From Ashley: Â I am feeling more energetic and a lot more talkative, so Iâve got some news Iâve been wanting to share and this seems to be the right time. Â Also, beware, itâs November which I now know is Pancreatic Cancer awareness month and depending on how I am feeling, you may hear/see much about that from me â¦ happy fall, yâall.
News BLUF: Â Simon and I are moving to Birmingham.
After the aborted Whipple in September, I did a lot of serious thinking and I came to the conclusion that I really needed to consider what is going to give me the best chance of actually beating this beast and getting my life back to somewhat normal. Â The conclusion basically was that I needed to be closer to specialist care, closer to MD Anderson and their network. After a bit more consideration and so much support from Simon (basically telling me he would do whatever I needed and would be there to support me no matter what), I decided that Birmingham was still close enough to family and friends for me to feel that support which I think is essential for me through all of this but also give me more access to specialists at two different hospital networks – Grandview/Alabama Oncology and UAB (at which my new surgical oncologist at MD Anderson studied) as well as better options for more direct flight options to Houston through the Birmingham airport without the extra drive to worry about too especially when I am feeling quite unwell.
What I didnât immediately realize is that this move also allows us to downsize our lives and de-stress in many ways, which has lifted my spirit in ways I didnât even know it needed. Â We have secured an apartment in Birmingham and the knowledge of knowing we donât have to worry about yard work or many other homeowner concerns has made this seem even more like it was meant to be, at least for this season of our lives. Â
Unfortunately, I did not make the decision to move quick enough to get moved in before having to start this round of chemo which was my ultimate goal to begin with (but when they say start the chemo tomorrow, you just go ahead and start and hope the rest will work itself out), so we are doing our best and making the most of my good days to move bits and pieces so that hopefully we will be mostly settled in time for the next step, which we should learn what is at our next appointment at the end of the month. Â For now, I am living a half n half life between HSV and BHM. As for Simon, being the ever amazing responsible man he is, quickly secured a job in Birmingham so that he could continue to provide for us and as such is mostly living there and removing the potential of even more financial stress from our lives. Through this transition though, my Grandparents and my in-laws (though at this point I really wish there was a better way to describe them than in-laws as they are simply family, family I couldnât imagine living without) have been super supportive, coming and staying with me during my chemo weeks and making sure that especially while I am sensitive to cold, someone is here to walk Cooper on the cold mornings and evenings, and just simply being an ear to listen while we make this difficult transition to something we truly believe is hopefully going to make the difference between quality life and death for me.
Had an appointment with Ashleyâs oncology team this morning and her blood counts are still quite puny so they are are putting chemo on hold for a week and giving her a blood transfusion in the morning hoping that will perk them up enough to continue treatment next week. Â This will be her first blood transfusion ever, so we shall see how this goes – hoping for the best!! Hoping this extra week âoffâ gives her a chance to gain a little more weight too. 44 pounds lost this year and still losing is not exactly what the doctors find pleasing at the moment and actually itâs not pleasing to Ashley either. Â Got to figure out a way to stop the weight loss train â¦ so maybe this extra week off will help!
Ashley has completed 2 out of the 4 doses of the Chemo regimen currently prescribed – we did finally get the prescription from MD Anderson! Â We are halfway through to the next CT scan to recheck the tumor, which is scheduled for the week after Thanksgiving. But this means we are also at the critical juncture of where this combo went all wrong last time â¦ dose 3. Â This time leading up to this, what feels like a critical moment to persevere through, has been emotional.
The emotional fatigue of having to endure this harsh Chemo regimen is obviously affecting Ashley in addition to the actual physical side effects. Â She is experiencing many of the same side effects as before, but it seems this time she is having to work so much harder to bounce back on her âoffâ weeks, as she calls them. Â As one of Ashleyâs wonderful nurses mentioned to her, itâs unfortunate and hard to watch but the point of Chemo is to circle you around the sink drain so close to the edge that you almost fall in but donât – this definitely resonated with Ashley and help her deal with the frustrations of feeling physically horrible.
However, her oncology team has been pleased with her overall health though they are taking a few precautions. Â One of the main areas we are monitoring is her blood counts – whites are doing fantastic (thanks to Neulasta), reds are lagging, and platelets are just plain failing. Â Since this is the case this go around her care team has decided to put her on alert for possible blood/platelet infusion if need be and they are regularly typing her for quick access to blood, again if needed. Â (Side note, when she learned she was type A+ she was naturally quite pleased and probably if you know her, even just a little, this is of no surprise.)
So basically the current status is we have her âonâ week where she progressively feels weaker and sicker, then we have her âoffâ recovery week where she is having to work hard to bounce back to have enough energy to start it all over again. Â And itâs been rough this go around. But hopefully, if it is this rough on her, it is wreaking havoc on that tumor too. Hopefully. Until we know, we are taking it one day at a time and trying our best to keep afloat.
Still no update on an official chemo decision from MD Anderson, but Ashleyâs local oncologist was nice enough yesterday to agree to go ahead and start her on some sort of treatment (which can be modified at any time as soon as we hear something from MD Anderson) so we did not continue feeling like we were waiting indefinitely while the tumor just keeps on growing. Â And we are still completely understanding that the new oncologist is working best she can to gather all of Ashleyâs previous treatments / scans and read them all to make the best educated decision for Ashleyâs care going forward and we are definitely willing to take her advice once she is able to make her best educated decision, but the waiting is made much easier knowing that Ashley is getting something at the very least to keep the tumor from growing in the meantime.
So, interim plan has Ashley starting FOLFOX today! Â This is going back to the very original crazy effective chemo WITHOUT the one chemical Ashley had the horrible reaction to. Â So fingers crossed that Ashleyâs body reacts OK to this combo without the one component we know her body hates. This treatment will have Ashley sitting for a few hours getting treatment every other week at the local cancer facility and then going home with a pump that continues to provide chemo treatment over 48 hours wherever she goes. Â One week on, one week off. Here we go!
Ashleyâs appointment at MD Anderson with the Medical Oncologist did not lead to any definitive treatment plans just yet even though we were super hopeful to have had that information by the end of the week but here we are on Saturday not knowing much more than we did on Tuesday â¦ so still we wait. Â Hopefully more information to come sooner than later, hopefully.
Ashley and I are on our way to Houston right now. Â We have an appointment with the medical oncologist to determine the next steps. Â We plan to be back tomorrow if things go as scheduled.
Ashley and I are on our way back home, early this morning we got to meet with the surgical oncologist and his staff. Â We learned that the tumor is definitely stage 3 (locally advanced) and that it involved the SMA artery which means it is non-resectable at this time. Â He said the tumor was resectable in late July based on the CT scan but it has grown rapidly. The only path forward at this point is even more aggressive chemotherapy, the SMA artery cannot be replaced so the tumor has to come off that location. Â We are working to get an appointment with the oncologist at MD Anderson to begin treatment as quickly as possible.
Ashleyâs long day of tests and drinking a lakes worth of water is over for this visit. Â Bright and early tomorrow she gets to meet her surgical oncologist and determine next steps.
Houston, hopefully we donât have a problem!
We have arrived in Houston and Ashley has several tests, scans, and appointments scheduled over the next two days and we are looking forward to hopefully some good news again. Â In any case, we will keep the blog updated as we get information to share. Thank you to all who are helping us particularly on this part of our journey!
Ashley did have an appointment this morning with her home oncologist and the main thing we learned is her red blood and platelet counts are down and her pancreatic and liver enzymes are elevated – none of which is particularly good, but it all aligns with the results of Ashleyâs most recent CT scan which indicated where her tumor had grown to was also putting pressure on both the Pancreatic and Hepatic (liver) ducts in addition to being closer to the blood vessels in the area.
Fingers crossed for relief of symptoms and additional treatment options!
Better news: Ashley has an appointment at MD Anderson next week! Â Grateful that we got the referral and got an appointment really quickly. Â Tuesday we will be going through the registration process and Ashley will be undergoing some more testing – blood work and a CT scan at the very least and Wednesday we will be meeting with her newest oncologist. Â We will let you know more as we know more.