Final Chapter of the Ocrevus Saga...

 Written 4/13/22: Ocrevus PART IV

Check out previous blog posts for Part I , II, III of the Ocrevus Journey. 

On Thursday 4/7/22 we ventured off to Bend, OR for the third and final attempt at introducing a half dose of Ocrevus to my immune system. This time we tried a different approach to the traveling. After a few trips of hauling luggage, several family members and expensive hotel stays I asked to attempt the trip in one day. The week prior to my appointment we made calls to our family and put together the plans for the day. We decided that my husband would stay home with our son while my mom, stepdad and myself did the traveling and infusion for the day. I knew it was going to be a long day but my goal was to go and come back home to my family where I could relax with my loved ones. 

On Thursday 4/7/22 my day started at 4am. I got up, did my morning routine, kissed my son and husband on the cheek and said "see you soon". At 4:30am I drove to my moms where I parked and locked my car for the day. I then proceeded to climb into the back seat of my moms car where I tried my hardest to rest while traveling. We left about 10 minutes to 5am and arrived in Bend around 7am. We decided to stop at Shari's restaurant for breakfast. It was probably one of the most relaxing breakfasts I have had in a while since there was only 3 groups of people there due to it just opening up for the day. There was no rush to eating and the waitress was very nice. I had an omelets with mushrooms, spinach, ham and cheddar cheese. Of course, since we were in the area where my infusion was located I started hydrating a little more than I did traveling up. After breakfast we ran a few errands since we had about an hour till my appointment. At 8:45am I took a Zyrtec and around 8:50am we arrived at the infusion center. My step dad dropped us off and went golfing for the day since it was in the high 70's. 

My nurse Jeanna greeted me with a smile and already had me signed in. My mom and I proceeded to the bigger room we had last time. 

We quickly got ourselves situated, IV put in, blood drawn, and medications were provided to the nurse by the tech. The nurse did have some trouble finding a vein due to my arm being cold so we had to put the IV in the elbow crease because that was where she felt comfortable poking me. I am not a fan of needles being in the elbow crease but I told her  to do what she feels comfortable with and get me out of here. 

Below you will find the full rundown...

April 6, 2022 

- 0945 Zyrtec

April 7, 2022 

- 0845 Zyrtec

- 0859 Tylenol

-0901 Vitals- 117/92

- 0916-0918 Steroids Administered

- 0920-0950 Wait Time

- 0954 Start Ocrevus Monitor: RATE 30ml/hr   VTBI 15ml

- 1025 Vitals- 132/89 HR 85 Monitor: RATE 60ml/hr   VTBI 30ml

- 1056: Vitals- 114/94 Monitor: RATE 90ml/hr   VTBI 45ml

- 1125: Vitals- 109/85 HR 88 TEMP 99.6 Monitor: RATE 90ml/hr   VTBI 45ml

- 1200 Vitals- 124/90 HR 91 TEMP 98.6 Monitor: RATE 90ml/hr   VTBI 45ml

- 1230: Vitals- 112/84 HR 96 Monitor: RATE 90ml/hr   VTBI 45ml

- 1300 Monitor: RATE 90ml/hr   VTBI 30ml

- 1320 Vitals- 122/92 HR 96 TEMP 98.5 Disconnected from Medication: 300ml Accomplished.

- 1428 Vitals- 97/87 IV taken out and RELEASED with NO REACTIONS

This time it felt like a smooth ride. Last time we were nervous because of the outcome of attempt one. Since attempt two went better this third round just felt more like a routine. It felt like the monitor was constantly beeping but in reality the 30 minute time spans just went by quickly. I guess it may have helped that I hosted the monthly support group zoom meeting so my time was occupied. 

Ocrevus is introduced in 2 sets of 300ml being 2 weeks apart from each other. This allows the patients immune systems to not be overwhelmed with the medication. There is high chances of reactions which many patients like myself experience. A full dose is 6ooml which happens after the initial 2 half doses. In my case: #1: 100ml, #2: 300ml, #3: 300ml = 700ml. There is an allotted amount that can and cannot be given in the first sets. I may have been given a little more ( being in allotted amount)  than usual but it was better for my immune system in the long run especially with a 6 month waiting period before the next. I honestly think that the journey I took was best for my situation. It may have been a rough one and an emotional rollercoaster but we did it. 2 out of 3 infusions completed with NO REACTION. 

Just before I was disconnected from the medication for my hour observation time my nurse came in with an appointment card marked October 6th, 2022 (6 months away) indicating my next infusion date. I started to cry and told her thank you. Seeing the card was like a milestone that indicated that we made it through this first step. It was a rougher road than we had expected but together as a team (family, healthcare and being an advocate for myself) we were able to identify the problem and find another solution. At this point I will definitely be adding Benadryl to my allergic list. Even though we don't have a confirmed yes to being allergic to it, I prefer to be stay on the precaution side. 

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I have never felt SO much relief walking out of a building as I did this last time. I still remember walking in the first time with the feeling of uncertainty, fear and overall, not feeling comfortable. With the help and support of my family I was able to walk out of the building with my head held high and hopes that this DMT will be the answer to my pains. For an hour after my infusion, I was able to sit in green grass under a tree and ground myself. It gave me a chance to gather thoughts, reflect and calm myself for this journey. The weather and sounds of nature were relaxing even though we were amongst the hospital cult-a-sac. My mom and I waited patiently for my step dad to finish his golf adventures. After he picked us up we found Jersey Mikes, ate then gassed up so we could make our trek back home. I made myself comfortable in the back seat and fell into a deep sleep. I woke up about half hour away from home not feeling so well with nausea and some ear pain. The last 30 minutes were a little rough but we managed to make it home by 7pm. I was welcomed home with love and hugs from my husband son and mother in law. The family all ate dinner that my husband prepped. They left shortly after which I helped my husband get my son ready for bed. I got to sing songs, read books and say our prayers of thanks for a good day. I climbed in bed that night and tried to get rest. It was a rough night of sweating, body aches, ear pain and nausea. I didnt expect it to be an easy night because this is what happened the two times prior. 

Friday 4/8/22 I fought mostly nausea, some leg pains, and body aches. I spent most of the day outside with my family because it was a beautiful day. Saturday 4/9/22 was the roughest so far. I wanted to rest but my body felt like I had the flu. I kept myself isolated in our room to try and rest but it didn't happen so much. That night I did pass out and caught up on some sleep which was not accomplished after my infusion. Since then, I struggle the most with body aches, leg pains, numbness/tingling on left side of body and nausea. It usually takes a few weeks after an infusion for my symptoms to subside. I honestly cannot wait for my body to feel better so I can start working out again. 

The next steps are following up with my routine 6-month appointment that is set for Tuesday April 26, 2022. My doctor will do her routine physical exam ( reflexes, walking timed, hand strength, eyes etc) to create a starting point for this new medication. We will use it as a base line. We will probably set up a time and day for an MRI that has to be done 2 -3 months after my last infusion. Hopefully this will be a start to a healthier and less painful journey. I still struggle with sleep at night especially with leg pains but I have to learn to give this time. It isn't all going to be fixed right away. 

I am tired of fighting and exhausted from the pains. I know that my chronic disease is taking a toll on my family as well. My husband told me "It is okay to hang up my boxing gloves, rest and heal. I need to give in so I can begin again." Sometimes the wise words come from your loved ones who too are going through a journey different from you. We don't always know the reasons for why things happen the way they do. All that we can do is keep staying positive and keep living life to the fullest. I will continue to fight but for now I am trying to recover by learning patience, and resilience so I can harness the strength that will help me rebound from this challenge. 

Life is GREAT!

Every day is a BLESSING!

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!