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.