Dec Update

Yesterday was a very full day. Started extra early with labs at the cancer center. Usually the lab gal can get me on a first try. My go-to veins decided to not cooperate. 4 tries later she finally got a vein that decided to behave.

I went right from the lab to infusion. Injection went into my stomach lining, not so fun. Something that was fun was that while I was at my appt my chemo nurse from when I was first sick was in the office. She is the manager of the whole infusion office now. It was wonderful to chat with her and catch up.

My oncology appt was a little crazy. Thankfully my PA was there vs the on call dr. We hashed out a plan for my chemo schedule while traveling. Lots of questions that still couldn't be answered concerning surgery in January. PA was a bit flustered. I teased her that my whole goal in life is too make things extra difficult for her. We laughed, but kind of is true that I am the "problem child". Will work on surgery plan at my pre-op appt in January.

My labs came back really good, including the tumor marker. Numbers are all stable for once. Hopefully will stay that way for travel.

The rest of the day was spent running errands to get ready to leave. Heavenly Father sent blessings and energy and strength. I was able to drive myself and complete all the errands and packing mostly by myself. Truly so many miracles and blessings when I need them most!

Hopefully will not have any medical posts until January. Will write more after my pre-op appt then!

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!

More Than We Can Handle?

I had a follow up dr appt today. Here is the latest news -

*Bone MRI's came back totally clean. Again, we know what it isn't, but still don't know what it may be

*Since starting chemo almost 2 weeks ago, I have been experiencing severe, constant headaches, even to the point of full blown migraines. Neither Dr or PA can find any cause, both sure it is not the chemo or the tamoxifen. My labs say that I should be totally fine. Although I am not experiencing previous side effects, I am experiencing pain and current concerns. Again, my PA was totally stumped as I described my most recent migraine and my inability to manage it. She talked with the Dr and they both concur that a brain MRI is the next step. I will be waiting to hear from the MA next week to get that scheduled.

*We again discussed surgery recommends and options. I will be coordinating ovarian surgery through the OB office. This surgery will ideally replace the injection that I had the worst side effects with. Post surgery will also change me over from the tamoxifen to a similar, but different cancer med that would become my long term, post cancer med. We are hoping to get surgery out of way sooner vs later. We will just be waiting to coordinate with specific dr on the OB team.

*Confirmed a 3rd round of UTI today. I am getting good at figuring it out and getting labs to confirm. Cute lab tech says it isn't just me. She sees similar in lots of cancer patients. Well, there is at least one thing I am going with the flow instead of against it :0 I will be back on antibiotics for another 10 days.

*Today I have some extra swelling, esp in my hands. This concern prompted a full check up to make sure it wasn't because of problem areas. Again PA was concerned and stumped. Will just keep an eye on it for now.

Because of today headache and a number of things, we missed dance class again tonight. Probably could have braved it out, but would have constantly been focusing on pain management and not "wearing it on my sleeve" instead of on friends and teaching. I definitely shed some tears today.

Days like today seem so overwhelming, esp knowing that heredity is playing a part in all this. When my PA mentioned the brain MRI, all I could do was think of and cry over my sweet, wonderful aunt who died of breast cancer that created a brain tumor. For that moment the fear was very real.

Then I think about the other part of my day, talking with the sweet receptionist who has been with through things with me from the first time and the sweet sister who was my driver, about living in a day when we can do more about treatment, when there are lots of options, when I am surrounded by staff at every level of my treatment who truly care about me. I think about walking out the doors of the cancer center to sunshine, and consciously saying thank you for all the the gifts I have been given and the people who surround me with love. I think about the note to a friend when he wished to take this all away, and my response about all the miracles and tender mercies and people that heavenly Father has again put in our path in the midst of all the crummy stuff.

Yes, this whole thing, plus current concerns, plus knowing it is going to get harder before it gets easier, is totally 100% crummy. That being said, there are still lessons to learn, still tender mercies to come, still medical staff who love me and my family, there are still zillions of prayers in our behalf, there are still people to meet, there are still lives to be touched - my own and others - there are still thank yous to be said - to heavenly Father and so many others - there are still thanx treats to make (thanx to my awesome son), there are still days to play in the sun and leaves to kick up, there are still so many good things to come. We will keep striving to remember - come what may and love it - elder within did, so can we, one baby step at a time.

MRI Update

Just thought that I would post a quick note about my day.

Unfortunately I lost both my babysitters due to illness. Our kids are sick too. Then a certain child freaked out because I was just going to drive myself. I had to call Preston to intercede...sigh...Ended up piling all the kids in the car to take me down. I got dropped off and they all returned home. 

I arrived extra early knowing that I needed labs. Full oncology panel plus the cancer marker and one other thing that is being tracked. Labs still were not done by the time I was leaving today.

MRI was interesting. Picture yourself with your arms/hands pinned to your side, hot packed on one side and an emergency button in the other. You slide into this tight tube with the top barely above you. The test includes VERY loud beeping and ringing and zapping sounds. 

My saving grace? A set of headphones with music playing, and the fact that while the machine is on it creates a cool wind tunnel. I also kept my eyes shut the entire time. Heavenly Father sent all the right things for me to be in that crazy loud wind tunnel for 2 hours....

The tricky part of the test, of course, was trying to get the IV line in for the contrast. I had made a request up front for a hot pack and IV person. Same IV gal that I had last time responded to their request for help. When she couldnt get me on a first try (and left an instant nasty bruise) the MRI tech verbally expressed his happiness at listening to me that he had called the tech and didnt try himself. IV gal went for exact same spot she hit last week. She still dug and will end up with bruising again and it still stings after all these hours....

Preston ended up rescuing me to bring me home. I called to check on the status of things, but labs werent ready yet. If there are big concerns, I am assuming that we will hear something before friday if there are big concerns. I will have a follow up appt @ dr office on friday.

Just a quick update about chemo too. I am experiencing some nausea and migraines. So far, I am not flat down sick like with the lupron. Hopefully that is a good sign.

More to come on friday

A Very Long Day

Today started at the oncology office. We again discussed ovarian surgical options. My  w still wants to try a couple other things before we head that direction, but she feels that is probably going to end up. We have dropped the Lupron (the estrogen suppressor) and we are going with starting chemo again today along with the tamoxifen. CT results are inconclusive. Verified no new cancer growth in any other places, at least that we can tell for now. The MRI next week will specifically look at my bones from my pelvic area and up my spine. Should have much more detailed picts then. When I left the office we went away with a plan to start chemo and to forgo both injections so we can isolate the chemo and see if there are any excessive side effects. Before I left I also did another whole big set of labs. We called it good, and left with an appt to follow up next week after MRI.

Ceana and I ran some wedding errands and were still down in town an hour later. I got a phone call from the MA who said my labs were not ok and that I would need to get to the infusion office tomorrow - we were still there, so I asked her to check with the infusion office to see if we could come right then. They had an opening within 30 min, so Ceana and I headed back to the cancer center. The MA said that I would need fluids and to go ahead with the bone protector injection. My calcium levels were outside the window they want, on the high side. My understanding from the MA was that my calcium was too high because there was growth of the cancer in my pelvic bone. Talking with the infusion nurses, they explained that my calcium levels in my blood were too high - thus the IV fluids. Maybe a little of both considering I have been off of chemo for more than 4 weeks, and missed the bone protector injection 2x in a row. That seems to make sense, and I guess really determines that the treatment plan we have in place really is making a difference.

The infusion nurses are darling, and I had one of my nurses from when I was sick before. She was great to talk me through everything that was going on and why, plus we talked about everyday things to kind of keep me distracted. We found a new IV site on my arm, so hopefully we can hit that same spot next week for my MRI. They were so attentive too. I went into the infusion floor totally roasting and not cooling down. They brought me a baby fan and ice chips. Both helped tons. We chatted the time away - ended up being 90 min by the time I was done. Also in the midst of this, a dear friend had taken the kids for me, thinking it would just be a few hours, and instead it ended up being the entire day. Don't know what I would have done without her support and her willingness to keep the kids for me for so long. She is such a blessing in my life for tons of reasons.

So, our go forward plan - starting tamoxifen and chemo again today. Bone protector injection today and scheduled again at my appt in a month. I am to increase my fluid intake, but not anything high in calcium, to try to continue to dilute blood calcium levels. MRI is next Tues, along with another whole big set of labs to follow up from today. I will be keeping a very detailed journal to track any side effects that come from chemo over the next month. Preston reminded me to for sure include any good days, or positive things in the journal too. I tracked all the yucky stuff in the last month, but not many positive things. Will work harder at that.

Thanx to everyone who continue to give your help and encouragement and support. We feel your prayers and your love and we know that these things are helping to sustain us through these rough patches. Know that we appreciate you all so much! Next update will be on Tues next week. Will keep you posted....thanx for sticking things out with us still!

Can You Say Pincushion?

Hello again!

Today was finally date for my CT scan. So thankful to a friend who was my chauffeur today. I was not doing OK enough before or after my test to drive. So grateful to those who drive me to my appts.

We arrived early hoping to give the techs enough time to get my IV line in. We ended up needing that extra time and more! It took 3 techs, 6 pokes, and 1 hour to finally get the IV line in and running clean (saline has a odd taste)

For all their work, it literally took 5 minutes for the actual imaging to be completed. I had forgotten how the iodine contrast works, felt like someone put a hot, heavy weight against my throat and on top of my chest. I had to physically and consciously make myself breathe. Probably a really good thing the imaging was only a few minutes, and I can totally get why people throw up. It was not a good sensation.

My tech was really patient as I needed to just sit for a few minutes when I was done. I was shaky and still having a hard time breathing. She was nice as she regaled me with her crazy cat stories. When I was finished she said "Well, my pincushion friend, you are all done!" - Thank goodness!

I finally got the call to get my MRI x 2 scheduled. Dr ordered lots more specific stuff this time. Thankfully they can do both tests back to back. Will make for a long day. Will be thankful to get it out of the way and hopefully know how to move forward.

I was happy to do some good today in the midst of the craziness. Several people have helped us again recently, including on call pediatrician. It felt good to do something to say thanx to them.

OK. That is all for today. I have an appt on Tues. Will report again then.

OCTOBER UPDATE EXTRA NEWS

I got a message from the dr office today which led to a follow up phone call. Apparently my back concerns are more than just a concern. Oncology dr is ordering pelvic and lumbar spine MRI AND special CT imaging that will include using dye contrasts. Will be so lovely to see how many times the poke me to get a line in. Nothing on the schedule yet, waiting on insurance of course, but nurse at the office didnt see any reason why everything wouldnt be approved and able to be scheduled this week.
Hopefully will be able to get all the testing done long before the wedding...sigh...just gotta always be something, and never anything small...

Stay tuned for more info....

October Update

The last 2 weeks have been extra rough. This weekend was really bad, so much that I was so sick we missed all our weekend events.

I had issues with my back that finally warranted heavy pain meds. I got into a hot bath and let the jets just kind of beat on me. It was extra good that Preston was able to be home with us all day on Sat because trying to dry off/clean up, I slipped and fell right back into the tub....sigh....I have spent most of the last few days on pretty heavy pain meds. I am so thankful Preston was home and I was just able to let myself be drugged. He was extra worried enough to send a note off to the dr office to let them know I was not doing so good.

Yesterday I had a couple of "check up" appts - things mostly went well...

I was able to talk with one of my specialists about oncology surgical options. I was much relieved after talking with her. Initial conversations led me to believe surgery would be like C-sec as far as surgery and recovery. I was so thankful to learn that it really would be more simple than that, including maybe a couple days in the hospital and up and around within a week (vs being down 6 weeks). It will be big part of discussion with the oncology team next week.

The other appt was with the oncology nutritionist, and the oncology MA. Found out that the pain med that I used over the weekend is slowly being phased out. It has been linked to high risk of seizures, and esp high risk since I went through that before during treatment. It is being taken away/thrown away. I expressed my concern of that leaving only 2 pain meds on my ok list, even for surgeries. She was adamant that the other one must be taken away. The other big info she shared was a plan to go forward with more specific imaging for my back concerns. I will be scheduled for a dye MRI and a special contrast CT. They are looking for something more than showed up on my images from April. Thankfully one of the nurses is totally on top of We talked about several other things, but unfortunately my brain didnt retain anything except about the pain med. Hopefully I will remember soon. 

Some extra information that I have found out today. The dr office did call to confirm what I suspected was happening over the weekend - UTI - so adding ANOTHER med to my revolving pharmacy...sheesh. Also was given some random family genetic info today. When I went through cancer treatment the 1st time I pretty much crashed and burned and I experienced some severe seizures. Never found a cause for those. After that happened I have had hand tremors for all these years. With starting cancer treatment again, and again experiencing severe side effects, the trembling has increased, esp in my left hand. I have been put on a special med to try to tame the tremors and also my heart rate that seems to want to skyrocket all on its own. Found out today it is not just me on treatment - it is actually a hereditary trait that goes back at least 1, and maybe more generations. Wont my drs be happy to hear that it isnt something that they can fix, but hopefully at least keep tamed. I am told to expect this to get worse as I get older too. Loverly.

I had a nice chat with the nutrition specialist. We discussed trying to take and look at a whole picture, vs only focusing on diet and weight - both of which are a huge struggle. I felt more encouraged and will be happy to "throw away" my scale for awhile. Will just keep trying to make healthy choices and exercising when I feel up to it. I will try to not get discouraged when things arent going so good. It will continue to be a work in progress.

Yesterday I was feeling better enough to go shopping with ceana for wedding clothes for me. After lots of looking, I found a top that I really love and that is going to look great. It doesnt match any of the wedding colors (thanx for a tip from a wedding momma friend) but Ceana & I think that it is going to be great. Though I am super sore, it felt good to be in the sunshine and walking on my own.

I hopefully dont have anymore appts this week. I will post another update next week after big oncology appt. Thanx to all for your love and support as we go through these current trials. 

rory

Unplanned Update

Well, I served up curve balls again today. All my symptoms plus extras threw PA for a loop. There are big concerns from Dr and PA that side effects have been so bad. One side effect that has really had me down may not be a side effect at all, but a concern with my spine/back. PA did a quick exam and when she hit a couple places on my back I about jumped off the table. Not sure what the plan will be though. Talked about estrogen suppressant surgery options. If I do go in to have ovaries and tubes taken out, would be multiple day hospital stay and 6 weeks totally down - cutting through abdomen, uterine area - would be just like having another C Sect. That was not fun the 1st time, would take some very big planning to try to figure out if I was down because of surgery and cancer etc. My heart rate was too high again today too.....sigh...like I said, lots of curve balls.....

So - here is the scoop for next 2 weeks. Still NO chemo, NO tamoxifen. Next appt on 18th will determine if injections are also put on hold again, whether I will start chemo, and big discussion about possible surgery to replace injections. On a good note, labs came back with good #'s, so they are happy about that not being out of control too. Too bad that my #'s dont reflect how I am really doing. Will be glad for one thing that is solid.

I am extra thankful for friends today. A special someone to drive and a special someone to take the kids. Little peeps were happy where they were, and I got some adult talk time. So thankful to those who give so much to help me and our family. The not driving thing has really been a huge struggle for me. I am grateful to those willing to serve our family.

Will post again in a couple of weeks. Thanx for staying tuned....

Small Update

I realized I have posted for awhile. Have good reason though - I have pretty much been out for the count.

This time last week I had a dr appt. I got the lupron injection - the one to suppress all the estrogen. Only got one to try to see if we can track and isolate the side effects.

Dr thought for sure it would settle things down and side effects would be less. She was super wrong. Side effects came on hard and fast. Within 24hrs I knew something was up. Monster side effects happened and worsened every day. I got a few hours to feel OK at dance class, but kind of paid for it too. I spent several days just pretty much down in bed. I have been up with the kids 1-2hrs and down the rest of the time. I have been SO thankful for Caiden being willing to do some cooking and meal prep without a single fuss. Don't know what I would do without him.

I sent some very detailed emails out to the dr office to let them know how things have been going. I got a phone call today from MA. Dr is having me stop my cancer med and not restart chemo this weekend. Nothing to do about the injection, it is just in my system and will be for weeks. I have an appt on Monday to follow up with the PA.

I will also be reporting to her about food changes - reflux and nausea have been extra bad. PA and nutrition specialist put me on a restricted diet - no wheat based carbs as much as possible, no milk or chocolate or tomatoes, or anything considered "acid" producing. Just bland, boring for at least a whole month. Eat 2hrs or more before sleeping. Trying to do my best, it is tricky. Hopefully will see if changes help long term.

Thankful for all the medical staff who are constantly looking out for me, and who stay patient as all get out when I continue to throw stuff at them. Thankful for heavenly father counsel to do what medical staff and drs say and to trust that they are being guided and directed for me. That I can be guided and directed to know how to give input and make decisions best for me. Things will be OK eventually, hopefully I can be patient through the process.

Thanx to all who continue to share your love and support and prayers. We are so blessed because if you!

More to come Monday....

Dr Appt Disaster

Just a note to post an update.

This morning did not go well. The one morning I needed everyone to be up and in the car they all overslept, and colton spent the time trying to get them all in the car screaming at everyone that it wasn't his fault, no one woke him, he didn't eat, he didn't get meds, etc. I was about in hysterics myself knowing I was not taking colton with me in that condition. In the midst of this the doorbell rang and Christy was on the step to be my driver (Ceana had arranged with both of us noticing at very last minute). We stood trying to decide what best plan would be all the while colton continued to scream and dramatically throw himself across the couch. All the while the clock is ticking away, guaranteeing I would miss my first appt.
We ended up taking kels with us, leaving the boys until Christy could get back so Caiden could go to his class and getting down to Corvallis in time for my second appt. She dropped me off, I hugged my thanx, she got to the boys in time so they were not alone and I made it to my next appt.

Part of today appts was my injection. Orders pulled the 2nd one for now. Hopefully by isolating the one injection we will be able to track side effects better. I will be keeping my journal even more detailed than before.

Other appt was with the PA. She is recommending an alkaline diet for the next month to see if I can get my nausea more in check. Have been throw up sick, monster upset stomach since last week when we ate out a couple times. Nausea has been worse. She is hoping that chilling my diet will help with nausea and reflux which is hampering sleep. Hopefully by changing diet etc it will help all the other stuff. Going to do my best, hardest thing will be giving up choc. Good thing is maybe I will be able to lose weight vs keep gaining since starting treatment. Would really love to look nice by the time the wedding arrives.

Will just take one thing at a time. Give myself time to rest (so needed today) and just keep trying. Answers will come, even if it isn't right away. I am getting great care, and so many are willing to help. Those are huge blessings!

Ups & Downs

I have received so many blessings the last couple of days!

I have been given the strength and energy I have needed to attend several very big events and the travel that has gone with them.

As everyone is finding out, we had a surprise event on Thursday night. Boy did I need energy and strength for that? Totally emotion and adrenaline rush that whole night!

Yesterday was our school open house, which was at our host school in mill city - 1hr drive one way. It was 2 hours of full on meet and greet with as many of the kids teachers as we could find, plus past teachers who have grown extra dear to our hearts. All around a wonderful time, great weather and the kids came home with books from the book fair and a new school T-shirt!

We came home with a little window to work on some things and then since I was feeling so great, Preston and I headed off to dance class. I was greeted by the head instructor's wife who hugged me and cried because I was there. It felt amazing to finally be back at class. We learned the new routine in a short amount of time, and learned it so well that we were able to teach already too! LOTS of expended energy, but felt so very good. Preston treated me to a light dinner after class and then I crashed for the night - I was pretty worn out!

Today I slept in and my body profusely protested my attempts to get up. I was able to finally get up late and eat a little bit before we left for the temple. Drive was ok. I was able to talk with one of the temple matrons about my concerns and about what happened last time. She was very helpful. When we first got into the session room, it was very hot and I started to not do ok. I just kept praying for cold - and heavenly father answered. To me, things cooled down so much that I actually felt cold. It was such a miracle. Almost done I started not doing ok and heating up again. I was shaking and my heart was racing. I had 3 people helping me. I just kept praying that I wouldnt pass out. I got through ok, but scared a couple of the matrons in the process. It was so sweet that they offered help, but at the same time I felt awful for causing so much concern. Thankfully I was able to slowly make my way to the car and the cool rain outside. Dinner was a big help too.

I am so thankful for so many tender mercies over the last few days. I know that my strength was not my own. I know lots of angels, visible and not, have been with me to make sure I was ok.

Hoping to make it to at least a bit of church tomorrow. Will see how things go. Thanx to all for your prayers and god wishes. Both mean so much!

Medical Update

My poor Dr and PA.....

Went to office with lots of concerns, esp my blood pressure and heart rate. We talked about concerns and meds and side effects. I continue to be that "nth" percent that has extreme side effects and odd reactions... Sigh...

My appt was more than an hour. Will be taking away one of my injections for a month. Hoping to isolate other injection to track severe side effects.
Will be adding a script reflux med plus OTC reflux med together. Will be reducing a med dosage of med that was just increased. Will be sleeping propped up too.

Dr doesn't want to tweak anything more until we can track these changes over next month. Lots of discussions about"what next" once we have info from these.

Will go ahead with labs and appts next week. Will meet with the oncology dietician, will get estrogen suppression injection, will see oncology PA.

Really do feel bad for my oncology team. There are so many things that I struggle with, that my dr is seeing same concerns that I experienced last time even with completely different drugs, that they don't know what to do with me. I am just not a "stay inside the box" kind of person when it comes to medical etc. Thankful for a team that is so patient and willing to keep trying to figure things out. Thankful for Preston and his willingness to come with me to appts to help. Thankful for Ceana always willing to be my driver. Always blessings in the midst of the yuck. Always.

Small Update

Thought I would throw out a quick post.

I have been extra sick since starting chemo again a week ago. I have had some big weight gain too. I have been in touch with dr office about concerns. Today I got a call from the dr MA to have me come in tomorrow vs next week.

No thoughts or chatting, she just asked me to come in. When I asked her about my infusion appt next week she just mentioned everything will be discussed tomorrow.

Mobile lab guy is coming today so results will be to Dr office for appt tomorrow. My guess is they are going to be off some more.

On a plus note Preston is on a new mission to help me feel better. He has taken me out for a walk in the evenings whether I feel up to it or not. We talk just by ourselves and walk as far as I can. I am so blessed that he cares enough about my health to want to help. It has been special time for us both.

Late afternoon appt tomorrow. Will post again tomorrow night.

A small update

I have been so blessed in the last 2 weeks since my injections to have extra days of "normal" energy for events that were extra important for me to attend.  Heavenly Father does hear and answer prayers.
This last week side effects have caught up with me. Yesterday required another phone call to the oncology office. My blood pressure was too low,  my heart rate continued to climb, both close to danger levels. I am doing everything I can according to the MA. She let me know red flag numbers that would send us to the ER. I am keeping a detailed journal to track things.
Even though I am struggling extra, plan is for me to start chemo today. New script has not arrived, I will start on current dose and hope that other dose reduction script will arrive soon. I am 3 more days off schedule,  widening the gap between injections and chemo. Making the window for more side effects lengthen as well.
School starts this week and I worry how my health will impact the kids schedules and abilities. Teachers we have talked to so far have been informed of my health concerns. That has been the hardest part of our chatting,  esp with all new teachers except one this year. We will just take a day at a time as always.
I will be tracking my #'s and overall health over the weekend with strict instructions to seek medical attention if things do not improve.  Will keep everyone updated as needed.

Labs & More

Had labs drawn again yesterday. It wasn't so good. Normally tech gets me on a first try. Guessing that I am way over tired and dehydrated. It took a bit to finally get the draw and even though no bruise,  definitely sore.

Oncology office response about my labs and go forward plan was up in the air. My dr was supposed to be in office today and instead is already gone for vacation - leaving her notes to be deciphered by her MA and on call dr. There is big snag about tweak to my chemo med. New dose has been recommended,  but insurance pharmacy did not ship it in time. Supposed to be starting today,  and it only got shipped today,  leaving us to possibly wait as long as 14 days for it to arrive.  There was some discrepancy as to starting current med today or waiting another 3 days to see if new script to arrive and setting the schedule off even more. So frustrating. The other concern is that my white count "Nutrafill" is literally. 05 over the very bottom minimum # to even start chemo again. I have had almost a whole week of feeling extra crummy. My  concern is feeling worse crummy if I do start chemo now. Dr office plan for now is to wait until Saturday to see if new script arrives. If not,  will start current dose and change over to new dose once it arrives. Will need to notify dr office when that change happens. Next appt isn't until end of the month. Will see how I do between now and then.

Other labs for PCP were also drawn yesterday - got a call from the new MA. My labs came back stable for once. Go forward plan is to stay on same med schedule until next appt.

Will just continue to lay low for now and rest and work through side effects. Will post again soon.

Inspiration & Medical Update

I realized that because I have been mostly down and popping in and out of dr appts that we havent updated the blog for awhile. Going to backtrack just a bit and then update from my appts yesterday.

Recently there was an awesome post by Pres Uchtdorf about angels:

"The Lord knows you. He knows your heart and is pleased with your sacrifice. He smiles upon you each day. He will uphold you and prepare the way for you. He will send His angels before you. You will feel their presence. And with the help of heaven, your talents will be multiplied.

I promise you that as you lift those around you, the Lord God, the Creator of the universe, will lift you up. If you will only believe and incline your heart to our Beloved Father, He will place within you a peace that surpasses understanding. He will give you joy. May each of you always remember this."

I know God is true, esp in current circumstances, I have felt those angels lifting me. Even so, I REALLY needed this reminder. Things have been extra hard this last round of chemo/injections, and I have been feeling like a great burden to all those around me, esp to preston and the kids. We have continued to strive to serve others around us, even if it has been belated to events. My husband and kids are my angels 24-7, others have also given service, and it is so good to feel so loved. So we strive to be angels to others, to say thanx and to share love and friendship. There are angels that we can see and that we can't, we can be angels to others. Heavenly Father's blessings and tender mercies will lift us and sustain us in all things, esp through these most difficult days. What a precious gift to help us "come what may and love it."

The amazing thing is that this came out just before I truly was in need of angels. When I needed to drive me and the kids to church and teach my class by myself. I know there were angels holding me up because I was still pretty sick. The most recent time that I had seen and unseen angels was when we went to our stake temple night last week. I did ok getting dressed to go, and I didnt get sick in the car. I was ok until we were actually in the session when I became very sick - monster hot flash that consumed me and made me dizzy and hard to breathe. Then I went into uncontrollable shivering. I had Ceana on one side of me and my friend Bev on the other side of me. They helped me so much, and then I just sat through the rest of the session. Totally messed up when it was my turn, thinking was a total struggle. Felt so bad for ceana, she was visibly distressed, and that it happened in front of so many people, I felt embarrassed and ashamed. It was hard to not think about what others were thinking in the midst of all that was happening that I couldnt do anything about. Without Ceana and Bev help, I may have been tons worse (like passing out, I get that close alot of the time). Preston is my eternal angel and he helped me quickly get up to the chapel and tucked ourselves in a back corner where I could rest. (he later took us to dinner that made a huge difference). The cool room and rest really helped tons. Another angel that day came in the form of Sis Pond, who gave a talk just for me. Another angel was a super big momma hug from our stake pres wife, and her sincere inquiry when she overheard me tell Pres that I had not been doing well. I had so desperately wanted to go to the temple, and even though there were not good things that happened, I truly did have angels around me every minute, and heavenly father answered silent prayers and knew of my desire. There was extra scary stuff, but in the end I was able to be there, able to hear words meant for me, was able to be in the midst of so many that I know care about me and our family.

The other note that has come recently is a quote from Elder Maxwell so many years ago. I remember when he came to our stake before he got sick. It was a precious gift to hear him. This is the quote, meant just for me: "

God does not begin by asking our ability, only our availability, and if we prove our dependability, He will increase our capability." - this go around seems I was not asked about my availability....though I guess that with most trials we are not asked, we are entrusted, and we are given tools needed to work through them. Elder Maxwell was a great example of what 2 way trust looks like. Something to hope to also attain.

Pres Monson recently shared this: "The principles of living greatly include the capacity to face trouble with courage, disappointment with cheerfulness, and trial with humility." - Something that we/that I am striving to do every day. Some days are super hard, I feel like I am fussing way too much, and yet I need to communicate how I am feeling and side effects of meds. I know from before how important "thank you" is to all of those who are helping care for me. I know how important it is to look for the joys along the journey even though it is straight uphill and covered with potholes and huge rocks. I have seen that a smile in the midst of adversity truly goes a very long way. I know that a thank you and a hug (when I can) really can touch a heart in ways you will never know. I am working hard to keep an eternal perspective, I am holding tight to His promises. I have seen how sharing a testimony of Heavenly Father's goodness in the midst of trials can bring gladness and peace, to myself and others. All we can do is try to do our best, in each minute, or hour, or day. Our efforts are enough and we will be blessed.

So, there you go. Some inspiring messages that have meant so much to me.

Here is our medical update as of yesterday:

*Round 3 - Injections went well. Sore spots and some mild side effects starting today.

*My nutrafill (white cell + bone marrow count) has dropped from 1400 to 900. Have to have minimum of 1000 to start next chemo cycle. Will have labs done again mid next week. #'s will determine start or delay. Along with that, my dr is dropping my dosage from 125 to 100. Hopefully I will manage things better and have less difficult side effects at the lower dose. Snag is we are, again, waiting for insurance pharmacy to get meds to me in time to start. They show a ship date the day before I should start, with a ship time to up to 14 business days....augh.....thankfully preston is managing all things this go around and working closely with dr office.

*No help yet for violent REM. Sleep med office already doing everything possible. Again offered a different help med, totally forgetting the severe allergic reaction I have with that med. No extra help there. Still waiting to contact the oncology nutritionist about food/sleep interactions. Hoping one med I am already on can be tweaked a bit, that would be our last hope of finding a solution.

*Appts attempting to be pushed out to 1x/month. Labs will most likely be weekly, here at home, and injections and dr appts will hopefully be monthly. Of course, that can be tweaked if I still get very sick.

*Tamoxifen trade to next med still on hold until I can stabilize side effects and get a regular pattern in place. Dr was hoping to start it already, now looks like it will be months out still. I think I have everyone a bit flustered and a lot concerned that I am not in their little "box" of should's and such. Everyone keeps saying "just have not seen this before, this is not typical, etc" - Welcome to my world, hope you continue to enjoy the ride....so hard to not feel discouraged knowing nothing is going according to plan on any level....

OK, I guess that is all for this epistle. Most likely appts will be on a monthly schedule. Labs will be weekly. Will at least keep everyone posted on how my #'s are doing. Thanx tons to all who continue to give us so much encouragement and support, and esp for prayers. These things really do help so much and are very much appreciated! Stay tuned for more to come...

Inspiration & Medical Update

I realized that because I have been mostly down and popping in and out of dr appts that we havent updated the blog for awhile. Going to backtrack just a bit and then update from my appts yesterday.

Recently there was an awesome post by Pres Uchtdorf about angels:

"The Lord knows you. He knows your heart and is pleased with your sacrifice. He smiles upon you each day. He will uphold you and prepare the way for you. He will send His angels before you. You will feel their presence. And with the help of heaven, your talents will be multiplied.

I promise you that as you lift those around you, the Lord God, the Creator of the universe, will lift you up. If you will only believe and incline your heart to our Beloved Father, He will place within you a peace that surpasses understanding. He will give you joy. May each of you always remember this."

I know God is true, esp in current circumstances, I have felt those angels lifting me. Even so, I REALLY needed this reminder. Things have been extra hard this last round of chemo/injections, and I have been feeling like a great burden to all those around me, esp to preston and the kids. We have continued to strive to serve others around us, even if it has been belated to events. My husband and kids are my angels 24-7, others have also given service, and it is so good to feel so loved. So we strive to be angels to others, to say thanx and to share love and friendship. There are angels that we can see and that we can't, we can be angels to others. Heavenly Father's blessings and tender mercies will lift us and sustain us in all things, esp through these most difficult days. What a precious gift to help us "come what may and love it."

The amazing thing is that this came out just before I truly was in need of angels. When I needed to drive me and the kids to church and teach my class by myself. I know there were angels holding me up because I was still pretty sick. The most recent time that I had seen and unseen angels was when we went to our stake temple night last week. I did ok getting dressed to go, and I didnt get sick in the car. I was ok until we were actually in the session when I became very sick - monster hot flash that consumed me and made me dizzy and hard to breathe. Then I went into uncontrollable shivering. I had Ceana on one side of me and my friend Bev on the other side of me. They helped me so much, and then I just sat through the rest of the session. Totally messed up when it was my turn, thinking was a total struggle. Felt so bad for ceana, she was visibly distressed, and that it happened in front of so many people, I felt embarrassed and ashamed. It was hard to not think about what others were thinking in the midst of all that was happening that I couldnt do anything about. Without Ceana and Bev help, I may have been tons worse (like passing out, I get that close alot of the time). Preston is my eternal angel and he helped me quickly get up to the chapel and tucked ourselves in a back corner where I could rest. (he later took us to dinner that made a huge difference). The cool room and rest really helped tons. Another angel that day came in the form of Sis Pond, who gave a talk just for me. Another angel was a super big momma hug from our stake pres wife, and her sincere inquiry when she overheard me tell Pres that I had not been doing well. I had so desperately wanted to go to the temple, and even though there were not good things that happened, I truly did have angels around me every minute, and heavenly father answered silent prayers and knew of my desire. There was extra scary stuff, but in the end I was able to be there, able to hear words meant for me, was able to be in the midst of so many that I know care about me and our family.

The other note that has come recently is a quote from Elder Maxwell so many years ago. I remember when he came to our stake before he got sick. It was a precious gift to hear him. This is the quote, meant just for me: "

God does not begin by asking our ability, only our availability, and if we prove our dependability, He will increase our capability." - this go around seems I was not asked about my availability....though I guess that with most trials we are not asked, we are entrusted, and we are given tools needed to work through them. Elder Maxwell was a great example of what 2 way trust looks like. Something to hope to also attain.

Pres Monson recently shared this: "The principles of living greatly include the capacity to face trouble with courage, disappointment with cheerfulness, and trial with humility." - Something that we/that I am striving to do every day. Some days are super hard, I feel like I am fussing way too much, and yet I need to communicate how I am feeling and side effects of meds. I know from before how important "thank you" is to all of those who are helping care for me. I know how important it is to look for the joys along the journey even though it is straight uphill and covered with potholes and huge rocks. I have seen that a smile in the midst of adversity truly goes a very long way. I know that a thank you and a hug (when I can) really can touch a heart in ways you will never know. I am working hard to keep an eternal perspective, I am holding tight to His promises. I have seen how sharing a testimony of Heavenly Father's goodness in the midst of trials can bring gladness and peace, to myself and others. All we can do is try to do our best, in each minute, or hour, or day. Our efforts are enough and we will be blessed.

So, there you go. Some inspiring messages that have meant so much to me.

Here is our medical update as of yesterday:

*Round 3 - Injections went well. Sore spots and some mild side effects starting today.

*My nutrafill (white cell + bone marrow count) has dropped from 1400 to 900. Have to have minimum of 1000 to start next chemo cycle. Will have labs done again mid next week. #'s will determine start or delay. Along with that, my dr is dropping my dosage from 125 to 100. Hopefully I will manage things better and have less difficult side effects at the lower dose. Snag is we are, again, waiting for insurance pharmacy to get meds to me in time to start. They show a ship date the day before I should start, with a ship time to up to 14 business days....augh.....thankfully preston is managing all things this go around and working closely with dr office.

*No help yet for violent REM. Sleep med office already doing everything possible. Again offered a different help med, totally forgetting the severe allergic reaction I have with that med. No extra help there. Still waiting to contact the oncology nutritionist about food/sleep interactions. Hoping one med I am already on can be tweaked a bit, that would be our last hope of finding a solution.

*Appts attempting to be pushed out to 1x/month. Labs will most likely be weekly, here at home, and injections and dr appts will hopefully be monthly. Of course, that can be tweaked if I still get very sick.

*Tamoxifen trade to next med still on hold until I can stabilize side effects and get a regular pattern in place. Dr was hoping to start it already, now looks like it will be months out still. I think I have everyone a bit flustered and a lot concerned that I am not in their little "box" of should's and such. Everyone keeps saying "just have not seen this before, this is not typical, etc" - Welcome to my world, hope you continue to enjoy the ride....so hard to not feel discouraged knowing nothing is going according to plan on any level....

OK, I guess that is all for this epistle. Most likely appts will be on a monthly schedule. Labs will be weekly. Will at least keep everyone posted on how my #'s are doing. Thanx tons to all who continue to give us so much encouragement and support, and esp for prayers. These things really do help so much and are very much appreciated! Stay tuned for more to come...

Catching Up, Being Down

I am writing from my phone which is laying sideways on my bed, and so am I. This is where I have been most of the day.

Yesterday I was so excited to have an actual high energy day - eating was good,  got in dance exercise and an adventure out to eat with preston, my 3 big kids and preston parents. It was a really good day with so many awesome accomplishments.

Today my body has told me it has had enough. A day and a half of lots of extra activities is my limit apparently.

From past experience I have learned to listen to my body.  If I don't,  I know it will force me to listen and then I know that struggles and side effects will be even worse.  It is a good thing that I have learned this because I have learned to help my body heal,  better and faster, when I do have down days.

I wouldn't trade the good hours and days for anything. I know that I am going to need to figure out how to pace myself on the good days so hopefully the down days won't be so bad.

This time things are so different,  every day and every week it is anyone's guess , there is a pattern emerging,  but even the intensity of that pattern is in constant flux. Even though every day is different, many things stay the same - trying super hard to keep a positive attitude, friends who extend help and kindness, kiddos who are always willing to help with anything big or small,  my sweet husband who is patient, kind, supportive and so loving,  and esp Heavenly Father who continues to shower is with blessings,  tender mercies and miracles.

All of these things,  and so many more,  are my sunshine on these down days that can be so hard. Sunshine comes in many ways. Can't have rainbows without sun and rain. Rain brings nourishment and refreshes, sun brings warmth and healing.  If I can remember these precious truths,  hopefully the down days will just be a moment and the good days will shine brightly to keep me going in the right direction.

A Look Back A Bit....

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!

Labs Update

Things have been kind of crummy still the last few days....totally forgot to post the update about my labs.

They were turned in and ready yesterday. I got a call from the oncology MA to let me know that my #'s had actually tripled in the last week. I guess technically I have had 2 weeks of "rest" and that brought my #'s back up. I am free to attend events and go on outings as I feel up to it.

Yesterday I wasnt doing so hot. Nausea was bad enough to wake me from my attempt at a nap and to force my hand to actually take a zofran tablet (my one go to for this). I was able to use cool air in the car and mostly sitting at the baseball game (preston work family activity) and I was able to take another zofran+cold air blowing for the way home. These things seem so insignificant, but for me they were the only 2 things to keep me from being sick. I am grateful for both (and for a patient, teasing daughter who informed me that she would greatly appreciate if I didnt throw up in the car while she was driving :)

Started chemo last night, so I am back on track for the next 21 days. It will be interesting to see what side effects come with the chemo being separate from the injections. Good to know what comes from each and how to prepare for those.

Currently writing an update about how we got to this point in life again. Realized we never wrote about the whole "how did we find out" thing. Watch for that soon.

Something Cool

I got a phone call from my oncology medical assistant this morning. She called to check on me - boy, did I give her an earful! She also called to say that my dr wanted labs - today! I am scheduled for labs on Friday, but with everything that is going on and my #'s so low, she was not willing to wait until then. She told me of a mobile lab (someone my lab tech at the cancer center told me about a couple weeks ago...interesting) and that the guy who owns the mobile lab would be calling me to schedule.

Fast forward to 430pm. His name is Christian and he is REALLY good at what he does. Once he got my hand settled, he put the needle in and I didnt even feel it - and - I have no bruise! We just chatted while he did the draw, needed quite a bit for all the labs that have been ordered by 2 doctors. He said that Dr McGregor has a standing order for weekly labs. He can come to me even before my appts so the lab results are there to talk about vs having to wait for them to be processed and hope they are done before my appt (which is what we have been doing up until now). I am really excited about this option. Will keep you updated on how things go. 

If anyone has a need, or know someone with a need - Valdez Mobile Flobotomy. 

Tackled & Smashed

Last several days have had struggles,  but had some normal activity level.

I wonder if I do too much when I feel ok and then it catches up with me.....(crazy that folding laundry and repairing broken books is too much) I haven't actually been tackled by a football team, but today I can imagine what it feels like to have that happen.

A couple of updates from after my actual appts.  I have been having unusually high heart rate. My tremors have been so bad that I can hardly hold anything sometimes.   Have been told to go ahead and restart a med I haven't been on for awhile. Hopefully it will help with both. My hair is falling out in broken pieces. Not tons, just enough to notice a difference. 

Interesting info. When I began the injections and chemo, days 4-7 had me totally flat down in bed, literally. I was so sick. This time I only had the injections, and day 3-6 has shown similar side effects - including having my kidneys freaking out and super uncomfy joint pain. Good to know it is one or both of the injections that are causing those side effects. Can only imagine chemo on top of that, would have been totally down again. Good to know that we are seeing a pattern emerge already, that will help tons.

My dr MA called this morning to check on me. I talked with her about everything that has happened over the weekend. She is checking with my dr to see if there are any other helps for things that are a huge struggle. Also, found out my dr doesnt want to wait until the end of the week for labs to be done. Apparently there is a guy who has a mobile lab and he travels to patients vs patients having to make long drives to the dr office - pretty cool. He is coming today to do my labs for the oncology team and for my dr. Several sets again. Hopefully, doing it this way will have results in the hands of my dr tomorrow while she is in the office. Labs will determine whether I am still in a rest window, or if I will be able to start chemo and be out and about (as I feel up to it)

I will send another update once we have lab results back. Will see where we go after that.

Medical Update #2

Today I had the chance to see and visit with my PCP. I love her tons, we can laugh and cry and talk together. My time with her is always productive.

Today my appt mostly went well. She took tons of notes as I updated her about everything that has been happening, and we chatted about my labs and appts yesterday. Bummer deal is that I have 2 more labs that are off still. She isnt so happy about that. I will add her labs to the extra ones that I will be doing next week for oncology. I love that she is in constant contact with oncology dr and they are working together to make sure all my needs and concerns are being met.

Just as I was ready to go she gave me a super big hug and said sorry things are crummy. My response still seems to catch her, and others off guard. This was my response "Bad things happen to good people, that doesnt mean that good things dont happen in the midst of the bad things. There are blessings and tender mercies and miracles. There are." - She seemed surprised and said so, including that my comment gave her goosebumps. It seems to me that my perspective and comments really do surprise all of my caregivers, and others. I cant quite seem to figure out why though.....

I know that what I feel and say is true. Everywhere around me I can see the bounty of blessings that Heavenly Father is pouring out - it is having an incredible care team, it is daughters/son who run to the store to make sure I have foods that meet nutrition needs, who work tirelessly in the kitchen to make amazing meals, some just for me. It is driving for 30 min wishing I could stop to take picts of the thick borders of Queen Anne's Lace along the highway, and of the huge field golden with clover that has gone to seed, and of the bright blue sky. These things bring joy and beauty, and even on my most crummy day (like yesterday) they bring a smile and peace to my heart. It is a medical assistant who acts like I am the only patient she has and like we have all the time in the world. Her kindness and compassion brought tears of joy because I know that I am important to her. It is a husband who takes time to chat about appts even though he is still far away. It is a husband who cares enough to attend any and all of my appts to make sure he is up to date and to give me encouragement and support. It is having a comfy bed to crash in when I just cant manage anymore. There are more things than I can ever count. I know things are going to get harder, I know things are going to be gray, I know I am going to struggle with being a human pin cushion. There is opposition in all things, there is esp opposition now. On those days, I can remember all the good that is around me, and even if I cry and really struggle, I can say thank you for all the good people who give their friendship, love and support, for all the good surroundings that keep me safe and comfy, I can say thank you for my life and all of Heavenly Father's promises to me and to my family. Come what may, we will love this journey and we will continue to strive to climb upward and know that on the other side the view is going to be breathtaking!

Watch for more updates soon!

Really Long Day

Today started really extra early after a really extra long night.

All basic things were really hard. Driving was really hard. I dropped Kelsianne off for a playdate because we knew today would be rough. I could not remember how to get to our friend's house, even though I have been there tons of times. I got lost before I was able to find the right street and drop her off. I had to be extra aware on the drive down to my appts, with ceana calling to offer to drive because she was so worried about me being safe.

I did finally make it down to appts. Lab tech is really great. We just chat while she is doing my blood draw for my labs. She is very young, but very wise in her experience and in her suggestions for helping me think of things to help me be better. 

There is a cafe in the new cancer center, which I was grateful for today. I was able to get a light breakfast before all of my big appts. It helped a ton.

1st appt was in the infusion office. New nurse and nurse from before. Injections went smoothly and so far no increased joint pain. 2nd appt was seeing dr and PA. That was a really long appt. Lots of chatting and tweaking my appt scheduling. Bummer news today that is after just one round of chemo plus week "off" my total white count is down by half (# has to be over 1000, in window of 1200-1500 - mine was just barely over 500. I wont be starting chemo tomorrow, and with strongly suggested instructions, I also will be laying low and not going out and about or be in large crowds (including church) for the next week minimum. I have more labs scheduled for the end of next week, and labs and another appt the week after that. They are hoping that if I can "rest" that my #'s will come back up. Will be extra concerned with next round of chemo and possibly having labs done every week vs every 2-4 weeks. For now, I am to follow their instructions and rest and look to the labs next week to make a go forward plan. 

I have to write about the whole oncology team. Lab tech is so thoughtful, quiet and kind. MA's are not afraid to share their advice, concerns and encouragement. Lesley kindly reminded me to let others help me, esp the kids if they offer. To remember this is hard for them too, and if they think of a way to help, to try to let them help.Today when #'s were so low, and knowing that meant the plan would change, Katie brought out a packet of "do/don't" items and sat and talked with me for nearly 30 min. She expressed concerns, gave instructions and the "why" to go with them. This list, for now, includes no fresh fruits/veggies/flowers. She was tender and kind and patient. She gave encouraging words and also reminded me about letting others help me. 2 nurses in 1 day, I better listen ;) I left the office feeling like i would cry for good reasons vs because over tired and overwhelmed. I know that they truly mean it when they say to call for any reason. I love their hugs that really strengthen and sustain me. They are truly a blessing and a shining light of love in the midst of all the dark, hard days.

My last appt for today was to meet with the nutritionist. It was a good and not good appt. Anthony was able to go over my journal entries with me and we chatted about what is working or not. We discussed and set some new goals - no sugar added foods, need to take out/reduce any carb based foods and replace with proteins and veggies. 1 C of milk/day - preference to have no milk/day.Whole/Natural PB if can tolerate it. Look for high fiber tortillas, or have measured amount of corn tortillas or chips. Eat 1C beans of some kind every day.  Even on feeling crummy days eat 1/2C something healthy often, every few hours. Good input today - olives good, mayo ok sparingly, eggs of some kind are ok for every day. Bad part of today appt found out that Anthony is leaving his practice, leaving the state for family medical reasons. That was a big RATS because he has been a great add to the oncology team. There is another gal at the new cancer center who I am hoping to get in to see when I am there for appts. Will see how that goes.

I ended up with about 5 hours of appts today plus driving. So very thankful for Ceana taking her lunch break to run to the store and that she was able to pick up kels from our friend since I was running way behind from longer appts. I am also thankful for Kaeli who came home from work to put dinner together and care for Kels so that I could finally get some sleep. After a long nap, I am tired, but feeling a bit better.

There was one extra appt today. A home visit from our EQ Pres and our Stake Pres. I have to openly admit that I was terrified to have him come to our home, knowing they were both there to specifically check on me. And at the same time, so very touched that they both felt impressed to come and visit me right now. We had a nice visit. They didnt mind that I was feeling yucky, and they listened thoughtfully as I described today's events and my lab outcomes. They asked some ???? that I tried my best to answer. Not sure if I told them everything they were expecting to hear or that I expressed myself clearly enough. Even though I was so scared to have them here, I am truly grateful that they were both inspired to come to me, to express their love and concern for me and our family. Pres P handshakes are strong and filled with feeling, but his hugs are even better. I was so blessed tonight to have Bro N and Pres P here in my home, blessed that they prayed for me and our family, that they were here personally, just for me. It was a precious gift.

Will be sure to post again tomorrow with results from my dr appt and the labs that she ordered. I know there will be some concerns to be addressed, hopefully not too much. Stay tuned.

Round 1

Well, round one of chemo is done! 21 days have flown away and now 7 days are on the countdown. 

7 days are to let me rest and try to regroup. I have been expending a ton of energy in recent days, and though tired and sore, I am still staying vertical vs flat down in bed. Maybe the rest really is making a big difference.

I will be looking ahead to this week's appts. Wed will start very early, and will include 4 hours of appts back-to-back, and will include a total of 5 hours to be gone. I am leaving the whole afternoon/evening free so I can make sure and rest after such a long day. 

I will be sure to post again after all my appts on Wed & Thurs.  

Fwd: July 13 Update

> Our day started pretty early. Today there were 3 appts back to back, starting with labs. Cute gal there is Kat. She is really easy going and really good at what she does. So far she has gotten me on a first try every time. I appreciate that she doesnt turn me into a pin cushion and that I can know I can do labs at the cancer center vs bouncing back and forth between there and the hospital lab bldg. I went in an hour before my appt, hoping labs would be back for my appt.
>
> I popped upstairs to just hang out a bit for my appt. Preston got there just at the same time our cute MA was ready to take me back. We hit a slight snag when I asked her about another lab that was ordered, and hadnt taken care of that yet. Found out the PA didnt get the order in on Monday, so I dashed back downstairs, Kat called upstairs for the order and I was able to take care of that quickly.
>
> I was a bit worried about meeting with just the PA -she is new, this is only 3rd time I have seen her - but she was really amazing. She went over all of my labs (including some from Pri Care Dr). She explained everything, answered all of our questions, did my check up, acted as if we had all the time in the world for my appt. For the most part, she said there are no "red flags". I have been on chemo for 2 weeks now, plus the injections. A couple of snags - she commented that my white cell count is "depressed" - but didnt seem overly concerned. She did confirm that our go forward plan is to make sure that I initiate any physical contact, and that I can be at church/teach our class, only if kiddos/others around me are healthy. I am not to go out in public if I am feeling crummy in any way (more on that later). I was happy to know that we are on the same page. My thyroid is still off/too high. Will address that in a couple of weeks with my primary care dr. Big surprise is that I have a UTI - being sick all last weekend may have been stones rolling around/maybe start of infection. Crazy thing is, besides me being sick, that there are no tell-tale signs of it. Both PA and on call dr (my dr out all this week) both said that they are not willing to take chances with big symptoms to show up. I am now on antibiotics to nip things in the bud. Overall, we left our appt feeling very pleased with info/with go forward plan for next 2 weeks until next appt. Good to know what to watch for (fever, throwing up, significant weight loss, increased pain of any kind) before dr is super stressed. Good to know they are there for anything at all. It was a really good appt.
>
> Our next stop was to finally have an appt/get to meet with the hospital nutritionist. I have been waiting literally months for this appt - and it only happened because the referral came through the oncology office. Anthony was really nice and answered all of our questions, helped set up some goals and a plan. I will be working on a diabetic diet, totally controlling my blood sugar levels. Easier said than done. This will come in baby steps. Plan is to increase proteins and veggies alot. Most fruits are ok - interestingly enough, grapes are totally out. Most dairy is ok in small amounts. Carbs have to be watched super closely, and I have a specific window I have to keep inside of. Sugar foods, sweets, etc, for the most part will become non existent. Portion control will be a big part, as well as keeping a nutrition journal for Anthony to see at each appt. It will be a big job to learn the difference between "better, best, and not at all". 
> I also committed to a minimum of 1 hour/day of exercise 6 days a week. Also will be baby steps, and a constant work in progress depending on how I am feeling from day to day. I specifically talked with him today about starting back in a beginner class for TKD. Kels & I would take a class before my boys' class. Anthony was very thrilled when I told him I had checked into starting classes again. TKD head instructors were more than supportive when I inquired about starting back and have great ideas of what class would fit best. Also talked about dance etc each day. When Caiden is done being a zombie (he is getting up at 430am to go out to SIL farm to pick berries every day, comes back home exhausted), we have talked about an hour+ of dance etc on the days that we dont have TKD class. Anthony was really thrilled about that option as well. My weight loss goal is to only lose 3-5lbs/month, and no more. That is with intentional goals. Will have to watch my weight loss due to feeling crummy/not eating because of having food taste really yuck since starting chemo. That is the unintentional loss, and he was very concerned about me keeping a close eye on that.
> I really liked that he is very sincere when he says to call/email him with questions. Yesterday and today he really took care and time and made me feel encouraged vs like I was being a bother. One thing for next appt will be to take notes or use a voice recorder so I remember more and not have to call to follow up too much. I think Preston and I both felt like it was a good appt, and a good plan for both of us and eventually our family as a whole.
> Something funny (and not funny) was at the end of our conversation on the phone today...this was his comment "I have never had anyone like you or with concerns like yours before, so be sure to call me with any questions at any time" - I kind of laughed and said "welcome to my world" and then gave a shortened version of all of the medical complications that I have experienced pretty much my whole life, and esp when I went through cancer treatment before. At least he is willing to help vs run screaming in the other direction - lol. Good to have another solid member of our "team"
>
> After all the appts we got a treat. With Preston leaving now for AT, and even though we will be "together" for part of our anniversary (he has a concert that night), and with me being down for appts by myself too (recently have had peeps in tow because no babysitter) we decided to use our christmas present (thanx to big girls) and have a nice anniversary lunch at a local, extra yummy, Italian restaurant. It was nice to have time to talk about appts and just have some time for us (totally should have taken a pict, darn..). It was interesting to try to choose from the menu after having just set new nutrition goals.
>
> Yesterday I did all of the driving myself - to appts and to take the boys to class - energy levels were good. Today has been mostly the opposite - feel like I have been tackled hard and left to lay on the field. Even though eating has been super hard, and I am feeling yucky, I have been able to at least mostly be up and tucked into my work/reading nook vs being flat down in bed. Tomorrow is pretty quiet so hopefully I will be able to just rest more so I can help the boys get to their classes on Saturday and get us all to church on Sunday (minus preston and the big girls, could be interesting day). 
>
> I know that all these changes are going to be VERY hard. I know that I can do baby steps, and I know how to be aware of how I am doing. I also know that I can read my blessings over and over, and heed when they say to do what drs/specialists say, and that baby steps are ok and needed. So very blessed that Heavenly Father knows exactly what I need and knows exactly what counsel to give so I can depend on on those words when things get hard or overwhelming.  The priesthood, and having a worthy and wonderful husband to share it, is truly a precious gift. I know I would be so lost without those blessings at my fingertips. I am grateful every day that Heavenly Father truly is aware of our circumstances and that he sends so many blessings every single day to help us through these trials and difficulties. I know because I have Heavenly Father, and Preston and our kiddos, and because they all love me, I can get through this again. It will be a long, sometimes difficult road, but the light that shines to lead us through will never go out, will always be there to guide us. Truly there are blessings, miracles and tender mercies all around us even in the midst of our darkest days. There is joy in the journey and the opportunities to change lives, and to esp change our own. Come what may, we are learning to love it.