After the overwhelming feedback I had for my blog post, Ignorance is Bliss, last week and how everyone loved how real and raw it was, I will stay true to that and continue the narrative of my current reality.
In preparation for my upcoming stem cell transplant scheduled for next month, I have to do a series of baseline testing (click for more details) which notably includes a lot of blood work, a chest x-ray, an Echocardiogram and a Pulmonary Function Test. Today I completed the Pulmonary Function Test, the inspo for the name of this blog, which is a breathing test that measures the capacity of your lungs and the ability of your blood to carry oxygen. Holy shit. No one warned me that it basically feels like you’re being suffocated. I’m not sure if it’s usually that bad or if I’m just so tired of being in the hospital (I’m on day 29) but it took a lot out of me. I immediately cried when we were done. Braless, in my beanie and doughnut PJ pants… What a sight to see.. lol
As I sat in the hallway for 10 minutes in a wheelchair waiting for someone to transport me back to my room, I couldn’t help but want to scream at the top of my lungs. I watched person after person pass me by on their way to their destination and here I was stuck waiting for some 18 year old to take me back to my room regardless of being perfectly capable of walking. I absolutely hate being just a medical record number or name and date of birth. Having the small talk of where I’m from and people saying ‘oh okay’ like they have a clue where Jupiter is. They don’t know what else to ask. ‘How are you’ is a loaded question in a place like this. Everyone is so nice so it’s not as though they’re being rude but I’m just so over it. I was thinking how just a few weeks ago, I’d be one of those people in the healthcare field talking about a patient I interacted with and now I am one of those patients. I don’t feel like an independent, grown adult. I couldn’t get up and walk back to my room.. I mean I guess I could’ve but I’m sure I would have gotten a stern talking to. I want to be able to go outside and feel the heat wave everyone keeps complaining about, eat food that’s so good you have to stop yourself from eating it all because you’re about to explode (or worried about the calories) and be in a place where you don’t have 8000 strangers coming in and out needing to discuss something very personal all while using a voice that’s upbeat but you know is masking their concern. My day will come and I know that. It seems like it’s so close yet so far.
Thankfully I came back to my room and had a few awesome packages waiting for me which instantly brightened my mood and made me smile big.
I am getting discharged in a day or two and I’m so anxious about it. People keep talking about me going home without realizing home is Florida. Meanwhile, my mom and I are scrambling to find a place to stay for the next couple weeks in hopes we will actually be able to go home. There are still a few factors that will determine if I can go home; the next bone marrow biopsy must come back all clear of cancer, my counts need to be at a safe enough level to travel and I need to meet with the reproductive team. I think that part needs to be a completely separate post but in short, odds are infertility will be a devastating side effect of the transplant and I’d like do to whatever I can to give myself the best option of having my own biological children in the future. I mean, we can’t let these cheekbones go to waste! I always have to crack jokes.. it’s just what I do. It makes it that much more difficult to peruse Facebook today on the first day of school. Your kids are so stinking cute and I can’t help but love all of their cute outfits and apprehensive smiles. It just sucks so bad to have something taken away from you that you’re not even ready for but I’ll cross that bridge when I get there. I have heard a lot of miracle stories since I’ve been in here so I have to hope that I’ll have a miracle in my future. Unfortunately, surviving comes first so that will be my priority.
A nice guy from home health came in today to teach us how to care for my picc line when I’m discharged since mom and I will have to do daily flushes to keep it working properly. He too asked where home is since he will be shipping the supplies.. Umm, we’ll have to get back to you about that. Hopefully an Airbnb or Craigslist post will come through so we have an apartment to go to as opposed to a hotel room. Boston is wicked expensive! It is one of my goals to at least be able to imitate an accent when I leave here.. haha
I have been feeling a little better these last few days which my mood is not accurately reflecting. My mouth pain is still hanging around but seems to be improving ever so slightly even though they still can’t pinpoint the cause. I finally succumbed to Ambien, the sleep aide, and it has been amazing. Prior to this miracle drug, I didn’t sleep consistently for more than an hour or two. The first night I used it, my night nurse Katie said she kept poking her head in checking on me since I haven’t been that quiet throughout the night in a long time. I asked her if I happened to be walking around the room naked and she laughed and said not yet. (Again with the jokes). But two hours just ain’t going to cut it! This girl needs her sleep. I know I’ve mentioned it before, but I have been called dragon lady in the past, cute nickname girls.. LOL
I’m confident that once I get a break from the hospital, my spirits will vastly improve. I have a couple visitors coming this weekend and next which will be so awesome. I’m not sure what type of restrictions I’ll be on but it will be nice to hang outside of the hospital room. One step down and one big, final step to go. Even though this cancer is curable, I still sometimes wish I had a different kind. One where you get treatments outpatient once or twice a week, maybe lose you hair and have side effects from chemo but all are handled in the comfort of your home. Leukemia is no joke. 100+ days in the hospital and counting and now 6 chemo treatments to date. It is one of the most grueling, intense treatments but I can/will do it. I may just cry a lot in the process. I’ve been working with physical therapy and have a step (like in aerobics) and resistance bands that I’ve been using to keep up my strength. Having the Olympics on all day has been the best motivator to get out of my bed. I’m preparing to be the next Kerri Walsh Jennings.. obviously. She’s such a boss. She’s a beach volleyball player in case you’ve been living under a rock.
One thing that I have to say before I wrap this up is I have had a lot of people share posts, that are hardly scholarly articles, about chemotherapy and the conspiracy that the government and pharmaceutical companies keep us all sick for profits. A few points that come to mind: if you honestly believe that why on Earth are you bringing children into a world with such horrific intentions, how do you explain the people that live until they’re 80+ years old who have drank and smoke their entire lives yet 2 years olds get rare brain cancer and finally, do you know how offensive it is to those actually fighting cancer or those who have lost a loved one to cancer? Can you say for sure you would take the holistic route if you, your spouse or child were diagnosed with something that can no doubt kill you and take such a risk with your life? Do you truly believe people who dedicate their lives to cancer research and treatment are doing it all in vain? Am I fighting for my life all so pharmaceutical companies profit? Do you think that would even be worth it? Be conscience of what you’re posting and make sure it’s from a credible source before spreading hysteria. Cancer has been around since the time of hieroglyphics and well before modern medicine so be mindful of the facts. One of the best documentaries I’ve seen is based on a book called The Emperor of All Maladies and the 3 part televised series was featured on PBS. You can watch it here and I recommend you do before providing such strong commentary on the terrible disease that cancer is and a disease that effects every social class, region, nationality, etc. I just hope if you truly believe it is conspiracy, then you are dedicating your life to research to blow the lid on said conspiracy and educating the public, not just sharing articles on social media.
Finally, today I am thankful for the ability to write this blog, the ability to smile amidst the tears and all of the support I receive everyday that helps me keep fighting. I hope you all are living each day to the fullest and tell your loved ones how much they mean to you every day.
All my love,
Of course, the good ol’ GoFundMe page for those who want to help my fight. Thank you to everyone who has donated so far. I’m still working on the thank you’s so if you haven’t received one yet, it’s coming!