I took the pic above when I was finally feeling better evening of Day +7 !
Day +5 was the best day yet so I was not expecting to have my worst day on Day +6 and then even worse on Day +7! But that’s the rollercoaster that is HSCT. I was expecting the possibility of needing more platelets because my level that morning was at 31 and they transfuse below 20.
Day +6 sure enough my 2am blood draw comes back with platelets at 14 . Time for a transfusion. In the morning I saw blood in my urine that was more “dramatic” than we women would anticipate as routine so I alerted the nurse. Dr. Burt happened to walk in for rounds as he was receiving a page from the nure with the info and read called her to the room and he told us both that 95% of the time it is just normal cycle and I told him I was a few days late so that was fine. But it’s a little alarming so ladies who are going through this be forewarned.
I was so exhausted all day. In the morning I had to sit in the chair next to the dresser to look through my clothes and dress and had to be very careful walking to the bathroom, holding furniture, using the toilet rails, etc. I hadn’t felt so weak in my life. The next blood draw results came back in the evening with platelets down to 12 which didn’t surprise me based on my inability to move from my chair. So another transfusion. But then I went to sleep feeling very peaceful and had the best night’s sleep yet.
I woke up early at 4:30am before the PCT came in! Normally they wake me up around 5am. I felt so positive and rested and grateful.
My platelets from the morning blood draw (2am) came back up to 37 but my hemoglobin dropped to 8 and they transfuse below 8.5. so I was expecting and actually hoping for some blood- last time I got it I think it was day +1 I felt immediate relief and I was feeling weak.
Around 9am Dr. Burt and team (all his NPs and PAs) rounded and Michelle, my amazing NP (nurse practitioner), said my hemoglobin was a little low and I asked her, “so does that mean I can have blood???” she said “well, yeah since you asked so nicely, I’m not really used to that reaction!” She said they were going to give me 2 units of blood. I was also orthostatic meaning my blood pressure was dropping quickly upon change of body position (lay/sit/stand) so Dr. Burt said “I don’t want you getting up without anyone next to you.” I wouldn’t have felt safe doing that anyway. So, I watched the clock to schedule my hourly bathroom escorts, allowing for a 15 minute wait because they’re busy on the unit. Hourly may sound like a lot but at this point with all the fluids and stuff (transfusions require pre-meds in the IV in addition to the routine stuff we get) it was necessary and my body was really starting to get a lot of fluids off which was great but not fun when you can’t go to the bathroom by yourself because you feel like you could fall over and almost pass out. The bed is only a few feet to the bathroom which is great but you still need help while you’re orthostatic especially when you’re connected to “the pole.” 15 years of running assisted living facilities and occasionally helping other people to the bathroom so this was a first for me to be on the other end with bathroom escorts but at least I was comfortable with it.
The 2nd bag of blood finished around 2:50pm (my texts to my nurse friend Marilyn really helped create a timeline!) but I didn’t really feel the immediate relief that I did the first time but I was feeling improvement. But 3:51pm I sent my friend Marilyn a text “I just went potty like a big girl.” Phew back to being able to function.
Dad came to visit around 4pm and brought my shopping list (cheezits, jelly bellies and lemonade) which are all 3 things I rarely buy in real life….but when you go through this process it’s also not like real life and your stomach isn’t the same and the everything affects you differently. I didn’t have much of an appetite so I was only eating breakfast type food twice a day and one of my protein drinks (premier protein is great….30 grams protein, only one sugar) and sucking on cheezeits tasted good to me and kept my stomach from getting yucky. Sucking on a jelly belly jelly bean really helped with the metal mouth taste from the IV and lemonade also really helped to get another taste in my mouth because water just starts tasting like metal. Normally I only drink water so it was weird to want anything else.
Michelle, NP came and rounded before leaving (Dr. Burt’s assigned transplant nurse or one of the others always round before going home for the day and check in with us). She spent a lot of time talking with dad and me and we really enjoy her- she’s incredibly sharp and professional and just plain cool. She’s a rockstar- even Dr. Burt, the rockstar doctor, said so. I told her I want to be home on my patio this weekend and she said that’s pretty likely actually as I may even be discharged before then as she thinks it’s only a few more days depending on the numbers of course. By the evening I felt really good which is when I took that picture.
Of course the rollercoaster started up again that night after I got in bed with a little bit with bone pain which comes from the neupogen injections that started on day +4….so it was the night of the 3rd neupogen injection and when I was at home after mobilization with my friend Robert (Michael’s husband) who was kind enough to stay with me that week, I started having bone pain on the night of the 3rd neupogen injection and I took a tylenol because I wasn’t wanting to start on norco but the next day I had major bone pain like labor pain so I wished I had taken a norco the previous evening to have a build up of norco in my system….so I wasn’t going to make that mistake again. As soon as I started feeling the bone pain I took a norco before going to bed. I hate norco though it makes me really high and I do NOT like that feeling. Bone pain is also a weird feeling, to me it felt like my new stem cells were trying to unpack and move in….which is basically what engraftment is….so I’d feel a little discomfort in my hip, then it would jump to my forearm, different bones, etc. Really strange feeling.
In the morning I woke up not feeling too much bone pain more of an ache so I took a tylenol instead of the norco and I was fine. Phew.
My labs came back great! I told Michelle I have this fantasy that I leave tomorrow when my stem-cell-sis Daniela is admitted and I pass the torch to her….she said that is a very real possibility and we will see how the day goes.
Michelle came by later and brought me my discharge paperwork and I asked her my discharge questions:
- Swimming- the handbook talks about not using community pool for 3 months but my condo pool is private to the association, so how long? She said maybe a month depending on my labs which will be done weekly so we will see.
- Mani/pedis- at least a month depending on labs and even then bring my own kit to the nail salon for awhile
- Massages- no wait. I told her that I had asked Massage Envy about it and they said I would need a doctor’s note and she said that they are hygienic there is no reason for that. I probably won’t feel up to going for one anyway for another week but I’m hoping they don’t see my bald head and stop me from getting one.
I texted dad “get the housekeeper scheduled I’m coming home tomorrow!”
What’s important to say here is that for anyone going through this- don’t compare yourself to me or anyone else. I live less than 4 miles from Northwestern in Chicago and will be coming back weekly for blood draws so I’m sure they are way more comfortable with me leaving at day +9 than others who have to travel home.
An organization, Phil’s Friends, came by to visit and brought a bag of goodies. It’s an organization founded in 2006 by two-time cancer survivor Phil Zielke and they reach out to people with cancer with packages and cards and have events. If you know anyone who can benefit from their services you can even anonymously notify them and they will bring a “GIFT OF HOPE.” www.philsfriends.org.
I told them I don’t have cancer and felt kind of bad taking anything from them but they were so sweet. They offered me a bible and I told them I’m Jewish and they said “well we don’t have any Jewish bibles I’m sorry” and I said that’s okay 🙂 but they offered to still pray for me so I said of course I’ll take any prayers….so they were sweet to do a non-denominational prayer for me which I appreciated. Inside the bag are a water bottle, tissues, chap-stick, pen, notebook, card, Cuddl Duds socks, a knitted hat, Greg Ferguson CD, toothbrush, toothpaste, lotion, biotene mouth wash, crossword puzzle boo and a light ikea blanket. Perfect actually for homeless so I’m going to put it in the car and give it to someone who can benefit next time I drive!
Day +9- DISCHARGE!!!
In the morning Dr. Burt and Michelle came early before 8:30am so I hadn’t had a chance to put on make-up for my Dr. Burt pic! Or shoes as Daniela pointed out but I hate shoes! Dr. Burt looked at my labs and said “yeah she can go!” So I told dad I’m good to go! I had already packed for the most part so I finished that up and had breakfast and waited for Daniela to be admitted.
I definitely had “chemo brain” I couldn’t focus I was talking a mile a minute and making myself tired. I’ve already warned my friends and family that I need time before phone calls. I could also feel that I was still slightly orthostatic.
Daniela was admitted around 8:40am….next door! But she got the “room without a view” with a tiny window. That room is the last one they use because of that reason…so they move people right away when a new room comes open but they had a lot of admissions. I went running around in the hallway trying to get someone to give her my room and they said of course it doesn’t happen that fast, I have to be discharged, they have to disinfect my room, etc but they would move her when she could to my room or one on the other side that was coming open. I was running back and forth from my room to hers and brought her the unopened box of cheez-its, lemonades, and new york seltzer dad brought me since I was going home! New York seltzer tastes a lot like Clearly Canadian both of which were great drinks we both liked that were taken off market years ago so she was really happy to have it! Figures we would both like those. 🙂
So when I went back to her room to visit Tiffani was there visiting! There is a facebook page for those of us going through this and it’s been a great support. I had met Tiffani with some others for lunch a few weeks ago but it was before her pre-chemo hair cut…love the purple! The pic below is of Daniela, Tiffani and me. Wow I was tired that day but at the time I was so elated I was going home. I also had so much fun talking and laughing with them. As we shared our stories I kept thinking to myself…”I can’t believe people have to live like this….” and now thanks to HSCT- they don’t have to.
We are getting our lives back. Amazing. Then, I got kicked out by the nurse because patients aren’t allowed in each other’s rooms. I technically was still a patient until my PICC line was removed and that discharge button on the computer got pushed. Oh well. I get it, liability, etc.
So after getting kicked out I went back to my room and was working on my blog when someone from Gilda’s Club came by with a calendar of events in the hospital. I told her I don’t have cancer (even though we’re on oncology floor) and she said “that’s okay we don’t discriminate!” The calendar has all kinds of things on it like crafts, yoga, etc.
I was lucky to be included in the “Look Good Feel Better” program which is also designed for cancer patients so I was surprised HSCT patients were included- I went to a free make-up class which I posted about earlier and also received a free wig. I was appreciative but felt a little weird with everyone else having cancer and receiving a lot of chemo and hospitalizations while we as HSCT patients really don’t have to suffer as much with that process. Yes, we are all fighting for our lives but to me it’s just different. They actually discontinued the “Look Good Feel Better” program last week for us and really I’m okay with that. We probably shouldn’t have been included to begin with but it was nice of them to do it.
The website for the “Look Good Feel Better” program for those with cancer is http://lookgoodfeelbetter.org/?gclid=COK_hciArs0CFQcMaQodETQBlA
My “Leslie wig” above which I haven’t worn yet I have to play with it a little. I’m fine being bald or wearing a chemo cap or hat. When I start interviewing for work I’ll wear it then or even get a new one.
So dad came around 1:30pm so while he was putting my suitcases in the car, the nurses removed the picc line. (Daniela and Tiffani the bed was up and tilted back with my head back and feet up again!!!!! )
Last pic of my board…Day +9….Thank you everyone at Northwestern! The staff are very good there not just the nurses and PCTs but environmental services and dining services. For those of you going through this please remember to point out the shining stars to their supervisors. I had the opportunity to do that for the environmental services woman who my mom and sister and I enjoyed. For her to hear me saying great things about her, all true, to her supervisor meant a lot. From my experience in running facilites I really enjoyed when someone would take the time to compliment one of our employees….it’s tough work no matter what department you’re in and these staff are amazing. I would ask them “how long have you been here?” Northwestern is doing something right- most people were there for several years, the longest I met was there 18 years!
So dad came and collected me and now that I was discharged I could go to Daniela’s room and introduce her to my dad. We’re going to have a joint stem-cell birthday party with our families next year and my family and friends have heard me talk about her a lot. More on her in a minute. 🙂
Dad and I walked toward the garage for him to drop off the rest of my stuff in the car on the way to Walgreens to pick up my meds. Walking from Prentice to the garage was really a lot on me. I hadn’t walked for a long duration like that in some time. We walk laps in the hallway but I didn’t build myself up to doing enough of them and I regret that now. It’s just very hot and uncomfortable when you have to wear a gown, gloves, and facemask. Plus I spent so much time getting transfusions and IV stuff I was just plain tired. Anyway I stopped to rest but it was extremely fatiguing. It was very hot and humid yesterday in the low 90s and after being indoors over 2 weeks it really affected me too. I almost passed out in the garage which was incredibly scary…but I remembered something that Michelle, the NP told me in passing about an O/T maneuver for orthostatic and I’m posting it here because it’s so important that everyone know what to do if feeling light headed because it really saved me. Basically you clasp your hands and pull them apart like the pic below. It’s a simple thing but so effective.
So dad took me home and I was pretty exhausted. I had posted on my facebook page to please not call or send texts for a little while to give me a chance to recover. My dad played gatekeeper during this process and I highly suggest everyone else do the same and appoint a point person who can share information….the level of fatigue is like nothing you’ve experienced at different points and it takes a lot on the body. The phone is not something you want to deal with when you don’t feel well. And talking on the phone is physically exhausting.
I came home to this beautiful orange lily on my patio! Which is perfect because orange is the MS awareness color!
After it cooled off dad and I sat outside for awhile last night. It was beautiful outside and felt so good to sit outside with my flowers under the sky and fresh air. I originally was insistent that I would be okay at home alone but after all that walking I was a mess so I caved and let dad stay. I really had no business being alone that first night. I went to sleep in my own bed around 10:30pm. By the way….if you are a family member reading this of someone going through HSCT and you can afford to….the best gift is to get someone a sleep number bed or another bed that has the reclining head/feet. Best gift ever from dad.
I woke up at 5:30am and looked to the right to see if I was connected to the pole….and then realized I was home in bed. No IV pole, no morning vitals check, I was home! But I was so used to waking up early I just laid in bed a little while and then got up at like 730 am and saw the note from dad he went out for coffee. I went outside and sat on the patio. It was really overcast but still so nice. Dad came home and joined me on the patio and we sat outside for awhile and talked. He set up my umbrella which I’ll take a pic of later so I’m looking forward to having some extra shade when I’m out side. They actually make “1/2 umbrellas and bases” so that they are flush against the building and take up less space. Brilliant invention.
I also had dad shave those annoying little hairs on my head finally! Dad said my Wahl’s clippers don’t come as close to the head as his so he he will bring his next time. Here’s dad playing barber:
Also, I noticed my eyebrows are thinning. It’s like they threaded themselves so the stray hairs are gone but I’m thinking I’ll be losing my eyebrows soon. Which I am totally fine with I learned how to draw them on….so we will see.
So dad went home and mom came to visit.
I set up my medications in my med cassette and set medication reminders in my phone for morning and afternoon. I still need to update the MAR I made for myself. There is a medication I will be starting later that’s only Mon,Wed, and Fri so I want to make it clear for myself as I’m still a little out of it.
These are the medications as taken from the HOPE Patient handbook:
Mom brought me some goodies and I added one of her gifts to the inspirational tray I have on my coffee table:
Birds book from mom, Jewish Tales of Holy Women from dad, the hands on the tray are of me and my son the summer before his 5th birthday, the Be Brave candle from my friend and former boss Colleen (one of her “Colleenisms”…she has all these sayings she used to tell me!), purple butterfly from Auntie Marcia that she included in her package with the cut-proof glove to prevent me from cutting off part of any more fingers….(thumb is all grown back now..), Good Health angel from my stemmie-sister Daniela who brought her to me at mobilization, and today I added the harmony stone from my mom wishing my new stem-cells harmony, and a candle-holder that was given to me from my best girlfriend that belonged to her grandmother and she wanted me to have it because my last name is on the bottom of it! Her family is incredibly strong and I think of them everyday and they have been very supportive to me while in the midst of their own difficult time. I’m not naming her intentionally to provide her and her mom with privacy- if you’re reading this I love you guys and thank you for everything!!!
Michelle, the NP, called to check in and reminded me to go on Monday for labs. I told her I will be there AND I’m excited to see my stem-cell sis Daniela for her stem-cell birthday transplant! She said “no hugging, and if you’re sick we don’t want your germs, etc…” I told her I’m not sick and I won’t hug her no problem I have lots of time to hug her.
Mom and I had lunch and I was actually hungry and ate the whole thing! We watched the new episodes of Devious Maids on the couch and then she was on her way.
I actually took at nap from like 3:30pm-5:30pm! I never nap! I guess that may be my new normal now we will see.
So today I had one meal and two protein drinks as I wasn’t hungry for dinner.
Right now I’m feeling stronger than yesterday but still tired which will be the norm for a 6 months to a year. My skin is also sore to the touch so I don’t know if that’s a chemo thing?
I’ll be going weekly for blood draws to Northwestern, then I’ll see them in 6 months for a follow-up appointment and then once a year for the next 5 years. My MRIs will be done and we hope for no new lesions to show that the MS is in remission.
I’ll also call my neurologist to have a follow-up appointment.
About my Stem-Cell sister Daniela
We met on the facebook Dr. Burt page in November and realized we had our evaluations for the same day close to the same time so I told her my friend Denise and I would look for her.
We immediately clicked….she told me she is originally from Macedonia and was surprised I knew about her country. My cousin Monica worked there for awhile helping their government with their legal system after graduating law school.
From that point on we have been pretty much inseparable texting everyday and supporting each other through this process….acceptance, insurance issues, doctor issues, symptoms issues, life issues. Nobody really understands what this is like and it’s very hard to describe. I had dinner with her and her husband who is also a doll, and we also all got together with a larger group a couple months ago. Daniela came to see me during mobilization when she was at testing or another appt at northwestern, and her husband came to see me after I was admitted for transplant while Daniela was having her stem cells collected. We decided to have a joint stem-cell birthday party with our families next year to celebrate. We have become sisters. Daniela said she always wanted a sister and she always wanted a summer birthday….well HSCT has given her both! And here she was just looking to cure her MS. 🙂 So yesterday, Daniela was admitted to the room next door to mine for transplant and I passed the torch to her as I left. And today….she was moved to MY room! Dr. Burt didn’t like that she was in the “room without a view” and waited while the nurses moved her to my room. How cool is that. So Monday before/after labs I will go to my old room and watch my new sister get her new stem-cells. 🙂
I think that brings everything current. I’ll probably make weekly updates or less often from here on out as I recover.
Thank you everyone for the support and love it’s really appreciated by me and my family:)