The First Week.

Sunday September 4th, 2022

More excruciating pain.  It was unbearable, Tony asked, "What Boston hospital are we going to because you are NOT going to Worcester again?"  We went to Newton Wellesley, where my Rheumatology team was. Within minutes, I was wisked to a room bypassing the 25 other people in the waiting room.  CT scan, EKGs, all showed internal bleeding and the lacerated spleen and a liver double the size that it should be.  Tons more tests and bloodwork commenced.  I was admitted. 

Monday 

Typical holiday, lots of students, more testing.  Waiting game. 

Tuesday

Lots of discussions happened today, met a wonderful team of MDs and RNs who have great bedside manners on the USEN floor.  Haven't slept.  More status quo, bloodwork and testing begins tomorrow.  

Wednesday Update

I got my PICC line today, and tomorrow they will be moving me to the Hem/Onc floor where the staff is more specialized in cancer treatment.  I had my PET scan this morning, and the Bone Marrow Biopsy (yes it was excruciatingly painful, think, fetal position hysterically sobbing) this afternoon it will take a while (several days) for the results for the specific type of cancer to be diagnosed.    As soon as we have the type, chemo treatments will begin.  I got back to my room and I have 3 episodes of tachycardia,  which sent my room into a MD Frenzy.  My heart rate has been high around 130 for weeks, but today it spiked up to 179 and over 200.  EKG didn't show anything.

Thursday Update

Ok, today my Mom was here when we met the Lymphoma Specialist, Dr Robb Freidman, he is medical director of Mass General Cancer Center and satellites out of NWH 2 days a week. He told me that I definitely have Lymphoma, just not Mantle Cell, that has been ruled out. When he looked under the microscope the cancer cells in my blood are tiny and are along side the healthy cells that are still duplicating. This is still not definitive but they have reviewed my case with rare infectious disease physicians and they have come to the conclusion that I could have a disease called HLH which has prompted all of this nonsense in the first place. A sample of my bone marrow and red blood cells have been sent to The Mayo Clinic for a board review, those should be back sometime next week. I am still moving to the Hem/Onc floor soon, yay for a private room. Most likely Chemo will not be starting until they know both, the status of my HLH Disease and the exact type of Lymphoma that I have.

Fridays update

OK, patience was really hard for me today, I stayed mostly away from the phone today because the ability to self control not looking things up on Google was becoming overwhelming after the HLH Disease prognosis kept me up all night.  These thoughts were pretty dark.

1. I most definitely DO NOT have the HLH Disease.  Today was full of bloodwork which finally was able to rule it out fully. #bestnewsevah

2. Bunches of complications with the PICC line and breakthrough bleeding. IV Consultation needed to relook at it throughout the day.

3. With a lengthy leave of absence from work comes bunches of dreaded paperwork as well.  Worked with a social worker to complete the forms today as when treatment does start, completing this will be more difficult.  This took a while. 

4. Nutrition consults again.  This stupid onion allergy has me not able to eat very many things on their dinner menu, so the Food Ambassador was sent to my bedside with more options for me to try.  I also got a really good shake option now for those only liquid days. 

5. Sometimes ya just need a home cooked meal.  Favorite meal, steak, baked potato, steamed spinach and mushrooms was a lovely treat hand delivered from my mom this afternoon, who also helped me move rooms to the Hemc/Onc floor and helped me get unpacked and settled.  Thanks you SO much Mom, I really needed this. ❤️ FYI...

NEW ROOM is 419west Oncology floor

6. The update came late tonight from the Hemotologists and Lymphoma MDs, they were really hoping for the final to be here so that I could start chemo therapy today, but unfortunately it has not been confirmed as there are 2 types of this type of cancer and both of them have a very different chemotherapy course.  They believe that the type of Lymphoma is Non Hodgkins Diffuse Large B Cell Lymphoma (DLBCL).  These are THEIR Statistics on it.  70% to 80% need only one round of chemotherapy, (6 months of chemo) others might return for a second round,

(6 more months)  but often the remission rate is very positive.  🤞 🙏 

Saturday & Sunday

Had a wonderful visit with the kids, I miss them so much.  😢 

My oncology team says that my hair will all fall out within 2 weeks.  Cancer won't define me.  My cousin Joanne (Tracey & Aunt Linda too) came and cut it to make my very own wig from my own hair.  I should have it back in approximately 2 weeks.