Picture tells more.
My body changed
My value not changed My ability changed My identity not changed Rooting in Hope, Exercising Faith, and Surrounded with Love. One day at a time Miracles I see Thankful 🤗 🎗💛
WEEK 43 POST BIOPSY MIDLINE PONTINE GLIOBLASTOMA (DIPG) GRADE IV UPDATE ABOUT MY TREATMENT:
Blood test results came today, leukocyte level 2.8 (normal 4-10), better than last week 2.4. Dr delay the chemo again until my leukocyte level at least above 3.
20 May 2017, my parents came visiting us. We got a lot of gifts Feels like Santa Claus in summer 21 May 2017, walking by the river with my lovely husband and parents. That evening my husband drove me to Frankfurt Klinikum Monday 22 May 2017, 8am, waiting for my husband and parents come to Frankfurt Klinikum. Nurse came and told me that there’s change in the schedule, I will be the first to biopsy, get ready now. I called my husband said “see you in a couple of hours, I go surgery room now”. Husband and parents waiting for me. The biopsy took 6 hours instead of 2 hours. The doctor said the needle hit the tumor and it’s hard, I had slightly bleeding. The biopsy was successful Waiting for wake up.. 1 week post biopsy I can’t swallow after the biopsy I had NG tube installed Paralyzed after biopsy I can’t smile My speech slurred I had catheter I can’t walk The scar My life changed. Dr confirmed it’s Diffuse Intrinsic Midline Pontine Glioblastoma (DIPG) Grade IV 10 days post biopsy I can smile again I was transferred by ambulance to Karlsruhe Klinikum Week 2 post biopsy Start radiotherapy Monday-Friday for 6 weeks I stayed in total 2 months in the Hospital I was depressed with my situation I drool all the time because I can’t swallow NG tube is horrible and discomfort I can’t lift my left arm Tingling numb feeling with my left side body Etc… Dr allowed me home for 1 night on every weekend. So Saturday morning left hospital and Sunday evening after dinner checked in back to hospital, otherwise nurse not happy 😊 I need wheelchair. I was happy that day for the first time went on road trip again after biopsy Week 3 post biopsy Double vision worsened after biopsy, so I wore eye patch. I learned to feed myself through the tube with Hipps liquid food Week 4 post biopsy (1 month) Karlsruhe Dr decided to change NG Tube with PEG (Feeding Tube installed to my belly) Yay, no more discomfort in my nose! PEG. Week 5 post biopsy I can swallow again! So I start Temodal Oral Chemotherapie My German language skills was upgraded during my stays in the hospital.. Thankful for nurses and roomies that were so friendly and caring Can’t stop smiling for able to swallow again. 24 June 2017, my 36th birthday surprise bbq party🎉 Week 7, side effects of steroid start appearing..Cushing syndrome 9 weeks post biopsy (2 months) Yay, finally back home sweet home 🏡 I had to tamper the steroid slowly I had temperature problem, I felt extremely cold during hot summer My parents spent 2 months in Germany out of their original 2 weeks plan, when they went back to Jakarta, my 2 bestfriends from Hongkong and Singapore came for a month to accompany me. I’m loved. 11 weeks post biopsy Kayan and Ashlee, my beautiful angels and sisters to me 12 weeks post biopsy Eating out with my husband I felt awkward with my appearance, but he never failed to show affection. He made me feel safe. Yep, full moon face, one of the symptoms of Cushing syndrome caused by high dose steroid. But my body was thin, especially my legs, I lost the leg muscles. Week 13 post biopsy Strolling the city on wheelchair 15 weeks post biopsy (4 months) First time after biopsy I accompanied him for business trip to Heidelberg 18 weeks post biopsy I had haircut I was standing for 40 minutes 20 weeks post biopsy (5 months) I was getting better My full moon face getting slimmer I can walk with rollator at home I can climb stairs I cook I was sitting in the park enjoying the sun with my bestie visiting from Berlin Week 25 post biopsy (6 months) Start putting on makeup again haha Week 28 post biopsy (7 months) I traveled to Barcelona Dr was skeptical me took a flight and traveling but it’s great! I enjoyed warm sunny days. My hair already lost 70% Week 30 post biopsy November 2017 MRT result showed tumor was growing Dr stopped Temodal chemo and administered me with CCNU Procarbazin However, I did more trips Husband decided to take me along with him for most work trips Week 32 post biopsy My short-term wishes came true: Celebrate Christmas with fam in Denmark Celebrate New Year 2018 Celebrate my husband’s birthday All ✅ Week 33 post biopsy I walked quite far to the park No more rollator, no more shower seat Week 42 post biopsy (10 months) I went to a rock concert My MRI showed tumor was stable My symptoms was stable (well, eyes same double vision, left arm still same tingling numb pain) I did many trips (work trips or visiting friends) and more traveling plan this year 😊 Overall, I’m happy and grateful ❤️