Wow. It has been just a bit since we last updated y’all – time flies sometimes doesn’t it. We are going to try to keep you all more up to date on here as we go forward. As for right now, there have been a few updates on Ashley’s progress since mid-January but will share the highlights now.
Since January, Ashley has had another CT scan which showed that at least one of the lesions on her liver is growing and at a fairly decent rate of growth (1.1cm diameter to 1.7cm in 4 months for one of the them, the other is holding fairly steady at about a cm), so they are now fully convinced it is metastasis of the primary pancreatic tumor and that Ashley is definitely considered Stage IV.
Her doctor suggested palliative care chemo which she started a little over two weeks ago with the understanding from her doctor that it should only affect her quality of daily life for a day or two. But unfortunately with Ashley’s body being in a generally more weakened state, the first dose knocked her off her feet for 8 days straight. She was getting so antsy towards the end of it, being basically bed ridden from the bone pain from the chemo and the subsequent white blood cell regeneration medicine that it was just sad to watch and really no way to “live” until you die with being out 8 days out of 14. Thankfully her doctor agreed and Ashley will be forgoing any further treatments in order to make the best of every day she has left – as one of her counselors once encouraged her, she has finally really decided to live in the present, the here and the now.
Estimated time of survival is still about the same, with the final decline probably occurring sometime between December and March of next year – of course this is an estimate and anything could happen, so she is not hanging her hat up on anything and taking each day as it comes.
Next up is making some decisions regarding her care at the very end and one thing we can do now is select a hospice care company so that we know who to call on when she starts to really decline. We are not at that point yet and hopefully we are nowhere near having to use that option but it will give us peace of mind knowing it has been chosen and we know who to call if we need it. We are touring one in-patient facility this week that has at least one major perk of being pet-friendly, so here’s to hoping the tour goes well and it proves to be a viable option!
Well this year has certainly not started the way we wished it would have, starting with Ashley turning yellow again and noticing it on New Year’s Day … 2 days later on January 3rd she got a new longer stent put in place because the tumor is now putting pressure on her common bile duct in a different place than where the original stent was placed, so hopefully this will cover more of the bile duct and give Ashley some relief from the jaundice and the effects of increased bilirubin in her system – and so far we have noticed it is worked – woohoo! Thankfully I noticed the yellowness apparently quite early on and she didn’t suffer nearly as much as she did a year ago, the first time this happened. She did have a couple days of itchiness but thankfully she indicated it never escalated to the point of being unbearable for which it appeared she was very grateful!
Last week was a bit of a rough week for her though with random little accidents which she described in her Facebook post last Friday – but in case you missed it, I’ve pasted it here below.
After that post though, she did go and have a great time at her friend’s birthday getaway but she woke up Sunday with a fever that kept rising (eventually peaking around 103.5!) – now while she could have taken Tylenol to break the fever, they highly recommend cancer patients not do that so they don’t mask the infection and it potentially get worse. So once Ashley got back from her little get away with her friends, we went directly to the hospital ER as directed by her oncologist. Thank goodness we had figured out Ashley’s care team in Birmingham before all this happened because it was as smooth as it could possibly be.
So, as it turns out she has an infected common bile duct that more than likely occurred during the new stent placement a week and a half ago as the instruments to do that procedure have to go through the stomach before getting to the duct. Sometimes stomach bacteria can be accidentally transferred elsewhere with this procedure and the other areas the instrument transverse through aren’t used the bacteria like the stomach is and can cause an infection.
Ashley has been in the hospital on IV antibiotics and all sorts of other meds since Sunday night but it looks like we might get discharged later today as Ashley is feeling much better. They will be sending her home with oral antibiotics; however, they are still going to monitor her blood cultures for the next couple day to see if anything grows and make sure the infection didn’t spread into her blood. If anything shows on those cultures she would need IV antibiotics rather than oral and in that case her oncologist said he would suggest setting up a home health nurse to come to our home and administer the IV antibiotics instead of having us come back into the hospital!! Which of course sounds better to us.
So as of right now this is what we know and we will keep y’all updated as we know more.
Ashley’s post on Facebook last Friday with a mini update of her week for those who may not be on Facebook or may have missed it:
Have had a sorta rough week – not chemo rough but everything else rough. Trying hard not to whine but goodness I am ready to have a normal week – and maybe this weekend will be just that – birthday road trip for one of my besties dirty thirty!! Started off the week with Cooper accidentally bumping into my hand holding my phone causing it to fall just right to give me an awesome looking bruise right under/beside my eye, then followed by a day of the worst feelings associated with being constipated for 6 days (sorry if that is TMI, but this is unfortunately my “new normal”) – by day 6 I am so over it and grumpy about it and the fact I have to take something harsher than I would like cause it’s gotta come out, followed by completely wiping out in my kitchen yesterday morning and hitting hard on the right side of my pelvic bone and my head. Laid low yesterday to monitor and just be sure but woke up this morning practically sore all over – this body isn’t built to handle all this any more lol. Packing a donut for my painful rear – determined to have a fabulous weekend regardless!! 😂 Gotta find some wings in Nash-Vegas this weekend to help a girl out!
Somehow we have found ourselves in a new year and Ashley’s birthday – happy birthday to her! Given that it is the new year, we wanted to give y’all a little bit of an update.
Unfortunately, Ashley has taken a little turn for the worse the past couple of days and today it has become apparent that her jaundice that started this whole ordeal has returned and Ashley feels quite ill again with all the extra bile in her system. We are going to try to get her in to the local Birmingham hospital (the whole reason we moved to Birmingham to begin with, so her plan is working!) tomorrow or Thursday to get her stent replaced. They did warn us when they first put it in at the end of January last year that they only tend to last a few months – so we did get more use out of it than expected. However, we are hoping to get a replacement ASAP and get Ashley to feeling great again in no time.
Ashley does have a regular check up later this week with her new oncologist in Birmingham and we are hoping that he can provide us some suggestions for palliative care, so as always we will be back with an update as we have them.
Happy New Year!
Just got done with our appointments in Texas at MD Anderson and we want to quickly share with all that have been following and supporting us, that the appointment did not give us the news we wanted to hear. Though, we will be posting more about what we are deciding to do soon.
The basic gist is the harsh chemo Ashley has been taking over the past 9 weeks did not shrink the tumor in the right place and that chemo is the harshest they’ve got and was our best bet. In addition to that her cancer has spread to her Liver and she has simply lost too much weight, she weighed 92.5 today. Ashley’s surgical oncologist was very honest and frank with us and said the likelihood at this point to be eligible for the critical surgery is basically nill – of course miracles happen, but we are choosing to be practical and pragmatic.
So where we stand is Ashley is now Stage IV Pancreatic Cancer and her life expectancy is about a year, so we are planning to make the most of the time we have and focus on quality of life above all else.
More info to come as to what we decide that means for us.
From Ashley: I am feeling more energetic and a lot more talkative, so I’ve got some news I’ve been wanting to share and this seems to be the right time. Also, beware, it’s 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 … happy fall, y’all.
News BLUF: 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. 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 didn’t 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 didn’t even know it needed. We have secured an apartment in Birmingham and the knowledge of knowing we don’t 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.
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. 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 couldn’t 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 Ashley’s 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. This will be her first blood transfusion ever, so we shall see how this goes – hoping for the best!! Hoping this extra week “off” 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 it’s not pleasing to Ashley either. Got to figure out a way to stop the weight loss train … 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! 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 … dose 3. 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. 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 “off” weeks, as she calls them. As one of Ashley’s wonderful nurses mentioned to her, it’s 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 don’t – 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. 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. 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. (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 “on” week where she progressively feels weaker and sicker, then we have her “off” recovery week where she is having to work hard to bounce back to have enough energy to start it all over again. And it’s 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 Ashley’s 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. And we are still completely understanding that the new oncologist is working best she can to gather all of Ashley’s previous treatments / scans and read them all to make the best educated decision for Ashley’s 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! This is going back to the very original crazy effective chemo WITHOUT the one chemical Ashley had the horrible reaction to. So fingers crossed that Ashley’s 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. One week on, one week off. Here we go!
Ashley’s 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 … so still we wait. Hopefully more information to come sooner than later, hopefully.
Ashley and I are on our way to Houston right now. We have an appointment with the medical oncologist to determine the next steps. We plan to be back tomorrow if things go as scheduled.