It was about 2:30 am last night and I pushed the “Call nurse” button for Nurse Erika to come in because I started feeling the same nauseous feeling creep up into my chest like I have been the last 3 nights. She immediately grabbed the Compizine, a clear liquid in a syringe and injected it into my IV. Within minutes, the yucky feeling went away.
I told her that tonight was my last night at the hospital and that I was scared to go home. She asked “What things are making you scared to go home?” I said that I liked that the hospital always had people like her around to chat with or help when I wasn’t feeling good. I was scared to go home and wake up in the middle of the night needing help and not knowing what to do or how long it would take to feel better. She reassured me that they would do a very thorough job of explaining my medications so that my quality of life outside of the hospital would be as good as possible.
I was relieved but not fully because I knew that I wouldn’t have the same food options or fancy reclining bed, and I’d have to start sharing the family attention with my dad since he’s just beginning the discovery period of his cancer. I’m just really glad that I have my sister, brother, and Joanna around to help support both my parents in this.
I woke up 3 hours later in a cold sweat this morning dreaming that Derek was looking around my body for reinforcements because he DID NOT want to leave. I turned my body slightly and felt a huge sharp stabbing feeling in my right side towards the back. Both my forearms were burning and achy because of the former and current IVs. The center of my chest was throbbing. I called Erika back in and she asked me what my pain level was, definite 7, and gave me Tramadol which is a painkiller.
The painkiller went into effect and I dragged myself to the pantry to eat cold alphabet soup out of a can which all the nurses think is disgusting but pretending to be a homeless guy while looking like a homeless guy was just what I needed to wake me up this morning.
I got back into bed and at 7am the bloodsucker came for my daily blood labs. She looked at both my arms and said “oh you poor dear, you’ve been quite the pincushion haven’t you? I’ll use my smallest needle then.” Her showing me empathy like that really made it so much better.
Joanna came later in the morning, we had breakfast, and she took me out on a walk before the doctors came in for rounds. My dad was able to make an appointment to talk to his his urologist today to discuss next steps, which was great since I wasn’t planning on being discharged until the early afternoon.
During the walk, I started getting really violent coughs again and unfortunately threw up half my breakfast in the nearby garbage. It was time to go back into the room.
The team of doctors and Cyndi, the nurse practitioner briefly went over my schedule for the next few weeks. We also discussed the option of doing a pik line instead of a port since it’s less invasive and I only have 3 – 5 day sessions of chemo left. They also looked at my left arm and showed concern of how red and swollen it still was.
I noticed that during the doctor meeting, I had a hard time keeping up with the conversation, I was stuttering, and this huge feeling of fatigue waved over me. When they all left, I had to lie back down and ended up sleeping for a solid 2 hours.
Cyndi came back later in the afternoon and explained all the medication and rules that I needed to follow. I’m still trying to figure it out but basically there’s a steroid, 2 anti nausea pills, and the pain killer but I can choose to take Tylenol if the pain isn’t that bad. Even listening through her 10 minute explanation, I needed her to repeat herself multiple times. Again after she left, I slept for another hour.
Joanna and my mom started packing up my room to prepare for discharge. I laid in bed and started crying saying “This isn’t me, I’m sorry I can’t help.” I was SO frustrated that I had no energy to do absolutely anything and felt so useless. Mom cried too and said I just need to focus on keeping my energy and they’ll do the rest.
I managed to take a shower even though I got really lightheaded with all of the typical shower movements (Joanna kept an eye on me) and changed into my street clothes. OMG it was so nice not wearing a hospital gown anymore and wearing pants again.
I was really happy to see Nurse Kristy be assigned to my discharge. She had been gone all weekend and I appreciated her a lot because she was the one that admitted me when I was at my most sick last week. She spent at least 45 min explaining all of my paperwork, lab work, what to do if I have a fever (GO TO THE ER), and how to best manage my medications.
With that, we were off and ready to go home! I can’t believe that I was in the hospital for 6 days. I’ve never had to spend a night at a hospital before, let alone almost a week!
Kristy highly recommended that I buy my own face mask to use when I’m in public because I’m so susceptible to bacteria and infection. I used a temporary one at first and picked up a Vogmask which is like a stylish one made of cloth with a vent on the side to reduce humidity. I totally lost all the platinum silver hair that I started with a week ago, but now that my regular hair has been growing under the bleach blonde, it looks pretty cool especially with the mask.
I want to do a really quick shout out to all of the amazing doctors, nurses, and staff who helped make the beginning of my recovery from cancer a real success. It seriously blows my mind how many people and more it took to take care of me this last week.Their professionalism, knowledge, and care really made a huge difference for me and I really have them all to thank for helping me not die.
Doctors
Nurse Practitioners
Nurses and Staff
We got home to my parent’s house in Bloomington just in time for me to watch Joanna pick up Speedy to take him back to St. Louis Park. Since he’s a dirty pig-dog I can’t take any chances and I didn’t want him to get super excited to see me after being gone for a week. I had to settle for seeing him from the back of the car 🙁
I slowly made my way through the house and up to my sister Kimberly’s room where I’ll be quarantined until I get better. I’ll need it as I’m not allowed to share a bathroom with anyone in the house. I’m just glad I have Tay Tay watching over me on the left.
Today was a hard day in more ways than one. I need to learn to adjust to my minimal energy level and just be ok not contributing. I’m feeling frustrated right now because it’s currently 3:45 am and I’ve been fighting off nausea on and off since 10:30pm. The laundry detergent my parents used at the hotel to wash the clothes I’m wearing is really overpowering my senses. Imagine that feeling you get when you’re riding in a car and are looking down at your phone then look back up and think “Oh I should not have done that.” That’s how I feel right now. I just want to sleep…
I think I’ll just end this post with a bad ass poem that Jason sent me yesterday as a reminder of what I’m capable of accomplishing despite my circumstances.
Invictus
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
Great poem at the end of post! Take care!
I’m sorry you have been feeling so bad. I hope you can be more comfortable at home.
The mask make you look like a super hero!
Hey, I found your blog on Reddit and I love your writing style and the way you’re organizing and documenting everything. It must be weird having photos taken at such intimate moments but it really does paint a more complete picture of what you’re going through. Your story is definitely doing a lot to cast more light on what cancer patients go through and I sincerely wish you the best in the coming weeks (and beyond) for as easy and quick a recovery as is possible. It sounds truly awful and I’m sorry you drew the short end of the shit stick on all this. I understand what you mean about learning to be okay not contributing but it’s good you know that’s important because what you are going through right now is wholly enervating. Truly, the absolutely best of luck to you.
This is an incredibly well-put blog. My heart goes out to you. If you’re religious, know you your loved ones are in my prayers. If not, know I will be checking into this blog again to see how the treatment goes. Also, wonderful poem at the end.
Marc, not only am I believer but I’m an even stronger believer seeing that God has me and my family under his loving arms. Thank you so much for the prayers, they are so much appreciated!
It was strange running into your story while browsing reddit casually. I went back and read your earlier posts and was surprised at how much was similar to mine. I was diagnosed in April with hodgkin’s lymphoma, with a large mass in my mediastinum. I had a recurring cough for a couple of months before I finally saw a doctor. Had it not been for the xray they took that day to rule out pneumonia, I could never have guessed cancer. 2 CT guided needle biopsies and a thoracic surgeon later, I got my answer and began treatment.
Isn’t it crazy how something so simple could explode like that? Stupid bodies!
How are you doing now?
Today I finished the third of what will likely be six cycles of ABVD. I am eternally grateful that my response to chemo has been so mild. My cough disappeared almost immediately after the first session.
It is very exhausting, and the nausea quite overwhelming, but I know in the end that I can do this.
Wow you’re halfway there! My cough also disappeared within 3 days, it’s amazing how modern medicine works when you have no idea what’s going on in your own body isn’t it?
I’ve totally got your back on this Ruben considering I can really understand the pains you’re going through, please update me as your recovery comes along.
You got this!! Teleport that bitch ass germ out!
I’m rooting for you bro! Stay strong and kick ass!
Andrew – it made my day seeing you and being able to chat with you. I think of you everyday. You have a gift of sharing your story.
Patty, I don’t think you understand how big of an energy boost it is for me to see you and the rest of the BIW team even though it’s for a few minutes via video chat. Keep it coming!