It has taken me a long time to wrap my head around our current situation, let alone put it into words, but I am ready now. I just read my last post from April. At that time we were filled with joy as I was in remission from this horrible disease. Currently, I have just finished my third round of high dose, intravenous chemotherapy. It has been a long time coming to this point, so it's easiest for me to start from the beginning. I am somewhat fuzzy on specific dates, but will do my best keeping you on the timeline.
As I said, in April we were celebrating my newfound freedom from cancer. At the very end of May, I went to Lisbon to meet with primary care physician, Dr. Fernandez because I was having increased backpain and suspected a UTI (sound familiar). Dr. F, who has known me most of my life, told me that he could not rule out something more serious given my health history. We did a non-contrast CT of my abdomen/pelvis in Lisbon, and the results were sent to Fargo for assessment. I was told there was possible lymph node enlargement, but further assessment with contrast would be needed. That test was completed in early June. We were hit with a hard blow.
The CT revealed a small liver lesion and enlarged lymph nodes in the area of the liver. Dr. Gitau assured me the cancer was "slow growing", and that he and Dr. Banck would discuss the next course of action. I spoke with Dr. B on the phone, and she assured me that this wasn't something we needed to jump on immediately. The day I found out the cancer had returned was the very day before I was honored as the Honorary Chairperson/Survivor of the Year at our local Relay for Life. I kept the reoccurence quiet with the exception of my family. I gave my speech and pushed through it as I usually try, with a smile.
A couple days later, I left on a previously planned 5 day trip to see my best friend Merri in Phoenix, with the approval of my doctors of course. We had a great time working on her wedding plans and catching up. I returned to ND to start additional testing the following week. I had an octreoscan which revealed cancer uptake in a couple lymph nodes near my clavical bone, lymph nodes near my liver, and a small amount within my liver. Because my lesions were thought to be "slow growing", my doctors agreed on Lanreotide injections. Lanreotide is a shot given every 4 weeks to stop or slow the growth of neuro-endocrine tumors. It was passed by the FDA in December 2014, and research was very promising. I had my first injection near the end of June.
Throughout the summer we tried to take all focus off my cancer. I was reassured that this drug would help, but only time would tell its effects, so we had to let it run its course. Our family spent a large portion of the summer at Jeremy and Alayna's place on Cormorant Lake, hanging out in the sun, riding the boat, fishing and making awesome summer memories with the kids. The second weekend in July, Tim and I traveled to Las Vegas for Merri and Jo's wedding and had an awesome time with old friends. I was honored to stand by her side on her big day. I had my second Lanreotide injection in late July, and at that point my standard bloodwork looked good.
Progressively through the summer, my back started hurting more and more. I became accustomed to sleeping on a heating pad. I called Dr. G and asked for something for pain. He put me on Ultram. Tim and I planned a family trip with Arya to Kansas City to see our friends over our five year anniversary weekend. Prior to going, I called Dr. G for a change in pain meds because the Ultram wasn't cutting it. He prescribed Vicodin, but he also wanted to do a spinal MRI to see what was causing the excessive pain. Due to a scheduling conflict, I couldn't do the test until after we returned from KC. We went to KC and had a great time with several friends and former coworkers, but my back was still an issue despite the Vicodin. I became physically ill after eating at one of my favorite restaurants, so we hung pretty low key the remainder of the weekend. The 9+ hour return drive did not help matters any.
I had the MRI right when I returned. I asked to be called ASAP when the results were in. Although the official radiology report was not completed, Dr. G called to give me an update from what he and the staff radiologist saw themselves on the images. He told me that there were lesions on my lumbar spine as well as larger and more lesions in the liver again. The number of affected lymph nodes also increased. I felt as though he somewhat downplayed the severity of the situation. I emailed his nurse and requested copies of all the testing reports. After picking up yet another pain medication at the Roger Maris pharmacy, I was handed the stack of reports as I was leaving. The report of the spinal MRI was far worse than I was initially lead to believe. Lesions were shown on thoracic vertebrae T5, T6, T7, T9, T10, T11; lumbar vertebrae L1, L3, L4, L5; small lesions on sacral spine; lymph nodes within the retroperitoneal periportal area and supraclavicular area; and multiple liver lesions that had significantly grown. My mom and Alayna were with me as I read these reports. I completely freaked out and called Dr. B immediately. She was very caught aback by what I read her on the reports. She realized NOT "slow growing" after all. I was already scheduled to be at Mayo three days later.
My Mayo visit was a blur. I was in so much pain by the time we got there that we contemplated using a wheelchair. The first day there was a Monday. I had bloodwork, CTs of neck, chest and abdomen/pelvis, and an MRI of my abdomen pelvis. After all my tests, I met with Dr. B. Test results were comparable to what was noted on the Sanford tests. Dr. B was extremely concerned about my pain, so she prescribed the heavy hitting meds, Oxycontin and Oxycodone. She also recommended spinal radiation ASAP to alleviate pain. Due to obvious changes in the tumor proliferation, she scheduled a liver biopsy Wednesday morning. After our consult with Dr. B, we saw my radiation oncologist Dr. Olivier and his associate. He had reviewed all my testing and schueduled simulation and radiation the very next day. He also discussed radiation options in the future depending on Dr. B's treatment recommendations. He also explained that we could not fully radiate my spine at this time as chemo was likely needed, and the bone marrow could not be damaged. Tuesday morning we had a radiation simulation, and Tuesday afternoon I had my treatment. I was initially in increased pain following the session, but over time it subsided. Wednesday morning was my biopsy; that afternoon I had a follow-up with the radiology associate. He told us the Dr. O was already brainstorming for treatment options or techniques for when the time comes. Right away Thursday morning, we were back in Dr. B's office. Official pathology reports were not back, but preliminary findings definitely proved that we were no longer contending with "slow growing" but rather high grade tumors. She ordered an aggresive three day regimen of high dose intravenous chemo which she wanted to start the following Wednesday. It had been a long trip and a long ride home, but we were greeted in Fort Ransom in such a heartfelt way. We crossed Main Street at 11:25pm, and a large crowd of our friends and family from the community had congregated into the street in front of the bar. They just wanted us to know that they were all behind us. It was very humbling.
The following week I insisted on going to the lake and spending my chemo time there. I was wishfully thinking I wouldn't feel as crappy as I did. The first round was 8 hours Wednesday, 4 hours Thursday, and 3 hours Friday. My mom was with me for all these sessions. It didn't really hit me hard until Friday afternoon. I spent all Friday evening, Saturday, and into Sunday morning sleeping on the couch. I had no appetite, no energy, no desire to get up. Food tasted awful, and I had the horrible metalic taste in my mouth. Thankfully Tim, Alayna and my Aunt Rita were all there to take care of the kiddos and myself when needed. I thought I had mentally prepared myself for the first round, but there is really no way to be "ready" for chemo.
We left the lake Sunday afternoon, and we were greeted at home by Tim's mom Deb and his aunts Linda and Deanna. His aunts planned to stay the month to help out with anything and everything, and Deb will be here for the longhaul. Tim's dad Tom will join us later this month. We are so fortunate that they have a home here now and can come and help when we need them. Having Tim's family here was and has been a Godsend.
My mom had scheduled knee surgery earlier this summer. When hearing my diagnosis, she wanted to cancel, but my family and I would not let her. We all agreed how important it was for her to do it ASAP. For awhile we were balancing care lists between our two homes, but she's been recovering so quickly that she is now getting around great. We've really leaned on eachother the past couple months. On top of my chemo regimen and mom's surgery, both Tim's family and mine have had family medical issues pop up that has added additional stress to the whole situation.
After the first round, it took me a solid week to bounce back. Once I did I was back to doing a lot of things I normally do. I scheduled family pictures which I wanted to have done before my hair was gone. They turned out fabulous, and we had the shoot in the knick of time because that day my hair started falling out.
My Grandma Joyce was my chemo partner for Round 2. She was with me for my 8 hour Wednesday session then we stayed at Rita's in preparation for Thursday's morning session. Friday, Grandma and Aunt Shirley took me back to Fargo and home again. I managed to bounce back more quickly after this round.
SVACA (Fort Ransom's giant arts and crafts festival) came and went. Tim's aunts left shortly after. I've been missing them a lot as they were good company and such great help. Merri came into town right before my third round started. She flew in on a Monday, we did a lot of catching up, and then she came to chemo with me for my 8 hour session and 3 hour session Thursday. It was awesome having her here. Tim brought me to treatment Friday. Again, I felt great until Friday evening. This third round has been more difficult than the second.
Third round was last week. This go around I have been very dizzy, my blood pressure is low due to dehydration, ringing in the ears and sound distortions. Overall side effects have included hair loss, weight loss, minimal appetite, dry skin, hot flashes (which are awful I now know), tingling of hands and feet. Most of my hair is gone, but I do still have minimal in a bob cut. I have a wig that I have worn on special occasions, but I prefer to wear a hat. Both are rather hot.
When feeling up to it, I have tried to participate in as many activities as I feel I can. We've been to the zoo, shopping, playing with the kids, cleaning, dinners out, etc. We have had the most amazing support system throughout this entire mess. Family support has been great with my parents here, Deb here and Tom on the way, Tim's aunts, my sisters, and Grandma as well as extended family. I don't know what we'd do without them. This is precisely why we decided to move home. Also the outpouring of support from our community, our friends, Tim's coworkers etc has been huge. Nothing can compare. I'd like to thank everyone who has shown their support through cards, calls, messages, freezer meals, offers for babysitting, cleaning and rides to treatment, etc. Your generosity and complete sense of caring does not go unappreciated.
I am scheduled for chemo again right before Halloween, which makes me kind of sad to miss out. We return to Mayo November 16 and 17. At that time we'll discuss next steps. So far my bloodwork has been promising. My counts have been great. My kidney and liver function is still normal. Liver tumor markers being tested are trending down, which could be an indicator that the tumors are shrinking or losing strength.
As for what you all my be wondering, how am I doing? Well...I have been dealing with each day one at a time. This is the first time in my life I have ever tried to keep weight on or even gain weight. As always my Arya makes me happy every day, so I try focus positive energy on her. I have Tim, my rock and as I said, a huge support system. I definitely do have my down days, but they are getting better. I have a lot of inner thoughts, but I am able to talk to someone about them. I worry about everyone around me and how this affects each of them. I know we are all hurting in our own way, but we all have been staying strong and having hope and faith in the future. You have nothing if you don't have hope. I'm sorry that it has taken me so long to tell this story. The thought of writing it out and reliving it was intially scary, but as I've typed, this has definitely been therapeutic. I am also sorry that this is so long. Sometimes I ramble. Anyone who knows me, also knows that my stories in general can get quite long ;)
Much Love-Jenny
