Well I hope that all of you had a magical Christmas filled with friends, family, food, fun and festivities. Ours was perfect on the holiday end, but my health concerns have not been as smooth.
I started catching a cold around December 20th and woke up Monday the 21st with a wretched sore throat. I was set to have chemo that day, so I ventured to Fargo. After reviewing my blood work, Dr. Gitau told me that my white count was reduced to 1200. The low threshold for treatment is 1500. I couldn't proceed with treatment, but he was hopeful that my counts would go back up, and we'd have treatment on the 28th. I was only mildly concerned at the time because I would still get 2 more treatments in by the time we went to Mayo. I was also happy I wouldn't be dealing with chemo side effects over Christmas.
After my canceled treatment session on the 21st, I spent the day with one of my besties Leah. We went to lunch, a movie, shopping, her son's basketball game, and dinner with her son Brendon. It was awesome spending the day with them. My cold was getting worse, so I had to cancel my "girlfriend Christmas" on the 23rd. I wanted to get some rest before the big festivities.
The night of Christmas eve, my parents hosted our annual Olson Family Christmas party, where my dad's whole side of the family is there. We eat appetizers, open gifts and play an exchange game. This year I added a photo booth that turned out to be a great success. I have hundreds of silly pics of everyone. The kiddos thought it was exceptionally fun.
Santa arrived Christmas morning and brought Arya a beautiful barn and farm set, complete with gates, fences, feeders and animals. This Mommy loved her morning with just baby and my husband opening gifts. Later in the morning, Grandma Deb and Grandpa Tom stopped by to see Arya's presents.
For lunch or what North Dakotans would refer to as dinner, we went back to my parents' house for a Christmas with just our immediate family. We stuffed ourselves full of Mom's waikiki meatballs then opened our gifts. The kids were having a ball, and us adults did as well, especially seeing the kiddos' faces. Also, if you run into my Dad Ron Olson, give him a high five for the amazing ring he gave to my Mom. If you see my Mom Lelony, ask to see it.
After a quick afternoon nap, we went over to my in-laws Tom and Deb's house here in Fort Ransom. We again ate ourselves full of ham and all the fixings. After our nice meal, we opened gifts and stockings. Again, seeing Arya's face was the best part of the day.
My mom, sisters and I headed to Fargo early for some after Christmas deals. I have an obsession with Christmas decor, so this day is like my Black Friday. I didn't go TOO overboard, but I did buy all the trimmings for the tree decor Mom, Alayna and I will be donating for next year's SVACA/Community Club Christmas event.
Then Monday the 28th came, and Tim and I were back in Fargo for my rescheduled treatment. He left to run errands and I proceeded to get my blood work and wait for treatment. I was shocked when I found out that my white count had not only dropped, but it had dropped down to only 200. I turned into a wreck, and Tim quickly came back to the hospital for my doctor's input. I didn't meet with Dr. Gitau directly as he was with patients, but the nurse practitioner was in contact with him. They kept telling me that this is a common yet serious side effect of the chemo. They said there isn't a whole lot I can do but give myself time to allow my bone marrow to produce more white cells. I also have to be EXTREMELY cautious now for infection. I'm sure all the activity over the Christmas week didn't help my counts, but I also have to live my life. My cold is still present, but it is mostly just a runny nose at this point. For the next week, they want me to stay put in my home, get rest and eat healthy, and most of all avoid anyone who may be sick. I, of course, stated my worries that holding the chemo would let the cancer potentially advance, but they said that I already have a build-up of chemo in my system. This is where we weigh chemo good vs bad effects. With any luck, my numbers will be up again next week, and I can proceed with treatment. We've had to cancel any New Year's Eve plans we had, as well as plans for my 33rd birthday, but bringing up my counts is of the utmost importance right now.
I'm keeping my fingers crossed and praying hard that my cold will go away, and my white count will go up so that I can get treatment on the 4th. That will mean that I only have 1 more treatment before Mayo, but hopefully it's enough to show some improvement on my January 18th scans.
Overall, we had our perfect Christmas, but the struggles of my disease were always on our minds. Myself and my family have all been in good spirits, and we made sure that we just appreciated eachothers' company over the holidays. After all, family, friends, faith and love are what is important at this time of year.
With love, faith, humility and gratitude for all your support-Jenny
Tuesday, December 29, 2015
Tuesday, December 15, 2015
Merry Christmas, Happy Holidays, Happy Hanukah, Blessed Kwanza, Happy New Year
As most people know, this is my favorite time of year. I do believe in miracles, hope for the future, love of family and friends, gathering and giving, and being thankful for all the blessings we have. It's a very warm time of year. And despite our many trials and as many times as we have been kicked down, I can still feel that warmth. What most may NOT know, is that today, December 15th is the 8 year anniversary of my first (blind) date with Tim. I've spent the last 8 years with the love of my life and for that I am forever grateful.
The last time that I wrote, I had just completed my third round of chemo. I followed that one up with a fourth and final round of that regimen just prior to Halloween. With the help of a blood transfusion sometime in there, I bounced back pretty well from that last round.
We had our much anticipated Mayo appointment November 18th, and I admit that I was terrified. At this appointment they completed repeat bloodwork and CT scans of my neck, chest, abdomen and pelvis. We met with Dr. Banck, and the results were mixed. The chemo regimen that I had been on worked pretty well on the liver and lymph node lesions. The liver lesions have shrunk down and some of the lymph node lesions were gone. However, the chemo had no effect on the bone lesions, which have advanced down the entirety of my spine, a few on my pelvis, and she states that there are some on the ribs (although those were not outlined in radiology reports). We were pleased to hear about the soft tissue lesions, but the bone advancement was difficult to hear. Dr. Banck ordered another regimen with an added medication that research has shown to stop bone lesion growth. We left Rochester with very mixed feelings, but knowing another plan was in place. I will return there January 18th for follow-up testing, and I will also be meeting with my radiation oncologist to determine his perspective on treatment.
I have since then started on my new regimen that I am tolerating very well. I now only have to be in Fargo 4-5 hours one day for IV infusions. At the end of infusions, I am fitted with a pump attached to my port that delivers another type of chemo over the course of 46 hours. I am able to have this removed at the hospital in Lisbon. This regimen hasn't made me very sick, but it does have a strange side effect that makes me have to avoid anything cold. Contact with something cold shoots a strange pain to that area that feels a lot like extreme frost bite. It's very strange. I have also had to have a second blood transfusion as my hemoglobin keeps going down. The explanation is that the chemo kills cells, but it cannot differentiate between new good cells and new cancer cells. During times my hemoglobin is low, I am very lethargic and have no energy at all. After a transfusion, I feel amazing, almost like myself again. I will go again for my next regimen Monday the 21st. Luckily the pump will be removed before all the festivities!
My family and I have been processing this information for a long time. I have been dealing with cancer on and off now for the past four years, and I have no intentions of giving up anytime soon. I have made in abundantly clear to my physicians that they WILL try anything and everything if needed until this wretched disease is gone.
I know at times I often feel that people handle me with kids' gloves. I was offering assurance to a friend the other day regarding a problem, and she told me that she doesn't want to bother me with her problems because I have enough and hers pale in comparison. I told her I didn't want to hear that. Everyone has their own struggles that they deal with everyday, and I don't want others to feel like their problems aren't valid. I'm still me, and I love being there for my friends and family whenever they need me. Also, you don't need to be delicate around me. I still have fun and try make the best out of everything. I'm not sitting home feeling sorry for myself. It's ok to give me grief about my bald head. It doesn't bother me, and I actually find it funny. Arya says I have Barbie hair (because of the Cancer Asso. Barbie she was given). Leighton just mimics everyone saying "bald head, bald head" repeatedly. Corbin's is the best. He told me I looked like a light bulb. Touche, buddy.
As I said earlier, the holidays are my favorite time of year, and I haven't slowed down due to this distraction. I felt alright despite chemo on Halloween, so I threw a quick costume together and joined my family at Fort Ransom's Trunk or Treat. Arya was an adorable little Minnie Mouse with Leighton and Corbin played the role of Mickey. Nearly the whole month of November, Deb and I worked on decorating my house. I typically go all out, but this year our house was on the annual tour of homes, so we went over the top. I loved it. We had a lot of fun doing it, as usual. Tom and Deb left prior to Thanksgiving. We celebrated a wonderful Thanksgiving at Barry and Linda Kylstad's with half their family and all the Isleys. The Saturday after Thanksgiving was the tour. With a lot of help from Mom, Teresa, Alayna and Leah, my house was emaculate and well staged. Toot Toot. Two more of my college girlfriends joined us for the event, so I was able to have a great girls night with some of my besties. I had 119 people sign my guest book that night. It was a great fundraiser.
We also had Santa here in Fort. Arya was prepared to tell Santa what she wanted, but she froze up a little when meeting him. We got a great picture, but she had to sit with Momma. She was going to tell him she wanted a horse. Maybe one day that'll happen. I've finished shopping and all my wrapping and cards were sent. Cards are one of my favorite traditions. We had friends over this past weekend for an adult get together, and we had a great time. I hadn't gotten out much in recent weeks, so it was pretty fun.
All in all, we are making the most of the holidays, and not taking any of our time together forgranted. We still have a lot on our schedule coming up including visits from friends, Tom and Deb's return, school and church programs, etc. I want to send a big thank you to all of you who have sent gifts, cards, food and delicious Christmas treats. We have such great friends, neighbors and family. Your generosity is so appreciated. To anyone who has wanted to stop by but feels that they are intruding, you're not. We like the company, and I do still like to talk just as much as I ever did. Tim, Arya and I would like to wish everyone a Blessed Holiday Season and a very Merry Christmas filled with Faith, Hope, Joy and Love.
The last time that I wrote, I had just completed my third round of chemo. I followed that one up with a fourth and final round of that regimen just prior to Halloween. With the help of a blood transfusion sometime in there, I bounced back pretty well from that last round.
We had our much anticipated Mayo appointment November 18th, and I admit that I was terrified. At this appointment they completed repeat bloodwork and CT scans of my neck, chest, abdomen and pelvis. We met with Dr. Banck, and the results were mixed. The chemo regimen that I had been on worked pretty well on the liver and lymph node lesions. The liver lesions have shrunk down and some of the lymph node lesions were gone. However, the chemo had no effect on the bone lesions, which have advanced down the entirety of my spine, a few on my pelvis, and she states that there are some on the ribs (although those were not outlined in radiology reports). We were pleased to hear about the soft tissue lesions, but the bone advancement was difficult to hear. Dr. Banck ordered another regimen with an added medication that research has shown to stop bone lesion growth. We left Rochester with very mixed feelings, but knowing another plan was in place. I will return there January 18th for follow-up testing, and I will also be meeting with my radiation oncologist to determine his perspective on treatment.
I have since then started on my new regimen that I am tolerating very well. I now only have to be in Fargo 4-5 hours one day for IV infusions. At the end of infusions, I am fitted with a pump attached to my port that delivers another type of chemo over the course of 46 hours. I am able to have this removed at the hospital in Lisbon. This regimen hasn't made me very sick, but it does have a strange side effect that makes me have to avoid anything cold. Contact with something cold shoots a strange pain to that area that feels a lot like extreme frost bite. It's very strange. I have also had to have a second blood transfusion as my hemoglobin keeps going down. The explanation is that the chemo kills cells, but it cannot differentiate between new good cells and new cancer cells. During times my hemoglobin is low, I am very lethargic and have no energy at all. After a transfusion, I feel amazing, almost like myself again. I will go again for my next regimen Monday the 21st. Luckily the pump will be removed before all the festivities!
My family and I have been processing this information for a long time. I have been dealing with cancer on and off now for the past four years, and I have no intentions of giving up anytime soon. I have made in abundantly clear to my physicians that they WILL try anything and everything if needed until this wretched disease is gone.
I know at times I often feel that people handle me with kids' gloves. I was offering assurance to a friend the other day regarding a problem, and she told me that she doesn't want to bother me with her problems because I have enough and hers pale in comparison. I told her I didn't want to hear that. Everyone has their own struggles that they deal with everyday, and I don't want others to feel like their problems aren't valid. I'm still me, and I love being there for my friends and family whenever they need me. Also, you don't need to be delicate around me. I still have fun and try make the best out of everything. I'm not sitting home feeling sorry for myself. It's ok to give me grief about my bald head. It doesn't bother me, and I actually find it funny. Arya says I have Barbie hair (because of the Cancer Asso. Barbie she was given). Leighton just mimics everyone saying "bald head, bald head" repeatedly. Corbin's is the best. He told me I looked like a light bulb. Touche, buddy.
As I said earlier, the holidays are my favorite time of year, and I haven't slowed down due to this distraction. I felt alright despite chemo on Halloween, so I threw a quick costume together and joined my family at Fort Ransom's Trunk or Treat. Arya was an adorable little Minnie Mouse with Leighton and Corbin played the role of Mickey. Nearly the whole month of November, Deb and I worked on decorating my house. I typically go all out, but this year our house was on the annual tour of homes, so we went over the top. I loved it. We had a lot of fun doing it, as usual. Tom and Deb left prior to Thanksgiving. We celebrated a wonderful Thanksgiving at Barry and Linda Kylstad's with half their family and all the Isleys. The Saturday after Thanksgiving was the tour. With a lot of help from Mom, Teresa, Alayna and Leah, my house was emaculate and well staged. Toot Toot. Two more of my college girlfriends joined us for the event, so I was able to have a great girls night with some of my besties. I had 119 people sign my guest book that night. It was a great fundraiser.
We also had Santa here in Fort. Arya was prepared to tell Santa what she wanted, but she froze up a little when meeting him. We got a great picture, but she had to sit with Momma. She was going to tell him she wanted a horse. Maybe one day that'll happen. I've finished shopping and all my wrapping and cards were sent. Cards are one of my favorite traditions. We had friends over this past weekend for an adult get together, and we had a great time. I hadn't gotten out much in recent weeks, so it was pretty fun.
All in all, we are making the most of the holidays, and not taking any of our time together forgranted. We still have a lot on our schedule coming up including visits from friends, Tom and Deb's return, school and church programs, etc. I want to send a big thank you to all of you who have sent gifts, cards, food and delicious Christmas treats. We have such great friends, neighbors and family. Your generosity is so appreciated. To anyone who has wanted to stop by but feels that they are intruding, you're not. We like the company, and I do still like to talk just as much as I ever did. Tim, Arya and I would like to wish everyone a Blessed Holiday Season and a very Merry Christmas filled with Faith, Hope, Joy and Love.
Friday, October 16, 2015
Too good to be true...the summer that has changed everything...again.
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
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
Friday, April 10, 2015
A Healthy Spring...
Spring is here in North Dakota, and as usual, Mother Nature hasn't decided whether she's warm and fuzzy or a cold b****. Some things never change, so you just take what you get. I guess that would be a good metaphor for many aspects of life.
Enough with that though. Aside from some ridiculously chilly days, it has been a good Spring for the Ekvalls. Since I last wrote, there has really been nothing of circumstance to write about. That feels so good to say! I have fully recovered from the surgery I had five months ago. Tim went on a guys' snowmobiling trip with a group of friends. My mom, sisters and I had our ladies weekend in Minneapolis complete with Adam Levine at a Maroon 5 concert. We've had some visitors from Illinois, and we had a wonderful Easter with family.
One of the most notable things that happened was that I was asked to be this year's honorary chairperson for Ransom County's Relay for Life. I'll be this year's survivor representative, presenting my story at the annual event Friday, June 5 from 11am to 11pm. I'm honored for this opportunity to represent other survivors and also those who we've lost. It's a great family event, so if you can, please join us.
This week Tim and I made our every three month pilgramage to the land of Mayo for follow-up testing and appointments. I had blood testing and CT scans of my chest, abdomen and pelvis. We met with Dr. Banck who was enthusatic in telling us that the scans showed no evidence of disease in the liver or other organs. The liver has fully regenerated to full size. As for the L2 lesion, there was little noted on the report, but Dr. Banck deferred those questions to the radiation oncologist we were to see the following day. We talked about continued follow-up scheduling, and she stated that she would feel comfortable waiting 6 months to see me again. However, she fully understood my need to keep close tabs on any changes at least for the foreseeable future. We will be seeing her again in July or August.
One day after our appointment with Dr. Banck, we met with Dr. Olivier and Dr. Ahmed (resident). These doctors are radiation oncologists. With them, we discussed options for following and/or treating the spinal lesion at L2. When comparing CT imaging from August 2013 and April 2015, the lesion appears unchanged in size, but it is not noted as a tumor, but as sclerotic changes. It is unclear whether this lesion is active or has been effectively killed through the chemo regimen I had. As it has not changed in size and causes no pain, asymptomatic if you will, it is considered stable and reasonable to believe it is dead. We went over options for continued monitoring or undergoing localized radiation treatment to "zap" whatever disease may still linger. We chose to defer treatment again and continue monitoring. We will meet with Dr. Olivier with Dr. Banck this summer and discuss the options again.
Tim, my family and I feel that we are in a very good place right now. It has been nearly two years since we received the diagnosis of metastasis, and we are a far cry from where we thought we would be at this point. My doctors honestly marveled at how well I have done and how well my body has responded to fighting this disease. It once was that I thought about my illness all the time, but that is no longer the case. It's a good feeling.
Sunday, January 11, 2015
Normalcy
The most normal I have felt since November 18th: today. Today I felt like my typical Jenny self. I played with my kiddo, drank some coffee, cleaned, cleaned and cleaned, watched some football, rocked and sang my angel to sleep, and sat down with a glass of wine in a nice (mostly) clean house.
To anyone else, this may not be the perfect day, but since spending the last 8 weeks out of any form of routine, normalcy is wonderful.
During my recovery, I was in significant pain. I was on several alternating medications to control the pain as well as dealing with side effects such as fatigue and bloating. Finally, I have nearly weened off all narcotic pain medication. I can mostly control pains with ibuprofen. I have been experiencing a lot of back aches, but massage and heat usually help.
I slept all the time. Between the medications and the overall just feeling crappiness, I was in bed a lot. I'd have good days where I was up and active, but the following day I would crash. Day to day, I am getting more and more energy, hence my productive day today.
The worst feeling of the whole recovery was my inability to fully care for Arya the way I usually do. It was heart-breaking every time she would put her arms in the air for me to pick her up for Mommy to hold her, and I couldn't. Now, with my lifting restriction gone, she is getting back to being Mommy's girl again, wanting to cuddle even more than before the surgery.
Our family had a very chaotic Christmas; however, we were all together and that is what mattered most of all. Arya had a ton of fun opening gifts and playing with her cousins. She received a lot of great gifts. She is blessed to have so many people in her life. This child is very loved.
January 6th was our follow-up appointment day at Mayo clinic. I had blood work and a CT scan in the morning and appointments with the surgical physician's assistant and oncology physician's assistant.
The surgical PA reviewed my blood work results first. My liver function is fully back to normal following the resection. The CT revealed nearly full regrowth of the liver at this time with no evidence of disease within the tissue. The spinal lesions are still present; however, they are stable. Meaning, they have not changed in size since August of 2013. In Jenny style, I did ask her whether or not I was able to drink again. She said yes, but she did caution me as all doctor's caution their patients in regard to alcohol use. She cleared me for lifting and full activity as well as discharged me from their surgical service.
We spoke with the oncology PA at length regarding the test results as well as the next steps. As of right now, there is no "known" disease in my body. The spinal lesions are a concern, but since they have not changed in nearly a year and a half, the physicians are not convinced that they are a severe threat. We decided collectively as a group to meet with a radiation oncologist at our next appointment. We may proceed with radiating at that time. We also spoke with her about possible preventative options, but at this point there isn't enough research supporting what was proposed with Dr. Banck.
The news we received was better than we could have ever imagined. I remember the day we were told that this outcome was out of our realm of possibility. I remember when all we all had to hold onto was hope, but with excellent care, a positive attitude, the support of others and the power of prayer, I can finally see a light at the end of a very long tunnel.
Thank you all for your love and support. I am going to hopefully have another "normal" day tomorrow. I hope you all do to.
Love Jenny
Subscribe to:
Posts (Atom)