Lots Of Medical Etc

I havent written for awhile. Have had ups and downs, but with current medical etc, it seems a good time to get caught up.

I have spent the last 2 days with lots of dr appts. I had both main dr offices order all of my big labs. I am still waiting for several results for one office. All of my oncology labs came back today.

Today I met my new oncologist. She was very nice. At first I worried we would spend the whole appt going over old stuff. Turns out going over old stuff was really important. She was very thorough and made sure that I understood all of her instructions. She even made a specific list of things I need to work on and things they will take care of...So for my appt today.....

Confirmed UTI # I have lost track...Trying a new antibiotic, so will see how that goes

All of my cancer markers and labs came back stable. My blood calcium level came back way too high. Not sure of the cause since I am getting tons of fluids already and not taking any supplements. Only way to help my numbers drop back to safe is getting my bone protector injection and IV fluids. Thankfully I have wonderful infusion nurses and they took really good care of me.

Because calcium levels are too high, and I havent had any imaging in last 6 months, I am being scheduled for another CT and a bone scan. Dr office is hoping to schedule those together. It will make for a very long day, but hopefully will give us some good answers.

My dr has taken me OFF of tamoxifen! Totally different thought process/perspective - "If you have been on it all these years, and the cancer came back, then why continue with it? It is obviously not working." We are replacing it with another med similar to tamoxifen, but mostly for postmenopausal women (which technically I am) and esp since I no longer have my ovaries.

We talked in some detail about my chemo and whether to continue. She was pretty adamant that I need to work through the hard stuff and stick with it because my labs show that it is working, and hopefully still making a difference. We talked about my biggest concerns, most difficult side effects. Not really anything to do to relieve them. Hopefully going off the tamoxifen completely will resolve my vision concerns and some of my monster brain fog. I will stay on chemo through this whole cycle and probably the next one, knowing we will discuss imaging and make any changes once we are to that point.

I think that covers things for now. I will be sure to post my other lab results as soon as I have them back. Thanx for sticking with us!

Shared Thoughts

I realized that as I have been going through cancer etc for a 2nd time that I have the experience and perspective to be able to help others through this process. I am part of a support group for cancer/tamoxifen. I find that when I reply to a post that I end up writing/sharing quite a bit. I realized, though, that i wasnt posting my responses here - another place where I might do more good. Not sure if I can go through the other page and search for just my posts, but I can start here to post from now on.

Today there is a gal who is new to the support group. Sounds like she has been through a lot in recent months. This was my reply (just a note that each time I do post, esp a long reply, I am just having my fingers move across the keys, but inspired writing happening, I hope so. It would be nice to be of a help to someone else, and know it is not me)

So sorry you are struggling. You are right that we all struggle at different times through treatment and trying to go forward. After spending tons of time in the hospital because of surgical complications, when I came home I refused to look in any mirror - no hair and I felt like I had been butchered. We made our master suite with lots of mirrors on purpose to reflect natural light - I hated our room for a really long time. It was no longer a comforting place for me, because everywhere I looked I only saw this hideous person. I crashed and burned and recovery was very long the first go around. I cried every day, I struggled to care whether I ate, whether I stuck around for anything. My weight plummeted, but I just didnt care. Really put my poor husband through the wringer. 
One thing that our family did, right up front, was to take time every single day to consciously look for good, no matter how small. Little did we know how devastating things would be. We made a wall in our dining room to post recipe cards, or memes, or picts (my youngest daughter was tiny, just learning to hold crayons/draw) Everything on that wall was a pict or paper of every thing that had been a tender mercy, or a blessing, or something good, no matter how small. We clung to this endeavor esp when things were at their worst. There were many days - esp when I had been in the hospital again or another surgery - that I could not think of a single thing to write down, I was too sad, too overwhelmed. But when I took time to look back, there were good things there all along. 
This go of things has almost been harder. I feel extra crummy going through chemo and staying on tamoxifen at the same time, plus all my other meds. My weight is crazy the other way, I am trying to manage meds and side effects at the same time. There are days I dont want to get out of bed, and only do because my kids need my help (we do school at home), there are days I dont get out of bed at all. I cant do little basic things like shower or cook or dress, I have driven very little in most of the last year since I was diagnosed again. All of these are part of the process - some days are ok, and others just totally stink. 
Your feelings are valid. What most people dont understand, esp those who have never gone through it, is that this is a grieving process. Each in our own way have experienced great loss that often cannot be reclaimed. We have every right to grieve, and we do, all along the process and this journey that is now ours. There are many stages of grieving, we may get through one, just to get stuck on another, or go backwards sometimes. 
It is ok, and for each of us, there is also something that is so important to remember - there is and there will be healing - it may come at first, or not for a very long time. Healing will come, our hearts and our minds are strong, even if it feels like our body will never be strong again. Give yourself permission to cry, to have bad days, to be mad at the whole thing. Give yourself permission for your body to heal, it has been through alot, and it will take time for you to get closer to goals that you want to achieve. They always say that a body takes 9 months to grow a baby, and it takes at least that long to meeting goals. Except, we are not the same as we were before. Our bodies have changed, a lot. Pre-pregnacny "perfection" happens to very few. We have been through big physical changes, along with the emotional and mental ones. It is hard to say, but we will never go back to being who we were before - and that is ok - because we are stronger and better and more amazing in so many other ways. We are more sensitive, more compassionate, more gentle, more caring, we have a totally different perspective that we did before. We are different than before and that can grow to be a really good thing. I will be sending best wishes and tons of hugs that the rest of your week will be better, and that you will find comfort and peace as you work through this next stage. Remember that you are amazing! You can do this! We are all right here too, we have your back! Sending tons of hugs!

So many others that I can think of that I hope this message reaches. Amazing women that I love dearly, who are incredible examples to me. I hope that to whoever this reaches that they will know that they are strong, and they are amazing, and esp that they are loved!

Feb Post Op Appts

This last week has been really hard, havent had the energy to write. I thought I better make myself do at least a small update

I have finished week 2 of chemo. 1st week was ok, but this 2nd week hs been super hard. Needed help with everything, including errands and driving. So thankful for my VT who makes herself available to me to help whenever I need it.

Yesterday I had 3 hours of appts back to back. To say that I am exhausted today would be an understatement...

Oncology appt - I met with the PA. She is so patient and works hard to explain things to me. My brain was so tired yesterday that it took Preston and the PA to try to discuss our go forward plan and make a schedule for my next chemo cycle. We discussed starting right away, but my PA was extra concerned that I would not be able to handle it and I would be at high risk. Instead we clarified that I will finish the few chemo meds and just finish up in the next few days. I will then take a whole week off, and start a full 3week cycle in 2 weeks. I will continue to keep a detailed journal and check in with dr office about any concerns.

During my oncology appt we went over all of my labs (have to insert here that I am SOOOO thankful for the owner of the local mobile lab company who fits me into his already full schedule to help me not spend an extra hour at the cancer center, he is a really great guy, so thankful to have him on my medical team) My PA was really thrilled with all of my labs. #'s are really good, and very stable. She was also able to give me a report on my A1C (diabetic #s) and I was esp happy to know that those #s are stable too and that my med is doing its job. I always find it interesting when my labs look so good when I have been so sick this last week, sometimes they dont reflect how I am really feeling. The one lab that was too high was my calcium level. Oncology watches to see if it gets too high to assess whether I need IV fluids. Thankfully yesterday no one was overly concerned, esp knowing that I was getting my bone strengthener injection.

After my oncology appt I went directly to the infusion office. It was an interesting appt as the cancer center insurance case manager came and found us there. She has been working her guts out the last 2 weeks to track down and get my next chemo sent. Long story short she has been after our insurance pharmacy to get my chemo after we were told the pharmacy was out and might get it, if not when. She was so mad at how we and how she had been treated by the insurance. I told Preston that she is a tiger, she does everything possible to help patients and she is the one to fight the insurance so we dont have to. Hopefully meds will show up while I am in my "off" week. I always look forward to my infusion appt because I know that he gals there truly care about me and it is always wonderful to have my nurses from when I was sick the first time. We again talked about my calcium levels, and my nurses were sure that my injection would reserve any concerns. 

My last appt of the day was my OB post op appt. My surgeon had been away for a family funeral for my surgery, so it was really wonderful to see her and go over all my post op with her. She is my very fave dr at the OB office (I have others too, the group is great) She delivered colton and helped me through all of the complications of that day. She personally came and found me after my mastectomy surgery went all wrong and visited me as often as she could. She counseled me and helped me make a surgery plan when we knew that oncology alone was not going to resolved concerns. After all these years we are on a first name basis, and she is my friend and not just my dr. My appt went well and after lots of hugs, she cut me loose until my check up in Oct. I am so grateful for all that she has done for me. 

Truly I am so blessed to have the medical team that I do, always working so hard to give me help and support and doing everything they can to help us work through the constant snags. I am also heaven blessed to have my husband who stands by me through thick and thin. He took time off work,again, to come with me to all of my appts and to drive me home. I am thankful that his brain hears and processes things that I dont, esp when I am already feeling yucky. He helps to make a plan, he offers to follow up on things we have discussed, he is there to give me love and support. I dont know what I would ever do without him. I am so thankful that heavenly father sent him to me.

OK, soooo...my short update ended up being extra long. If you read this far, thanx for continuing to stick with us. Hopefully, things should be pretty quiet for awhile. I will update more after my next appts. Thanx for all of your love and support and help! It really means so much to know that you are there!

Post Op Update

Preston has had a huge job to keep up on all of my pre and post-op etc over the last several days. So thankful for him staying on top of keeping everyone updated.

Just a quick overview for those trying to catch up. Surgery was scheduled Thursday AM, with the hope to truly be out patient. Even with amazing care and kindness from drs and nurses, we had no such luck though. AM surgery discovered unusual nodules that had to come out along with ovaries/tubes. I continued with excessive pain in post op even with every pain med plan, also continued with excessive nausea and just struggled overall. So very grateful for kind, patient nurses who cared for me. Pain continued to be totally out of control in spite of everyone's best efforts. Late evening determined a move and admit to 4th floor (L&D, where my on call dr could get to me easier). Continued struggles determined that a 2nd surgery would be necessary, so went back under late Thurs night to redo deep internal stitching. Thankfully that mostly resolved the biggest concerns. Also, being admitted meant that I was able to get all my pain meds via IV and that relief in itself was a huge blessing. With the pain finally managed, and amazing care from sweet nurses and both surgeons, we just kept trying to figure out what was next. Nausea was still excessive and we were not able to figure out any relief. Drs thought was that my body was just having an extra hard time bouncing back after having to do 2 surgeries and all the extra drugs and anesthesia that went into my system. Nurses continued to help around the clock to try to help me to eat and take a walk and get about by myself. Throughout all of this Preston never left my side, helped with any tiny thing that I needed, "slept" in an overstuffed hospital chair while nurses checked me every 30-60 min all night long, he was patient and just helped any way that I needed. We were also extra grateful for Caiden and his ability and willingness to hold down the fort at home while everything was happening. He made sure little peeps were taken care of, fed, did school, and took an overnight and a few days by himself. He is truly growing up, and we are so thankful we know that we can rely on him, esp in the face of great adversity.

Finally Friday evening I took a turn for the better, eating a whole meal, walking about, doing things for myself. Drs and nurses thrilled for me to be doing well enough to go home. Once home, trying to get settled was a bit of a challenge, and had a slight scare when I accidentally took coated ibuprofen at home (normally I cant have IB at all because of tamoxifen, but got ok, used at hospital. Can have regular IB but allergic to any coating - advil, motrin, etc). I had already taken my sleep med, so I did not recognize the allergy signs quickly enough. SO many blessings and answered prayers of protection - allergic reaction was severe enough it has taken 2 days+ and lots of benedryl to get stuff back out of my system. Other snag was having Preston help with my first of a month long need for anti blood clot injections. It didnt hurt, but brought tears anyway. Just with everything else, and this extra, it is going to be so much harder than I thought. So thankful Preston loves me so much to continue to be at the forefront of my continued need for pretty extreme care. I truly dont know how I could ever do ok without him. 

So, now I am just trying to lay low, eat when/what I can, and hoping and trying to get better soon. I will have follow up dr appts in a few weeks unless anything else needs attention before that.

Truly thankful for all of you who continue to keep us in your thoughts and prayers. I know that there is great power in love and prayers and these things helped us to get through this weekend, esp when things were at their very hardest. We are ever grateful to you for your love and support as we work through this latest challenge in our life. Your love and support and friendship, and esp your heartfelt prayers are felt by us every moment, and we know that we are truly blessed because of you.

Hopefully things will stay quiet now for awhile. Will post another update soon. 

Out Patient Procedure? Not quite ...

Those who are still following along heard that Rory had a second little surgery last night. She seems to be doing much better this time, but we're still at the hospital battling with nausea and some pain. The nurses are insisting that she eat, so she's been working on a little bit of scrambled eggs and applesauce. She is able to get up on her own a little bit, so that's progress! I expect we'll see the doctor again after lunch to put together the next step in this ever-changing plan.

Here We Are Again

It's been awhile, but I'm checking in again from Short Stay. A short reminder about why I'm here with Rory ...

Her breast cancer is the type that needs estrogen to stay alive. She's been on a drug that is supposed to keep the cells from latching onto the estrogen in her body, and another to try to suppress the creation of estrogen. The main source of estrogen is the ovaries, but it's also made in other places like some organs and even in muscles. To really shut down the major estrogen production, they decided to have her ovaries and tubes removed.

Fortunately they can now do that procedure laproscopically, meaning she'll have three little holes: one for the camera, one for the air hose (yes, the air hose) and one for the basket to remove and retrieve those bits and pieces. For most people it's an out-patient procedure with very little to no restriction in daily activities even the day of surgery, so we're hoping to be home by lunchtime.

Something new was that I was told to "gown up" while waiting for her. Had a lovely yellow paper gown with sleeves down to thumb holes, plus gloves. I only got to sport that getup for a few minutes, as the nurse came in and said we had the "all-clear." Apparently because of her recent infections there was some sort of flag that had them concerned enough to take extra precautions, but the "infectious nurse" changed her mind and cleared me to take it off. So I was only "special" for a few minutes.

Even before signing anything they had an EKG done. Lots of conversations about allergies and meds; they finally have stopped trying to write down all that information on her bracelet, and now they just write "See Chart."

They listened to Rory's "suggestion" that the IV team be called to get her line started, rather than letting the floor nurses give it a try. Who walks in to start the IV? Sally. She's some sort of head IV team coordinator, and has been called in for past attempts after nurses had used up their allocations. In the past she has come with a little portable ultrasound machine to try to locate veins, but this time it was just her. She and Rory had quite the conversation about previous surgeries, reminiscing about everyone's friend Jill Tharp, family vacation, etc. Even with all of those "good thoughts" it still took Sally two tries to get the IV started, but it was "only" two tries this time!

They do an antiseptic swab of the inside of the nose now, which was new for us. They had Rory do her own abdominal wipe-down with antiseptic wipes. We met the surgeon (her preferred surgeon ended up with a family emergency today, but the team decided it was best to go ahead with this procedure anyway), new anesthesiologist, and new nurses. Everyone has been great, patient, understanding.

So by 7:30 they rolled her away, and I'm in the waiting room. The procedure is supposed to be about an hour (hopefully less) and then we'll see how long it takes for her to wake up. More to come when there's anything to share ...

January 2017 Update

Wedding etc done - check. SLC open house done - check. Baxter Family Florida vacation done - check. Surgery pre-op appt done - check....

Crazy that the last 2 months, and an entire year have come and gone! Wedding etc plus rockin' family vacation back to back and now we are settling into a new year and school and home etc once again. 

Pre-op appt went well. Dr feels that surgery will be very straight forward. She is anticipating that I will be able to come home same day and shouldn't be down more than 1-2 days. Will have a long weekend of no extras to recover. Biggest challenge will be having to receive daily anti blood clot injections for a whole month post-op. Will learn how to do those ourselves at my next appt. Have stopped all cancer meds until after surgery. 

Our other unplanned adventure is that Colton ruptured an eardrum during last week of vacation. Confirmed concerns with on call dr at pediatric office. Hopefully with a strong antibiotic ear drop over the next week it will heal on its own. Caiden came home with a cold+fever so he is also down for a few days. Always is something.

I am thankful for multiple Dr appts next week so I can touch base with everyone before surgery. Oncology appt will be a big appt. I have tried to start lowest dose of chemo. I tried chemo during vacation, hoping to tolerate it and do normal stuff like Dr hoped. No such luck though, days 4-5 were esp hard, even missed last half day of Disney because I was so sick. Sent notes to Dr office of reactions. She is esp concerned about my reactions considering that we can't drop it any lower. Will have big discussion of what will need to happen next, or if I just have to try and know I will be sick. 

Sometimes I come to tears because my brain and body are broken. (Brain was esp bad day we flew home, lost big items, Preston rescued). I have tried so hard to stay positive, but there are times that I can't do anything about, times that literally have me in years, times like being so forgetful or having extreme side effects to meds that are supposed to be helping me. Times like knowing surgery is going to be harder than expected because my body doesn't behave like the "norm". I know that there is nothing I can do about these things, but feel like I should, and end up saying sorry all over the place to those who are caring for me. Esp to Preston and the kids for being such an extra burden at times. I end up not knowing what to say or do to make things better, because there are times, like now, that there is nothing to make things better. 

The only thing that I do is ask for help, from Preston or Drs and esp Heavenly Father. I had the extra blessing that He answered every heartfelt thought and prayer during vacation - every single one, immediately. In all my weaknesses, He answered without fail. Truly a very great miracle to me that He even cared about the little things that were such a big concern at the time, and esp to answer when I lost big things on our travel day home and that they were recovered quickly with Preston help and patience and forgiving me for being so clueless. The only one thing I know that I can do is continue to ask for help and hope that Preston and others and Drs, esp Heavenly Father will forgive my great weaknesses and the great burden that I am. I will try to stay positive and know that this and prayer can hopefully heal and help as we continue to take on big challenges. Thanx to all who continue to stick things out with us! Will write more soon!