“ Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8
I’ve decided to write a series of blogs correlating to the number weeks in the hospital. Transparency as been vital through this journey, but God instructed me to go deeper.HERE IS YOUR DISCLAIMER, these blog posts are going to be honest, long in detail, and descriptive because this is going to help someone. Read at your own risk, lol Right now someone or someone you know may be battling cancer, grief, depression, financial situations, issues at work, home, etc., or maybe someone who will be getting a stem cell transplant in the future. My prayer is that you find how important God is throughout my journey. All you have to have is faith the size of a mustard seed.
The night before I was going in, I wanted my family to come together for a small dinner, fellowship, and eat before things changed. For my plans are not mine, my best friend/sis Ayana aka Yanie actually put together the ultimate support system package. Filled with videos from close friends, Janele’s love box, Black girl magic coloring book, pictures, notes, colorful post-its, quotes, books, a package from my Baruch women’s team that included 31 days of positive notes, items they thought I could use, and then everyone wrote whatever they wanted to tell me on a colorful notecard so, I could hang around my room. I was overwhelmed with emotions and I cried because it really meant a lot the lengths she went through to create that package. I love you very much, you made me feel loved, and thank you for always there being there and being the fourth Henderson sister, Yanie.
What’s one more battle? I mean I already completed 6 months of a strong chemotherapy, ABVD and then, three more treatments of ICE.And from what google and my orientation paperwork said it was only 7 days of high-dose chemo. I could do 7 days of nausea and fatigue, I mean I packed my laptop to watch movies, catch up on my shows and listen to music on Spotify. Being in isolation for 4 weeks, I have to find ways to pass the time…
Out of all those things I listed, one thing made me uneasy weeks. Being admitted in the same hospital as my mother,where she spent a lot of time before ultimately passing. My mother spent so much time over the last few months of life in there, that I had what ifs thoughts especially because of the stem cell transplant. So, talked with Jaylen and made him my health proxy. I told him not to tell anyone, (for my siblings/dad haha) if you know our family dynamics he is my partner. I didn’t want him to tell anyone because he knew my wishes and I didn’t want anyone to cloud his judgement.My health proxy document was signed, prepared, and ready for collection at admission. I AM GOING TO COME BACK TO THIS IN A LATER BLOG!
Admission Day: November 14th, 2016
My dad drove me to the hospital, he parked the car while I went into admission. And it took about 4o mins to register, I could’ve feel asleep at the lady’s desk. Guess, who she decided to use as a training opportunity. *Raises hand*
*DADDY I am going to give you some blog love, but it will be in a much bigger form, hahha stay tuned* Knee-Slapper
There were two room options available on the admission. A private room or a room in a bone marrow transplant unit.
The private rooms are much bigger, with double doors in between you wash your hands in the sink and put on protective gear, you can’t see who is entering your room, you have your own bathroom/shower, a lot of space, the view is horrible you are staring at the side of the wall, your “team” of nurses, PCAs are always changing because you have two nurses, one for Oncology and a RN, and your food is served whenever, they bring it to you. The bone marrow transplant unit only holds four patient. The rooms are smaller, you share a shower with the other three patients,your toilet is under your sink with a curtain for privacy, a curtain is your door, you see feet or a shadow before someone comes in, you can walk a little corridor, the TV is much bigger, the view is much better you are looking at apartments, parking lots and garages, trees, and you order your meals from a special menu you eat when you want.
I prayed on where God wanted me to be. Transport bought me to a private room on the 7th floor, about 20 mins later I met Dr. Ruthee-lu Bayer, the head team member of the Bone Marrow/Stem Cell Transplant Unit who works with my doctor. A three women team who runs the BMSCT Unit. She walks in the room with a smile, greets me by my first name like we knew each other for years haha and hands me a calendar explaining my plan. I was put at ease because I was in good hands.
She described the calendar, explained the purpose of the “high-dose” chemotherapy which is to kill all the cells in the bone marrow (red blood cells, white blood cells, and platelets, and cancer cells), and then my body will flushed the night before stem cell transplant, I’ll have my stem cell birthday where my healthy stem cells that collected are released through a drip back into me, and then, I wait about 10 to 14 days for my stem cells to make it to my bone marrow to create white blood cells, and wait for my WBC number to raise. Because the BCNU drug brings the WBC down to 0.1 which is zero. My hemoglobin (red cells) and platelets levels will get support from transfusions. She explained the importance of the Kepivance injections I received three days before. And that, I would one dose the day of stem cell transplant and one dose on+1 and +2 days.
Hodgkin’s Lymphoma is a cancer that starts in white blood cells called lymphocytes. Lymphoma cells grow and form masses, usually in the lymph nodes, located throughout our bodies in the lymphatic system. It affects the immune system and normal white cells become cancerous and can’t fight infection. Lymphoma is a blood cancer, which affects the blood, bone marrow, and lymphatic system.
Now, to the breakdown of calendar:
- Negative days lead down to the stem cell transplant, the demolition of the all the cells in the bone marrow.
- Zero is my stem cell birthday. Time for new beginnings.Body is flushed for a 24 hours after the transplant.
- Positive days build up to the days my stem cells reach my bone marrow, but cells start growing and waiting for a white blood cell count.
- Etoposide- a continuous drip for 34 hours on Day -9 and -8.
- Cytoxan- given 2-3 hours a day for 4 days between Day -7 and -4
- BCNU- one hour on Day -3
- Rests- literally means rest and 11:00 pm on Day -1, the night before my stem cell transplant my body is flushed.
- It takes 10 to 14 days for your stem cells to reach your bone marrow.
- Kepivance- an injection to protect the lining of mouth and gastrointestinal tract from affects of chemo
After that nice chat, it was time to get prepared for the start of treatment. So, I needed a triple-lumen catheter inserted. The mediport I was using is not sufficient enough to support everything that would go into my body.It’s usually inserted on the right side, but due to my port, I had to get mine inserted on the left. Transport picked me and took me down to Interventional Radiology on the first floor. Waited in the hallway for about 30 mins, headed into the surgery room. When, getting a triple-lumen catheter, you only receive local anesthesia. The procedure itself only takes about 15 minutes, with prep time about 45 minutes. The surgeon talked to me, cracked jokes, suggested shows, and movies to watch while distracting me as he shoved a tube 5 inches long and spaghetti size width into my jugular. I felt the pressure from the tube, it hurt but not as much as the other catheter I had when my stem cells were collected.
Transport came, bought me back to my room, and I see a dinner tray. DINNER, huh?? At 4 P.M. like whatt? Who eats dinner that early, not me. Anyway, I pulled off the cover and saw two nasty lightly cooked lamb chops, slop, and liquid peas. I wouldn’t feed that food to my german shepherd Tuck. I put the cover back on, (only positive thoughts), but they tried to kill me before I started, hahhaha it was tuurrribleeee(I know how to spell). I laid back in the bed, skimmed the room and realized there was no recliner. Before I could ask my nurse about it, she told me I was being transferred into the BMSCT unit at 9 p.m. I felt indifferent, because I was hungry, so my PCA suggested that I call down for a sandwich before treatment started.
Around 4:30 p.m. I officially started high dose chemo. It was going well, my dad came back just to check on me, and then headed home. Not even 30 mins went by, he called to tell me that my Aunt Pam passed. I was very sad, but felt at peace because I knew she wasn’t suffering anymore. Staying focused and positive the whole time was necessary this time around.The Kepivance injections provided an extra inch and half of fatty lining in mouth and esophagus to help prevent or decrease mouth inflammation and stomach ulcers from the high dose chemo, it necessary for patients receiving bone marrow/stem cell transplants. Because the chemo is so strong it burns and destroys everything, that why that lining is important. I remember as the first bag of Etoposide was starting, that I had only 9.5 bags left. One bag runs for 3 hours, continuously for 34 hours. By 9 p.m. I was already on my second bag and on my way to the BMSCT unit.
First night, Laura, my nurse gave me a cram session in one night of what to expect through this transplant. This BMSCT unit is ran well, the team of nurses have been working together for at least 15 years. Because, I am a hands on learner and an advocate for myself I will ask a lot of questions. I need to know what’s going in my body and why? And my nurses were happy because they knew I was going to advocate for myself when the doctors made their rounds. All of the nurses have been so helpful, caring, thoughtful, genuine, and go beyond their job to make sure in your lowest vulnerable state you keep some dignity.
What does isolation in a bone marrow unit exactly mean?
Below is my room for the past 25 days. The only two reasons I leave this room is to take a shower and exercise. But, before I do I wear protective gear. A mask, yellow gown, and latex gloves, the picture is below. My toilet is under the sink, there is a curtain for privacy. Because of the chemo, I have a mouth care with a four step process to protect my mouth from bacteria and sores. A process that takes 25 minutes. First, a sodium solution to rinse, then, use a green sponge to brush my gums and teeth I can not use a toothbrush because my gums can bleed, next, suck on an anti-fungal lozenger until it dissolves, and finally swish and spit an artifical saliva solution, because the chemo will mess up your throat. After that’s all done I can’t drink or eat for 15 mins. I have to do this when I wake up, after each meal, and right before I go to bed. And my infusion pump is attached to the triple-lumen in neck 24/7, we only separate for the shower/exercise. My room has to wiped down once a day. I can’t have live plants or anything that can grow mold, bacteria, or fungus. I can only eat home cooked meals, that means from the hospital or meals my family make. Because I have to limit any chances of bacteria.
Day -9 and Day-8 The first two days were manageable, I was receiving sodium chloride fluids bags at 257 mL consistently with my chemo and my output wasn’t equaling how much I taking in. Each morning, you are weighed to monitor your progress. In 13 hours, I gained 5 lbs, all chemo fluid, not good. And my output wasn’t matching what they were pumping me, so I was given a lasix(water pill) intravenously. I NEVER WANT TO SEE LASIX EVER IN MY LIFE!!! You literally are back and forth to that bathroom for 2 hours non-stop each bag, I probably got over 10 bags. Second day, I made sure to shower and walk a little. Every time you shower, the nurse has to disconnect you from the infusion pump and cover the triple-lumen with a protective sheet and tape. You have to use an antiseptic soap for your body and body wash for your face. It felt so good to shower. Later, that evening Crystal came by after work, I asked her to decorate my room, and she did, while throwing shade, complaining, and chatting. She did an excellent job, posted all the encouraging notes, quotes, and pictures from my support system package. All the notes force me to stay positive, the bright colors keep you in better spirits. So, thanks again Yanie, and thank you to my right-hand man Crystal for coming through and decorating, you did it to make me happy, even while complaining, I really appreciate it, you made my room a hot commodity, I get compliments every day for the arrangement. Your post-it dated 11/15 reads “Janele, Get your butt up you’re not gonna stay in the bed!!” And sister, as funny as that sounds I read everyday and it pushed me not stay in the bed even when I wanted to. And your note “Keep Jesus on Your Heart, Mind, and Tongue. Just know that this test is only your testimony.” I read and recite at night because it reminds me to speak positive thoughts into existence.
From Day -7 to -4, Cytoxan is so strong that it must be taken in conjunction with Mesna, which protects your bladder. The worst DRUG I ever had in my whole life because of the effects on my kidneys and bladder. For four days, I barely slept running back and forth to bathroom for four straight days. In 4 days, I got a total of 18 hours of sleep . My kidneys and back were sore, I slept with heating packs that the hospital gave me. My body was getting weak and the simple things in life started to become difficult. First day of Cytoxan, I was tricking myself into taking a shower the entire day, I was too tired and to weak to walk to the shower. My friend/sister/colleague Kelly Barrett who I work with, head women’s coach at Baruch, came to visit me that day, we sat, chat, gossip, laugh and she watched me try to convince my nurse Michelle that was going to shower, and I never did. Thank you Kelly, for your weekly visits they provide normalcy especially discussing our players, hahaha but most importantly, you have a genuine spirit, loyal, kind-hearted, and caring, you know I love and told you, you’re apart of the family especially when conspiring with Yanie. LOL Oh yeah, Ozzie and Jaylen ya’ll stopped by too, now I remember because that was the day of the one..(insider), never mind, lol.
Day-6 I decided to finally shower and I did so before getting my Cytoxan for the day. Moral of the story, never shower because you receive Cytoxan, I was sick, nauseous, exhausted, and in the bed. That set me back a few days literally, I slept from 2pm-6pm and was up for the rest of the night. Day -5 was a little rough but, thank you to Pastor Beverly Sherrod for coming to visit me. Pastor Bev, you have been a gem for my family every since we lost our mother last year, you’ve helped us navigate and I am extremely grateful to you. Thank you for your encouraging notecard and praying for me, I really appreciate it.
Day-4 Was the last day of Cytoxan. A bittersweet day, because I was happy it was that last day of this drug, my kidneys would finally find relief. And sad because it was my Aunt Pam’s funeral. Even though, I was here I was there in spirit. Thank you to my Moore cousins from N.C. who came up for the funeral and stopped by to see me. Missy, Michele & Frank, Angelo, Ann, Lewis(Arthur), & Lauren (D&W) thanks for coming to visit and leaving some encouragement for me. Missy, my twin, I saw your eyes at the entrance, and automatically perked up. That Cytoxan did some wonders, made me like a zombie, I would doze off talking to people any time after 7:30p.m. But, staying positive last day, bye Cytoxan. Thank you Jesus.
Last day of chemo, the hard part is finally over?? My nurse, Zeny told me my hemoglobin (red blood cell) was low, normal level for women, 11.0 – 15.0 grams per deciliter and I was at a 6, I needed a blood transfusion. It takes 3 hours. And, I was getting the last drug BCNU, which destroys all my cells in my bone marrow (red blood cells, white blood cells, and platelets), the demolition drug(hahaha) only runs for an hour. It will bring my WBC down to 0.1 which is zero. That was the plan for the day, but I wanted a shower before my cousin Mattmo & his wife Tonya came to visit. When getting a blood transfusion, the nurse calls for the blood, tylenol tablets and benadryl in the IV are given right before. Matthew & Tonya came just time where we could get a good healthy conversation in, until my nurse gave me the Benadryl. I though I would be good, my nurse asked me if I was getting drowsy. I told her no, I wish she never asked me that, because I was trying to fight it, as soon as they left I was knocked for the next 6 hours. But, thank you guys for coming by thanks for the laughs, catching up, and overall well wishes. Blood transfusions allow me to get uninterrupted sleep. I would’ve slept through dinner, if I didn’t feel a presence. Something said opened my eyes and saw this tall man coming towards me in my dark room. I got shook for a moment until I realized it was my father. Lol Shoot he scared me, he didn’t call my name or give me a warning, he lucky I was weak and in a hospital chair, hehe He showed up at the right time because I needed to eat. Thanks to my sisters Clarine and Crystal for both making me food.
For weeks, the thought of staying at the same hospital my mom passed away made me uneasy. I dreaded the effects of 7 days of chemo I thought I was going to just feel nauseous, maybe vomit, and fatigued. I assumed that for the 7 days of chemo I was going to be watching my shows and movies to pass the time. I used my laptop only one day to write the blog after my Aunt Pam passed. The hours I spent googling and researching a stem cell transplant did not prepare for this. Those 6 months of chemo and 3 ICE treatments I did I could do again on my head. I hated how the drugs made me feel, I felt like a zombie that had to turn it off and on when people visited me. I got absolutely no sleep, my skin is destroyed, different colors dark mostly, looks like I was burnt while tanning, all body hair is gone, good thing I don’t care about hair because it’ll grow back. As hard as it was, guess what I made it!! After 5:30 a.m every morning, right after my blood was drawn, I would pray, read my devotional, ask God to keep me positive, keep me from complications from the chemo. And I made it through the first week free from complications, my doctor said I was doing great regardless how bad I felt. Calling on the name of Jesus, when things get rough will sustain you. Doesn’t help if you think negative thoughts because it can slow you down and keep you from getting through each day. God told me He wanted me to as honest in my blogs this time around. No sugarcoating, write in detail, if it’s long so be it. He wants me to provide help to someone who may be going through something. There is no literature/blogs that prepare you enoug for what you go through once you start that high-dose chemo. One week down, time for Week 2! Jesus, got me through Week 1, I’m sure I will make it.