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.