I’m so sorry for not posting for such a long time. I thought the chemo and radiation treatments were going to be the most challenging part of my cancer treatment. But at nearly 3 months after I’ve completed my courses of treatments, my recovery has been very long and very difficult. I have been anemic (low iron levels) causing extreme exhaustion. My legs have been tremendously sore and weak. Physical therapy has been only marginally helpful. Some of my other blood levels; specifically hemoglobin, white and red blood cell counts, have been taking their sweet time trying to get back in the normal range.
Thank you for the many messages to check in to see how I am doing. I apologize to all of you for the lack of responses. Please understand that I appreciate you reaching out, but I haven’t even been able to muster the energy to compose a post like this. It felt like a herculean effort just to respond to no less than six medical teams, (CF, diabetes, hematology, transplant, chemotherapy and radiation oncology). There were many days where I didn’t even look at my phone. Just within the last three weeks I have started feeling a LITTLE bit better and my blood levels are SLOWLY moving in the correct direction, but they’re still not back to normal. In May, it was a good day if I could find an hour of energy. In June, two hours of energy was a blessing. Trav stopped at a party over the 4th of July and he was so exhausted from relaying bad news, he tried to find a positive piece of information, so he told a couple of our friends that we received “good news.” As seemingly insignificant as it was, he told a few people that my ENT provider gave me the good news that one of my “nasal cavities wasn’t as clogged up as normal”, so I could “change my monthly nasal antibiotic installations to every six weeks.” The very next day, people reached out to say they were happy for the great news. In reality, he just wanted to relay some… any positive news. I was so miserable and out of energy, I missed every get-together we were invited to. It’s difficult when the malaise keeps dragging on and you don’t want to sound so negative. It is reality, though. SO… some more good news; I finally cooked a meal for the first time in 2023 when Trav’s dad came down a couple weeks ago to help with some household projects. Sometimes it’s the simple things that make a big difference. Here’s a picture of me, Honey, and Trav’s shadow in a Wells Fargo parking lot enjoying the 3rd of July fireworks over Target.
I had a follow up about 3 weeks ago with the radiation oncologist. She wanted the surgeon to take a closer look at my tooshie. He thought I had, and I quote, “a very pissed off hemorrhoid”. He mentioned how I had surgery and then they radiated the H. E. double hockey sticks out of my tooshie. He couldn’t tell, but he hoped it was just a hemorrhoid. He said he wanted to keep a closer eye on me.
This last Tuesday, the PA (physician assistant) to the surgeon told me she could feel the 3 lymph nodes in my groin. She said 2.5 months after finishing chemo and radiation she shouldn’t feel them, but it COULD be scar tissue. She was also concerned about my tooshie and wondered if the chemo and radiation did not get all of the cancer. Travis was not with me at this appointment so I quickly called him to be on speaker phone. The PA gave us possible scenarios if they determine the treatment didn’t take. They blasted it with so much radiation, they can’t dose me anymore, but there is a CHANCE I could receive more chemo. If chemo doesn’t work surgery would have to be considered. Surgery would require me to have a lifetime colostomy bag. She said if the cancer is still in the lymph nodes then surgery would not be an option.
She left the room to see if we could change some orders for tests, so I hung up with Travis. She came back into the room and after delivering POSSIBLY terrible news, with tears in my eyes she turned to me and said “see, this is why we tell transplant people to get checked out”. I was in shock!!! All that was in my head at that point was this treatment did not work and now she was accusing me of being non-compliant with my health. I looked at her and said “I take really good care of myself and I had my colonoscopy originally scheduled in March of 2020 then Covid happened and I was advised to hold off until Covid was over. I have continuously been asking about it “. After all that she then says she “could be wrong. The tests will tell.” AAAARGGGHHHH!
You know when you are told something that shocks you to the core, and you want to respond but you just freeze and go numb? You don’t really hear anything else, you’re trying to process the information, and you simply cannot formulate words. I cried so hard on the way home and all the things I wanted to say were firing off in my mind…
I am one of the most compliant patients. Do you think I would have stayed isolated for over 2.5 years if I didn’t take care of my health?
I listen to my doctors and if they tell me to drink 80oz of water, I drink exactly 80 oz. of water, but you have the audacity to insinuate I don’t take care of myself?
I am very proactive with everything, but you think I would avoid another easy colonoscopy with all I’ve been through?
There are other thoughts I can’t post on the internet.
I was already supposed to have a MRI and CT scans this coming week but they really need to take a closer look. So Monday, I have a PET scan, Tuesday I have a MRI, and Friday I meet with the medical oncologist.
Thank you again for all the messages, thoughts, prayers and positive energy. It really helps the spirit when people know they have the support.
Nikki's New Lungs 
HUGS!!!!
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Nikki,
I’m sending all my love and strength to you! I know things are so hard right now, but you are incredible and your strength and resilience will power you through all
of this. Hang in there. You’ve got this!!! 💪🏻❤️
XO
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Nikki,
I am so incredibly sorry for what you are going thru. I’m sure it’s incredibly hard and frustrating. It sounds like the lack of energy is the worst. When I had Covid, the worst effects were the lack of energy. It was so bad I had to be hospitalized and was so malnourished. Nobody can understand how taxing it is on your body when you’re anemic and can’t get the energy, sleep and nutrition you need. I was at the HPV oncologist the other day, and they took a rectal swab to see if I might have anal cancer among other things. I was thinking of you.
I hope and pray you get the energy back soon and that the cancer is gone. Do all you can do just to make it from one day to another. That’s all that matters right now…taking each day one at a time.
And hey, any news is good news, right?! Glad your one sinus cavity is clear! I’m so backed up that I can’t breathe at all thru my right nostril, which I know is minor compared to everything you’re going thru. It’s a shitty situation, ha!
Take care of you, keep the faith and you will rise up…just like you always have!
From one transplant cysta to another…
Aly
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Hi Nikki,
i’m so sorry to hear you’re going through all of this… It makes me sick that that P.A. spoke to you in that way- she had no right! Clearly she doesn’t know you at all!! I am praying for you, for your energy to continue in a positive direction, and that your PET scan shows you being cancer FREE! Sending so many prayers and hugs…
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Oh Nikki, what a year you have had. And now this. The what if’s, we don’t know, it could be, it may not be questions the worse. And now the stupid comment that was made to you. You are right, they do not know you and nor should they have speak that from their mouths as a processional. I too have had this experience. I wrote a letter. I told them everything I wanted to say but was frozen I’m shock, dis belief on what they just said. What they had the audacity to say. Write that letter. You deserve to let them know, to learn from you and to be better. Big hugs to you. Hoping for the best possible outcome for you.
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Loving you through all of this Nik. I am hating that you are dealing with this and I KNOW that you are THE MOST compliant (almost TOO compliant) patient ever!!! I’m sorry that you were made to feel that way… RUDE!! (I hope you read that word in my mad voice!)
Love you forever.
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Oh Nik,
Please know how much we love you and hope, with lots of prayers going up, that you’ll come out on the other end (no pun intended) as healthy as a bucking bronco!
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It was good hearing from you. It was good to hear you were able to get out for the 4th of July and that you were able to cook a meal! I’ve been thinking of you and praying that the treatments help you recover. Don’t let some ignorant comment by a doctor or anyone else ruin your day. Stay strong!
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Nikki-it’s Louise, Otto’s sister, just wanted you to know I’ve been thinking about you and sending you all the positive energy I can generate. You and Travis meant so very much to Jimmy. He thought you two were a perfect couple and how lucky you two were to have each other. I know he’s watching out for both of you. Everyday is a new day. Hope lives in our dreams. Don’t quit dreaming.
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I’m so sorry, Honey, that you’re having to endure even more. Sending you and your mom my love and prayers. 🤗🥰💕🙏🏻
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Nikki! You beautiful woman! I miss you! What the fluff?! You have legit been through unbelievable hell! I am so so sorry. Sounds unbearable. And how DARE that nurse speak to you like that?! EXCUSE HER!
People just say the dumbest shit, don’t they?! Like, you can be serious lady! You’ve been fighting for your life for decades!! I’m pretty sure of all people, you are not someone that skips appointments or major milestone appointments.
What a dumb ass bitch. Yes, I said it. How DARE she! Shaking my head.
My Dad was diagnosed with stage 4 terminal cancer in 2021, the most unforgiving kind. Gave him 2 weeks to live. We put all our faith in this comprehensive cancer team at the Cleveland Clinic. FIRST ROUND of chemo, first round! The head chemo nurse said to my Dad to his face, when he says to her, “I just want to feel better”
That f’ing “C U Next Tuesday” looked at my father and you know what she said???
“Mr. Ries, you’re not going to get better.”
All jaws dropped to the floor.
She then continued to say, “we’ll do our best to make you feel comfortable, but you are NOT going to get better!”
I have never in my life been more horrified and livid. This is our chosen medical team?! The team we chose y in give mg Dad the best fighting chance and 2 days into treatment to save his like and you tell my father it’s NOT going to work and we have no hope?!?!
Oh my God! I about died right then and there!
My father crushed all odds and didn’t live for 2 weeks, he made it 21 months!!!!! He crushed their statistics! And that stupid nurse and her RUDE ASS INSENSITIVE COMMENTS CAN ROT IN HELL!
Same with that dumb bitch who crushed my parents soul in January 2021.
I think if you often sweet nikki and I am so glad to hear from you. I am deeply sad to hear you are suffering! I will keep praying for you! As there’s no way you went through all that recent hell for it to not work!
I guess we’re going to see.
Love you, praying for you, sending good vibes and all my prayers.
xoxo,
JJ
Jennifer June Ries
HERO Expert | Anesthesia
Direct: 954-686-0552 Mobile: 214-984-0034
email: jj.ries@heromedical.comsydney.perez@heromedical.com
website: http://www.heromedical.comhttp://www.heromedical.com/
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Hey there
Thinking of you and knowing you are the most compliant person I know. Sending healing energy and ❤️
Take care and hope you get much better news soon
Sue
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Sending all positive energy your way Nikki. You have always been the most positive person I know. As for being a compliant and diligent patient, all I can say is that Dr must not really know you well. Doesn’t seem like an appropriate thing to say. I wonder if she recognizes that in hindsight? Regardless, I’m always here for you. Thinking about you and while it isn’t all good news, it was so nice to see your post! ❤️
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No words…just sending you love. 💕
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Dearest Nikki, Candace and I were glad to hear from you- but we feel so badly to hear all the SHIT you’ve been through. We admire your strength, your grit and life spirit.
You truly are one of our favorite people on this earth of ours!!
Please keep fighting!! It’s clearly very discouraging, but we believe things will get better- dark as it must seem.
Please know that we love you very much and are thinking and praying for you.
If there is one person in the world that deserves to get through this and be healthy- it’s you Nikki.
We’ve admired you from the first time we met you and have grown so very, very fond of you❤️❤️❤️❤️ We are looking forward to talking to you, seeing you and smiling and laughing with you. XXOOX
Jerry and Candace
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Sending you much love and many prayers. I’m so sorry for all that you are going through. CF is hard enough, but all of this on top of it makes life that much more difficult. Praying for you.
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Nikki, You are the strongest person I know. Travis is second. Sending you light, love and all that is needed for your recovery. Jill
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Thinking of you Nikki & hoping all the news to come will be uplifting. It’s hard to do, easy to say- try not to worry until you get all the test results.
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Everyday you are in my thoughts. I think I speak for everyone when I say We all want nothing but the best outcome for you. You are amazing and you are strong. I’m sending over all my love and strength. – Fellow Cyster ❤
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I love you Nikki 💕 Thinking about you and praying for you!!
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Kathy told me about the comment you received. The superior for that woman should be notified about how off base she was and how rude and unprofessional she sounded. She should not be in that profession if she doesn’t have better sense! How awful for you when it was so undeserved!!
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My prayers are with you Dear Lady!
Hugs,
Sandy
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