September 5, 2017,
Registered for courses in personal training and weight management specialist. Reinventing myself, at least I can still use my psych and aba degree in my new venture as needed.
Certified Weight Management Specialist II
The job I had before my treatment shut down, hum? Helping people, Medicaid paid, sounds like Government cuts. For the children too? Terrible.
August 28,2017 (Day +190)
Rituximab infusion #3 success on the first try, very happy I only have 2 left!
August 22, 2017 (Day +184)
WBC 6.1 RBC 4.03 Platelets 235 Absolute Neutrophils 3.8
July 28, 2017 (Day +159)
WBC 5.4 RBC 3.85 Platelets 243 Absolute Neutrophils 3.6
June 29, 2017 (Day +140)
Rituximab infusion #2, veins not cooperating, 5th try was successful! No allergic reaction. Three more to go…
June 27, 2017 (Day +138)
WBC 12.9 RBC 3.63 Platelets 238 Absolute Neutrophils 10.2
My blood work is a roller coaster! Dr. says it’s normal after chemo and not to worry.
June 24, 2017 (Day +135)
Tomorrow I start the 40mg each morning for three days in preparation for Rituximab infusion #2
While I have not been posting for over a month I have updates on my progress. I am able to take eggs out of the carton, hold a pot or bowl with one hand and scoop food out with the other, put toothpaste on my tooth brush and not have to put it on the counter to use 2 hands opening the tooth paste, I can put my fit bit on without help, put Tilly’s choke collar on her myself and tolerate the sun for hours instead of 20 minutes! I am working on my typing skills…
sorry, just turn your head
May 31, 2017 (Day +111) Gotta get stronger!
May 20, 2017 (Day +100) 11,422 steps, that’s 4.91 miles!
May 19, 2017 (Day +99) 8,607 steps, that’s 3.7 miles!
May 18, 2017 (Day +98) 8,024 steps, that’s 3.45 miles!
WBC 3.8 RBC 3.63 Platelets 201 Absolute Neutrophils 2.2
May 17, 2017 (Day +97) 9,422 steps, that’s 4.05 miles!
I am averaging 3 to 4 miles a day!
May 13, 2017 (Day +93) 9,310 steps, that’s 4 miles!
April 28, 2017 (Day +78)
Must learn to rest. Must come to terms that I am NOT Superwoman!
April 24, 2017 (Day +74) 2,769 Steps
Rituximab infusion 2nd try. Steroids 3 days in a row and I will have it started in the iv. Also benedryl in iv too. And I have a bell to ring if I need anything. Went perfect, no allergic reaction at all!
April 20, 2017 (Day +70) 6,598 Steps
April 18, 2017 (Day +68) 7,178 Steps
WBC 4.1 RBC 3.81 Platelets 229 Absolute Neutrophils 2.7
April 4, 2017 (Day +53) 8,258 Steps
I got a phone call from the lab, Dr. Perez wants two different blood tests, General Chemistry (all was within range) and C-Reactive Protein (CRP to check inflammation, which is in range as well). My next blood work will be on the 18th, two days before my first at home Rituximab infusion!
March 30, 2017 (Day +48) 798 Steps
WBC 3.7 RBC 3.63 Platelets 174 Absolute Neutrophils 2.9
March 27, 2017 (Day +45) 6,221 Steps
WBC 4.3 RBC 3.77 Platelets 154 Absolute Neutrophils 2.5
March 23, 2017 (Day +41) 903 Steps
WBC 4.0 RBC 3.65 Platelets 153 Absolute Neutrophils 2.8
March 20, 2017 (Day +38) 155 Steps
All numbers a little lower, this is the roller coaster.
WBC 3.0 RBC 3.70 Platelets 179 Absolute Neutrophils 1.7
got a Fit Bit, my walking is better, so lets start counting steps…
March 16, 2017 (Day +34)
Numbers raised, no need for a shot of neupogen AKA Filgrastim. WBC 3.6 RBC 4.09 Platelets 250 Absolute Neutrophils 2.1 since the infusion center is 5 minutes from home. I drove and did fine!
March 13, 2017 (Day +31)
Too low, WBC 2.1 RBC 3.88 Platelets 294 Absolute Neutrophils 1.0
Blood tests 2 times a week now for the next 3 weeks.
March 6, 2017 (Day +24)
Blood work, I feel great, looking forward to physical therapy! WBC 3.3 RBC 3.80 Platelets 351 Absolute Neutrophils 2.1
March 1, 2017 (Day +19)
Please share this informational link if you or someone you know has an autoimmune disease! The immune Renewal Foundation is a great place to start your research they are on face book.
ALSO, google HSCT blogs to see others that had the same treatment as me.
February 28, 2017 (Day +18)
Rest, eat, rest, eat, I am so hungry! In order to stay safe…
February 27, 2017 (Day +17)
8:15 am visit to Dr. Perez, my hematologist. Blood work on Mondays and visits with him on Wednesdays so he can physically see me and how I am doing! WBC 3.9 RBC 4.26 Platelets 212
February 26, 2017 (Day +16)
A half hour delay for a potential opened latch made the flight 30 minutes late! I missed the flight to Reno yesterday so they put us up at Comfort Suites… Got to Reno at 11:30 am!
Lance and Dad to welcome me back! I slept the whole way home, I never sleep in the car!
It’s so nice to be home!
February 25, 2017 (Day +15)
3:50 pm Delta Airlines to take me home! I miss my family!
February 24, 2017 (Day +14)
Walking better and the weight has been lifted and I can raise my knee!
February 23, 2017 (Day +13)
Slept in, started packing, 2 more days! Pictures before we go home…
February 22, 2017 (Day +12)
I will sleep in, no shots or blood draw!
February 21, 2017 (Day +11)
NO Filgrastrim shot, Yeah! 2 small vials of blood taken. We saw the Big Guy today, Dr. Ruiz! My leukocytes are up to 48,200. He told me my treatment has been successful and I may go home! My leukocytes will level out, I have to watch what I eat so I reviewed that with him and I will be fine. I cannot eat salads, fresh fruit and vegetables. The things I can eat outweigh that, so another small price to pay that is temporary until my immune system is stronger. I will be visiting the lab and hematologist after I am home, physical therapy 2-3 weeks after too. Put a little pin on Gardnerville, well, below Reno to show someone came from there to defeat the MonSter.
Last infusion of Rituximab until I am home where I get 5 preventative 100mg infusions.
The Infusion Team
February 20, 2017 (Day +10)
My leukocytes are up to 3,100 I will only need one more filgrastrim shot! I need to be at least 4,000 Nausea today so nibbling crackers and water, the electrolyte drink tastes terrible and makes me nauseous by itself. Feeling better at 11pm, ate some noodles, I’m gonna live!
February 19, 2017 (Day +9)
Today is the day to cut my hair off and shave my head. more hair is coming out than usual so it’s time. I am donating it to children with hair loss. Diana put my hair in pony tails…
February 18, 2017 (Day +8)
My walking feels better than yesterday, I veer to the left, gotta work on that! Love my warm socks that my grand kids got me for Christmas! Since I can’t go out of the apartment I can practice all day!
February 17, 2017 (Day +7)
Filgrastrim shot given and 2 small vials of blood taken. My Leukocytes are at 400, the Hematologist said my number will start to go up, those awful filgrastrim shots are not only helping to keep my number from going too low, but will help to raise it. It is the chemo that causes the leukocytes to get so low, it’s the necessity of rebooting my immune system. He also said this is when he sees many patients having improvement in balance, walking and/or writing!
February 16, 2017 (Day +6)
Good morning Filgrastrim… On lock down, I have to stay away from possible invaders that can make me very ill. Music, games on the ipad and a movie fill the day. I also practice walking down the hall watching each leg take steps. My left leg that seemed to weigh 50 pounds does not feel heavy, I can lift my knee more than before treatment started! I can’t wait to start physical therapy and get back on my Pilates reformer, stretching feels so good!
February 15, 2017 (Day +5)
Filgrastrim and 2 small vials of blood this morning. Appointment with hematologist, My numbers went down more as expected. 1,700 Leukocytes I’ll ask my shot person tomorrow, he is in the hematology department. A little walking to post tomorrow…
February 14, 2017 (Day +4)
Happy Valentines Day… this is the first time I will not be with Lance in 25 years! This must be made up for!
Diana surprised me with chocolate covered cherries and they are ok for me to eat! Another lazy day, filgrastrim in the morning then…………… Movies and games on the ipad and visiting with Diana….
February 13, 2017 (Day +2)
8 am, two small vials of blood drawn and one filgrastrim shot, I will not have an evening shot so hoping I do not get a headache or migraine. Since chemo is over I can take an imetrex if needed. Next week I will not need the shots if my blood is good. My red blood cells, white blood cells and platelets are kept track of and will be the deciding factor on the shots I receive. Hematologist says my numbers are a little low and that is perfect, he said I am entering the neutropenic stage, making progress! 3,650 Leukocytes, I will get the exact numbers of Leukocytes, Hemoglobin and one other that I forget on the paperwork when this is done.
February 12, 2017 (Day +1)
Today was a lazy day, I did not feel like getting out of bed. I was able to sit outside for about ten minutes with a mask on. It’s all about staying away from possible germs. I am shifting into neutropenia where my immune system will be at it’s lowest increasing my risk of being sick. I will spend my time in the apartment and only go to see the hematologist every other day to go over my blood draw that morning. I will receive Filgrastrim shots each morning which go with my results of my blood work.
February 11, 2017 (Day 0)
Diana, Kory and I. Kory cleans our apartment 6 days a week!
I get my stem cells back! This is the day, when, by infusion, my stem cells are given back. It will last 20 to 30 minutes. The stem cells are mine, so they will not be rejected.
February 10, 2017 (Day -1)
LAST CHEMO! I woke up headache free, so I knew it was going to be a good day. Diana made me breakfast (Eggs with onions and mushrooms, apple slices, blackberries, raspberries, and blueberries) I cannot eat like this during neutropenia.
February 9, 2017 (Day -2)
Apheresis day, this is how blood will be taken from me and stem cells separated and kept in refrigeration until Day 0 (zero). Stem cells counted before we can start chemo, our whole group passed! I needed 50 million and got 107 million! I get chemo! Even though I didn’t feel great in the morning I started feeling better and we went to eat while they were counting our stem cells. Dr. Priesca said that my headaches seemed to be caused by the Filgrastim shots we received, all my bone pain was in my skull. I did not hurt anywhere else. Those are my stem cells! In this room it feels like we are sitting on top of a giant motor of a car, you can hear an engine and feel the vibration!
February 8, 2017 (Day -3)
Catheter placement for Aphresis, so my blood can be taken, stem cells separated and kept then the blood minus stem cells goes back in me.
They did a wonderful job, it doesn’t even hurt!
February 7, 2017 (Day -4)
shopping. The mall is huge, 2 stories and a casino!
February 6, 2017 (Day -5)
We walked to Walmart today, it’s just around the block then our group -2 people had dinner at P. F. Chang’s. We got back to the apartments in time for our evening shot… It’s like curfew!
February 5, 2017 (Day -6)
New pills to take…
February 4, 2017 (Day -7)
Filgrastim shots am and pm
February 3, 2017 (Day -8)
Migraine today, I will not take an Imitrex unless I know it’s ok with the pills I am taking. Finaly at 8pm I got the ok, Migraine gone in 15 minutes. I did learn the Imitrex will not go with the chemo though. They told me how strong the Imitrex was, all I know is it’s the only thing that works. I learn later it’s from those shots…
February 2, 2017 (Day -9)
Filgrastim shots twice a day to help my bones release more stem cells in preparation for harvest and three little pills in the morning and one at night I think are a steriod, antiviral and I’ll find out. The shots are sub Q and sting, but I can do it!
Also Played tourist today in Cholula, where they have 360 churches and fireworks are let off all day. http://www.visitmexico.com/es/centro-historico-de-cholula-puebla Diana on the littlest volcano!
Which one is m.s?
February 1, 2017 (Day -10)
I survived the first chemo, so onward to day 2, the needle remained in my arm from the day before so it was a relief to know I will not be poked by a needle again! I started feeling a bit of nausea on the way knowing I would receive the anti-nausea medicine, nope, I was still feeling nausea after 3 hours. I finally threw up! Now, I am healthy, yet I was the only one that got sick in our group.
January 31, 2017 (Day -11)
Our 20 was divided into four groups of five, the day started with an information consult, medical history then a hematology consultation. I was given the green light by Dr. Ruiz, I was healthy enough to begin CHEMO!
At 1pm I began a 5-hour session of chemo, I was one out of four that I will become friends with for life! We were given an anti-nausea medication and something to help our stomachs take the chemo. The only part that hurt was the needle going into the vein on my arm, it really hurt. It did not feel right or look right, so the head nurse replaced the needle putting a new one into my right arm, now try to text! I was able to relax in my recliner.
January 30, 2017 (day -12)
At 7am I had 9 vials of blood drawn and a poke in the ear to check how well my blood coagulates, (the vampires) Lupita and Juan were on time, the blood draw was painless without a bruise, but on my earlobe? Long day today of testing…. Great news with my lungs are good, after the EKG the cardiologist said I’m perfect! I saw the neurologist last. My neurologist of 15 years and the m.s. specialist that I saw for 3 appointments never gave me an EDSS (estimated disability status score) the specialist even said I do not need one. That specialist made $23,000.00 in 2015 from the drug companies that make m.s. drugs.
So, I go online and find out how to do an EDSS, more to it than I thought, so I guesstimated 4-4.5
It goes from 0 to 10.
All 20 patients and caregivers were taken to a conference hall where everything was gone over for our treatment and questions were answered. Paperwork was signed and we started further testing. My meeting with the neurologist was detailed more than ever before. I was given a 6 on the EDSS (estimated disability score scale) which made me cry, Then I got Pissed, how dare the FDA decide when we can actually be helped? We have an FDA and other Countries have ethics! All of the drugs used for HSCT are and have been approved by the FDA for years, now they have authority to disapprove people?
It’s a good thing I’m here!
January 29, 2017
some of the patients were picked up from other hotels and were shuttled to Puebla too, twenty in all with their caregivers. They have not only come from America, but London, Norway, Denmark, Ireland, Australia, and the Netherlands! I was able to drop my bags at the apartment, we went to Walmart for 1 hour to get some food. A driver took me to pick up Diana at the Puebla airport. Other patients went out to dinner so we were able to join them. Pegah (Denmark) is in front on the right, she is 30, we are close in symptoms and she will be in a group of 5 with me. Pegah’s mother Sarah and her brother Peyman will care for her.
I am behind that lady on the right, toward the back. Really.
Our 2 bedroom 2 bath apartment was perfect with a washer and dryer, TV and internet. We also have Kory, she will clean the apartment 6 days a week!
January 28, 2017
Landed in Mexico, City! Glad I ordered Pesos at home so I could tip the people that got me to the Hotel. Jennifer got in at 3pm and me at 5pm. I got a room with 2 double beds so it didn’t look like I was alone, strange Country whats a girl to do? Jennifer was on the January 30th HSCT facebook group and since we would meet up with Diana and her care person Juanita on Sunday it worked out perfect.
In downtown L. A. a woman who has Multiple Sclerosis painted a mural and people could sign it. I believe Pat Jenkins, Mayra McGown and I are the only ones who did. Thank you, Jonna for taking me and for your legible print!
This was an eye-opening experience also, I was honored to be able to volunteer with Jonna for the month of January with Worthy of Love’s Birthday party! They celebrated 4 years of giving monthly birthdays for children who otherwise will not have birthday parties.
Arrived at my cousin Jonna’s 1 1/2 hours and 2 Xanax later. 4 days of visiting was not long enough, but we had fun!
January 24, 2017
My first passport!
At the Reno airport my dad met Lance and I I have never been away for over a month!
I will fly out of Reno, Nevada on January 24th to LA for a short visit with my cousin Jonna and leave from there to Mexico City on the 28th. I will share a room with Jennifer, flying in from Virginia, who is also fed up with her m.s. On Sunday we, along with several other patients that fly in from around the world will travel 2 hours by shuttle to Puebla where we will drop off our luggage and hopefully get some shopping in before the next few busy days.