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.

Beginning of Dark Days

Well,  it has happened,  not as soon as the drs thought, but later than I thought - chemo meds have caught up with me.

I have spent most of the last 3 days in bed. Joint aches, nausea, feeling wobbly, and another surprise - kidneys fussing as if stones are moving around. All of these things have been uncomfy enough to put me to bed,  but not bad enough to warrant heavy help meds. Because it is the weekend (of course) I have been unable to reach any of my drs. I am extra worried about driving myself and the kids to Dr appts tomorrow. I have to get down there to see if I can request and squeeze in an xray to see what is up with my kidneys. Having stones moving around right now would so not help. ....sigh

Today there are also tears flowing that have been held back for the last several days. Tears for the pain,  but more for the pain and guilt of ruining what was supposed to an awesome bday weekend for kaeli.  Because I was totally down,  and the weather decided to not behave,  for the first time in years we didn't get to the beach for her bday. She and Ceana ended up cooking her bday lunch and dessert themselves. Our special girls night ended up being a sisters night,  while still fun,  wasn't what we had hoped for.  She is giving a talk in sacrament meeting today that I am missing. All these special things that I can't be there,  and I feel like I am letting everyone down,  on top of being a burden again because of medical etc.

Hoping that I am going to be able to find a better way to manage days like these. Being able to just stay in bed to rest has been a blessing and a bane. I am doing what I can to take care of me right now. I am doing my best to remember the words of a recent blessing to not let myself get super down or feel guilty because I can't do everything and can't be everywhere...hard though when it is the kids' events.

Sometimes it is hard to see the blessings and the tender mercies when you are right in the thick of things, when emotions are running high. They are there, though. Lots of little things - like having 2 people send messages of love and prayers when I needed them most - and big things - like having meds to help, soft bed, sunken tub, husband and big kids to care for me.

There are going to be extra rough days like the last few have been, that is a given. Those days are going to drain me to the point of shedding tears. Those days will always have a shining, bright lining, somewhere, if we just choose to look for it. As I taught my primary class last week - you can't have a rainbow with out the sun AND the rain. These last few days it has been rainy, literally. The sun will show itself soon, I will find the help that I need, will just keep on moving forward one step at a time. Even baby steps are moving forward in the right direction. Sometimes baby steps are all that are needed.

Bricks, 1 Ton

Looks like yesterday and today are the start of the REAL symptoms of the chemo for Rory. Joint pain, nausea, etc are setting in. On top of that, she's got back pain that has her suspecting that those kidney stones might be moving around again. Like she needs THAT right now, too.

Of course these things set in on the weekend when nobody is manning the Oncology office, but hopefully we have enough supplies here in the house to get her through the weekend.  After this week I'll be on the road for two weeks, so we might be looking for a bit of extra help during part of that time I'm gone. Fortunately her 1-week "break" from the medications corresponds with my second week of AT, so with any luck she'll be feeling better that second week of my travels.

Preston

Feel the need to share this. This has been very conscious at all levels recently as our community has grieved a great loss of a local family.

It always continues to amaze me that as I have been sick, and as I have watched others go through a grieving process, whether illness, loss, or any other traumatic event, and all that illness did and is including for me again now, that I find myself comforting others about my circumstances vs the other way around. I think when you go through something that is so big that you cant explain, that those comforting circles get all wavy or jagged or are filled with holes. People just are unable to understand, but it doesn't stop them from commenting or purposefully making judgments. Last time I was sick there was one person who literally cornered Preston at church to inform him it was my fault I was sick and how he and I should go about fixing things. I was appalled when I found out. Recently I was on the receiving end of a conversation that totally blindsided me, and it wasn't even about me being sick. Although the detached comment made about me being sick was also rough to take. I still can't think of that moment without it very physically and emotionally wreaking havoc. For me, it is so important for me to share that this ring system doesn't just have to apply to illness or loss, it can and does apply to any traumatic event that someone has experienced. For me, having personal traumatic events has helped me to continue to try to learn not to judge something I truly cannot understand without being in that very inner circle. It is so important to learn to allow us to truly comfort someone else during a grieving process. One thing that I think is maybe missing from this article is letting people know that the words "should, could, and "if you would just" be kept as far as possible from those people in those very interior circles. These words hurt, and never help. Nothing worse than being told what you "should" do and being told you are a bad person if you don't. People can share words that can slice you to the heart. Still a work in progress to not let those words hurt when you are in the center of that very inner, tiny, circle and feeling very alone and isolated, even with the love and care of a spouse and children. Words of love and extending hugs (where appropriate) and prayers and good wishes are always a way to go. Those who are struggling will let people in those outside circles know what they need, and what types of comfort that they can handle. Those needs will continue to change throughout the grieving process, if others can also understand this, it can truly express comfort and support.

It is always a work in progress, we can always learn to do better. I strive to do better all the time. Just really good info to know. Really felt that I needed to share. Please do share this with others you think would benefit from this info.

http://www.northtexasumc.org/2016/04/how-not-to-say-the-wrong-thing-in-death-illness-divorce-and-other-crises/#.V3pEKrM_b1U.facebook

Chemo Day 2

So, last time around Day 2 of chemo would typically involve a second trip to Corvallis (for her bone-stimulation shot), and Rory would still be on the downward crash from the poison cocktail. (That's what chemotherapy is ... POISON.)

Today, she was able take the kids all the way out to Albany to pick up Caiden from the blueberry farm, and she's out to lunch with one of her best friends.

MUCH different from last time!

Preston