Cancer Freeze recipient: ‘I will not give in nor give up’
Published 10:24 am Wednesday, January 29, 2020
Cancer Freeze recipient Joni Dalen’s story about her battle with ovarian cancer begins in the latter months of 2016.
“I was 36 years old, a single mom, and had a wonderful job working with a credit union,” Dalen said. “This was the happiest time of my life. My coworkers and I were focusing on eating right and going to the gym together with a personal trainer to help get us on the right path, and I just loved life.
After a month or so of the gym, Dalen started noticing her lack of energy slowly getting worse.
“When I would lay flat and do sit-ups I would get a sharp pain in the right side of my lower abdomen,” Dalen said. “I was never one for going to the doctor so I just blew it off and told myself, ‘Oh stop whining, you’re fine, just out of shape,’ Frustrated with myself, I would push myself through the exercising and even try to go at it even harder the next day. A friend of mine at the time had stopped by to visit and said, ‘All this working out and eating right you’re doing isn’t helping your belly any. You should focus more on sit-ups,’ Naturally, I was hurt by his comment but started to notice he was right.”
At the beginning of November 2016, Dalen and a few managers were sent for a meeting out of state and she started to notice something odd.
“This particular day I woke up and got dressed to leave and I noticed my pants were super tight on my stomach and that they would barely button,” Dalen said. “This was very odd because I wore these pants all the time and have never had this problem. By the end of the day, I had a rubber band holding my pants up because I could no longer button them. At this point, I didn’t know what was going on. I was too tired to go to the gym and was living on gas pills, and nothing was helping.”
The day before Thanksgiving in 2016, Dalen decided to go to urgent care.
“I remember sitting there at my desk, just so exhausted,” Dalen said. “My lower back was killing me, my stomach hadn’t stopped hurting or gone down any and seemed to just get bigger. I finally just decided to go to the local urgent care. The doctor came into to the room and asked me what the problem was. I told her my symptoms and I showed her my stomach and I said, ‘I know I’m a big girl already but this isn’t normal,’ She said, ‘No I can see this isn’t normal. Go ahead and lay back for me and let me listen to your stomach,’ A good minute and a half to two minutes went by and she said, ‘I can’t seem to hear your bowels moving. I think you should go to the emergency room just in case something has become detached inside, or possibly a blockage. They’ll probably just tell you no food for a while.’ I walked into the Emergency Room, wrote my name down on the list, and the lady at the desk asked me how far along in my pregnancy I was. Once I was back in the ER they were running all kinds of tests. My only real complaint to them was that I felt really bloated and had really bad lower back pain. They gave me some pain medication to help me get comfortable and the whole time I’m thinking that this is absolutely ridiculous. I kept joking around with the nurses saying, ‘I just need to take a good poop or maybe a good colon cleansing ought to do it and I’ll be out of y’all’s hair.’” After a couple of hours, they rolled her to the CAT scan machine and Dalen said she can remember when the nurse asked her if she had cancer in her family.
“I remember being in there for quite a while when suddenly the lady running the machine came over to me while lying there and asks, ‘Do you have cancer in your family?’” Dalen said. “I remember asking, ‘Why? Do you see something?’ She said ‘Oh I was just asking. The doctors will look over everything and give you the results, I just take the pictures,’ At this moment I began to feel something was wrong. They rolled me back to my room and the tests and waiting continued. I was about 5 hours in, and the nurse came rolling in what looked like an ultrasound machine. The nurse said, ‘I just need to get some pictures of your lower abdomen area for the doctors, so I have to stick this camera wand in your vagina to take pictures,’ I said, ‘Is this because they haven’t found anything wrong yet or because they have,’ She said, ‘Oh I don’t know, it could be either, or,’
Dalen said By this time, she was getting really annoyed because nobody was telling her anything and she had been in the emergency room for six hours.
“Finally, two nurses walk in the door very slowly, as if they were scared to come in,” Dalen said. “They were just standing there. One of the nurses asks me, ‘Are you okay? Do you need some more pain meds or another pillow or blanket or anything?’ At this very moment, I knew something was really wrong. Their faces really just said it all. I said, ‘Please tell me what’s going on, it’s been 6 plus hours and nobody has told me anything.’ The head nurse stepped forward and said, ‘We’ve gone over all your test results and you have a 15cm mass on your right ovary which is approximately 6 inches in diameter (about the size of a cantaloupe) and a bunch of smaller ones on your left ovary and the reason your stomach feels so bloated is because it is filling up with fluid called ascites,’ She just looked at me so uncomfortably while rubbing her hands together and said, ‘I am so sorry honey, it’s ovarian cancer,’ cancer.
As soon as Dalen heard the word, she broke down.
“Once I gathered myself I asked, ‘Can I just go in for surgery now and just have it all removed?’” Dalen said. “She said, ‘It’s just not that simple. You have a long road ahead of you but we do have a doctor willing to take your case. She’s about an hour and a half away at the Sacred Heart in Pensacola. We can transport you by ambulance now, or you and take these next few days to spend Thanksgiving with your family and just drive there on Monday,’ Spend this time with my family? I thought I was about to die, literally. I thought that I needed to go home and spend this time with my family because I don’t have much time. I’m about to die. That’s how they made me feel anyway. The next day was Thanksgiving and I haven’t slept a wink. All I could was cry and just lay there in disbelief that this was really happing to me. It all felt like a really, really bad dream. I realized there was no way I could enjoy myself with so many unanswered questions and there’s no way I could wait until Monday. That was 3 days away and I just needed to go now.”
Once Dalen arrived at Sacred Heart hospital in Pensacola, her admission was processed urgently, with no wait.
“I knew that this was really serious,” Dalen said. “The staff was very professional and courteous and did everything possible to make me comfortable. Next I met my surgical oncologist Dr. Ziebarth. She explained what she knew at that time and wanted to proceed immediately with preforming an exploratory surgery to see where the cancer was and just how bad it was. The next day or two she came to my room and her results were that the cancer was all inside my abdomen cavity and Dr. Ziebarth said, ‘There was a lot of it.’ I was diagnosed with stage 3C High grade serious ovarian cancer. She said I’m too young to have this kind of cancer, they call the silent killer and for me to hang on cause she’s gonna have to put me through the wringer; and boy did she ever.”
A few days after her exploratory surgery Dalen was released to go home for a few days and gather some belongings to prepare for the big surgery ahead.
“I used this time also to try and explain to my 15-year-old son the magnitude of this horrific disease, and what was about to happen,” Dalen said. “ This was so hard because I didn’t even understand the magnitude of what I was about to undergo myself. I was scared, mad, and confused. Just days ago I was at work living my happy little normal life. I’ll never forget the look on my son’s face. We just hugged each other and cried together. In that moment I was more scared for him that he may lose his only parent. That was very, very hard.”
Dalen’s big surgery or “Debulking” surgery was scheduled for Dec 6th 2016.
“Dr. Ziebarth told me she had to call in another surgeon to assist her in my surgery because she only handles the lower area of the abdomen and my cancer was all the way up by my rib cage and for that they were going to have to cut me from my rib cage down, around my belly button and down to my pelvic area and my recovery time on this was going be around 8 to 10 months,” Dalen said. “Once I was returned to my room after surgery the doctors came in and told me that once they opened me up they had to drain a total of 12 liters of fluid from my abdomen. Dr. Ziebarth said the cancer was everywhere so they had to do a full hysterectomy, scraped my ribs, removed some of my organs and scrubbed them down, then flushed out my abdomen cavity four or five times to try and remove all the cancer. She said, ‘I think we got it all, but in about four weeks I’m gonna hit you hard with high doses. You’re gonna get sick and you’re going to lose your hair.’ She said most women that get this kind of cancer are in their late 50’s and 60’s and just can’t handle this type of chemo to their abdomen, but she wanted to try it on me because I was younger and she thought I could handle it.”
A few days before chemo was to start, Dalen said she had to have two ports placed. “One was placed in my chest cavity, and one directly to my abdomen,” Dalen said. “I was about to have some of the harshest chemo out there while trying to recover from this massive surgery I just had. I can tell you the surgery was tough. The recovery time, along with all the complications I had gone through trying to heal, with the 55 staples was unbelievably tough. But that chemo was by far the worst of it. My doctor’s plan was to hit it hard in case there was any cancer left in there that they couldn’t see, and try and kill it off for good. The only way to describe how it made me feel is if I were to imagine what it would be like to be dying. That is how it made me feel. I would stay at a hotel for two nights so I could go back to the hospital to receive extra meds and fluids because it made me so sick, incapacitated, and incoherent. I was like a vegetable. I slept in the car on the way home.”
Once Dalen’s head hit her bed she just slept and only got up to throw up or drink. “This lasted at least five or six days,” Dalen said. “After which, I was finally able to get up and walk to the living room and sit in the recliner. That was a big milestone for me. Then, once I started feeling half decent, it was time to go back for another round.”
After six months, it was finally time for Dalen to ring the bell.
“My scan came back clear, and I was officially in remission,” Dalen said. “It was the best day of my life. My friends and family drove to Pensacola with me to celebrate. It was great, but very short-lived. I could write a book, but to make this story a little shorter, my cancer had returned. So far, each time I was told I was in remission, cancer has returned. I am now on my 4th reoccurrence and 4th round of chemo (which is 12 to 18 rounds per chemo round) and stage 4. The cancer has spread to my spleen, under my stomach, liver and a lymph node in my chest area. Another surgery is not an option for me because they say it will lower my quality of life. My remission times in between have only been about 4 to 5 months each time. So basically you could say I’ve been on chemotherapy for 3 years. All the doctors call me the ‘chemo veteran,’ That’s not exactly what I had in mind for my future. I was also diagnosed with a pulmonary embolism due to the chemo, diverticulosis, arthritis in my hands and spine, gum disease and breaking teeth. I also have two large hernias in my abdomen as a result of my invasive surgery. My oncologist says my cancer is very aggressive but there’s enough different chemotherapy out there to keep me alive a few more years, at least.”
Dalen has tried to go back to work for a while, part-time, but when she was notified of her reoccurrence, she was forced to resign due to excessive absences for chemo.
“I have now depleted all of my savings and 401k from work,” Dalen said. “My parents who are in there mid 80’s try to help where they can, but my Mother now has advanced Alzheimer’s and my Dad is the primary care taker for her. I recently received a letter from Social Security notifying me that they are going to reduce my financial support to half when my son graduates in March. I don’t know what I’m going to do. That is my only child support that I receive. My son is a senior this year, which alone is very expensive. My son desires to attend college locally here for 2 years so we can be together. I’ve contacted Social Security to discuss my financial concerns with them, but there is nothing they can do further to help us. So now, come March I am in danger of losing my vehicle, and possibly my home. I thought that after the big surgery and first round of chemo that, that would be it. I thought that I had made it through and could celebrate being a survivor, move on with my life but still, my fight continues.”
She said she has always been strong and independent and has never been one to ask for help, except from God.
“I am grateful for each and every day that I get to wake up to be with my son and hug my puppy dogs,” Dalen said. “Cancer has robbed so much from me. My faith has been shaken, I’ve struggled with depression, my hope and confidence has been knocked down, and built back up again after each reoccurrence. Cancer has robbed time from me with my son. I’ve missed so many gatherings, basketball and football games etc. I can honestly say this disease has brought me to my knees and shook me to my core. Yet I still stand and purposefully look for all the joys that I still have in my life. I continue to pray for the Lord’s guidance, strength, love and mercy for all who struggle with cancer. I will not give in nor give up.
When Cancer Freeze was notified of Dalen’s circumstance and contacted her about being a possible recipient, she said she just wept.
“I truly believe this was an answer to my prayers and I am so grateful. Thank you to Cancer Freeze and all the supporters for bringing awareness and support to those affected by this horrible disease. Please continue to pray for those that continue to struggle, and for the families and loved ones of the ones already lost but most importantly, please pray for the cure.”