Long Emotional Day

Another long,  stressful day. Another day filled with joy,  tender mercies and monster big miracles.

This morning started super early to be to the oncolgy lab by 8am. New office,  new tech. Though it stung like the dickens, she got me on a first try and no bruise!  (I should seriously take pict from last 2 procedures,  looks like I have been beaten! )

Next was a ride in the elevator to the infusion office - love this,  offices used to be in 4 separate places - Met new nurse,  and saw 2 nurses from my chemo before. One of which bear-hugged me like she wouldn't let me go.  It was a very sweet surprise. Other nurse had very animated conversation about a book by a local author that is being re-released,  and included me in her excitement and chatting as she talked to the other nurses. It truly was wonderful and eased all my anxieties. Injections went really well. Burned a bit, and they held me awhile just to make sure no side effects. HUGE tender mercy that I did not,  and have not reacted to either one!  Cuddly nurse gave me another huge hug before she left (have to have 2 nurses to double check name and all drugs before admin). She said sorry I was back,  but she was happy to see me. I left with my heart lighter than it had been going into appts.

Things got crazy after that. Chemo med still had not arrived. Ended up on the phone with gal who was hugely not helpful in any way. Got off the phone flustered and worked up over the fact that med could possibly not arrive for 14 business days (got shipped totally wrong and was supposed to be here yesterday) I checked in with Preston who was watching every tracking everything trying to find the pkg that seemed to be lost. If it wasn't so time critical there would be breathing room,  but it is, and there is not. More about this later. ...

I also needed to tweak my new CPAP. On a recommendation,  I called the office to try to squeeze in today to save me from long drive tomorrow. Thankfully 2 techs were in early. One helped me get everything squared away. Another HUGE tender mercy.  I had a not good snag that has kept me from using my machine. Not breathing has been a challenge. SO happy to have it back,  and new plan that seems like it is going to really work! The people at the office are so nice,  it was a true blessing to have their help and their happiness.

After a couple more errands and I finally got to the post office. I have avoided the PO at all costs since new staff has been in place. They have made things very difficult and have been very unkind.  Preston had let me know his info showed meds had been,  in fact,  delivered to the post office. I talked to the post office guy and explained what I was looking for. Initially he told me no new pkgs had been delivered since morning,  but I could give him tracking  #'s to show they were there. I almost was in tears. I tried to explain the pkg was critical and had been shipped incorrectly. He went and looked, and came back with a pkg in hand,   I was so thrilled - and then I opened it - it was not the chemo meds. I went back in and told him it was the wrong pkg. I left totally heartbroken and sat in the car to call Preston. He could see the tracking info that the chemo pkg had been delivered. In the midst of our conversation,  I noticed the post office guy walking quickly outside the post office with a pkg in his hand - our precious pkg - I quickly jumped out of the car and followed him back inside. I ripped the pkg open right in front of him and there it was.  I thanked him profusely, though it wasn't enough to truly express my gratitude and relief, for taking time to look for the pkg and to look for me. He went out of his way to find that pkg and to come outside to hopefully find me. I am thankful beyond words because heavenly father heard my begging pleas all day to please bring the meds today. He sent a very kind person willing to go the extra mile to help us make sure we took meds home today. Once again,  someone who puts people ahead of protocol. Huge tender mercy to have new staff in place.

I know that all my thank you's to heavenly father were not,  and never will be enough, but I hope they were a start. I am so thankful,  and also totally terrified to go down this road again.  Even though I am scared, I know there will be more tender mercies than we can count.  Today was 1 of many miracles I have already experienced in the last 2 months, 1 of many I know are still to come. I know that as I trust in heavenly father and look to the promises He has made that we will get through things,  one day at a time, one appt at a time,  one med and side effect at a time,  one heartfelt hope at a time, one thank you at a time....and come what may,  we will strive to love it, and learn from it,  and grow to be closer to who heavenly father needs us to be.

Rory

Throw The Phone Out The Window

Today was definitely a Monday. I woke early to make sure phone calls were made to all the dr offices before taking peeps to their 1st orthodontist appt. That went ok mostly,  kels had some tears,  but doing better now.

Today was supposed to be the day to put all our ducks in a row. MA and Dr were both out of the office today,  and I ended up leaving multiple messages with 2 new gals at the office, and ended up not getting any calls back until I had to really make some noise about specific concerns right at the end of the day. 

Close to the end of the business day I ended up on one phone with TRICARE pharmacy and preston ended up on his phone with the infusion office to try to track down why things were not in place.

I talked with a gal who was super nice and patient as I expressed my concerns. We found out today that my chemo med is coming via USPS instead of via 2 day special shipping. I found out that it will most likely take 5-7 business days to get here. I discovered many more questions than could be answered,  esp about the med and safety concerns - highly controlled substance,  is it going to be damaged by heat or excessive travel,  etc. Gal said she couldn't understand why it hadn't gone through the specialty pharmacy. We found out that we will be totally responsible for shipping costs if USPS does not work....sigh

Speaking of costs - the shipment includes 2 months of meds - for a grand total of $13K. She was shocked at the sticker price. A huge blessing is that she said it looked like we have met all of our deductible  (not a big surprise) and the entire amount would be covered. I am afraid to even think about the $ for all my tests and meds and injections (no $ known for those yet) from now until 2yrs+. I am truly grateful to heavenly father for reassuring me in a recent blessing that all the physical and financial things will be taken care of.  That I need not worry,  that He is preparing the way for me, and our family,  to do this thing that he is asking of us.

The gal did her best to answer my ??? and told me she was impressed with my attitude.  I was trying SO hard to be calm even when things seemed to become even more of a problem,  I was happy it came through that way. She wished me well and even though we were not able to find answers,  she was kind enough to try.

Preston and I both ended up talking with the gal at the infusion office.  They couldn't see any of the authorizations yet,  even though we could and preston had all the info for the office. I spent time trying to explain why we needed the appt,  but not having ducks in a row,  and unable to do anything until infusion had their stuff in place. Thankfully by the end of the day,  Preston gave them all the info they needed AND got an appt for me! He is awesomely amazing!

I tried the oncolgy office one more time. I talked to same person I talked to at 830am. Found out she was new and that neither dr or MA I had been waiting to talk to had even been in the office all day (ggrrr). I finally expressed enough distress to actually talk to a different MA to express my concerns and let her know we had done all the work with insurance and pharmacy. Really all she could do at that point was take another message that,  I hope, dr MA will answer tomorrow....sigh....the whole day has been so discouraging knowing/hoping to be on a specific time table.

On top of this there was a miscommunication about us taking in a meal to a couple in need in our ward. I didn't even know we were supposed to take anything until I got a phone call from the husband.  I have to admit I was frantic and it caught me off guard. We raided food storage for yummy soup,  and homemade bread with preserves and some of our fave cookies. I could tell when I brought it he was not impressed. I felt bad,  but did the best that I could.  This time it wasn't enough.....

I feel exhausted and discouraged. When I feel this way I am so very glad for the written words of my blessings. One I specifically went hunting for I knew talks about this very thing. Heavenly father knows I am a control freak. He reminded me to know when to let things go,  too know attempts at service are enough,  and to not let myself feel guilty or overwhelmed about the things that are out of my control.  I am so truly grateful for a husband who is always worthy to give those blessings,  and grateful for a loving father in heaven who knows me perfectly, and continues to answer every worry and every fear, and so truly grateful that those words are written down so that I can look to them on days like today. They have brought such comfort and peace, esp on extra rough days.

I know that things will eventually fall into place. It will be on the timing that is right,  but that isn't usually in our timing. This will be another practice at learning patience. One of many lessons I will be re-learning through this new trial. Tomorrow is a new day,  filled with sunshine and service opportunities. Tomorrow, come what may,  will be filled with many things,  and people,  to love.

Rory

Just remembered ...

Something I totally forgot to mention in my summary post from the oncology appointment, but was reminded about it today. The team keeps tissue samples from all the stages of this entire process, including from the first time Rory's cancer showed up. That's how they were able to definitively verify that the cancer from the recent biopsy is the exact same cancer as she had before. They must have vault freezers somewhere with rows and rows of bottles of samples. That's not the cool part.

They will be sending a sample from her most recent biopsy to a company who will get the entire genetic sequence on her cancer cells. Then, as FUTURE therapies are developed, they may be able to pick her particular brand of cancer out of their database as one deemed likely to respond favorably. It's the future of medicine!

Full genetic sequencing to unlock future therapy just seems really cool to me.

Preston

To Friends and Family

I have been trying so hard to know the words to write to share some difficult news. Though it is difficult,  there are also many things to share that are wonderful blessings and good news as well.

I guess the best way to say it is to just say it. We confirmed through some tests and dr appts over the last several weeks that my cancer has returned.

That being said,  we have so much to be grateful for.  Good news is that right now it is isolated in my right hip/pelvic bone.  Good news is that my MRI confirmed that the cancer has not spread to any organs.  Good news is that there have been tests and labs and procedures to help us know exactly what is happening.  Good news is that cancer is same as before,  so the drs know exactly what treatments will be needed.  Good news is that I will not have to go through surgery or radiation. Good news is that I will have 2 meds and 2 injections that will be on a tight schedule over the next 2 years (min) and I will 99.9% not need systemic chemo like before. Meds and injections will be my chemo and support plan to protect my bones from further spread and to keep my bones protected from fractures. Good news is that I have 2 teams of amazing drs who are keeping in touch with each other and with us.  They have been honest and upfront about everything. They have taken as much time as needed (has been hours ) to talk with us and answer every question and explain every test result.  Good news is drs are hoping for minimal side effects. We will baby drugs a bit at a time and they will be watching me very closely.  Good news is,  that this time,  I know I can depend strongly on our ward family knowing all of our immediate family is far away.  Good news is that all my care will most likely all be in one bldg (new cancer center is gorgeous) instead of bouncing to several offices.  Good news is that beginning treatment etc will be going on during summer when we have a very relaxed schedule.  Good news is that Preston/Bro Baxter will be very available to help me as needed. Good news is that Preston/Bro Baxter has created a blog to post all of our updates. For our missionaries I will try hard to turn those posts into PDF files to email them to you.  Lmk if you would like me to do that? Good news is that,  hopefully,  most of regular activities, should still be attainable. Good news is that I can trust in priesthood blessings to help me feel at peace and I know that those words can give me strength and let me share my testimony with others because of the words and peace those blessings bring to me and our family. Good news is that our new goal will be to follow Elder Wirthlin's counsel - "Come What May & Love It" - we can work hard to focus on laughter and joy,  focus on having an eternal perspective,  focus on blessings and tender mercies,  focus on leaning on and turning to and trusting in heavenly father and the Savior, focus on finding evidence that adversity is a blessing in our lives to help us learn and grow during this mortal experience.

We know that things are going to change,  we know things will be very difficult at times, we know that sometimes it will feel like we are going backwards.  But we also know there will be great joy and laughter and miracles and tender mercies.  We know there will be sunshine and rain - how else can you make a breathtaking rainbow? We know that we can strive every day to do and see good, and to show gratitude to all those around us,  and come what may we will strive to love it.

Know that we love you so much. Know that we will do our best to keep you updated.  Please know that you can ask any questions that you have. We will do our best to answer them. Will write more soon.

Rory/Sis B/Momma Baxter

Today was our marathon meeting with the oncologist. I'll attempt to explain everything we talked about.


The first part of the appointment was actually Rory talking with the PA about her (the PA) upcoming sleep study appointment. One of those moments where she was able to share her experiences in a very personal and helpful way to alleviate some uncertainties and unknowns for someone else.

After that, Dr. McGregor came in and talked us through everything. Since she had called last night, there wasn't a ton of brand-new groundbreaking information, but it was a really good appointment. I got to ask some questions, Rory had her concerns heard, and we started making some plans. Here's the very brief version; anyone interested in more is certainly welcome to email me and ask any questions you would like.

Rory's breast cancer is what they call "estrogen receptor positive." This means that the cancer growth is supported by the presence of estrogen in the body. One of the main drugs she has been taking since all the excitement a few years ago is supposed to block the ability of specific hormones to bind into the estrogen, also blocking the growth effects on the cancer. However, cancer cells can be real buggers sometimes, and they can continue to float around in the body, nearly starved but still barely alive. They can eventually get really clever and find ways around the medications, set up shop in a new location, and start growing again. This is what happened to Rory, and some of those colonist cells started terra forming inside her sacrum (part of the pelvis bone). Fortunately a somewhat unrelated scan detected their presence. We also found out during today's meeting that a recent blood test had shown a slight increase in a marker protein, so there were "little red flags" also being raised within the treatment group.

So, now that the biopsy has confirmed that it's the same breast cancer cells, and that her liver is "clean," we can proceed with the next treatment. This will eventually be comprised of four new medications. (Remember this is just a summary ... if anyone has more detailed questions you are welcome to shoot me an email and I'll be happy to respond. If enough people ask the same question I'll probably share more on this blog.)

Even though it has apparently lost some of it's effectiveness, Rory will continue to take the receptor blocking medication that she's been on for awhile now. It's still effective at blocking many of those receptor sites, so that is going to continue for awhile. Eventually the Dr will move her over to another drug that will stop all estrogen PRODUCTION in her entire body. I learned today that in addition to the ovaries, other parts of the human body also create estrogen (or compounds that are converted into estrogen). So even when the ovaries are done doing their thing (post menopause), in cases like Rory's it will still be important to stop the muscles, thyroid, and other areas from continuing to make estrogen which will keep that blasted cancer from growing. The good thing is that medication will be a once-per-day pill which replace one of the meds she is currently taking.

For now, Rory will also be getting a monthly injection of a medication designed to tell the ovaries to stop generating estrogen. Some women opt to just have their ovaries removed rather than go through the injections, but for now at least we're going with the medication option. Interesting that for cancer patients, they don't consider women to be fully menopausal until age 60! Dr. McGregor said she doesn't usually wait that long, meaning she's not expecting 16 years of monthly injections, but they can monitor her blood for estrogen using blood tests, and they want that hormone to be NON DETECTABLE. This is one of the tools to help make that happen.

Besides simply trying to "starve" the cells of estrogen, they are going to proceed with chemotherapy to actually attack the cancer cells in the middle of their growth cycle. Now that she's in what is called "Stage IV" cancer, meaning it has spread to organs beyond where it started, they can use a newer form which is an oral pill. That's right, kids ... no intravenous transfusions! Last time they would super-dose her body with the chemical cocktail about once a week, followed up by an injection to try to encourage the bone marrow to regenerate. This process will involve a daily oral dose of the chemicals for 3 weeks, followed by 1 week of "rest" for regeneration. Before starting the next cycle Rory will have blood tests done to check the normal things like red and white cell counts, neutropenia (looking for a minimum number of immature white cells), platelets, any detectable estrogen, special protein markers that can suggest cancer is growing, cholesterol, etc. Assuming all the levels are acceptable she'll do another 4-week cycle. This might go on for as much as two years or even more.

So the concept seems to be similar to the more traditional chemo, where they want to drop an atomic bomb on the cancer knowing there will be collateral damage that needs to be repaired, but this time they are going to use micro bombs for 21 straight days instead of one mega blast per week. Think "cluster bombs" instead of "hydrogen bomb." There will still be some of the same symptoms (nausea, fatigue, stiffness, and more) but hopefully at lower and more tolerable levels. Also, once the dosage is figured out there shouldn't be blackout periods where she can't be around people. This is the $10k per month medication I posted about yesterday, but it sounds like although these oral chemotherapies are relatively new, they have been around long enough that insurance companies will cover the costs. They are distributed by specialty mail-order pharmacies with pretty tight shipping controls. I wonder if they will be delivered by armored vehicle? Plan is for that medication to start by the middle of next week.

One of the unfortunate side-effects of the oral chemo is that it causes a degradation of bone density (similar to osteoporosis), so there will be a monthly injection of another new medication to help improve the bone density, or at least to slow down the degradation. The hope is this will also help prevent bone fractures. Some people experience hair thinning or even hair loss, a la traditional chemotherapy, but most do not. (I guess I won't be taking the BIC to my head in solidarity just yet.) Some of the other traditional nasty chemo side-effects are likely to come up, but hopefully not nearly as severely as last time around. However, this is going to be a rather long-term ordeal.

Well that's about all I have for now. The medical assistants and nurses and financial people are going to be making their calls and getting everything set up to start the next treatments on Wednesday, 29 June. We're not really good at waiting around for stuff like this, but there isn't really much choice. We are especially thankful to have doctors and nurses who are so willing to take a personal interest in Rory's care, and for the facilities and new therapies that are becoming available.

What are your questions? Shoot me an email ...

Interim Update

Rory called me to try to share some information. I am totally not keeping  up with everything she is telling me right now. After her liver MRI this afternoon (more details on that later, from her) and with the bone biopsy results available to the doctor, the oncologist decided to call and talk today even though we're meeting with her again tomorrow.

Good news: MRI (liver) is clean
Bad news: There is cancer in the bone
Good news: It's her old breast cancer

Seems odd to think that breast cancer is good news, but this really does simplify things going forward. Rory will update or edit or reply to this with more of the details, but it sounds like the main treatment for now will be some new medications. Unfortunately, one of them is $10k PER MONTH! Yeah there will be some "discussions" on that when we meet with the doctor tomorrow.

This comes after Kylan had teeth pulled in the morning to prepare for coming orthodontic work. What a day!

Update from Rory on Facebook:
We have been waiting for some test results. We still have an extra long dr appt tomorrow, but at this point, feel like we can share. Cancer has been found in my pelvic bone. It is same cancer as before. My Dr is hopeful that she has go-to drugs that hopefully will keep me from full on chemo, at least for now. She is hopeful and happy at the confirmation of this cancer type vs having to fight something different. She feels very positive and called personally to let me know. I am so blessed to have good drs. I know that this will be a fight, but it will be a fight that we can win - again. 
Preston is building a blog to keep all of our updates current. Lmk if you would be interested in access to our blog to keep up in our adventures. I know it is going to be a hard road, but I also know that it will be ok. More to be posted soon k

Sleep Study

The weekend was a good one; Rory even felt good enough to go with the kids to a showing of "Finding Dory" hosted by the orthodontist in Corvallis.

She also got a surprise phone call saying that they had an opening for a Sleep Study on Sunday night. She's done that testing several times, but she hasn't been able to use the CPAP machines for very long before she would return to nightmares and problems with air down the wrong tubes. I'm glad to hear that last night apparently went VERY well, with some new nasal-only attachment instead of the full face octopus. Rory said she slept the whole night, REM looked good, etc. So maybe a glimmer of hope for good things to come? :+)

Biopsy Day

As we were pulling away from the house we had a bright rainbow over the hills. Had to stop to let Rory get a picture. Then she kept taking pictures of the sunrise ... I'm not sure it was anything special, except that she doesn't usually get to see them. :+) Got to the hospital at 6:25 for the 6:30 check-in, and by 6:40 we had been walked down to the office for the procedure. All good signs getting this day started!



For the blood draw Rory got a phlebotomist she hadn't seen before. He let her chat the whole time, telling stories about the girls and their recent trip to Houston. She just kept right on talking through both of his two standard attempts. As he walked back through the nurse's station, we heard him say, "Well, darn!" They don't normally make a third attempt, but he seemed a little peeved with himself (he said phlebotomists sometimes take it personally when they miss!) and came back with another hot pack. Third time was the charm!

Almost exactly that same time the procedure tech started talking about what was going to happen, and 30 seconds later the doctor was there. They actively use the CT scanner to guide where the needle is inserted. It was interesting they used words like "drop it in" and "insert" rather than anything invasive. After the doctor made it sound like she essentially wouldn't even realize anything was going on, the tech told her that it would really be like a little bee sting, numbing meds, then another little sting as it advances, followed by numbing meds. Apparently the bone part doesn't numb very well, so that's normally the most uncomfortable. The whole procedure was supposed to be 10-30 minutes. According to the nurses there might be 1-2 hours of recovery, and according Dr. Optimist we'll be on the road for home 20 minutes after getting back from the procedure.

Sure enough, Rory was back to the prep room after only about 15 minutes. It was "a little more than a bee sting" but the only external evidence is a standard bandaid. No biggie! We were back home by 9:30.

The fates apparently knew there was a small window of time where we don't currently have any medical things scheduled, so Rory got a call the sleep center to say they just had a cancellation for this weekend. Sounds like another sleepover for her at the hospital on Sunday....

Rory update

Hope everyone is not too overwhelmed by our continued medical epistles. Preston is doing an amazing job keeping updates going!

Just a couple clarifications

1- check up at urologist was ultrasound vs xray, at first. My Dr tries always to go for least amount of radiation because of my history. It didn't show clear pict of what we needed to see, so I asked for xray. I got a personal phone call from my Dr late that night to tell me she was not happy with what the xray showed and that she was turning it over to my Dr and my oncology team. I saw my Dr and oncology dr that same week,  which led to lots more labs and tests. During this time I was also having severe, very painful muscle spasms in my right thigh that had no apparent cause. All of that led to continued appts.

2 - My MRI on Tuesday is an abdominal test specifically looking at my liver. There were hot spots that showed up on the PETScan. My kidneys are "cold" like they should be. Stones are definitely still there,  but are not a concern at this time. Drs are wanting an MRI so they can focus on a very specific area and so they can see exactly why the hot spots are showing up.  All the results from MRI and biopsy will be ready for another appt next Wed to discuss a go forward plan. I am SO glad to have my oncology dr back. She will take good care of me,  and I know whatever happens she will fight hard with us. She is a great dr and a great person,  I am so thankful to have her on our side

Rory update

All,

Rory and the girls had a great time in Houston!

Today "reality" reared it's head as Rory and I met with the oncologist. Dr. McGregor has been out on maternity leave, and it sounds like today was her first day back? It also sounds like she's double-booking on purpose right now to meet up with her patients again, so we were glad she spent so much time with us. We were obviously the last appointment of the day, as the office was empty and lights were off by the time we left.

There have been a flurry of messages about appointments and tests and procedures, but it wasn't until today's in-person appointment that it's all starting to make sense. Maybe before I get to the end of the story I should start again from the beginning.

Several weeks ago (probably over a month by now) Rory started getting what she called "Charlie Horse" pain at the top of her leg. It would sort of hit her out of the blue, for no apparent reason, and would make it impossible to stand up or walk. Looking back, that's probably what started things in terms of getting her urologist involved in checking into possible kidney stone or other issues. She had an ultrasound which confirmed all her "rock garden" is still in there, but none of them seem to be moving or dangerous or an explanation for this muscle pain she was having.

So an x-ray was done the day after she got back home from SLC. My understanding is they still weren't worried about the kidneys, but something in the scans looked a little "off." Rory met with someone on the oncology team (not her regular Doctor) in late May, and has been meeting with others on her team as well. At that time they were thinking she had some sort of degenerative arthritis in her hip / pelvis, and got her a referral to a local specialist. That appointment was finally scheduled to happen next week, but it sounds like that might not happen. They also scheduled a PET scan which is a full-body image using special dye to allow the doctors to see locations where glucose is being metabolized. That scan was done on 2 June, just a few days before Rory and the girls were scheduled to leave for Houston. Her doctor was supposed to call back with results, but she was also scheduled to be in a medical conference over the weekend which probably explains why she did not call. We figured if there was something serious, she would have figured out a way or time to call.

Many of our body's functions and organs are expected to shine brightly during a PET (brain, tonsils, heart, etc). Most areas don't show up hardly at all. Cancer cells, which are furiously growing, show up because they are using sugars to fuel their replication. So finding "hot spots" where they shouldn't be, plus not having kidney stones as a likely culprit, plus her history of cancer, eventually all led to the team deciding this is probably cancer of some kind. The call finally came through to Rory just as they were landing in Houston; of course there was nothing to be done right then. I also got a call from the office, which I emailed about earlier.

So today we were finally all back in town; Rory, me, and Dr. McGregor. She pulled up the scan images to show us on the computer, and pointed out the things the team had been seeing. She explained that the next step will be a bone biopsy (including the marrow) on Friday, along with some calcium level and other blood tests. The procedure is supposed to be out-patient, but patients sometimes wind up with a little bit or even full anesthesia, so I'll be there with her. Our two neighbors who went through actual bone cancer both described the biopsy a very hard process, but per Dr. McGregor most patients don't have nearly so bad a reaction. Obviously we'll see for Rory. Interesting that they do the procedure using live CT imaging, so they can get the sample from exactly where they want, watching "real time" on a video feed. They should have results from the biopsy ready for our next in-office appointment scheduled for 22 June. 

Tuesday of next week Rory will also have a kidney MRI. During the PET there was slightly-elevated levels of activity in a kidney, so the doctors want a really good look at that area to try to rule out anything nefarious. Dr. McGregor said she really didn't think there was anything going on there, but just wants to make sure. Those results will also be ready for the in-office appointment the following day.

Signs are pointing to, and hopes are that this is still her breast cancer (seems odd to think she still has "breast cancer" after a double mastectomy) that is finding a new place to live. The biopsy will confirm that. It will also tell the doctors whether the cancer has lost it's estrogen receptor, meaning that her current medications are no longer effective against it and she'd start on something different. Or the biopsy might show that the cancer has changed into another type, perhaps the "triple negative" that others we know are currently fighting. Or, it could be her cancer has somehow found a way to keep the medication from inhibiting growth somehow, perhaps because of the location where it's taken hold. And of course, the biopsy could show it's something completely new and different.

Based on what is currently known, Dr. McGregor is expecting to find it's the breast cancer again, and that Rory will be on a new medication to start. She said people do best when they have multiple therapies, so chemotherapy was again discussed. Radiation is not being considered right now because as an adult, most of her bone marrow is created in the pelvic bone structure and irradiating would destroy a dangerous percentage of that precious material. Also Rory is in absolutely no pain right now, so this "bone abnormality" doesn't warrant using that therapy at this time. Since the growth is inside (not on the surface) of the bone, surgery is also not being discussed as an option. One part of the therapy will likely include medication to strengthen her bones, and another part will actually reduce the amount of calcium being generated ... silver lining for someone who makes way too many calcium phosphate kidney stones! Dr. McGregor also said that we should absolutely keep all our plans for December ... whatever therapies might still be going on at that time, they can and will schedule a 3-week "break" so we can all be at the reunion. :+)

Right now this information is being kept rather confidential, only going out to family and work supervisors. I'm going to collect all of this in a new blog (http://fightgoeson2016.blogspot.com/). When Rory is ready to share with more people, I'll share the link to that blog more freely. For now, only a few people are getting this information, which is probably best since we don't really have concrete answers or plans yet. I'll be happy to answer any questions that anyone has; please don't be too frustrated if most of my answers include the phrase, "We don't know yet."

So we're still "on hold" for another week until all these test results come back. More updates when I have them!

9 June email to family

​This afternoon a doctor from the Oncology office called for Rory. Apparently the person who talked with Rory late on Monday hadn't yet communicated with the other doctor that the conversation happened. After confirming that, I asked whether she would talk with me, and she agreed.

Apparently Dr. Garley works in the same group as Rory's regular Oncologist (who is still out of the office), and has more than 30 years of experience in the practice. She confirmed that the PET scan and other blood tests point to cancer, BUT probably not a "new" cancer (such as one of the various bone cancers). Instead, she thinks it is Rory's previous cancer that is finally expressing itself again in a new location. Sounds like that is actually very normal, expected, and why they do these follow-up checks. It also means that the meds she has been on since her first treatments aren't doing their job any more to suppress the cancer, so it's likely time to move on to the next one on the list. Her summary statement was something along the lines of, "This will be a change, but not an end-of-life type of change." 

All of this is conjecture, albeit educated conjecture, and will be confirmed by the biopsy. Sure made me feel better, although we won't know for sure until after next week's follow-up appointment.​

7 June email to family

Hey parents and siblings,

Two medical updates:

1. Kylan and Kelsianne started running fevers last night and had sore throats today. They never got to the point of vomiting, so the Dr. office said to bring them in to check for Strep. Preliminary screening was negative for strep, so he thinks it is some sort of virus. They say it's typically been lasting several days in the kids they've been treating lately. Keep an eye on your kiddos.
2. Rory got the phone call from Oncology regarding last week's PET scan. I'm sharing this third-hand, but my understanding is there are "hot spots" both in her tailbone and hip areas. She already has a follow-up scheduled with her doctor on the 15th when she's back from Houston, so they will probably do some bone biopsies at that time. Then we'll find out more about required treatments, timelines, etc. We've seen bone cancers a couple of times in the past few years here in our neighborhood, so if that's what it ends up being at least we have some idea of what we're up against.

Thanks for a great weekend. Hope you all stay happy and healthy!