Probably TMI

My brain has been on overload trying to write about everything that has happened with medical appts...

Confirmed UTI #4 from lab results. Will be starting a new, long term antibiotic. Preston had concerns about the long term effects of being on it for an extended amount of time. My dr seemed really not concerned about that right now, more concerned about getting things back under control and fighting things now vs worrying about slight side effects that could come later. 

I was actually surprised that she was so calm about things, there have been very ligit concerns, and at my appt, she seemed ready to just take everything in stride and focus on what to do now. She is wanting to help me get on top of things and we will re-evaluate again next month, and then more in detail before my surgery in Jan.

Ultrasound appt was pretty straight forward. Tech was nice enough to chat about things during my appt. He said there were no "red flags", but specifically asked me if I had had any IV's recently - when I clarified what he meant by "recently" - he commented anything in the last 6 months. I think he was a bit taken back when I told him I have had 2 sets of MRI's and CT's all with contrasts/IV's since May. I counted - May and June I had MRI's and PETscan and CT. Just in the last 6 weeks, I have had 3 separate MRI's and PETscan and CT, all with IV contrasts. ALL in the RIGHT arm....As he asked me more questions, the more his questions made sense. No wonder that I am having swelling in my right arm considering all the pokes for IV etc plus labs. Everything since May has been totally crazy that way....

Still waiting for results and call from dr office, hopefully in next couple of days.....

Update - Ultrasound results.....Finally posted with no extra notes or calls from dr office....everything has come back as normal....no concerns about lymph nodes or blood clots. Again, we know what it isnt, but still dont have cause for what it is, or thought of how to help....Will just take it at face value for now....

Also Forgot....

In the middle of everything else I also had an infusion appt. We determined last month that I cannot go without the xcheva injection (bone protector) and my chemo long term...

Today I was able to get the xcheva without any hitches. My calcium and other levels for that were actually ok today....something that went right.

Other fun thing was that I had a nurse from when I was sick before and had forgotten that she is also LDS. We talked about kids' missions and about the wedding next weekend. It was good to have a fun conversation in the midst of the medical stuff.

Something that will be interesting to track is that I have never had the xcheva all on its own without chemo or other injection. Will give us a really clear pict over the next couple of weeks with only that in my system since will not have new chemo script for another 10-14 days....

Stay tuned....

Totally Crazy Day

We thought we had all the medical appts today all in order..... Isn't that always the time when everything goes crazy?

Preston and colton started their day extra early with an orthodontist appt.

Then they met me at my 1st St appt. So very grateful for a ward friend willing to drive my still mostly wobbly self to my appts.

I met with the PA and my Dr today. So here is the run down after 1.5hrs of appt-
*White count too low.
*Not restarting chemo yet
*New script for lower dose (75mg) for chemo - maxed out at lowest dosing, will start as soon as new script arrives in hopefully less than 2 weeks
*Still swelling in hands, arms and legs. Enough concerns after seeing 3 different drs that concern for lymph nodes or possible blood clot in right arm.
*Unplanned ultrasound for right arm at tail end of all other appts.

At end of my oncology appt, Preston took colton to pediatric appt for med check up. Then waited for me to literally play tag team, hand off @ dr office so he could get back to work and I could meet with our pediatrician out of earshot of colton. So thankful for peds team that takes such care of my kiddos, colton esp, and our family as a whole.

Have to say extra monster big thank you to Preston for staying with us through appts vs being at a work event where he was also needed. Another monster thank you to my sweet friend for being patient and giving up most of her day to help get me everywhere planned and unplanned today.

Will make sure to send updates soon about imaging. Thanx for sticking things out with us!

Enough?

Words of comfort. I have really good times when I can do extra things or expend energy when absolutely needed, and then struggle with guilt and sadness when I crash and burn so easily after doing so, missing things like church and dance class and not driving myself and other important events. How do I explain when I have a good window and then turn around and be totally down. I worry every day about all the things I am not doing, about knowing I need to really push through something or to get through an event knowing I will fail completely at something else after that because 

I have overdone what my body will allow right now. Huge life events coming up in the next several weeks.... Totally scared that my best will not be enough because my best is so little most of the time these days..... Hopefully I can listen and live these precious words of a beloved prophet. Always a work in progress, some days easier than others.....

3 Month Check-Up

Yesterday I saw my personal dr. I have a standing appt every 3 months, or more often as needed. Visit mostly went well as we chatted about everything that has happened since I saw her last.

Still some concerns on her end - 

My blood pressure is still too low. Not really a cause or how to change it to back to my normal yet. Will be addressed in my oncology appt this coming week.

My hands and feet are still really swollen. Again, no obvious cause and not sure how to resolve that one either. Another concern to be addressed again this next week.

She ran a couple of labs to see if she could find the cause for either. Of course, my labs came back totally perfect with no concerns. We know what it isnt, but still 2 things that we cant figure out what it is....On a good note for the dr office, 2 new gals are in the office lab and actually got the lab on a first try. My dr was funny when she brought me in and told the gals that I was a "clean slate" for them and that she wasnt going to share any concerns. As we chatted I shared a little bit of my history with them for being a hard stick. We got what we needed so that was really good.

Afternoon and evening were rough with unexpected symptoms. I was feeling pretty sluggish, so tried for a nap. Got up for just a few minutes and almost passed out. Thankfully got back to bed, and ended up staying there for the rest of the afternoon/night. I am off chemo for this week, no new meds, no new changes, it is crazy that my body is freaking out anyway....

Hopefully on Wed will have more answers for a couple of things. LOTS coming up on our plate that I need to be ready for and functioning. It is a bit scary knowing we have unresolved concerns. Hopefully we will find those answers soon.

Thanx to all for your continued prayers and help and support. We know we are getting through all this not fun stuff because you are there. More to come after appts next week.

More Info

Today has been a rough one. Looking forward to bedtime.

I have a few medical updates....

One is that dr and nurse and PA continue to be stumped by side effects and days like today when my blood pressure and heart rate are too low, for no apparent reason. All I can do is continue to monitor myself and keep notes. I was able get the MA to let me know what BP and heart rate danger zones are. Will keep a close eye on things.

Second is that I did hear from my OB today. We discussed a surgery plan in detail. She expressed concerns about doing it sooner vs later, esp with big upcoming events. Pre-op and post-op will have specific preparation and follow up. Jan will allow us to plan details and make sure I have carefully observed follow up. I am happy to have 2 drs who knows me so well to help make the very best plan for me.

Also today when talking with the MA, she mentioned that MRI results were back and that the images are clean and there is no sign of any cancer in my brain. It is a very good thing, and still leaves a puzzle to resolve. We again know what it isn't, but still don't have cause for concerns.

That is all for now. More appts next week to report on. Thanx for sticking with us through all these adventures!

Small Update - Last MRI

Hopefully....

MRI today was a little harder. Could not find a babysitter, so ended up taking the kids along too. Thankfully a wonderful gal in our ward was willing to be my driver and take care of little peeps during my appt.

Woke up not feeling good at all today. MRI was tricky just because I wasn't feeling well. Since it was a brain MRI, the techs had to secure my head in a brace. That was not fun. I was issued a set of ear plugs and then the techs started to talk to me - which kind of made me laugh because I could barely hear them... Not sure why they tried to  talk to me after my ears were double covered vs before, and did the IV mid way, and had me sign papers at the end, after my hand was all wrapped up from mult pokes.... They did everything all backwards...

MRI lasted about an hour. First part was without contrast. Second half with contrast. 1st tech went for a vein on the top of my hand, which collapsed before he could get the contrast in. 2nd tech went for cartoid artery in my wrist.... That freaked me out a bit.
All the while i was totally braced down, with ear plugs in...

They used a 2+ min push into the vein through a butterfly needle. Small vein meant injection had to go in slowly. Thankfully last part of imaging wasn't as long. I am not sure I would have made it longer.

I am SO thankful for my friend who was my driver. I was already not feeling good, and after the MRI was feeling even not better.

I treated everyone to lunch and then came home and crashed for a couple of hours. Still struggling this evening. Looking forward to early bedtime with the kids.

We should have preliminary results tomorrow and then a full report by next week. Will be sure to post an update soon!