chemo

It’s Okay To Not Be Okay.

Sometimes it’s okay to not be okay. I’ve had a rough time lately. I’ve had a lot of pain, and a cold. It’s sometimes hard to tell where one ends and the other begins. I won’t go into it, but it’s sucks. Not only do the symptoms suck, but the emotional baggage that goes along with it does too.

I feel like I’m wasting my life because I hurt so bad. I used to push myself harder, but it seemed to make it worse. I need to get out of this cycle and live again. I’ve been sad a lot lately. This has become a lonely life. I have amazing friends and family. I just don’t feel well enough to get out. I want to. I make plans. I just hurt so bad I want to die (not literally). I miss have having something to do (work, cheer). I need to find something to do.

I am trying to wean down on my pain meds. I’m doing pretty good at it.

I know this post is pretty sad and depressing. I honestly needed to just vent. I’m just tired of being sick and tired. I want to be the old me again, or better yet a new and improved me. I did buy a day planner. I used one when I worked and it really helped me to reach my goals. My phone is easy to just ignore. So I’ll see if this day planner will help me to get out of bed, write more, and maybe even eat healthier and exercise?! 🤞🏻

I must overcome this.

Well, I’ll leave you with this quote from Theodore Roosevelt:

“Courage is not having the strength to go on; Its going on when you don’t have the strength”

Hello, yet again…

I seem to have made a habit out of posting “I’m back” blogs, when I’ve obviously not been back. As many of you with chronic illness know, some days are harder than others. I’ve been experiencing a lot of bad days over the past several months. I’ve started to blog several times since my last post, but each time it doesn’t seem to make sense, or I ramble on and on (and on). I have a lot to catch everyone up on.

My health took a dangerous turn. Thankfully, my husbands job (amazing insurance and hotel/air points) allowed me to seek a second opinion with my original doctors in Texas. They saved my life once again. Since then (October), I’ve had three bronchial dilations, and two chemo infusions. I am honestly quite emotional about how it all went down, so I’ll blog about the specifics later. For now, I just wanted to get a post out there. My intention is to blog more, and finish my book. I love writing. It’s a wonderful outlet for me since my diagnosis. I feel like I’ve lost so much of my life to these diseases. I want to push myself to live life to the fullest with every essence of my being, but then the pain becomes my reality. It just sucks. Anyway, I hope to post more often, and way more uplifting blogs. 🤞🏻

Perfect

Yesterday, I was driving to OHSU for what feels like the millionth time for one of my doctor’s appointment. I’ve been dealing with a lot of things lately. I’ve been flaring for such a long time. It’s a daily struggle sometimes to just breathe. I keep trying so hard to keep pushing myself to get well. I’m so hard on myself and I stress myself out because I feel so bad for not being able to live the life I once lived. I’ve tried to let go and adapt to my new lifestyle, but it really is tough. I used to be so fun. I used to be spontaneous. Once, my kids told me we were in a rut when I got home from work on a Thursday night. I gave them fifteen minutes to pack a bag and get in the truck, and we drove for 10 hours straight through to Reno for the weekend (I checked the weather and it was the closest place to us with SUNSHINE that weekend). I used to be able to get on my Harley, and just ride the day away. Oh such freedom. Now, I don’t have my Harley, I lost it along with everything else. I’d love to think I will get one again some time, but in all honesty, with my disease, I won’t be able to ride one on my own again. I don’t have the strength, and my vision, and dizziness will just not allow it. I used to wake up and walk two miles at the track in my hometown each morning before work. Then, my daughter and I would meet my cousins at the gym and work out at night. I used to reward myself with tanning afterwards, but due to meds I can’t even do that (which I know it’s not healthy, but boy does it feel good to be tan and look healthy). In fact, I looked at myself in the mirror yesterday, and was stunned. I’ve gained so much weight with Prednisone, and since my troubles in August, I’ve gained even more. I need to eat healthy, but I’m to exhausted to cook, so we just keep easy to eat foods, which are so bad! My hair is now coming in white. I want to color it, but my arms hurt too bad to do that right now. In fact, just pulling a blanket up onto myself is so painful. Twice this week I was in bed all day, and had to wait for my daughter to get home from school because I was in so much pain it hurt to go downstairs and get food. It’s a horrible feeling. I do have days that I feel like, what is the point of this life now? However, I instantly know that my husband, children, and granddaughter are the reasons I continue to go on. I’m so blessed to have them.

So yesterday, as I was driving (I don’t drive very often at all anymore) to OHSU, all of these thoughts were going through my head, as they do constantly. On the radio, Pink’s song Perfect came on. The lyrics hit me hard.

“You’re so mean when you talk about yourself, you were wrong. Change the voices, in your head. Make them like you instead. So complicated. Look how we all make it. Filled with so much hatred, such a tired game.”

It really resonated with me. Instantly, I wanted to go back to the way things were. I wanted to like myself again. I had a bit of hope. I wanted to go do normal things. I want SO BAD to go do normal things! Then, just like every other person with a chronic illness, I remembered my limitations. I can’t go do those things because my body is riddled with pain and fatigue. I’m nauseous and dizzy all the time. I get winded just walking up the stairs, slowly….sideways because I my hips and knees hurt to much to walk one foot at a time. I get winded just walking into my doctors offices, to the bathroom, or anywhere. Even if I started slowly, and walked a block, and then next week added two blocks, and so on until I was walking those two miles again, it’s not going to happen. Not because I’m not motivated, but because I have such a stupid small airway, and the pain cripples me. I make plans to start new little exercises every week. Most nights I get a burst of hope for a few and I get excited and think YES I will go for that small walk tomorrow. Then I end up waking up to my new reality, and I’m lucky to shower that day. It’s such an evil cycle. I’m not trying to be down, it’s just how it has been. I am going to go see an physical therapist soon. I am always going to keep trying to be the best me I can be. However, I am going to try to not be so hard on myself. I need to like myself again, even if it is as a sick person. I need to celebrate the little achievements and not be so mean to myself. I’d NEVER talk the way I do to myself to a friend or even a stranger!

So here is to celebrating those little things…even if it’s as simple as I put on sweats and moved from the bed to the couch and FINALLY wrote an entry in my blog for the first time since January! Cheers!

PS…I’d really like to thank my family for helping me so much. Especially these past few months. It’s been extra rough. My husband has been so patient and understanding, and helpful. My 13 yr old daughter is amazingly helpful. My mother comes to help me. Also my son has paid for us to have a wonderful lady come and clean the house each week. One of our cheer mom’s has graciously given my daughter a ride to cheer every Monday and Wednesday for months now. We have the best family, friends and cheer family. You are all appreciated! It also meant the world to me that for the Superbowl, our friends had us over. I felt so miserable that day, but Travis got me up and ready, and over to their couch. Thank you ALL for being so understanding and helpful!!! So much love for you all.

 

Just catching up

I’ve had a rough time finding time to blog lately. I apologize! I have just been so busy being busy. When I’m not busy, I’m exhausted. I feel that I should just do a quick update of this past week. Hopefully I can find time to blog about something more interesting this week too!

Last week I was dealing with severe dizziness and brain zaps. I still am this week, although the brain zaps aren’t as bad. On Friday I went in for vestibular testing, which was four hours of hearing type tests. The worst was when they put hot air into my ear and recorded my eyes reacting to the severe dizziness it caused. Then they did this with cold air, on each ear. It was horrible. On Monday I went to the doctor to get the results. He said that my hearing is find. Everything came back normal. This means the dizziness, headaches, and such are not caused by my ears. The next step is an MRI on Thursday, and following up with a Neurologist. In the mean time, I’m dealing with a UTI, which of course has them concerned since I just had an infusion, and it can cause Kidney’s to fail. I am going in tomorrow to make sure it’s just a run of the mill UTI, like I think it is, vs some dramatic issue they think it could be. I know it’s better to be safe than sorry, I just get tired of going to the doctor!

One thing I’d like to celebrate is that I didn’t get whatever it was Kenna had on Tuesday of last week. She was so sick. I was terrified I’d get it on Friday or Saturday and I had made commitments I couldn’t back out on. Luckily, I still haven’t gotten sick! Yep, knocking on wood.

Friday after my appointment, Kenna went to the fair with a friend. Travis and I took the time to drive around Forest Grove and look at the house we put an offer in on.

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Travis, Kenna, & I at the wedding.

Saturday we went to a wedding. It was a beautiful, fun, country wedding. I took the photos for them. It was so much fun! It was hot, but honestly, I was distracted with taking all the pictures, that the head didn’t bug me a bit. I took pictures from noonish until 9pm. I was hurting, but it was totally worth it. I really enjoy taking pictures. I had a few moments that were rough, but mostly because my camera decided to stop focusing, so I had to auto focus each picture! I did fairly well, and took 988 photos! What a fun time!!!!

Sunday we decided to go to the beach and meet our dear friends who were there for a dance competition. It was kind of cold so we didn’t stay long. It was fun though. We ate at Mo’s in Cannon Beach, then sat on the beach for about an hour. We stopped for ice cream on the way home. It was fun and low-key.

Today everything has caught up to me. However, I didn’t have a moment to rest. Well, I did sleep in a bit, but I got ready and Kenna and I ran errands. This blog is super boring I know. I promise it’ll get better. I just needed to get this all out and decompress from my busy week.

Oh, and before I forget, let me update you on my cousin. She is doing much better. She’s had 7 surgery’s this past week. They finally were able to pack and suture her leg. I stopped in and saw her yesterday while I was there to get my hearing test results. I loved getting to see her looking so much better! I’d stopped in on Friday before my testing, and she was in surgery. Thank you all for your continued prayers. Please if you can, go to her gofundme.com site: http://www.gofundme.com/8z6ena2x6e and donate.

Brain Fog

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I’ve attempted to write this at least a dozen times this week. It all comes out jumbled. I have so much to say, and so many topics to touch on.  It’s hard when dealing with brain fog. I lose words. I can’t remember what I’m talking about if sentence. I hate it. I don’t like feeling dumb. I know that people understand, but still it’s very difficult for me. I am doing my best to remember this is just temporary. I need to rest, let the chemo work, and be positive. Why can’t I rest on a beach with a Mai Tai? 

The Day After Chemo

I always forget that the day after chemo always kicks my butt. Yesterday I had an eight hour infusion of Rituxin. It’s not as harsh as some chemos, as it doesn’t take my hair. However, it’s still pumping poison into my body. My immune system is still jeaorodized (on purpose, since mine seems to want to kill me), and I run risks like kidney failure and getting a few different types of cancer.  Yet, with all those risky possible side effects, it’s still better for me to have the chemo to keep the Wegener’s at bay.  This was my third round of chemo infusions.  I hate to really call this a round as it was just one, and possibly two infusions but still it is what it is. 

 The first found was in May/June of 2013. I was living in Odessa Texas, and all our family lived in Oregon. My daughter and grenade daughter flew down to help out, and then my mom came for four weeks after that. Travis was busy working, and my trachea was still recouping from the first dilation. We couldn’t find an infusion center near us that we trusted. Since this is a rare disease, not many doctors know what they are doing. My Otolaryngologist wanted me to get the infusion ASAP so I’d live. The only Rheumatologist that could get me in right away was a jackass. At first we thought Dr Khandawal was brilliant. He spent four hours with me during my first appointment, and was very thorough. However, we came to find that he was a bit full of himself.  He had no idea what Wegener’s was. I begged him to talk to my other doctors, but he wouldn’t. He did call the Mayo clinic to learn a bit about Wegener’s, and when he finally agreed to having me take the infusions, he had no idea how to give them. I am someone who likes to research everything. I Had read up on Wegener’s, rituxan, and other meds that treat it. I joined groups on Facebook with other people that have Wegener’s. I talked to them about what worked, what didn’t, and what to expect. I was blown away when Dr. Khandawals nurse called to schedule my appointment and told me that my infusion would just take twenty minutes. Um, the first infusion takes at least 7-8 hours! If they’d have pumped that into me in 20 minutes, I’d have been dead. I instantly fired him.  I called my Otolaryngologist in Dallas in tears. His nurse was amazing. She got me into see a Rheumatologist a tUniversity of Texas Southwestern that week. He scheduled my infusion, and for the next four weeks, we drove six hours to Dallas each Wednesday, I had a my infusion all day Thursdady, and then we drove back six hours on Friday.  UTSW was great. They had individual rooms for infusions. It was peaceful. We even got a hotel across the street at the Holiday Inn, with medical rates. They were so good to us. 

After my infusions, I didn’t see my Rheumatologist until August. He ran a blood panel and decided to treat me with Imuran, a pill form of chemo.ni stayed on this for the next year. During this year, we moved back to Idaho, and then Oregon. Getting set up with doctors is a nightmare for me. I have all my medical. Records from the past four years I a three ring binder that I take to my appointments. This was so vital before we settled in at oregon Health and Science University. It is so nice to have all my doctors at one big hospital, and they all communicate so  well.  Prior to getting set up with me new team, going to the doctor gave me a horrible anxiety attack. Wegener’s is pretty rare, or more so are rely diagnosed that so many doctors don’t know what it is.  They may have heard of it on House or in medical school, but that is it. Every time I’d have to go to the ER, I’d have to tell them what to do. I’d have to spell out my disease, and sound it out slowly. Gran-you-low-ma-tosis. When I first got to OHSU, I was told that I shouldn’t live further than 30 minutes from their ER because Wegener’s is so serious and deadly that being to far, or going to a small ER can be life or death. 

From March to August of 2014, I was in medical limbo. I didn’t have a doctor in Oregon. This was so scary for me. Luckily my doctors in Texas had given me enough refills, but I was having more breathing issues and needed to be seen. I finally got in with my favorite doctor and she facilitated getting me in with my current team. She is amazing and so helpful. She referred me to my new Rheumatolgist, and Otolaryngologist  and so many others.  My Rheymy decided that the Imuran wasn’t working and so she scheduledmore infusions. In November of 2914, I have four more weeks of infusions. It was nice to be closer to home. It’s a room with six chairs and although it’s notprivate, you meet some neat people. The nurses are great, which is the most important to me.  From now on I will have one or two infusions every six months to keep Wegener’s at bay. I don’t mind it really. I can handle all the poking and prodding, but the emotional aspect can take a toll. 

I freak out a few days before because I start thinking about pumping prison into my body. I know that since I’ve had it before, the chances of a instant bad reaction is not likely. Thank God.  However, I know it can cause lymophomas, and kidney failure.  I’m just not ready to die.  I always have a reaction during the infusion, so they have to stop it, flush it, give me Benadryl in the IV, then restart it slowly and work up to a higher dose.  This last time we decided to take it slow since we knew I’d have a reaction.  It was especially nice this time around because it’s summer, and I didn’t have to rush home to get Kenna. She stayed with ours ear friends from our cheer family for the day (I love our cheer family!) I knew she was fine, so I agreed to not push it.  The reactions consist of sever back and abdominal cramping, heartburn, headache, nausea, and a scratchy throat. The back pain, and a headache last for days.  The back pain is like no other. It feels like someone is hitting my bones with a chisel and  hammer. I wake myself up whimpering in the night with pain. 

So today I had my chemo hangover.  I stayed in bed all day. I didn’t even turn the tv on because it was just to much noise. Since I was pumped full of fluids yesterday, I did have to get up to pee a ton, but other than that, I just laid there.  I’m always reminding myself to not be so hard on myself because I feel guilty laying in bed all day. The day after chemo is one day I really give myself a break.  Today Kenna had cheer, so I did get up, get showered, and got her and another cheerleader to cheer. I’m sitting at the library writing this. It’s cool, and quiet. However, my back is killing me.  I’m going to go get my prescriptions, all nine of them, and pick up something easy for dinner. After all, life must go on.  

Thank you for taking the time to read this. I don’t do it for pity. I want to educate people. It also is nice to get this all off my chest. Like I said before, it’s better than therapy!

Chemo Infusion Day

Today is chemo day. Such fun, okay maybe not. The nurses are great. Although I don’t understand why a nurse that starts IVs all day long, everyday would have to poke me three times? In fact, both nurses have poked everyone multiple times today. Luckily, they are super cool, so it’s no biggy. I just can’t put my head around it! 

It was a busy Fourth of July weekend. We drove to Seaside, Oregon on Friday and Saturday to play on the beach. We had Travis’ son here for the weekend, so we made sure to stay busy. The kids had a blast skim boarding and boogie boarding with Travis. I got so sunburned on my shoulders, knees, and shins! We bought a half tent like enclosure at Costco Friday night, so I hung out in it most of Saturday. The beach was packed with people. It was around 100 degrees in the city, so everyone flocked to the coast. Apparently, so many flocked there that the substation caught on fire and knocked power out from Cannon Beach clear up to Astoria. We weren’t aware of it until we went into town to eat. Every place was closed down or selling what was on hand for cash. It was a madhouse. A quick Shoutout to the Seaside Police Dept for doing all they could to make things pleasant.  We decided to drive back home, go to dinner, and then watch the fireworks in North Plains.  It was perfect. Not to busy, and very community oriented. Plus, we were just minutes from home after the show! On Sunday we took Jakob over the mountain to meet up with his mom.  I hope we get to see him again soon. It’d been since Christmas break since we’ve seen him. I’m hoping that changes, as Travis misses him so very much. We love having him here. 

I like to write my blog Mondays through Fridays, but after such a busy weekend, I was spent. I rested most all of Monday. Then on Tuesday I had a million things to catch up on, yes, a million! Adding in the stress factor of having chemo today made last night extremely tense. I don’t know why I stress out so much? OHSU is a great place. Their doctors and nurses rock.  The chemo I’m on can cause a reaction, and of course, I’m one who gets the reaction every time. It starts with pain in my lower back, and then my throat feels funny. I posted my tracheal pics on twitter and Facebook last night, so any if you that saw that know how small my airway is to begin with. Having a reaction sucks. The only thing to do us give me solumedrol (benedryl via IV) and slow the drip down. This infusion will take me anywhere from 6-8 hours. Again, this sucks. However, to quote my doctors “The benefits outweigh the reaction.”

The infusion room is pretty quiet, aside from the sounds of the IVs pumping. There are a total of six infusion chairs in here. So far, no one I s a talker, which is good. However, the wifi isn’t working, and it’s getting boring rather quickly. I may need to start a :::gulp::: conversation. It it bums me out mostly because I was looking forward to catching up on my shows via Hulu and Netflix. I guess that was not meant to be? 

Last night I laid in bed going over the list in my head of what to bring today. I always feel like I’m moving in when I have an infusion.  I brought water, snacks (they only have crackers and applesauce, so I brought better food: blueberries, blackberries, a banana, a plum, grapes, and some grilled chicken left over from last night). It totally cracks me up that I’ve been watching everything I eat, trying to eat clean as possible, but here I am pumping my body full of poisonous chemo! Oh well, “The benefits outweigh the side effects.” Haha

I don’t know that this blog post will resonate with anyone else, but it’s nice to get all this off my chest.  Blogging…the new therapy. I also like bringing awareness to Wegener’s, since it’s such a rare disease. I’m going to post my tracheal pic at the end, because I just know how you all want to see it. Gross! I just think it pits things in perspective for those who don’t understand that this is a very real, very terrible illness.