I'm Finally Home - Just in Time to Ring in the NEW YEAR!!

1st Blood Transfusion

Shout Out to All Blood Donors:  I just want to take this time to thank all the blood donors out there!!!  You are true HEROS!!  During this admission I required 4 transfusions (3 packed red blood cells and 1 platelet).  As a blood donor (before being diagnosed) I thought I understood the gravity of blood donation but honestly, it wasn't until I was on the other side, as a blood donation recipient, that I truly realized how AMAZING this really is.  Blood transfusions are life saving!!  If you already are a blood donor - THANK YOU!!  If you are not - please consider donating if you can (click here for more info).

The Bumpy Road to Discharge:  I received the 6th and final dose of IL-2 on Friday morning, as planned, and things were looking promising for a Sunday 12/27 discharge but in true black cloud fashion, there were a few more bumps in the road to discharge.  Early Sunday morning I spiked a fever and had to have cultures drawn to rule out a new infection.  I knew that this new fever meant no discharge on Sunday.  Earlier in my admission I spiked a fever and the team diagnosed me with a UTI.  I had previously been on IV antibiotics but had been changed to oral antibiotics in preparation of my discharge.  So due to the new fever I was restarted back on IV antibiotics for the time being.  I felt pretty crappy for most of the day and was really sad that I wouldn't be able to go home but tried to focus on the silver lining.  Better for this to have happened while I was still admitted rather than when I already went home.  I would have absolutely been heart broken to have be discharged only to have to have Nathan drop me back off to be re-admitted for a fever.  Early Monday morning I spiked another fever and had to go through the process of cultures being drawn again.  Based on the negative cultures the team concluded that the fevers I was experiencing were most likely due to my body working to replete my white blood cell count (they said fevers sometimes just happen).  On Tuesday 12/29 I woke up and felt much better and had no fever overnight!!  And to my surprise the team decided I could go home (after some electrolyte replacement and a blood transfusion to "tank me up" as they say).  I spent most of the morning slowly packing up all my things (I had accumulated quite a bit😁) and by 4:30pm Nathan was there to take me home!!

Sooooo Good to Be Home:  I can not express how good it feels to be home!!  Nathan did an amazing job cleaning the house, making sure everything was safe for me, and has been taking excellent care of me (as always)!!!  These last few days I have been resting and have only left the house to go to the lab to get some blood drawn.

The Plan:  For now I am just recovering at home and letting my immune system bounce back.  I have a follow-up appointment with the study team on Monday 1/4 and will have more information on what is to come:)

Good riddance 2020!!!!  Bring on the new year!!!!!!!!!!!!!!!!!!!!!!!!!!

Santa brought me my last dose of IL-2 for Christmas!!!

Update on TILs infusion day:

First TILs bag

On Tuesday 12/22 I received my army of TILs via an infusion of 3 IV bags.  I was amazed by the process (since as a research pharmacist I am not involved in the preparation/administration of any of the cellular products).  A very nice Cell Therapist, arrived shortly before noon with the cryo-container (super cold container for the three infusion bags containing the TILs), gloves, water bath, and lots of paperwork.  After my nurse set up the normal saline carrier fluid, the Cell Therapist, removed the first metal IV bag holder from the cryo-container (click her to see video), verified the information with the nurse (making sure it was for me) and placed it in the warm water bath to slowly thaw the cells.  After a few minutes the Cell Therapist removed the IV bag and handed it off to my nurse to be hung.  Each IV bag contained about 100mL and ran over 30-45 minutes.  I was super excited to see this part of the study and prayed that the infusions went well.  I am happy to report that all 3 IV bags were infused with no issues at all 😊.

Update on IL-2 infusions:

Just hanging out :)

The IL-2 infusions are necessary to really ramp up the TILs and make them work.  This study involves 6 IL-2 infusions, 12 hours apart, with the first one starting on the same day as the TILs infusion at 8pm.  I was really nervous for the IL-2 infusion because I know that these infusions can be really hard for patients.  The first 4 IL-2 infusions went smoothly with no issues.  However, a few hours after the 5^th IL-2 infusion (that was given 12/24 at 8pm) I started to have some significant low blood pressure readings but wasn’t having any symptoms.  Thankfully, after 3 liters of fluid (and several hours of the nurses having to provide one-on-one care) my blood pressure stabilized again.  Just to set the scene – if the 3^rd liter of fluids had not worked, the next step was transferring me to the ICU so that they could start medications to increase my blood pressure.  I was so thankful that we avoided that!!  It was a Christmas miracle!!  Since I remained stable, I just received my 6^th and final dose of IL-2 on this white Christmas morning.  And so far, things have been going well – fingers crossed.  I will have to be monitored for 24-48 hours after this infusion to make sure that I don’t have any reactions.

Ta-ta for now!!  I will post another update soon😊.

My TILs Army is in TRAINING and I am on my way to lymphodepletion!!!!

The last few weeks have just flown by!!!  Come on 2021 - the world is ready to be done with 2020!!!

My cool ab-surgery pillow

Update on 11/23 surgery:  The surgery to remove tumor was a success!!  The surgeon was able to remove tumor that was not located close to my GI tract so there was less risk of contamination.  My incision (same place as the last two abdominal surgeries) has been healing nicely with just a little bruising.  I was able to return from work on 11/30 (working from home) and have been keeping busy with tying up all the loose ends in preparation for me being off work for the next 6 weeks.

Current State of Play with the TILs Study

I had my follow-up (check-in) appointment with my study team on Monday 12/7.  Labs were all looking good, my recovery from surgery was sufficient, and I was deemed suitable to move forward with the trial and the planned hospital admission.  

My TILs Army

Later that day the study team received word from the biotech company confirming that the TILs were growing appropriately!!!  YAY - my little TILs army is being recruited and is in basic training in California!!! 

The last hoop to jump through was my COVID test - which I had on 12/10 - and am happy to report it was NEGATIVE :)  After the 5 COVID tests I've had (most for procedures and surgeries) I feel as thought I am a COVID test pro!!  The nurse doing my last test agreed 😁. 

Study team snuck me a tree :) 

On Monday (12/14) I was admitted to the James for my two week admission.  For that first day I just settled in to my room, unpacked all my personal items, had some labs drawn, and IV fluids started.  On Tuesday (12/15) morning I got my PICC line placed.  I need this line, in addition to my port, since the cell infusion can't be infused through my port.  By 10:30am on Tuesday I was receiving my first dose of chemo - Cyclophosphamide.  I received my second dose of Cyclophosphamide on Wednesday (12/16) without any issues.  The only real downside initially was the fact that I received lots and lots of IV fluids and had to go to the bathroom every 2 hours (around the clock) to make sure I was emptying my bladder (decreasing the risk of chemo induced bladder inflammation).  On Thursday (12/17) I received my first dose of Fludarabine and really started to struggle with nausea and an aversion to all food.  However, by Friday (12/18) afternoon I was starting to feel better and have been able to re-establish my relationship with food :)  Earlier today I received the 3rd dose of Fludarabine with no issues.  The plan is for me to receive a total of 5 doses of fludarabine (depending on my cell counts and status) and to receive the TILs infusion on Tuesday 12/22 (TILs army will be called to duty)!!!

All the notes and cards!!

Overall I am hanging in there but the no visitor rule is really hard.  Nathan had to drop me off outside of the hospital on Monday 12/14 and I have been limited to phone and video calls with friends and family.

Thank you all again for the kind notes, prayers, calls, texts, vibes!!!  I couldn't do this without you guys!!! 💙💚💜🧡