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The Mobilization to the Transplant - 7/24/23 to 9/15/23

 7/24/2023

We are going to leave for San Diego soon and my anxiety is starting to surface. Today I feel impatient. I just want to get this going. I woke up last night around 2 AM with my arm, from elbow to wrist feeling like I had a rubber band wrapped around it. I don’t know why this happens, but it seems like it happens most when I am really tired, or I don’t eat well earlier that day. It might be an incentive to be better at rest and food intake, but I hate it. I wake up and I am unable to get back to sleep leaving me more exhausted until regardless of the symptoms I finally fall asleep.

Honestly, I am hoping a lot of these things will improve or disappear completely with HSCT but I am not naive enough to rely on it. I will just be happy if the MS goes into remission. I would love to wake up without worrying that a new symptom will mean an MS relapse. I am exhausted of MS and I haven’t had it as long as so many others have.

7/26/2023 - Hilton, Gun shots???

Tomorrow is the consultation, and we have the entire day free to explore San Diego. We decided to go to the San Diego Zoo. I was so big! I loved it but it was too expensive. If I could I would walk through every exhibit twice. The Hotel we are staying in, it’s a Hilton not too far away from the San Diego Zoo. Its nice but its late and I am pretty sure I heard gun shots. I am glad that we are so far up. It sounded like it came from the street.

7/27/2023

Today I go in for the consultation. I was so so incredibly nervous. It hit me right as we were driving to the appointment. On our way in my foot stuck to the floor and I couldn’t will it up. Finally, it worked again. Kurt kept reassuring me that everything would be okay. We saw Dr. Burt for a brief moment before the appointment. I thought, “holy crap, this is real. He is real, all this is happening.” That of course brought on the vertigo, and I had to sit because if I didn’t, I was going to fall over backwards. Someone called us back, took my height, weight, and blood pressure. Before I knew it, she left and Dr. Burt came in. I was staring at someone I had spent so much time listening to. All of his work, all of the stories I heard in regards to this treatment, his treatment, all of the lives he helped heal. He was an idol of mine. I respected him greatly. I wanted to hang on every word he said but I knew that wasn’t why we were here. He went over the risks and he answered all my questions. Kristen mentioned that I follow him. He mentioned he just returned from Portugal about Stem Cells and aging. I knew exactly what video he was referring to. I had started it 2 days ago but with all traveling, I hadn’t finished it and I knew I would have to watch it a few times to ensure I understood all the details. I told him I started it but hadn’t finished it yet and he recommended I do. I promised him that I would. After the appointment had ended we returned to the hotel. I thought about watching the video, but I was mentally exhausted from all the excitement in meeting him. I took two showers instead.

7/28/2023

Today was intense but not as bad as I thought it would be. I forgive myself because I know this is a risky procedure and I know that it’s okay to be scared. I wasn’t completely open about all the risks to my friends and family due to my own concern of their worry and personal opinions in regard to what I am about to undergo. After waking up I was so nervous that my hands weren’t working well, and I spilled ground coffee grounds on my foot and leaving a foot print on the carpet. Yesterday I forgot to mention that we changed hotel rooms to one a little closer to Scripps Hospital. Kurt wanted to take a shower before we left, and I wanted coffee very badly even though I knew it wasn’t going to do my anxiety any favors. So, I decided to go downstairs to the hotel café. It was just outside the hotel entrance and a little off to one side. I ordered and was caught off guard by Dr. Burt! He recognized me immediately, must be my horrible bowl-ish style haircut. He invited me to sit with him and chat. It was so cool. We talked about his video regarding aging, and I rambled about my MS because I was so nervous. I wasn’t nervous about talking to him, just nervous about having chemo for the first time. When I got my coffees, he mentioned that he didn’t want my extra coffee to get cold, noticing I had two. Immediately I thought of my husband and thanks to my ADHD like attention span, I forgot what I was talking about almost immediately. I said what I hope was a polite goodbye and returned to my room.

On my way up I dreaded how I rambled on. All I wanted was to listen to him talk about his research, but I didn’t do my homework. I had postponed watching his video regarding stem cell transplant, aging, and regeneration. He tried to talk about it but my mind was racing and of course I just rambled about MS and stupid stuff I don’t even remember. A lot of it I am sure he knows or heard before. I will see him again, but I am a little disappointed I didn’t watch that video when I should have.

We left for the hospital, and we went straight to the nursing station who told us we had to go back to reception to get checked in. I had checked in online, so I didn’t know. She gave us the room number, 376, and we went straight in. It felt weird and awkward for a moment because I didn’t know what to do. They had a night gown off to the side. There was a toothbrush, tray, folder, and menu all laid out neatly. We were not alone for long; nurses were right behind along with Kristen who introduced them. Kristina and Natalie were my daytime nurses. They started taking vitals and tried to take blood. Unfortunately, it failed twice, and Natalie had to call someone else into ultrasound-guide the IV in. They came in and got it in pretty quickly, but I had wished she went slower. She said one, two, three and suddenly jabbed me kind of hard. It of course, startled me and I jumped which knocked it back out, so she had to jab me a second time. I jumped again but this time it stayed in place.

They started me on Mesna, 2 anti-nausea medications, and an IV. About 1 hour later, at three, they added Cyclophosimide. At 5:30 Kristina came in because the Cyclophosimide was finished. She said she could sympathize because she had cancer as a child and that is why she became a nurse. When she turned to throw away some of the gauze, I noticed a scar on the back of her head. Me being me, I didn’t think and blurted,” Is that why you have that scar?” I developed this nasty habit of blurting because I forget what I am thinking almost as soon as I think it so I need to act fast and ask while its still in the forefront of my mind. I believe she had communicated that the cancer was in her brain so I didn’t just jump to that conclusion. Anyway, I expressed how much I admired her for working here after her own warrior cancer journey. I also found out that I am the 2nd  MS patient tied with another person, to do HSCT at Scripps. I am currently tied with another person. I was floored because I didn’t know. That wouldn’t have stopped me but wow. Kristina hooked up the Lasix and IV and left and Natalie came in and gave me a stool softener because she said one of the meds would give me constipation. They came back in at some point to introduce the night nurse, Imelda and her nurse assistant Victoria. They were both so pleasant, knowable, and nice. I really liked Victoria. She was so sweet. I did express concern about how I wasn’t peeing much. She said it was because I was no longer on the Lasix and was returning back to normal function. I spaced telling her that when I did pee it was a weak stream of stop and go, stop and go. I did tell her that it didn’t seem like I was peeing much for as much water as I was drinking. I guess it is fine, but I need to keep an eye on it. If the find I am retaining water in my bladder, they will have to catheterize me. I really don’t want that. I understand it, respect it, and agree but I really don’t want that. Kurt went back to the hotel for the night. Kristin came in a few different times and answered my questions which were about the calendar she gave me, I asked her if I would get sick in the next few days and she doesn’t expect that but advised me to call if I do. I asked because I heard that chemo makes some people very nauseous. Maybe that’s if you have multiple doses. This is all very new to me. I also asked her if they collect the stem cells from a bone, but she said they collect it from the blood. That was pretty much it and she left at 11:30 at night. I don’t know how she does it, but everyone here is amazing. Later I heard someone getting violently ill. I mean they were very very sick. I really hope this treatment helps them. I also thought about how that could be me soon. Most likely during the transplant part. That part alone scared me. I didn’t want to be sick. I didn’t express that right. I understand that chemo is poison. This poison kills people. It is very scary to think every dose of chemo is a metaphoric knock-on deaths door.

 

8/5/2023

Today is day 4 of the Filgrastim shots. They give them to me every day for 5 days and then they collect my stem cells. On the first day I had some aches and pains. They were a sudden sharp ache that slowly dissipated. The second day I mentioned it to the nurse, and she said that it was bone pain. Later that day I noticed it in my thigh, arm, ankle, wrist and in my skull. Yesterday it was mostly in my chest. It felt like someone punched me in my chest bone, but it was a deep dull ache. Today I woke up with pain in my lower back. It is very painful, but I am tolerating it. I will take some Tylenol soon. I started taking Claritin the day before I started the shots. They told me to take Tylenol for the pain. I keep telling myself that I am almost through this.

Kristen called me last night to let me know what to expect for collection day. She told me to start taking my calcium supplement. It would help with the side effects of the medications they will give me. She said they will most likely give me Ativan to relax my veins. I’m not happy about it but it’s what they have to do to collect my stem cells. She also said that if they have trouble going through my veins, then they will have to go through my groin. She said they numb you all up, so you don’t feel any pain. She also said the positive of going through my groin was so I could move around more. I must be relaxed and not move during collection which will take about 4 hours. I am not looking forward to being still for that long. I hope they let my husband in. I am trying so hard to be strong, but I am so scared. Kristen advised me to take my laptop so I could watch a movie or something. I hate to admit that I am not ready for all of this, but I don’t think I ever will be.

8/31/23

Today I met with Dr. Burt and consented to the transplant. Tomorrow at 7:30-8:00 AM, I will be admitted to the hospital. They will insert a PICC line into my arm. They said they will numb the area, so I won’t be in pain. If my vein doesn’t work, they will insert it under my collarbone. It is this long tube that runs into the arm or the collarbone to right above the heart. It is so long.

https://youtu.be/mjZm6bbsqEI?si=ltV2Tfzbtj0wnv5l

After the PICC line is inserted, they will give me ATG, steroids, Cyclophosphamide, and Mesna. I believe the ATG is to prevent my immune system from attacking the bone marrow or to rebuild the bone marrow (I need to double check that), the steroids are to prevent allergic reactions from the ATG, the cyclophosphamide is the chemo used to obliterate my immune system, and the Mesna is to prevent bladder damage from the Cyclophosphamide. I am also supposed to stay well hydrated by drinking at least 2 liters a day along with the IV. This will happen every day until the 5th. September 6th will be my 2nd birthday. They call it that because it’s the birth of my new immune system. So long as my immune system rebuilds and my levels increase, I will be able to leave the hospital around the 15th. We still have to stick around San Diego in case anything goes wrong and for further testing. 

Dr. Burt seemed like he was pretty busy. I asked him a lot of questions and he answered them. I tried to be quick about it so I wouldn’t hold him up. I recorded the questions and his answers but not in too much detail. It’s getting late and I need to sleep but I will add them in the morning. I feel exhausted of this already, but the transplant process begins tomorrow. I don’t feel ready, but I do feel rushed like this all is happening way too fast. I think it’s just my anxiety paired with how anxious I am. 

9/1/2023

I was admitted this morning, and they inserted a PICC line. It went in 35 cm. It wasn’t as bad as I thought, of course but I was shaking because I was so scared. They started me on a medication to protect my bladder from the chemo and an IV. It’s called Mesna. Then they gave me anti-nausea medication and started the Cytoxin. Cytoxin is the chemo also known as Cyclophosphamide. I am told I will be up late tonight because they are starting the ATG late. Today is day -5. At day zero they will give me back my stem cells and I can start rebuilding my new immune system. Each day after that is +1, +2, +3…

I am doing okay. I am just very tired today. I didn’t sleep well last night and woke up pretty early to be admitted. I am just incredibly anxious. I started to nap but decided to just stay awake until I get the ATG. Did I mention I am incredibly scared of an adverse reaction. I keep praying that nothing will happen and that I will be okay.

 

9/3/2023

Today is day -3. Dr. Burt came in this morning and told me everything was going well. He said my liver enzymes were high, so he is lowering my dosage of Mesna. Tomorrow is my last day of Cyclophosphamide. He also said he is not too worried about fever from the ATG because of the steroids they are giving me which is a whole lot. I am very swollen and gained 10 lbs alone from all the fluids and the steroids. I am 160 lbs. They tell me I should lose it pretty quickly but I’m not sure about that. From past experience it takes a lot of hard work to get the weight back off. Thankfully, I haven’t experienced any crazy side effects so far. The hardest thing so far is showering with a PICC line. I am trying so hard to not get it wet. I am also trying to get used to the shower. Its cold and I don’t want to catch a chill.

9/5/2023

Yesterday was a super rough day. I had severe gastritis from the chemo. Chemo is really hard on your stomach. Omg, it really really sucked. I had no idea what was happening. I was sitting in bed when I got suddenly dizzy and felt like I was going to pass out. I pressed the call button to call the nurse, but they didn’t respond. Next thing I know is I hear a lot of chaos and voices in my head and a high pitch ringing. I started to come to and someone was asking me if I was okay. She was the only one in the room and the I must have been dreaming of all these voices and chaos. I told her that I passed out. She asked me if I lost consciousness and I said I think so, I passed out. She called more nurses in who took my vitals, called Dr. Burt, and kept asking me how I was feeling. I was trying to gauge that for myself, and I then told them I felt sick. They handed me a vomit bag. I threw up my breakfast with was Maple Oatmeal. Thank god that was it. I was relieved I hadn’t eaten something acidic. I was so scared, and my poor husband had walked into all the chaos. I was so sad for him.

 

Dr. Burt ordered scans of my stomach. He said I was really backed up. It’s weird because even though I haven’t gone every day, I have been going a decent amount, but I was told it was completely normal due to the chemo. The stomach pain really sucked, and the burps really hurt. I really didn’t like the burps. They told me it is a really common side effect and gave me a bunch of medications. That was super scary. I honestly thought I was going to die. I know the risks of this procedure and I know one of them is death. I remember when I woke up after passing out, I thought that this was it and that I was dying. I was keeping faith that it would be fast. Thankfully, it wasn’t death, and they knew how to resolve it.

 

Anyway, I'm doing much better this morning.

I feel like today will be a much better day. I ma trying to remain optimistic. I finished the chemo, Cytoxan, yesterday and today is my last day with the ATG. Tomorrow is my stem cell birthday. Yay, almost done. Well, maybe.

Overall, I am still in good spirits, but I am very nervous. It’s to be expected with a medical procedure as big as this but I know it will all be okay. There is that optimism.

 

9/6/2023

Today is Day Zero. Today is my Stem Cell Birthday. I am crying from all the emotions and the steroids. From now on, I will have 2 birthdays. One for me and one for my immune system/stem cells.

I am so nervous. They are going to pump me full of Ativan (to keep me calm) and Benadryl (to prevent allergic reaction from the preservative frozen with my stem cells), then give me back my cleaned baby stem cells. If this all works, meaning the chemo paired with the stem cell transplant, it should put the MS into remission. I don’t like the word cure just because there is a possibility that MS can come back but I do pray this is my cure and that I will be free of this beast. I have also heard of people getting the stem cell transplant and MS returning like 5 years later.

 

Right now, I feel amazing. I started my day scared and anxious and now I am unhooked off all the heavy, clunky machines I have been toting around for the last few days. I even managed to walk around a bit and get some exercise around the hospital floor.

Now, I am sitting here enjoying this wonderful view and watching the sunset. It’s quiet and peaceful. This is exactly what I need.

 

9/8/2023

Day +2 and doing well. I don't have much to tell. Yesterday my immune system bottomed out so now I'm waiting for it to recover but everything seems good. I feel pretty normal. Yesterday my right knee was a little weak, but my MS always loves to mess with my right side so, I wasn't surprised. My eyesight is a bit blurry. I am told it is caused by the steroids I have been given. Now that those are coming down, I am told my eyesight will get better. One other thing was I got to 1,000 steps and felt so zapped of energy that I returned to my room. I decided to try something else, a wall sit, and I got to about 45 seconds but I was completely drained. I literally felt like I couldn’t move or even keep my eye lids open. I was pretty much bed bound the rest of the day. Even going to the bathroom which is a few steps away felt like a whole lot of work. To remind you of my baseline before transplant, I could walk 15,000 steps a day. I still would get fatigue but this is some serious weakness.

 

9/9/2023

Today is +3. I have been in the hospital since September 1st. It was rough. I have gone through some pretty exhausting and scary things, but I persevered through them somehow. Yesterday and today, I have spent a lot of time reflecting on everything. The future, my goals, what life means now, how my priorities have shifted, and who matters in my life.

Over the past few months, I felt shunned by a family member, and it really hurt me. I should have expected it because that individual isn’t very involved in my life regardless of how much they pretend that they want to be. I know this person is probably shunning me on purpose for their own satisfaction, but it hurts. I have accepted that I am dealing with a mountain of agony and stress over multiple sclerosis alone. I do not deserve to be treated this way because I wouldn’t do that to someone I love. I recognize that this individual is toxic, and it is in my best interest to stay weary and alert for any deviance to be used against me. I am a good person, a forgiving person but I cannot let that be my Achilles heel. I won’t let that happen. It stifles me though, why do such a hurtful thing? Why shun me and not address your issue? I will let it go because in the end it doesn’t matter but it does speak volumes about their character, maturity, and sanity. I have already spent far too much time trying to analyze and discern the justification of their actions.

As for my future goals, I am still pondering them, but I want to get my degree in Anthropology, maybe start an animal rescue, write a book, buy my own home, have a beautiful garden, and live my life peacefully and happily. What do I have planned next is still in the air. I have been thinking about getting a work from home job so that I can pay off my debts and spend more time with myself. I want to continue to focus on my health and save money. I want to write. I love writing and I think I am creative enough to make something amazing. My ultimate goal is to just be happy. This is my chance of rebirth, and I don’t want to squander it. I want to embrace it. Maybe help others with this nasty disease too.

Update: I can’t express how absolutely amazing I feel this morning. I feel completely clear headed, awake, and high energy. I feel years younger. I cannot express how incredible this is because it is completely unbelievable. For years I have been constantly fatigued and full of cog fog. I wake up every single day and struggle all day to just stay awake. Often times, I have to get hyped up about something to keep my attention and motivation just for a conversation. So much of the time, my thoughts feel cloudy and slow. I really cant express how debilitating it can be. I push through it so so hard but this morning feels different. I feel wide awake. I feel great. I feel normal. The craziest part is I know that this is what normal is supposed to feel like after years of feeling so far from normal.

It makes me so angry that MS did that to me. I have not been myself for such a long long time. I have a whole lot of catching up to do. I have already noticed my typing is so much faster. My coordination feels improved. It really is incredible, and Dr. Burt says there is more to come. How could I be so blessed. I am literally going to spend months crying about how absolutely grateful I am. Listen, I would do anything to feel like this for 5 minutes and can’t even fathom putting a price on this feeling for the rest of my life.

 

9/13/2023

Today was a little rough. Today is day +7. This morning I woke up feeling pretty good. I had a cup of black tea, they brought me my medications, I ate breakfast, and shortly after that my heart felt like it was racing. I let the CNA know. He checked my vitals. He said it could be the caffeine mixed with my medications. Not too long after that, I let my nurse know and she manually checked my pulse. It was 98 which didn’t seem too bad. I was feeling fine, so I let it go. A few hours passed and I ordered lunch. My husband even got me a slice of pizza from the cafeteria. I was a little sore about not being able to order a pizza earlier, but I know it’s for my own safety and well-being. I ate a hamburger, a slice of pizza, and some sherbet ice cream. It was so good. The CAN, Ross,came in and wanted to know if I was ready for a shower and brought me towels. I was feeling ready for a shower, so I jumped to it. My husband left for a minute and came back while I was in the shower. The CNA came back to the room to make the bed and clean up. When I was finished showering, I reached up and turned off the shower. I started to feel dizzy and lightheaded and quickly sat down in the shower chair. I started feeling like I was going to pass out and called the CNA in the bathroom. He asked me if I had a towel and I said yes. He didn’t want to violate my privacy which was so kind of him. He came in and I told him that I thought I was going to pass out. He called my husband in, and I started losing consciousness. I tried to hold on for as long as I could, but I couldn’t hold on any longer.  I passed out while the CNA called for help from the nursing staff. I came to and then started to pass out again. When I came to the second time two nurses were there. I eyed the bed. It was only four, maybe five feet away. I wanted to get to the bed, but they wouldn’t let me. They called in a pretty big muscular guy to pick me up in the chair and carry me right to the side of the bed. I was able to get up from the shower chair and into the bed, but I was so weak. It felt like my entire body and energy stores were completely depleted. It was crazy. The nurse helped me put on a shirt and went to get a doctor. I asked the other nurse if she could help me put on underwear. I struggled to put them on and as I was attempting to, the doctor came in. He may have seen more than he wanted to and politely stepped back out while I finished dressing. He told me passing out during this treatment was completely normal and they see it all the time. That made me feel a little better but everyone, including myself was incredibly grateful I didn’t actually fall in the shower. My platelets and red blood cells were so low that if I hurt myself, I could have ended up hemorrhaging and dying. It was really serious. Due to the danger, the nurses decided that I needed to be put on a bed alarm. That sucks so badly but I understood that it is for my safety and well-being. Still very annoying.

 

I was not scared about passing out when it happened. Dr. Burt warned us this could happen. It wasn’t even as close to scary as when I had gastritis and passed out. I certainly thought I was dying that time. This time, I just tried my best to stay on the chair and get help asap to avoid falling or injury. Later it was pointed out that I had a string alarm in the shower that I could have pulled. It happened so fast that I didn’t even think to use it.

 

9/15/23

Yesterday was rough. I snapped at the CNA because I was frustrated at being put on the bed alarm. They put me on a bed alarm because my platelets were low, and they worried about me passing out again so I wasn’t allowed off my bed without a nurse or CNA with me. That also included going to the bathroom. He insisted that I leave the door open at all times even when having a bowel movement for safety reasons. I have PTSD and anxiety so I tried to explain that I couldn’t go with the door open. I felt like he wasn’t listening and felt extremely overwhelmed. I slammed the door closed and just missed his fingers. After I closed the door, I realized instantly that I lost my temper. I knew I needed to apologize to him which I did. I also had so much anxiety, the feeling “to go” passed. I was anxious mainly because it was IVIG day. IVIG is intravenous immunoglobulin, and I am told it is supposed to be an extra layer of protection for people with compromised immune systems. I am always super nervous about medications and strange things going into my body, so I was a nervous wreck. Plus, earlier that morning I had some sharp chest pains and my heart felt like it was racing. I was told it was just because I had caffeine. I wasn’t sold on that explanation though. I drink caffeine all the time, but they said it was my low platelets coupled with the caffeine and the plethora of medications they have been given me. I had also been having some tenderness around my belly button that no one could explain to me. I was having extreme anxiety, and I wasn’t managing it well. Lastly, steroids were in my system so I could have been experiencing some “roid rage”.

They gave me my premeds which were Benadryl and steroids. I got really sleepy and they hooked up the IVIG. Everything went very smoothly and the IVIG was over in just a few hours. I also got a new bed because the inflation on mine wasn’t working correctly.

Today is day + 9. I feel normal. It is the first time I have felt normal in so long. I feel like I can think. I don’t feel any weird sensations in my body except some bone pain from the Filgastrim shots. I woke up this morning very stiff. My hips, thighs, and lower back hurt so bad. I at first thought it was because I got the new bed and complained about it. Later, my husband suggested it could be from the Filastrim shots and he was right. After I got another shot, my pain increased. It is like a deep pressure that aches. It is very uncomfortable and no matter how much you stretch, it still hurts. I didn’t want to take anything for the pain, but it started to really increase in intensity, so I finally requested some Claritin and Tylenol. The relief came pretty quickly and that confirmed it. Now that we know what it is, everything is better now.

All I want is candy. Sweet, tart, sugary candy. My husband is amazing because he brought be nerd ropes, sugar straws, and sour punch straws. They are divine but probably not good for my newly forming gut microbiome. I am forgiving myself though due to all the chemo. Now that I am writing this, I hate to say it but sugar feeds cancer. Chemo can cause cancer and I am eating a ton of sugar. Yikes. I have also been craving spegettios and vegetarian vegetable soup, probably for the iron. Having low platelets can cause anemia so that makes sense to me.

My CNA Yessica shaved my head today. It was really coming out and it was time for it to go. She is awesome. I have been wanting to have that done for so long. One of the nurses, Heidi, suggested I ask her to do it and she was more than happy to. Yessica, Heidi, Sophia, Abi are just a few of my favorites around here that I can remember right now but there are so many others. All of the staff here are amazing. Why can’t I bring them all home with me? My fingers feel like ice cubes on my scalp. My scalp feels like the rough side of Velcro. My head is cold. It is all very weird.

At the end of August, I decided I wanted to find a way to pay it forward, so I reached out to Cassidy who I met through Facebook. She was one of Dr. Burts patients from Chicago. I asked her about possibly volunteering somewhere and she told me she just started a nonprofit called HSCT hope inc. I have been so excited to start doing anything to help her cause. Her nonprofit (HSCT Hope Inc.) mission is to educate and help people get HSCT. I can’t wait to get out of the hospital and home so I can devote more time to researching various things.

Home. I can’t wait to go home. I miss my dogs so much and the comfortable feeling of being just being home. I have been trying not to let my mind think too much about it but the longer I am away from home, the more home sick I get. I keep listing off all the benefits of being here and the big picture, the long-term goal. I need to stay focused on that, keep being positive, and keep thinking of the future I want to manifest. No excuses. Keep your head in the game.

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