Wactchful Waiting=Disney employee on crack=Too much to handle.


I’m inpatient for my chemo now. Yesterday I met with my oncologist, and received the results of my PET scan. It had both pros and cons of course, because things can’t just be simple!
PRO: The cancer in my liver and bones has decreased significantly since my last scan on 12/5/13. Which is AWESOME. Dr. C was super happy about that part.
CON: A new mass, around the size of a quarter, is glowing in my chest. This was not shown on my last PET scan, and is in a new location than previous tumors.

Apparently this could mean a few things: There is a possibility that this is a viral infection (although more unlikely, as I would have had some sort of upper respiratory symptoms, which I have not, and still continue to not have any); It could be scar tissue from the biopsy and port placement performed last month; or it could be a new lymphoma tumor, resistant to my current chemotherapy. So, we are going to repeat the PET scan some time next week. If the tumor grows at all, even the slightest bit, I will start over on a whole new chemo routine. If it gets smaller, we will proceed. If it remains unchanged, it will be discussed and determined whether I should proceed with this chemo or not. So we’ll see. Obvie I’m hoping for scar tissue. I feel like scar tissue is a good possibility, but what the hell do I know?! Fingers crossed. Either way, its fine though. I’m worried, of course, but I’m not upset about the possibility of having to start on a new chemo, and basically just ignoring everything I’ve done so far. I mean it sucks, but I’m not mad about it. At least there are a lot of different treatment options out there–I just have to find the one that is right for me. Ultimately no matter what, it will still end in a stem cell transplant, and I just feel like that will have some really good results. So let’s just get er’ done I guess. I’ve definitely had worse PET scans–like that time they found a spot on my brain, and 3 appointments with a neuro oncologist later, just turned out to be a residual viral infection. I mean THAT was scary, so a tumor the size of a quarter in my chest? PA-LEASE.

I had chemo last night from 10-11pm. The first drug isn’t so horrible, except that it causes extreme night sweats. I hate those. Everything is very carefully timed, so I won’t have my next chemo for 24 hours, then 24 hours later will have a 24 hour drip. Blech. They do it this way to monitor any side effects, which are kind of major problems like nero issues/memory, and bleeding from the bladder. I don’t have an appetite, but have to drink a ton of water all day today (so I dont have to be hooked up to the giant bag of fluids), and have to do a lot of walking, so that I dont have to get a shot to prevent blood clots in my legs (another side effect). Anything I can do on my own without taking medications or whatever, I always try to do. I feel so much better the less medicine I have. –Which is ironic, since chemo is what is killing my cancer. Oh Universe! You’re so weird!

I’m on the 4th floor this time, instead of my normal 3, so its a bit boring because my normal day time nurses aren’t here to hang out with. Even though I called room service to order just coffee (because TMI ALERT!!!…it will help me poop), and they brought me a coffee mug, cream and sugar with no coffee; and even though I took an ice cold shower because there was only luke warm water for about 4 minutes the no hot water at all, I still have some great nurses, who have been amazeballs every time I’ve been on this floor. Kim, Jackie and John. And a special shout-out to John, who is fresh out of nursing school, and is one of the most kind people I’ve ever met. I let him try a dual port access on me, and he did great. He was nervous. so cute 🙂 And after discussing with a few other patients walking around, we feel strongly (if anyone higher up there from Seidman/UH is reading this), that they should have a blanket warmer on all floors. I mean blood cancer patients typically have poor circulation, and its already cold in the hospital!! I also feel strongly that we should have an open bar in the family lounge, and that they should have a Bloody Mary bar in the mornings, and mojitos at night. And a communal puppy. Because I mean, who doesn’t love booze and puppies??? People made of stone, that’s who. Also have any of you short people ever tried to sit on a hospital toilet??? It’s slightly harder to go to bathroom when your feet don’t touch the floor, and they’re just dangling there, getting all tingly. I feel like a member of the lollipop gang from the WOZ.

But here is a great bubble up! Diesel, our dog, is cancer free! Turns out he is just old. $400,000,000,000 later at the vet. :/ So he will just have to wait out the remainder of his long life in our home, with our crazy 3 year old trying to ride him like a horse. Sorry buddy! He has the learning curve of a stick.

I also wanted to thank the Singing Angels/Alumni. When my sister and I were younger, we were involved in this group, and have gained many life-long relationships because of it. They hosted a fundraiser for my family and I last Saturday. My parents and sister told me they had an amazing time, and I just really wanted to thank everyone who helped with this event, and who came in support. I wish I could convey how thankful and blessed I/we feel in words whenever people do such nice things for us, because honestly we really don’t expect it, but I can’t. All I can say is how extremely appreciative and grateful we feel for everything. We really don’t know where we would be without all the support we’ve had this past year+. We love all of you. 🙂

And thank you to my employer and coworkers. So many of you reached out to me in support, and it means so much to me. I’m so lucky to work with such awesome peeps. I am hoping to start coming back to the office every Wednesday, because with the Nupagen shots, my counts have been great.

And now I’m off to perform one of my favorite hospital activities. Cracking inappropriate jokes to my team of docs, in an attempt to make them feel completely uncomfortable. The ones who cave into the laughter are the only ones I trust. 😉

PS: Derek I love you. I love you for staying here every other night that I’m here. For cleaning the whole house and doing all of the laundry while I’m gone. For playing every single game/toy/movie, and reading every book that we own, to Mack to keep his mind off of things. I just love you. And Thank you to my cousins who stay at our house so that Derek can come here. I love you girls so very much.

PSS: I lost all of my hair (with the exception of my eyebrows and lashes thank goodness) after my last chemo. Like a baby’s ass. My cousin said I look like Moby. He is so right. Nice look, Moby!

6 thoughts on “Wactchful Waiting=Disney employee on crack=Too much to handle.

  1. Your cheerful blog always makes me smile and today there are not too many smiles in my house. Husband finished radiation but looks like he is in need of feeding tube. That change seemed to happen practically overnight (he has esophageal cancer metas. to his bones) and now he actually has some esophageal symptoms. Well,can’t be lucky for ever I guess. He remains upbeat as can be and says as long as we can still watch a movie together he is okay. That’s my guy. Stay positive and I totally agree about the puppies, drinks and warm blankets!

    • Fuck cancer. I seriously hate it. Your husband is for sure in my prayers as are you. I can’t even imagine what you must be going through, and to be honest I don’t want to. All I can tell you from the perspective of the person with cancer is, trust me when I say it hurts way more to see my family so upset than it does facing the possibility of death. If there is one thing I learned from my friend kris, it’s that whenever it is my time to go, I want people to think about me and smile, not be sad for my last days. I also know one thing for sure too. STATISTICS AND MEDICAL PROFESSIONALS ARE NOT ALWAYS RIGHT. My friend was given 9 months to live. She lived 2 years. I have had docs tell me May not make it, and here I am. Statistics show I should be dead. Which would be really creepy if I were still blogging! :/ I will share something with you, which I don’t talk about often. I have thought about my funeral often, and somehow planning it out in my head gives me something better to do than worry about what ACTUALLY happens to me when I die. And so I have decided I would like it to play out like this:

      First I want it to start out all sad. Bagpipes maybe?! Those were killer in brave heart. There will probably be a eulogy, (hopefully it’s awesome), and then for the processional I would like them to play something upbeat..a bit ore unexpected…like pitbull’s “start the party”, or “it’s getting hot in here” by nelly. Because them people would laugh and be like “oh mary! Typical”! And whoever I am, I think I’d get a good laugh seeing their faces. Oh ya and there will be a reception afterwards with the best booze ever.

      Laughter.is.the.best.medicine. Cancer is not always a death sentence. Don’t forget to keep laughing-together. Xoxoxo

  2. So glad you’re sharing your sense of humor during this whole debacle. I was also dx with blood cancer (non-hodgkins) when I was 32 with a 3 year old at home. I managed to hold onto my brows until round 5 of chemo, and then I had to draw them in (yikes!). I highly recommend Jane Iredale’s itty bitty brow kit. Also, I found comfort in putting on sephora sparkles before each scan/chemo dose. The nurses didn’t quite get it at first (thought I was just sweaty), but then they got to know me. Keep up the good work! I’ll be sending good vibes your way.

    • Ha I love it!!!!! When I lost my brows the first time, the night before I fell asleep on my stomach, and when I woke up, they were left in Perfect brow form…on my pillow. My hubby and I got a good laugh, but thanks for the tip!!! I like where your heads at girl! 🙂

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