Nov 10, 2010

The last ten a (huge) nutshell.

So I have been toying around with the idea of starting a blog ever since my mom was diagnosed with cancer.  I really have no excuse for not doing so...except for the fact that starting a blog is SERIOUSLY stressful. There are so many templates to choose from, and then once you've chosen a template, you have to pick font types and colors and sizes, and then you have to choose a blog NAME, and then a separate URL name, and THEN you have tons of crazy customization options, and just thinking about the pressure of it all automatically sent me into panic mode. I am so mad at myself because I know how many people there are who are really concerned about mom's condition, and are constantly trying to reach us to see how she's doing, find out what the latest news is, etc. My feeble facebook status "updates" are so random and vague that if I were an outsider trying to keep track of what's up, I totally would have sent me some hate mail by now.  Ten months after she was diagnosed, I still feel exactly the same as I did the day word got out to friends and family that she was sick: SO overwhelmed with the pressure to inform, inform, inform, that I'd rather just avoid it altogether instead of even making an attempt to respond to all the phone calls and letters and texts and house visits... I hope I can stick with this blogging thing because we really, really, REALLY appreciate everyone who has showed their love and support to our family over the last year more than they could EV-ER comprehend, and they all deserve to remain up-to-date on their favorite cancer patient! So here I am, with a horribly designed blog, sporting one of the first, basic templates and AUTOMATIC font options...BLEH.... But time is money, and honey I am POOR! Just pray that I get a chance to spruce this thing up a bit at some point. This first post is probably going to be massive, but I think it's kinda necessary to provide a timeline of mom's year so those who follow this blog will have an idea how she got where she is now.  Feel free to skip over this entry if you just want to know what's up with her in the status quo.  But here..we...go...

Disclaimer: Everything I post on here will be written from my point of view. It's going to look like I only care about how I felt at the time all these things occured, but you know, I can't speak for my mom, brothers, her family members, etc. This is only from my perspective.  Everything I write pertaining to the medical aspects of mom's condition is completely accurate, but I do realize that some of my thoughts and opinions throughout this past year were irrational, wrong, even idiotic at times. But I'm going to my best to document things exactly how I remember them...mmkay? kay.

My mom has always been an incredibly healthy, spunky lady.  I know her medical history like the back of my hand (after filling it out on dozens and dozens of doctor's information sheets, social security applications, insurance crap, etc), and it is basically spotless prior to 2010.  In 2008, she did have a nasty fall off a horse. Ughhhh, it's still so annoying to me! It was her first time ever attempting to ride a horse. I didn't believe her when she told me she had been to the ER, because A) I had never known my mom to be sick in any way, shape or form... I can never even remember her having the flu. Some moms get car sick. Not mine! Some have migraines. Nope, not mine.  She's also one of the most cautious people on the planet, so injury wasn't a possiblity as far as I was concerned and B) the thought of my mom WANTING to ride a horse was just so absurd I laughed out loud- hard- at the idea. Welp, I guess moms can be crazy and spontaneous too, and she did mount and ended up falling off this insane, RABID (hopefully you people can identify when I'm joking), crazy horse and fractured several ribs. She experienced some pretty bad nerve pain in her lower limbs over the next year...right up until she got sick actually. But that's seriously IT as far as her health history goes. She was extremely active in her adolescent years, and then with us kids as we were growing up. Completely abstaning from alcohol and tobacco for the majority of her life (aside from a couple crazy teen years cough cough--but she never once tried smoking cigarettes), she avoided dozens of risk factors for developing various diseases. 

Last fall, mom was working two jobs (as she has since my parents got divored in 2007), taking care of my two younger brothers, our house, our dogs, our yard, pretty much...everything, by herself.  She began to feel extra fatigued last Halloween, and couldn't figure out why. If she had pointed it out to anyone, the response would have probably been "duh! Look at your load, woman! Take it easy!" But, being my mom, she just kept on truckin along. My brother Elijah was taking classes at the local college while preparing to serve a full-time mission for The Church of Jesus Christ of Latter Day Saints, and my youngest brother Seth had begun his senior year of high school. I had been living in Lawrence for four years, and came home to visit over holidays and a couple random weekends throughout the year (not very often).  Eli received his mission call to the Sacramento, California mission in November.

The last time I remember feeling "normal" as a family was Thanksgiving 2009. The first week of December, a chain of events led to an unexpected discovery that Seth was suffering from major clinical depression.  Seth's story is completely different from my mom's, and while I don't wish to share all the details of his situation at this time, something that is important to understand is that the realization of his condition deeply affected our family. It was such a shock to all of us, especially my mother. They had always been incredibly close. As Seth began intensive treatment, the rest of us began to worry...... Non-stop. Although Christmas seemed impossible to genuinely celebrate, it was going to be Eli's last holiday home for the next two years, and Seth needed all the "normality" he could get. My mom had been really short of breath the entire week I was home for Christmas, and I felt myself being frustrated with her. Looking back, I feel absolutely awful, but at the time I thought she was having anxiety due to the problems with Seth. I remember trying to nicely point out that she should attempt to "get it together" for my brother's sake. I felt absolutely certain that she just needed a prescription to Xanax or something to calm her nerves.  She spent all of Christmas Day sleeping on the couch, after almost collapsing in Target.  Thank goodness my Grandmother Kay was becoming increasingly suspicioius about my mom's sob (shortness of breath) and fatigue. December 28th, the day of Eli's farewell party, I drove home to help her set up.  Again, it seemed like she was just having some sort of long, drawn-out panic attack. It would make perfect sense because the stress that she was experiencing over Seth's condition was enough to send any mother into a coma. She had spoken in sacrament meeting that morning and had to stop midsentence, of every single sentence, to catch her breath. My grandparents were in the congregation. I'll never forget the argument she had with my Papa that afternoon, trying to blow off his demands that she go to the Emergency Room. I remember her looking at me with tears in her eyes, saying "My dad is so mean!" My Papa is typically extremely soft spoken, the sweetest man you'd ever ever meet, but he was being adament, and slightly scary, about his and Grandma's feeling that she needed medical attention.  She couldn't imagine not being there for Eli's farewell, yet she couldn't get herself up from bed to get ready for people to come over. I joined in on encouraging her to just go with Papa to the ER, because I was convinced all she needed was anti-anxiety meds and she'd be good as new.  I told her I would take charge of Eli's farewell party, even though she would probably be back before it even began.  My grandparents came back to our house hours later, towards the end of the party, to inform me (and all the curious party attendants) that my mom had been admitted to Newton Medical Center and would be staying overnight in the hospital.  I realize that reading this, one may think, "well..duh.  The woman couldn't breathe." I cannot tell you how shocked I was that she was going to have to stay the night.  The doctors initially thought she had pneumonia.  We look back and kind of laugh now, because seriously, we thought pneumonia was the worst possible thing that could happen to our mom.  I remember cleaning up after the party, taking Seth, Ethan, Hayden, and Eli to rent a movie for the night, and going to the hospital to see mom around 10 or 11 p.m. I had to go back to Lawrence the next day, but was certain they were going to let her out that morning anyway. (You're going to quickly realize that through all this, I became the QUEEN of denial). Visiting hours were over at 9 p.m, but I managed to fanagle my way through the automatic doors as a nurse was leaving after her shift (she was looking down at her phone, texting. ha!). My grandma had told me mom's room number so I slipped in there without anyone seeing me.  I sat down next to her bed, and even though she was hooked up to some sort of breathing machine, she was still struggling with every breath.  She couldn't even speak. I was trying to tell her about Eli's party and show her the pictures I took, and she was trying so hard to respond but physically couldn't. A respiratory therapist came in while I was there and started doing some breathing treatments with her. She was inhaling some sort of medication through this long curly tube and immediately had a bad reaction and was sick all night. I totally freaked out, but then reassured myself that she just had pneumonia, would just be pumped with IVs and sent back home.  I was so worried about her, but still even more worried about Seth.  I just wanted my mom to get better so we could focus on him.  I hated having to leave the next morning, but was scheduled all week to work in Lawrence, so I made the drive back.  My mom's sister and parents kept me updated on an hourly basis on what was going on.  It seemed like every time they called, they had worse news, and every piece of news was more shocking than the one before. She was at Newton Medical Center for two days, having all sorts of scans and tests done, and when they finally figured out that it WASNT pneumonia, they sent her to Kansas Medical Center in Andover.

January 2010

CT scans revealed that she had a huge amount of fluid surrounding her heart, which obviously was causing her shortness of breath.  She was rushed into an emergency surgery to drain the fluid through a huge needle.  I heard about all this via phone. As Queen of Denial, I remember thinking "well good! They found what was causing it, got rid of all that fluid, and now she's better." And she immediately DID feel better.  They drained 2 liters of fluid surrounding her heart. Whoever it was that called me said they were going to keep her to run tests on where the fluid came from (because that much fluid doesn't just appear from nowhere), that it was likely she had some sort of heart condition.  Again, I felt relief. A heart condition can be managed, right? It was all going to be fine.

Back in June, my three best friends and I had booked a cruise leaving from Texas on January 3rd.  I began to wonder if I should go. Of course in hindsight, I feel like SUCH an idiot for even thinking about going.  But at the time (again, I don't know if it was denial, or the way everyone as acting to me, or what) I really thought it was only a matter of days before mom would be able to go home. She was breathing normally again, she was up and talking and had color back in her cheeks and seemed just fine to me.  She wouldn't even let me consider not going.  But of course.... she IS a mom. Today, she still insists she's so happy that I went, because it would end up being kind of my last hurrah I'd have with my friends before my world was turned completely upside-down (I know it sounds dramatic...but I mean, it's true). So I drove to Newton from Lawrence, spent a couple days in the hospital with mom, who seemed to be doing much better, and kept being told by staff "you'll get to go home in just a couple days!," and left for Galveston with my friends.  I am seriously so ashamed to admit I went on that cruise, but I can't change what happened, so that's just...that. We were gone for five days. Had a great time. I was grateful for the distraction from the insanity that came with December, and felt 100 percent certain that my mom was home from the hospital by my second or third day of the cruise. I remember waking up one night from a horrible nightmare about my mom and Seth and couldn't figure out why I would have such a bad dream. I couldn't shake this horrible gut feeling and said something to my friends. I told them I really needed to call my mom, and they were trying to help me buy some phone minutes, and then I thought, "no, no, it's fine, it's fine. she's fine." And we were going to be back in Texas the next day anyways, so I knew I could talk to her as soon as we reached the port. The morning we were scheduled to get off the ship, my friends and I woke up, cleaned up our room, packed everything up, and I immediately turned on my cell phone to call my mom. I remember being, once again, completely shocked as someone other than her answered her cell phone.  My uncle told me she was still in the hospital, but was going to be sent home that same day. I kind of began to panic, because I couldn't figure out why she wouldn't have her phone with her, and why on earth she would still be in the hospital, but I told him to immediately have her call me when he was in her room, or once she got home.  It was a brief conversation and I didn't have time to ask a lot of questions, but I began to again have this eerie feeling in my gut.  I began to rationalize in my head, "okay, hospitals can be really slow sometimes. maybe they just took a long time with the release process, maybe they had to do a lot more tests, maybe, maybe maybe..." and then I noticed I had a lot of voicemails, which I was expecting because I hadn't had service for five days. The first and most recent one was from my aunt Wendy, telling me to call her as SOON as I got off the ship, even before calling my mom.  (all this phone stuff was happening in the dining area on the ship. It wasn't our turn to get off yet, but we had cell phone service, so I could make and receive calls/texts. I was eating breakfast by myself because my friends were still packing and I was eager to talk to my mom). I called her and didn't get an answer, so I decided to get off the ship and call her once I had made it through customs. I was getting more and more irritated that my uncle had my mom's cell phone and I hadn't been able to talk to her yet. I tried calling Seth, got no answer.  Eli had left for the MTC while I was on my cruise, so I didn't try calling him.  When I met up with my friends, who were all checking their voicemails and text messages, I noticed Katelynn talking to her mom and looking at me all freaked out. She was saying "what's going on?? what's going on??" At this point I was really confused (as you probably are by this horrible writing), and Wendy called me while Katelynn was talking with her mom.  I answered, Wendy sounded She was trying to be all nonchalant, asked me about my trip, but in a really non-interested way, and asked who was driving back to Kansas, and whether or not we were staying somewhere overnight on the way home. We had been planning to stay in Fort Worth, as we had on the drive down, and she (in a super weird tone of voice) said, "well do you think there's any way that Katelynn can just drive you home straight through tonight?" I had asked her about my mom and she dodged around why she was just then being released from the hospital, but said "well, she's going home now, so..." she never said she was okay, or what the doctors had found out, or anything. Wendy hates inconveniencing people, so the minute she asked me to have Katelynn drive straight through, I knew something was horribly wrong. I asked her why it was so urgent for me to get home, and she said "well, your mom just really wants to see you honey. she missed you while you were gone." Panic, panic, panic. I told her I'd ask Kate and call her back. Katelynn was just confused as I was, because her mom had called her to tell her that Wendy had asked about flights from Galvastan to Wichita for me to get back as soon as possible. The drive is only ten hours. Spending 400 dollars on a flight that wasn't an emergency just did not make sense. We both knew something had to be really really wrong. But Katelynn's mom didn't know what exactly was happening, and Wendy kept dancing around giving me any information. When I called her back to tell her Kate was just going to drive straight through, she said, "okay listen carefully. You need to hurry but be safe. I want you girls to all be really safe while driving. Dont listen to loud music or speed or do anything that would cause an accident. Just get home."  If you haven't been able to figure it out by now, Wendy didn't want to tell me what was going on with my mom because she knew how upset I would be and would then have to sit in a car for ten hours, and Katelynn would probably try to speed to get me home to her, and we would probably get into an accident. Well, I wanted to know whattheheckwasgoingon. We still hadn't gone through customs at this point, were just standing behind everyone in line, with our suitcases, Katelynn and I yelling really loud on the phone, demanding answers, I mean... it was quite the scene.  Once I realized that getting Wendy to be straight with me just wasn't going to happen, I knew I had to go to the source of all this trouble. I dialed Via Christi at St Francis (my mother had been transferred from Kansas Medical Center to St.F while I was gone...but of course Wendy wouldn't tell me why), asked to be connected to my mother's room, and was surprised but pleased when my mom picked up the phone. It was the teeiest, tiniest, weakest-sounding "hello?" I had I ever heard in my life.  From our conversation I only remember her saying the words "cancer," and "terminal."  You know how  in movies, when they show someone getting really bad news, and the background gets all twisty and dark and smoky? And the person looks like they're spinning? And the sound gets all fuzzy? Totally happened to me. In the line for customs. After hanging up, my aunt Mary immediately called me. She had walked into my mom's hospital room and realized Mom was on the phone with me. Apparently, my mom was confused and didn't know she wasn't supposed to tell me the news.  (She was really out of it at the time. She doesn't remember the majority of anything that happened between going to the emergency room in Newton and being released from St.Francis two weeks later. The combo of antibiotics, pain medication, surgery, and being given the diagnosis of cancer is a enough for anyone's brain to block out such a traumatic time frame. I'm grateful she doesn't remember it!) We totally laugh about it now, because we picture everyone formulating this plan to keep me from finding out, and then Mary walking in to hear Mom spilling the beans, hanging up the phone and saying, "What?!" So I was standing there in shock, and told my friends what I had just found out. Their faces reflected exactly how I was feeling inside. Erica immediately yanked one of my suitcases out of my hand, and Aubrey grabbed  the other. I remember thinking, "that's so dumb! I can cry and walk and carry my bags at the same time!" Everyone was starting to stare at us. All four of us were crying at this point, and I was probably covered in hives. We stood in line FOREVER and none of us said a word. My friends kept trying to rub my back and console me but they were each trying to control three suitcases at a time and it wasn't going very well. I would seriously pay to watch a tape of them stumbling around with all those huge bulky bags and me bumping into the side ropes like a pin ball in a pinball machine with snot flowing all over my face.  I'm sure everyone thought we were drunk. By the time we had almost reached customs, we had all composed ourselves a little bit. I remember avoiding eye contact with my friends and looking down to see mascara all over my arms and I kept sniffing like anyone does after a big explosive cry.  (seriously, it was drama central). All of a sudden we heard this obnoxious, loud woman talking to some bystanders about how TERRIBLY SEASICK she was the whole cruise.  She just could NOT leave her cabin because the nausea was just SO OVERWHELMING. She was from Texas which made everything she said ten thousand times more annoying. She was seriously so loud and one of those people you just know complains non-stop about everything, all the time.  The couple she was talking to was being all polite and sympathetic and I kept thinking, "one more comment, lady..." and then I looked at Katelynn who was looking at me in alarm, like she was afraid of what I was going to do to this woman. That girl can read my mind. I was too upset to laugh at the time but it did refrain me from kicking that lady's....sorry grandma. I expected the customs agent to be rude and probey but she actually asked me if I was okay, and, being the awkward person I am, I blurted out, "I just found out my mom has cancer!!!" (I could see Katelynn peeking at us on her tiptoes from the next customs booth over with another look of alarm. hahaha) and burst into even more tears. The customs agent looked like she was going to start crying herself. She said "I am so sorry! I am going to pray for your family right now! I am SO sorry!" and let me through. As my friends were whisking me to the cab back to our hotel, I looked back to see that nice little customs agent watching me with a horrified look on her face. I don't know why, if she had lost someone she loved to cancer before, had it herself, or if she's just one of those really empathetic people. But I'll never forget the look on that womans face. Or her hairdo. We called the number of the cab driver who had dropped us off at the port a week earlier, and given us his businesscard.  He was hilarious and had totally loved us and we had begged him to come on the cruise with us, and we had promised we would call him for our cab ride back. When he picked us up, I think he was expecting us to be just as loud and obnoxious and excited as we were on the way there, and to tell him all the details of our trip, but the four of us just looked like we had witnessed a murder.  No one made so much as a peep, and I think when he cautiously asked, "how was it..?" we all just glared straight ahead.  I'm sure he was so confused. poor guy.  Katelynn made the drive to Wichita in record (but safe) time. Erica and Aubrey let me ride shot gun the entire way home. They are the most selfish people I've ever met when it comes to shotgun, and over the years I've just learned to automatically hop in the back seat because I don't think sitting in the front is worth losing an eyeball. So this was a really big deal...I mean, they let me have it the whole way without complaining once, even though I know their legs had to have been numb for hours. Every time we stopped at a gas station Katelynn would grab me a diet dr.pepper and just hand it to me without saying a word. The first few hours none of us talked and the only sound was the occasional blubbering sob. (not just from friends were all crying too) My grandma called me a little into the drive and gave me a tad bit more information.  I asked her how my brothers were handling everything, and she said "well...that's an interesting story." My grandparents were at the Wichita airport sending Eli off to the MTC when the doctors told my mom she had cancer. Our Bishop happened to be in Utah, so he met Eli at the Salt Lake airport to give him the news. Seth had been admitted to Prairie View's inpatient program two days prior, and he found out via speakerphone in his therapists office.  My poor mother found out such devastating news without a single one of her children with her. We've come to the conclusion that it was supposed to happen that way, because she was able to react exactly how she wanted to (you can only imagine). If even one of us were there with her, she would have been so concerned with what we were thinking, she wouldn't have been able to confront her own emotions. She's the one who came up with this explanation, and I try to believe her because I really can't stand the guilt of not being there otherwise.  The last twenty miles of the drive seemed to take HOURS, but Katelynn finally made it to my grandma's house, where my mom had gone after checking out of the hospital. When I burst through the door, I had to search through a sea of my mom's siblings (who had driven from Arkansas, Iowa, and California once they realized the doctors suspected cancer) and their children to spot my tiny little mama sitting in a chair with Seth's head in her lap (after fighting tooth and nail, Wendy had convinced Prairie View to let him check out and be with my mom the same day she was released), bundled up in several afghans.  She looked absolutely gorgeous. Tired, but gorgeous.  She had lost a looottt of weight in the hospital, which was unsettling, but her face appeared so much younger for some reason.  Her skin was seriously flawless. My aunts noticed it too. I plowed through my cousins and dove for the other half of her lap. We all had a long, hearty cry that didn't stop until the next morning. That day, I was able to sit down with my grandparents, aunts and uncles and soak in all the details of her disease.  The fluid that her cardiologist (Dr.Lipman) had drained back at Kansas Medical Center had instigated a search for cancer. Buildup of such fluid around the heart is known as pericardial effusion. There are several different causes of pericardial effusion, and the reason my mom remained at Kansas Med for so long is because her doctors had to run extensive tests on the fluid to determine where it came from and why.  Once they realized it was most likely cancer related, they sent her to St.Francis to undergo dozens of different tests. CT scans, MRIs, PET scans, bone scans, blood tests, you name it.  Fortunately, the IV team was able to insert a "picc line" (a long, slender, flexible tube entering a peripheral vein in her left upper arm for intravenous access), which made is so she wasn't constantly being poked and prodded anytime they needed to draw blood or insert an IV (every five minutes basically).

Once my mom realized they were looking for cancer, she started telling everyone, "It's alright, it's going to be alright. As long as there's nothing in my brain, I'm okay with it. I just don't want anything in my brain. Otherwise, it'll be alright." The two oncologists who had been running her tests and examining the results entered her room, both with tears in their eyes, and told her the news couldn't be any worse. She had adenocarcinoma, a type of non-small cell lung cancer.  My mom was extremely confused because she had never been a smoker, but dismissed that initial thought to ask, "But there's nothing in my brain?" and the doctors explained that they had in fact found multiple legions in her brain. They told her the cancer originated in one lung, had spread to the other, and then continued to develop in  numerous other areas throughout her body, making it Stage Four.  So she had brain tumors that were technically lung cancer. It all seemed so confusing. Her radiation doctor, Dr.Kelly, was going to be in charge of treating the legions in her brain, and Dr.Mattar, her head oncologist, was going to be in charge of her overall treatment and chemotherapy.  They sat down and made sure to answer all of my mom's questions and gave her a list of options.  If she decided to go forth with treatment, there was a chance they could shrink some of the tumors already present and slow further growth.  Otherwise, she could decline treatment and head home and let the cancer grow wild. Mom said, "well let's get started." Kelly and Mattar made several things very clear: they weren't going to give my mom a "time frame" of life expectancy. Mattar simply said, "I could die on my way home from the hospital in a car wreck. If I thought about that all day long, it would be really hard to focus on my job." They wanted my mom to save her energy for treatment, stay at a desirable weight, and most importantly: focus on her quality of life. They told her to stay away from websites with statistics about lung cancer, because they would only scare her and mess with her mind (of course the first thing I did was go to google. I didn't tell her though).  An important thing to consider was the fact that she was young and healthy prior to, well, getting cancer. They emphasized several times how big of a difference her immaculate medical history could make in the long run. When they told her where all of her tumors were located, they intentionally breezed through it before anyone could write all the spots down and when asked for a list, they said it wasn't important.  Kind of the same deal as not giving a time frame.  If she had a list of the exact location of every single tumor, she would most likely become obsessed, and visualize them, and think they were always twinging or something. At the time of her initial diagnosis, she had 8 brain tumors, 10-12 legions along her vertebrae, several on her hip bones, in her digestive organs, in her left armpit, in her jawbone, up and down her legs, surrounding numerous endocrine glands, in her throat, and obviously, in both lungs. Pretty much everywhere. The plan was to begin with 15 consecutive days of brain radiation to treat the brain tumors.  Dr.Kelly was confident would be able to completely eliminate the legions. The brain tumors amazingly weren't located in areas that would affect my mom's thinking or ability to function in any way (unless of course they were left untreated and continued to grow), and Dr.Mattar told us she would begin chemo the day after her last radiation treatment (most patients are allowed several weeks or even months between radiation and chemo to allow their bodies to recoup from the side effects) in order to get to goin' with the tumors throughout her body, because they were more detrimental to her health at the time.  They had to treat her brain tumors first, because in order to qualify to receive a clinical study drug Dr.Mattar had told her had been extremely successful in eliminating large amounts of cancer it's trial patients, she couldn't have any cancer in the brain whatsoever. Otherwise, she would make an ideal candidate (young, female, non-smoker, etc...) In the hospital, while discussing this plan with Kelly and Mattar, my mom made it her own personal goal to GET INTO THAT CLINICAL TRIAL.

She had been sent home from the hospital with a list of medications, including Coumadin (a blood thinner--cancer patients are extra likely to form blood clots, and my mom had already had several develop in her arms during her stay), Dexamethasone (a steroid to reduce inflammation of her brain during radiation), antidepressants (I think that's just standard when they drop a bomb like this on anybody), and vitamins to aid her immune system.  There was a specific diet she had to follow in order to maintain strength for treatment, as well as a healthy weight.  I don't remember if there was an actual decision-making-meeting between my moms family that determined I would be in charge of my mom's meds, diet, appointments, everything, or if it was just assumed, but...I assume it was assumed. Wendy and my grandparents were eager to do everything they possibly could to help (not to mention the hundreds of offers we received from other family and friends), but if you've ever heard the phrase "only one person can feed a horse" (ok I totally know I've got that wrong), you can kinda see why it was important to have just one person in charge of everything. My friends moved all my stuff from Lawrence to Newton, including my car, so I didn't even have to make a trip back there to get everything to move home. Because my parents are divorced, it was just going to be me, her and Seth.  Keep in mind, since the first December, Seth was in the middle of intense psychological treatment, had several appointments a week, and was taking multiple new medications. I basically became in charge of all his treatment as well, because my mom was obviously unable to do it herself.
This entry is getting incredibly long and she hasn't even begun treatment yet! And I feel like I've been leaving so many details out! Ai yi yi...I'll try to briefly describe things from here on out. I'll probably leave out a lot of information so if you have any questions just ask me.... My eyes are getting droopy, I need to finish this up!
Mom had radiation therapy at the Via Christ West Regional Medical Center from January 11-29. Treatment was always at 9 a.m., would last about 15 minutes, and then she'd go to other appointments (she had lab 3 times a week) or home to rest. While she didn't suffer from any side affects of the radiation besides fatigue and hair loss, she was noticing immediate changes in her body due to the steroid, dexamethasone (also known as decadron). Her appetite nothing I had ever seen before. The woman was constantly, constantly hungry.  We had been warned that she would experience intense hunger but it was still just fascinating. She would eat a gigantic breakfast in the morning before radiation, and as we were leaving treatment, she'd make me go to a drive thru and wait until they opened for lunch at like 10:30! Half an hour after lunch, she would be asking for a milkshake. If she saw any kind of food on commercial, she would instantly have a craving for whatever she'd seen and wouldn't drop it until I got it for her. I learned to be careful not to mention food...or anything food-related if I didn't have access to whatever it was I was talking about, because it would always instigate a craving! Example... ME: "The lobster in The Little Mermaid was soo annoying." MOM: "oh no...." ME: "What?" MOM: "I've never wanted lobster so badly in my life." And then she would harass me until I somehow brought her lobster. Haha, she's going to kill me for putting all this on here, but it was just a side affect of the steroid. It wasn't her fault, and she was just as confused about it as I was! She said the cravings were way stronger than any she had experienced during pregnancy. And really, we all saw it as a good thing--the doctors had made it clear she needed to keep her weight up.

She began chemo on January 27th. She was supposed to hold off on chemo until the day after her last radiation treatment, but Dr.Mattar rearranged it to begin as soon as she could get an appointment. Usually when people have radiation, they get several weeks or even months of a break (to let their bodies recoup) before starting up with chemo.  We were already worried about how she'd handle doing radiation and chemo so closely together, so the idea of her doing them at the same time made us feel even more weary.  We trusted her doctors though, and knew they would never throw something at her she couldn't handle, so we went forward with it.  Her chemo appointments were scheduled three weeks apart from each other, and lasted about 3-4 hours every session.  They administered the chemo drugs through her picc line, along with strong doses of anti-nausea medication to reduce the sickness that typically follows treatment.  She was receiving Zometa (a bone strenthening drug- Harry Potter fans, think of skelegro in HP and the C o S! ), Altima, and Carboplatin, a typical type of chemotherapy for Stage IV patients.  She desperately wanted to get in on the clinical study Dr.Mattar had originally told her about, but after her last radiation treatment was told she'd have to wait six weeks before they would know if her brain tumors had disappeared or not. She began going to lab only once a week (when she goes to "lab" appointments, they draw blood to check her white and red blood cell counts, potassium and calcium levels, etc), and would have her picc line dressing changed at the Cancer Center in Newton (also where she was doing chemo). We developed a somewhat organized schedule. Since I was the only one who could drive (my brother's therapist highly recommended we not let him drive for several reasons) I felt like I spent sooo much time in the car: running Mom and Seth to their various appointments, filling and picking up prescriptions several days a week, getting Seth to and from school, etc. January 2010 literally felt like the longest month of my life. I can't believe it was only one month, because so many things happened. Seth was admitted to Prairie View's inpatient program for 7 days the last week of January, so after I'd spend most of the day with mom (who at this point, had no strength in her legs and needed assistance with all of her daily activities), I'd head over to Prairie View for visiting hours from 4-10 p.m. to spend time with Seth. It was so crazy. It seemed like people were constantly dropping by (of course trying to be helpful) but that would stress my mom out beacuse she wasn't ready for visitors and I feel like I ended up being snappy to several individuals who didn't really deserve it. If they're reading this: I'm sorry!! Seth was released from PV the 30th of January, and that same day my mom had a blood transfusion because she was feeling extra weak and dizzy due to Calcium deficiency.  Seth had been nominated for Winter Sports king at school, and the coronation ceremony was that night (everyone as his school knew about my mom's illness, but nothing of his, so when he was absent all week they assumed he was with her or something) during the varsity boy's basketball game.  Mom really, really wanted to attend coronation. So, if you can follow, Seth was released from PV and mom had a transfusion the same day of coronation, and they both still wanted to attend.  I remember telling both of them that THEY DIDNT HAVE TO GO, but they both insisted. Stubborn, those two.  I remember watching Seth walk across the gym during the ceremony and looking over at mom all frail in her wheelchair on the front row and thinking to myself that I had to be in the middle of some bizarre dream.

February 2010

Mom was still handling treatment really well, having only a few bouts of nausea here and there, but feeling okay for the most part.  Her side effects came mostly from the dexamethasone. Not only did the steroid cause severe weakness in her legs, but she began to develop "moonface," where one's face gets puffy and swollen and won't go down.  Her upper body began to swell as well, and Dr.Kelly told her it was common in patients taking decadron.  She asked when she'd be able to go off the steroid, and they decided to wing her off slowly. If you suddenly stop taking decadron all at once, you experience the "boom effect," and get a massive migrane, shooting leg and arm pains, and severe nausea that won't go away. So we started the process of winging her off.  Seth had been out of PV for a week, when my mom's close friend Karen (and my bff Kimberly's mom) had brought some soup to our house.  Her husband also happens to be my dentist, and I mentioned that I had been having a little toothache and I suspected my wisdom teeth were coming in.  She said, "why don't you come down to the office tomorrow and Jon will take a look?" I was hesitant because I'd have to drive to McPherson, 30 miles away, and I didn't really have time for a dental appointment, but she insisted I could just pop in while Seth was at school and mom was resting, that it would be no big deal. Jon was just going to check it out. The next day, I was driving home from Mac with my cheeks stuffed with gauze and a fruit smoothie Karen had blended up for me. Jon had looked in my mouth (Karen peeking over his shoulder), said "yep, we'll just pluck these guys out" and less than an hour later I was wisdom-tooth free. They removed all four teeth the same day he was supposed to "just take a look". I should have known . It was totally painless and I didn't need to be put under or anything, so it worked out nicely and I was able to swoop Seth from school that same day. I should have made him walk because he laughed and pointed at me for the next three days. I took mom to chemo the day after my teeth were yanked, and one of her nurses started calling me "Squeeks," because I looked like a big fat chipmunk. 9 months later, she still calls me that. Rude! I wound up with dry sockets and was super doped out because of the pain meds and was trying really hard not to complain, but it seriously was so painful and then the lortabs made me nauseous and the night I was feeling the absolute worst, mom and Seth were CRACKING me up. I had been so bossy with their medications and feeding them and everything else, they thought it was their turn to "take care" of me. They were doing imitations of me all night and I loved every second of it. 

Seth died February 14. As anyone who would read this blog already knows, he committed suicide at only 18 years old. Like I've said, his story is completely different than my mom's, and I do plan on sharing it with people someday, because I feel like he's been misunderstood by so many who had no idea what was going on with him. Very few people do. It really, really upsets my mom and I to think of anyone misjudging him. Luckily, there are tons of people who did know who he was, what kind of person he was, and that he would never intentionally do anything to hurt those he loved. The important thing everyone should know for now is he had been silently suffering from major clinical depression for a long, long time, and we had only found out in December.  His suicide had nothing to do with my mom's cancer. That's the number one question people have asked me since he died, so I really want to clarify: It had nothing to do with her getting sick. I really will provide an extensive explanation of what was going on with Seth, just not right now. My mom had been scheduled to have chemo the week following his funeral, and she insisted on continuing treatment as planned. She felt like she had that much more of a reason to fight her disease, because she couldn't stand the thought of Eli and I losing a sibling and a parent in the same year. Eli came home for three days for the visitation and funeral. I can't tell you how sad it makes me to know that people also are criticizing him, including some of our family members and his close friends. Only two people have had the guts to say to my face "What is wrong with Eli, that he won't come home and help you? Who leaves their mother and sister like that?" and I literally thought I was going to explode with anger. (I didn't. But I did break out in red blotches and was violently shaking like I do whenever I'm really upset. If you have siblings, you should be able to relate how defensive I am of both my brothers). So I'd also like to clarify this: Eli isn't being forced by our church to stay on his mission. So many people think that! He could leave anytime he wanted, he would just be released as an Elder. None of us-- not my mom, not me, not Eli, have even considered that for one minute. Do we wish the timing was different? Do we wish he was at home with us? Do we realize that Seth's funeral could be the last time he sees my mom in this life? yes, yes, and yes. But we know that this is part of Heavenly Father's plan. He's doing the Lord's work and nothing, absolutely nothing, is more important than that. We have been so blessed because he's remained on his mission. I understand that it's a struggle for some to imagine putting their faith before everything else in their life, and that's okay. But Eli is where we want him to be, where we believe the Lord wants him to be, and that's why I think it's just absurd that people get so worked up about it. If he was here, we would be unhappy, sooo..why would anyone want that for us? We also know that, because our family has been sealed together for time and all eternity, we will all be together again. Our faith has brought us so much comfort through everything that's happened this year. If we didn't have it...I know we'd be in extremely bad shape. Anywho. So Eli went back to Sacramento, and mom's siblings (who had again flown down for the funeral) stayed in town the rest of the week.  We were still in total denial about Seth's death, so we were able to laugh and enjoy spending time with family.  We were all seeing Avatar in 3D at the 21st street Warren, three days after Seth's funeral, when my mom leaned over and whispered to me that she wanted to leave. I assumed she was upset and immediately helped her out of her seat, told everyone we were going home, and would call them the next day. When we got to our house, I was helping her into her pajamas when we both noticed her legs were extremely swollen. Against her will (she was upset and exhausted) I took her to the ER, and they transferred her to St. Francis. She had developed several large blood clots in both legs that needed to be dissolved over the next several days.  If you don't know, blood clots are SCARY. If they travel to your heart or lung or brain, they can kill you. She was released after the clots had dissolved a week later, and she was written an on-going prescription to Lovenox, a blood thinner that would hopefully work better than what she was on previously. It was in the form of a shot, and I had to give it to her in the stomach every morning. Mom was terrified at the idea of her clumsy daughter giving a shot to anyone, let alone her. She still squeals really loud EVERY SINGLE DAY right before I give her the shot. It doesn't hurt at all, she just does it out of habit now, and it's so hard for me not to laugh. Okay, I do laugh.

March 2010

March was hard. The house slowly emptied out as our family members trickled back to their own homes, and the reality that Seth was gone started to sink in. Neither one of us could sleep at night.  Mom had chemo, another blood transfusion, and was hospitalized again for blood clots. They decided to surgically insert a greenfield filter, which is bascially a teeny tiny little screen that keeps blood clots down in the legs. They had discussed putting one in during her hospitalization in February, but decided against it because she wasn't the best candidate for surgery. Even with the high doses of Lovenox we were giving her every day, she was still forming all these nasty clood clots, so they really had no choice.  She was released from the hospital a week later.

April 2010

Six weeks had passed since the end of her radiation therapy, and it was time to check out her brain to see whether or not the tumors had disappeared. We were really anxious to hear the results, because we had been hoping and praying she would qualify for that clincial trial.  She had a CT scan to look at the brain, PET scan to look at the body organs, an MRI to detect growth and movement, and a bone scan to look at her bones. A week later, we sat in Dr.Kelly's office to receive the news: The brain tumors were still there, ten total. He showed us a picture (the only picture we have ever seen of any of her scans--Mattar won't let us look) of her bone scan, and she looked like a dalmation. There were tumors everywhere. Kelly told us that further radiation to the brain would cause memory and cognitive damage, so the only option would be CyberKnife.  CyberKnife is basically condensed radiation (picture a laser beam of radiation) that specifically targets individual tumors, without affecting the rest of the brain area. Cool, huh? We were basically planning on her beginning CyberKnife treatments that week but we had to meet with Dr.Mattar before anything could move forward.  That Friday, Mattar explained to us that by reading all the scan results, he realized the chemo hadn't been working, and the tumors in her organs and lymphnodes and...everywhere...had spread faster than they imagined possible. The man who had refused to give my mom a timeframe told her she probably had 6 to 9 months left.  He decided to switch to a different chemo drug and see if that might work. She wouldn't be able to undergo CyberKnife treatment, because the cancer throughout her body was most detrimental to her health.  This really felt like the worst timing mom could get such terrible feedback, because she was an emotional wreck over Seth. Since his death, she's said over and over again, "I can handle the cancer. I can handle dying. That is nothing, nothing compared to losing a child." She wasn't even thinking about her sickness because her thoughts were so consumed with my brother.  It was very hard to watch her endure. 

May 2010

May was probably the hardest month on my mom, even though it was the smoothest health-wise.  She had a couple chemo treatments, was regaining strength in her legs as they winged her off the steroids, and had avoided blood clots and the hospital for a whole two months.  But she was just so deep in the greiving process. She had lost her appetite completely, didn't want to see or talk to anyone (including her parents and siblings) besides me, wouldn't go anywhere besides lab and chemo, and spent the rest of her time in bed.  Everyone knew she had every right to feel that way, but it was just horrible, for all of us, to feel so helpless and unable to take the pain away from her.  Her brother and his wife, (Dave and Joni) wanted to do something to lift her spirits, so they rented us a beautiful cabin on the lake in their town, Bella Vista, AK, for a whole week. Just for my mom and I. They insisted on paying for our gas, stocking the place with food, and told us our only job was to...enjoy.  It was so amazing for my mom to get out of our house, away from the doctors, to just relax and spend time with her brother. She had so much fun, and once we returned home to Kansas, her mood began to improve more and more. Don't know if I've mentioned this, but....we have the best family EVER

June 2010

Mom was doing much, much better in June. She was admitted to the hospital for a sinus infection (her immune system is so weak, that any type of infection is really dangerous), but was relased a few days after being pumped with an antibiotic. I was sooo behind in school, hadn't been enrolled for two semesters, so took a couple summer classes to try and catch up. I had also decided it was time to start working. I mean, who mooches off their mother's social security benefits? Mom's schedule had become very routine: Lab and picc care on Wednesday, chemo every third Wednesday, and check up with Dr.Mattar (always on a Friday) every six weeks. I got a job at the Sports Grill and Bar in the outlet mall, and immediately loved it. All the regulars are awesome, and I adore every single person I work with (even Jeremy!) Trish is the best boss ever.  They totally understand mom's situation, and that if I ever have to leave for an emergency, it's all good.

August 2010

Mom had regained total strength in her legs, and was able to walk (with an arm to hold onto of course) around more than she ever had since her diagnosis. She had still experienced very few side effects from chemo, but it was time to have those routine scans done again to see if the change of drugs had made any difference. We soooo were nervous because of the last test results we received in April.  I always feel like ripping Dr.Mattar's clipboard out of his hand and just reading it myself because he always has to flip, flippity flip flip through the chart for a good 30 seconds before he says anything. It's like torture! We were so relieved to hear that there had been no new growth since April. Seriously, you would have thought it was New Years Eve. We were soooooooo excited. Granted, everything that had already formed was still there, but at least it wasn't creeping along. No news is good news, right?

September 2010

Mom seemed better than ever. She could walk completely own her own.  I felt like she was Miss Popular because while I was super busy with school and work and her appointmetns, she kept having all these things to do, places to go, and people to see. I was very jealous. She kept strutting around in her bright colored scarves, off to the movies, off to dinner, over to so-and-so's. It was so unfair. But of course we were thrilled she was doing so well. She had several chemo treatments, which my aunt and grandma took turns picking her up from because I have class on Wednesdays.  She's also very braggy about all her "chemo buddies" and their inside jokes. Rude!

October 2010

We began to notice that mom was having a lot of shortness of breath, especially when she was laughing or walking.  It wasn't too bad at first, but we pointed it out to Dr.Mattar and he scheduled an echo on a Tuesday to see if  fluid (the same kind she had back in December) was building up around her heart again.  We waited a few days to hear the results, and it seemed like her sob was getting progressively. That Saturday night, after I got off work, I was in my room talking to mom around midnight, and she couldn't even finish a sentence, her sob was so bad. She sounded exactly like she had back in December. I wasn't about to wait around until Monday morning to hear back from the doctor, so I forced her to go to the ER. She was admitted to St.Francis, where they ran some scans and realized fluid was building up in her lung instead of around her heart this time.  They immediately performed a draining procedure, extracting almost 2 liters from her right lung.  Mom had to be sitting upright for the surgery, so they used a local anesthetic, but she felt an intense pain in her left shoulder. She had experienced some nerve damage and was feeling the referred pain from her lung...kinda weird I know. It's similar to when someone has a heart attack, they feel it in their arm.  Or even though your appendix is on your right side, some people feel the ache on their left.  The scan of her lung also showed a couple small blood clots that had snuck through the greenfield filter (that's 99% effective. my mom just KNEW, back in march, that she would be the among the 1%) into her lung, so they increased her dosage of Lovanox. She's now getting two shots a day, one in the morning, and one at night.  She was released from the hospital just in time to attend chemo the next day, and felt LOADS better since she could breathe easy again.

November 2010

Since the return of her most recent hospital visit, mom was experiencing more nausea than she ever has had from what we assumed was chemo.  We know that side effects worsen with every chemo treatment, but since she's had virtually no problems aside from fatigue, it seemed really strange that she would be vomitting so much and so forceful. She also began to sound short of breath again only a couple weeks after having the last drainage procedure done. She told her oncology nurse about the frequency of her vomiting, her diminished appetite, her increasing weakness, and two days later (this past Friday), we received a call to come into Dr.Mattar's office right away. I couldn't figure out what could possibly be so urgent, because Dr.Mattar is only in Newton once a week and has tons and tons of patients to see. Even when we have a scheduled appointment, the wait is usually at least an hour because they're just so busy. I knew something was seriously wrong when we showed up and they immediately said "ohhhh there they are! Come on back! come on!!" Dr.Mattar is normally friendly and happy when he sits down with us, and his nurse is the peppiest woman alive, but they were both acting the definition of grave. Just the looks on their faces made me start crying. Dr.Mattar told us that he had been reviewing the CT scans mom had done in October, and that there had been significant growth in her brain, which was causing her weakness and intense nausea.  He said they would have to hold off on chemo for a while and schedule an appointment with Dr.Kelly as soon as possible to discuss, again, the possibility of doing CyberKnife.  He said that if that wasn't an option, we needed to seriously consider having Hospice take control of her care.  It was really confusing, and we were faced with a lot of "what ifs" until we met with Dr.Kelly on Monday.  Mattar did decide to put my mom on oxygen, probably permenantly, because her levels were so low.  He ordered a scan of her lung to see if fluid was already building back up again. We had an oxygen concentrator, along with several portable tanks, delivered to our house and mom's been super annoyed with it. Last night I looked over, and she had her cannula (the tube that goes into your nose) up on her forehead like she usually does with her glasses. HAHAH.  Monday morning, she had an MRI at the cancer center, then went to her 8:00 appointment with Dr.Kelly. He explained that while her brain tumors had remained dormant for several months, three of them had begun to grow to the point where they were affecting her, and quickly.  He then did a thorough physical exam on her (which involves a lot of prodding and poking. it always freaks me out), asking her lots of questions about where she has been experiencing pain the most. She's had back pain for months and months that we've been managing with pain killers. We knew the pain was caused by the tumors in her vertebrae, but couldn't stop chemo to do CyberKnife on those, so there wasn't much to do besides medicate.  Dr.Kelly decided to begin 10 radiation treatments on the lumbar area of her back and spine to attempt to remove those tumors, and relieve her back pain, in addition to zapping away the three active brain legions via CyberKnife. He also told us that the tumors throughout her body had begun to grow and spread once more, and the tumor in her right lung was so big it was causing constant buildup of fluid. Less than a month after draining two liters of fluid from that lung, another liter and a half has built up.  She began radiation yesterday morning, had CyberKnife after lunch (which was uncomfortable but painless), and will continue radiation for the next nine days.  Tomorrow she is having her lung drained agaaiiiinnn, and they're installing a little tube that will consantly be draining fluid from her lung into a bag outside of her body. I'll get to be the one to change the bag everyday... whoo hoo! We have been staying in Wichita at my grandma's house so she doesn't have to travel as far for radiation every single morning, and since I'm in class every morning, my grandparents and aunt will be taking her to the appointments every day.  Once she's completed the ten radiation treatments, we're going to sit down with both doctors and decide what the next step will be. They both have indicated that it's getting to the point where they may have to stop doing chemo, and meet with Hospice. But! Dr.Mattar told my mom today that there is a possiblity she may respond to a new drug he's been researching.  We're going to look at all her options after Thanksgiving.  I haven't done a very good job of explaining everything. I'm sorry. But right now we are just focusing on keeping mom cozy and happy. We could really use everyone's prayers :).

I realize this blog is SO POORLY written, but I just wanted to get this overview donezo so I can finally start updating on a daily basis so everyone knows how she's doing, the latest news, etc! I'd like to point out a few things before wrapping this up. If you're still even reading. yeesh!

*We are so blessed with so, so many amazing family members and friends. You guys will never know how much it has meant to my mom, Eli, and I to know how many people are constantly praying for us and thinking of us. Thank you for all the meals you've brought, all the cards you've sent, all the little pick-me-ups we've received, for everything....Thank you. We love you.

*Special shout out to my BFFs. You know who you are. I wouldn't be sane without you.

*Mom's cancer "team" has made all the difference in the world. Her nurses and doctors are some of the best people I've ever encountered in my life. They totally "get" us and how we make jokes when we're about to cry or during really scary situations. Their dedication to treating my mother has been outstanding. Thank you guys!

*If you ever send me a facebook message or text, or try to call me and I don't respond, Please dont take it personal! I'm the worlds flakiest responder, and I'm really trying to get better I promise. Sometimes I THINK a response, and then feel like I've already replied when I haven't. I'm sorry!


  1. Hugs, kisses, love and all of that mushy stuff to all of you! You are an amazing group and I love you all & hope to see you soon!!


  2. Thank you for creating and writing this blog Dani. My love, thoughts and prayers are with you and your family. p.s. M'Lisse...I love you

  3. Wow! Thanks so much for taking the time to write that all down for those of us who are interested. Being so far away, I haven't heard hardly any of the details, so this was perfect. You truly are an amazing person Dani! Your mom is one lucky lady to have such a wonderful daughter! Give M'Lisse my love, it has been WAY too long. I think about you guys often. Know that we are sending positive vibes to the Kleins from the Kents in Provo! We love you!

  4. I love the blog kiddo and I will give an AMEN to Dave and Holly!

  5. I appreciate the update on M'Lisse, one of my favorite people. We went to school and church together through High school and I miss her witty comments and fun personality. I'm one of those friends who try to keep up on her condition but am afraid to call since she is so overwelmed. I empathize with her and her cancer because I too have cancer but on a scale of 1-10 mine is a one while M'Lisse is a 12. I pray she is able to get the treatments and will respond well to them so you can continue to enjoy her sweet spirit. Give your mother a hug for me.

  6. Thanks for updating us. We will keep you in our thoughts and prayers.

  7. Thanks Dani. Prayers for strength, comfort, and the Lord's healing hands headed your way.

  8. .//^ ^\\
    ( _)^(_ ) ♥ Stopping by with lots of love and hugs. Thinking of you xoxox ♥

  9. I LOVE THE PIX!!!!!!!!!!!!!!!!!