that still pose a threat to clots elsewhere as this lymphoma is still ‘sloughing off large amounts of cells’ into the circulatory system?
        ◦       Will Summer be able to play the piano when this is all done? 

        ◦       Monitoring heart rate at home with consumer electronics: we use Fitbit and apple watch. Is this even worth considering?  Is there an app available to use with the apple watch/Fitbit data that helps monitor heart rate?  O2 saturation?  Is it worth it? 

        ◦       At this point, how MUCH of the tumor has ‘died’? (Example: 80% of the lymphoma cell population?

When Summer first went to the hospital her effort unit was at 75 and now it is at 67.  Normal is 58. I don't really know what that means - but it sounds better. ;) 

The Doctor's Orders:   

- Minimum of 64 oz of water a day.

-no Exercise.  Just walking.

- there will a scan 'now' and then one at the end.  The scan now is essentially the soonest we can get one set up.  Cardio MRI scheduled for May 20th at 7am.  They wanted to do it Sunday but being on a drip wouldn't be possible so we took the first available appointment.  

Next up - The Salon for a fitting of some REAL HAIR! ;) 

This looks amazingly real.  I can't believe it.  (Thank you, Nana & Aunt Betty!!!)

Summer can style it, pull it in a pony tail.  Curl it with a curling iron.  REAL HAIR.  It's amazing.  

They are now going to make her own custom wig and color it to look like this video Summer showed them.  

Summer comes back May 27th to pick it up! ;) 

Back at home and having fun with the wig Summer got from Amazon. 

This picture totally cracks me up!!