I realized that as I looked back over the blog that we never got a chance to journal about how/why this blog got started in the first place....so a little info about that:
At the beginning of May I had a dr appt for a follow up with my urology team - to go over things about my kidney stones. My dr really tries hard to keep me away from any radiation and usually orders ultrasounds vs xrays. I had the same radiology tech and he is usually pretty open about what he sees and recommends. I went back to my dr with questions and concerns about the ultrasound not being clear enough to make a plan. Normally I dont even question my dr. If she isnt worried then neither am I. It is usually literally a 3 sec office visit, no kidding. This time was different. Because of the comments from the radiology tech and having the ultrasound really not be clear, I went ahead and talked with my dr about getting an xray just to be sure that we could see how many stones/how big. She wasnt too happy about my request. Her response was "Fine. Go get the xray and hurry right back." I hustled myself to a separate building to get the xray and went right back to the dr office. There wasnt much to chat about, needing the xray to be read by the radiologist, and knowing my dr still stood her ground to not worry about anything and to make a 1yr check up appt. I headed home, knowing I would get a call from the dr eventually if there were concerns. Little did I know there would be. I got a personal phone call from my dr at about 9pm. She called to let me know that she was not happy with something on the xray and that it was being turned over to the oncology and my personal dr offices.
My oncology dr was out on maternity leave, so I met with one her her partners - that did NOT go well. She was not ready for me at all, she didnt know how to read the radiology reports, she didnt have images for me to even see, etc. It was horrible. Because of my insistence, "she" came to the conclusion for me to go in for a PET scan - something that would read bone and muscle and organs. I have never walked out of that office with such a negative experience.
The big girls and I had left for TX to visit Ceana's mission. Just after we touched down, I got the call from the oncology office, with news about the PET scan to confirm what we suspected - that there was cancer - but no other details. Up until that point, we had tried really hard to keep everything from the kids until we knew something for sure. Of course the girls were on the hearing end of my conversation, so I updated them on the little bit that I knew and we tried to set it all aside for the trip.
Literally the day after our return, Preston and I met with my oncology team (SO thankful that my dr is back in the office!) It was a really long appt, but so productive. She was ready for us, she had all the images ready, she talked about all of the options and concerns. We addressed the biggest worries, and many miracles, including that it is the same cancer type. She acted like we were her only patients and that we had all the time in the world. Her new medical assistant (MA) also took tons of time with us to continue to discuss details that would probably come next and how to put things in place. We left feeling overwhelmed and hopeful at the same time.
In between all of the oncology etc, I was also still trying to figure out sleep stuff. All of our previous attempts to us a CPAP machine had failed. My dr wanted to make one last efffort, including another sleep study. I went in apprehensive, but willing to try. Cool thing was that I had a totally different tech, and he had different tricks up his sleeves. It was the first time I had ever actually slept the whole night during a study! Even though we had to change the mask type still (1st try made my nose bleed) we eventually found one that was the right fit and sleep has been SO much better since then! One more thing accomplished and resolved in the middle of everything else going on!
The very next day after the sleep study I was scheduled for an MRI to get a cleaner look at areas of concern on the PET scan. Didnt know they were going to need to do an IV...took 2 techs, including one from IV team FIVE tries to get the line in. Funny and not funny, I specifically told them where to try to get it in up front, they didnt listen/believe me - guess where try #5 finally went it? Yep, exactly where I told them to try first...sigh...The other thing I had forgotten about an MRI is that you have to hold your breath lots of time for the procedure - and for a long time - it was crazy hard. I ruined the first part of the test because I couldnt get a breathing rhythm. I ended up counting in sets of 10 to try to get to a whole minute or more. They got what they needed, and I was SO glad to get that one all done.
The next appt we met with my dr again. We also met with the PA and the MA. We were thrilled to find out that the cancer is not in any of my organs (PET scan showed hot spots) and that it was only in my back pelvic bone. Again, it was a very long, detailed appt. I was so glad that Preston was with me (so thankful he comes to every appt he can) because he had different questions, different perspective, heard what I didnt, etc. We discussed a treatment plan in detail, what would be concerns, what they are hopeful about as far as side effects. There was a lot to take in and try to process.
One really extra good thing in the midst of all the struggle is that at this point I finally got an appt with the nutritionist! We have been trying for months to get in to see him and discuss the diabetic piece that also has shown up, and how to have intention weight loss (vs unintentional from feeling too sick to eat). Again, so thankful for preston being with me to ask questions and to get a better perspective.
Since this point we have tried to make sure that the blog is updated often, for better or worse. Come what may, trying hard to stay positive. I definitely have my off days, days when it seems I can't handle the side effects, days when I want to cry, days that are just downright hard. Trying to find the good, trying to keep my journals updated - one for the oncology office, one for nutritionist (FYI, will be working with the oncology nutritionist from here going forward, more on that soon). There are warring sides - nutritionist with specific plan of do/dont eat, trying to get exercise - and oncology piece of do eat whatever tastes good, dont want weight loss.....sigh...Hoping an upcoming appt will somehow help me blend the 2.
Well, that is the gist of our background story for this round of things. Watch for more to come soon!
No comments:
Post a Comment