Since 2017 is coming to an end, it feels like this year is throwing all its got my way while it still has some time left!
As some of you may know, I recently started my very own Photography business, Kassidy Jo Photography, and boy has it taken off!I offered several free sessions at first to build my portfolio and in doing so, I learned more than I ever expected! So many of you were great sports and joined in while I “played photographer” until I actually felt confident in my photography skills enough to make a business out of it! I’m still learning all the time while enjoying meeting new people and capturing the beauty of family, mountain dwelling, and on special occasions, the first breath of a new soul.
Starting a new business has kept me incredibly busy, along with selling our spec home (Yay!) and finishing up said spec home (Completion date set for February) and moving from our adorable little camper into an even more adorable little home right in downtown Pagosa.I took several trips this Fall, three to Denver (Dr. appointments) two to California (One for my cousin’s wedding, one for fun!) and one trip to Joplin, MO for my baby brother’s wedding (sobs).
I’ve also continued navigating what seems like endless medical issues that just won’t let up. I know it’s been a while since I’ve written on here, so here it goes trying to catch you all up! I’ve had a couple appointments with my neurologist in Denver since September, the last of which ended with me notifying him that we would be transferring my care to a different Neurologist. This decision was not made lightly, and to fully understand it, you will have to get a good look at the whole picture. In June of this year, I started to seek treatment for abdominal pain that had been troubling me since 2016. I had put treating it on hold while we dealt with my brain tumor. The pain continued to become worse and worse so I decided my head was doing alright enough to focus on other things (This was before I started having vision/migraine issues again). Upon my initial examination, an abnormality was found in my uterus, and I underwent a biopsy in July. Tests came back negative for any malignancies, but something wasn’t right. They came to find out I had possible endometriosis and recurring ovarian cysts, they hurt like the dickens and happen a lot more commonly than you would think. I have had troubles with these cysts since I was 15 years old. I was less than happy to be having them more and more. Through many tests and even more appointments in Durango, my Doctor believes I have severe endometriosis. This can be treated with hormones and other medication, but here’s the catch; meningiomas (my brain tumor) are know to thrive and grown wildly on all those lovely hormones that stomp around our female bodies, claiming they own the place. You DO NOT want to combine these two conditions, endometriosis and a meningioma brain tumor, in the same body. I cannot treat the endometriosis without endangering the size of my brain tumor. I cannot treat the endometriosis through surgery, because the only surgery to help is really just a patch job, leaving me with more and more scar tissue each time. The underlying problem is the spreading of endometrial cells which originate from the innermost layer of the uterus (yay kids, science lesson!). We then turned to the more more obvious, but hardly simple idea of a hysterectomy. But my doctor has chills each time we talk about a hysterectomy on a 24 year old. There is also the fact that performing a hysterectomy without following it up with hormone replacement, throws me into immediate menopause which is also clearly not a healthy route to take, and using hormone replacements gets us right back to square one, feeding the brain tumor with hormones. We have been stuck in this vicious cycle for months, trying every alternative we can think of. Trigger-point injections: an average of 25 shots, all over my stomach, every two weeks… for months and months. We came to the conclusion that they weren’t doing jack-squat and discontinued them. We tried to manage my symptoms every way we could think, with no success. In fact, it was only getting worse. That is where my neurologist joins the picture (Or didn’t really join as you will see). The OB/GYN I had been seeing in Durango decided to speak with my Neurologist about using low dose hormones (progesterone) as a treatment. It took her a few weeks to finally get a hold of him, and once she did, he told her it was no big deal, sure, go ahead. So we started them ASAP. That is when all hell broke loose in my head. I didn’t make the connection, but I was just painfully aware that my world record migraine had lasted four full weeks now, and landed me in the ER several times, one of which was Blake and I’s 6th wedding anniversary, where I had to be admitted and under observation, until I barely got out in time to make a flight to California! (Talk about stressful!) This mega migraine lasted well over a month and a half, until I saw my Neurologist in October. When I asked him what we could do about this headache he said, “I’ll start you on a new med.” I waited for more information, but he remained silent, staring at his computer. I then asked, “… Um, what is it?” He distractedly replied, “What’s what?” … “What’s the new medication?” I asked again. “Oh, it’s called Topamax. It will probably help. Why are you only taking 10 mg of this other med? That’s pathetic. It won’t do anything at that low of a dose.” I let him know that he is the one who had me on 10 mg of that medication, and then I let him know that he had me on Topamax from February 2017 to July 2017, when he had me stop use immediately, enduring brutal withdrawals, and admitted me to the hospital because my body was having a horrible reaction to the medication which caused severe pressure and several ruptured blood vessels in my eyes as the result. He then said he didn’t recall that and moved on immediately. He looked at my med list and was trying to wrap up the 5 second long appointment I had driven 6 hours for, when I asked if he had any ideas on how to treat this migraine to which he shrugged his shoulders and said, “Yeah, I dunno.” I started to push a little. “Could it have to do with the progesterone?” He perked up at this. “The what? What are you taking?!” He then looked over my chart while I said again, “Could the progesterone be giving me this headache?” He (nearly shouted) “You’re taking progesterone? Why are you taking that?! Who prescribed it?” I let him know that he okayed it with my Doc in Durango. She spoke to him personally and he gave his ok. He then went on to let me know that he “didn’t recall that ever happening” and “That’s stupid, it’s stupid” then told me to discontinue use immediately and hope it affect my tumor. At this point I felt it deep in my gut, this man was not invested even a little bit in my case. Back when there was a huge brain tumor staring him in the face, this was more interesting. Now when it was a little tumor and relentless headaches he simply was not interested. The decision was easy. I let him know that I would be seeing a new neurologist closer to home. He was almost as shocked as I was hearing that come out of my mouth, but as soon as I said it I felt a release. I felt that I was taking action to stand up for myself and my health. Each doctor I have seen since then has been delighted to hear that I took a stand. I wasn’t rude, I thanked him for all his help through this year and agreed to follow up with phone calls every now and then. I left the hospital feeling, for the first time, not the choking down of tears that usually followed these appointments, but the bubbles of laughter, my mind racing with the realization that I was ultimately in charge of the person who’s hands I would place my well being. Since then I have still been dealing with all the lovely symptoms I’ve mentioned here, but I started a new medication shortly after that last appointment that has *drum roll* WORKED! It’s not perfect, I still have migraines about 7 times a month, but that is a huge improvement from every single day and night! I also sleep like the dead and can tell the overall improvements on my health and my state of mind that resulted from my happy restful nights.
I do struggle with the fact that I was on hormones for two whole months that may or may not have affected the tumor, but in all honesty, what will be, will be. I’m happy with the fact that it brought to light the shortcomings of the care I had been receiving. I will still be seeing my original (awesome) Neurosurgeon, Dr. K., but if all goes well, that won’t be until MAY! With the progesterone being discontinued, we were back to square one in terms of my tum-tum. I also started to develop a swallowing issue over the summer which worsened pretty severely in just a few months. I was referred to a GI specialist and had my first appointment with him last week. He was sad to inform me that due to all of the signs and symptoms they have been monitoring in my stomach, they have to rule out any GI disorders that could be involved before moving forward with more aggressive treatments. This means: the ever lovely colonoscopy (booo!) at the ripe old age of 24! He also decided an endoscopy was necessary to determine weather the swallowing is neurological or not. I get to go in for these procedures the day before we leave for the family trip of a lifetime: 10 days with my whole HUGE family in HAWAII! We have been planning and looking forward to this trip for years and now it’s almost here! And when I say my whole family I mean it, all 40 of us! It sure is a great way to start off 2018! So as usual, I have good mixed with bad, pain mixed with overwhelming comfort, and new ventures around every curve. I know I have no control over this next year, I mean 2017 seems to have had it out for me in particular, but 2018 could always be it’s bigger, badder brother. But it is ok. I’m learning to rest, physically, with a toddler laying in my arms and a warm fire to watch on these crisp winter evenings, mentally, tuning out the never ending “to-do” list in my head and focusing on what is happening now, in this moment, and how to cherish that event, and spiritually, in knowing that God is exactly who he is, exactly who he was, and exactly who he will be. Even if my world continues to turn, change, and evolve into something almost unrecognizable as the year, month, or day before, God is ever present and never changing. His love is steadfast, His will is good and perfect, and His light shines on. Even though 2017 is going out with a bang (Yes, I am currently undergoing not one, but TWO root canals right now and looking at having my wisdom teeth removed) I look forward to this next year of life on earth. Merry Christmas to all you beautiful people, here’s to keeping up with this blog just a bit better, and hopefully including less and less medical garbage and more and more… well, ANYTHING else?! 🙂