We are still in the hospital. Been a lot of tests and scans and things.
Gallbladder – There were no stones in it, and it does have some issues, but the issues are no different than the issues that were seen a year and a half ago by the other GI doctor, so they’ve have backed away from doing anything with the gallbladder for now.
Fluid around lungs – they decided to drain the right lung for now as it was much worse. They did that today and took 850ml out of her right side (3.5 cups, or 29fl ounces, or 2.5 cans of pop) she immediately began crying tears of joy at being able to breathe again, so that was great. They are going to test the fluid to see if they can tell what may have caused it.
She was finally able to eat last night (after a day and a half of no eating/drinking allowed), so that was a big win and helped her spirits a lot.
We were hoping to (and had gotten confirmation) to go home today, but then the doctor said after the draining of the lung they would like to keep her here and do another x-ray tomorrow to see what things look like, so only one more night here hopefully.
Thank you all for your prayers, please pray that this fluid thing is not become a regular thing, and just big praises for how flexible both of our schedules and jobs are to allow us to change things up and be here together.
Quick update – Rebecca has been experiencing a increasing amount of pain on her right side over the last few days that was concerning along with some strange issues with breathing and having some fluttering/gurgling noises. We checked in with the doctor this morning and he sent her to the ER.
So we’ve been in the ER most of the day, and after a couple ultrasounds and an CT scan they are seeing that both lungs have fluid around them, and are probably causing the shortness of breath. They are worried about the gallbladder which appears to be enlarged and inflamed. They talked with GI and doctor and they want her admitted and to get an ultrasound, so we’ll be here tonight. They think that the gallbladder could be responsible for the fluid issues around the lung as well.
More info when we know more, but that’s what’s going on right now. Luckily although she’s uncomfortable with the pain there’s nothing too crazy going on, so we’ll just figure this out and get it fixed.
It’s been about 2 months since the last update. It’s hard to give updates when there’s not much to update. Things have been pretty steady and the same. The answer to the “How’s Rebecca?” question I get asked several times a day is a complicated one, on a day to day thing there’s not much difference, we see her multiple times a day everyday, so changes are not as pronounced and get smoothed out as “normal” over time. Looking 2 months ago to today though, she’s notably weaker and more worn out and tired – both mentally and physically. This could be attributed to the build up of treatment though as we’ve gone non-stop since the end of December every 2 weeks. (11 or 12 treatments in a row)
I had been holding off until the scan that we did this week to see what it had to say to get an update to everyone. Results came in this morning, and it was very positive, so that’s a good thing. AI sums it up better than I can so:
This is a good thing, and I anticipate the oncologist will want us to continue on with the current treatment for now. The lung thing could be several things and is not necessarily a worry. Praise God!
Rebecca was supposed to get treatment this coming Monday, but we told them that she needed to skip a treatment as she needs a break mentally and physically. We will resume on April 13th.
Since the last update Abigail came home for spring break, and hung out with us, the picture above is from going to a movie of our favorite band (Twenty One Pilots) and we had a great time. Also last week (this current week) Annabelle had her spring break and wanted to go visit Abigail during it, so we went up to the UP to visit her at college for 4 days. Annabelle got to go to class with Abigail and we got to go tubing down a big hill. We also got to meet Abigail’s friends, and see lots of snow (if Trump had been there, he’d probably say it was “big beautiful massive amounts of snow, the best brightest fluffiest snow that America has ever seen”)
We were planning a trip to Norway/Sweden/Germany this summer, but we’ve amended plans to instead do a cruise, Rebecca likes that idea better and it will be more low-key and relaxed for everyone.
I feel like a broken record, but thank you all for your prayers and thoughts and love. We feel loved and cared for. We are continuing to be thankful for the time we have together as a family, as well as with our family/friends. Life moves fast, enjoy the moments., they are a blessing.
Happy February – January was pretty low-key (as all the hip kids say, although they probably wouldn’t use the word “hip”) for us. Just busyness with Abigail finishing winter break with us, and getting back into the swing of things after Christmas traveling. We joined a gym, and the three of us have been enjoying spending evenings hanging out and doing healthy things instead of sitting on couch watching tv.
Treatments resumed for Rebecca after we had skipped one (for traveling during Christmas, and to give her a chance to rest from the accumulation). This Monday was the 3rd treatment since getting back on the regimen. Unfortunately Rebecca can already feel the effects of it accumulating after only three treatments though. The list of medications continues to grow, some to counter side-effects, some to get numbers up or down so that she can continue, others for peripheral things like sleep and sores and pains. I think we are up past 10 at this point. Going through the list at doctors appointments is a task.
At our last appointment the subject of Rebecca’s swollen/bloated leg (left leg) was brought up again…. for over 6 months her left leg has been noticeably larger, possibly retaining fluid due to an enlarged lymph node, but that was just a guess. We’ve had ultrasounds to check for blood clots and had people look at CT scans, but that’s all they could come up with….. So last Friday they said we should check in with cardiologist to rule out a possible blockage or cardio-related reason. We saw him yesterday and he doesn’t have any concerns cardio related, but said it seems to be Lymphedema and referred us to a place in woodstock that can help treat it. It’s not been a major issue, but it can at times be painful for Rebecca as the swelling makes it tender and hurts when bending or wearing certain clothing. So we are looking forward to seeing if she can get some relief there.
We celebrate 21 years of marriage tomorrow. Yay! We went out to celebrate (picture above) last week to a fancy italian place in Crystal Lake and got to eat a bunch of very yummy food. It feels crazy to me but Rebecca and I first met more than half of my life ago, I’ve now spent more of my life with her than without her. No idea how she continues to put up with me, probably just one more reason I’m the luckiest man there is.
Rebecca is a delicate lady – ultra-sensitive to any medicine, and can bruise just by looking at her wrong 🙂 – She can also be the toughest and most stubborn woman I’ve known as well. And she’s been working hard to not go down without a fight with this thing. She’s trying to keep a positive attitude and we are doing what we can to use whatever tools we can to fight. Her love and want to be around for me and the girls keeps her in the ring despite how hard it is to be in there. Please keep praying for her as this whole process is a lot, like, a really lot.
Near the end of the book of Deuteronomy Moses was growing older and knew that his time was coming to an end. After leading Israel through the wilderness for forty years he wanted to assure and encourage them knowing the road ahead would be tough. That’s why he said in Deuteronomy 31:6 “Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” God is with His people in every season – that means in the good and high times and in the tough and low times. Please pray that Rebecca feels His presence more and more. The road ahead is not going to get smoother, there are bumps and hills and storms ahead. That’s scary and overwhelming at times for both of us, but we know that God will be there walking with us every step.
Sorry for a bunch of disjointed thoughts, but welcome to Andy’s brain 🙃 . We love you all and often talk of how blessed we are in all of the relationships that we get to participate in. We truly feel loved and cared for by those in our lives. Thank you!
Merry Christmas everyone, and happy new year. December flew by with busyness had by all. Abigail came home from MTU and spent about 3 weeks with us, and we got to take some vacation time together and see a lot of family and friends and spend some good time just the 4 of us too. The above picture is from a museum we visited while hanging out together in Green Bay for a few days after spending a few days in Oshkosh (we may like Wisconsin a lot)
Our vacation finished last week, then Abigail went home Sunday, and Annabelle starts school again tomorrow, so it’s back to reality for all of us.
We were able to skip the last treatment that would have been on the 22nd, so that was a blessing as Rebecca felt much more normal and had good energy for Christmas and all of the events and vacation. Rebecca had a treatment yesterday and it went normal. Last treatment (early December) they had given her a new drug along with the treatment called Emend that really helped with nausea, but it did not really help so much this time as she was nauseous the same day this time.
I think the plan at this point is to keep on going with treatments until we get to a point where they want to do a scan again.
As always we appreciate all the love, prayers and encouragement – thank you and keep it coming.
This week Monday was a busy day with both round 7 of chemo, and a scan to see how things are going.
Today we got the results of the scan and received some good news: It looks like there are no new sites, and no growth of lymph nodes, and in some cases slight shrinkage observed. So that means that the chemo is holding things off well for right now. Praise God
We will be meeting with the doctor next week to get ready for round 8, but the plan is to ask to take a quick rest as the buildup of things is taking a toll on Rebecca physically and mentally. We are wanting to just skip a treatment to let her body catch back up again and let her feel a bit more normal.
We had a great Thanksgiving (I hope you did too) with family and of course the lighting of the square (Woodstock) on Friday night (picture). We are looking forward to Christmas and having some good time together as a family. We’ll be traveling up to Oshkosh to spend time with Rebecca’s family, as well as spending a couple days in Green Bay just the four of us as well.
Thank you for all of your prayers and well wishes and love you’ve been sending our way. We wish you all a very Merry Christmas if I don’t update before then.
I wanted to get an update out as it’s been awhile. Not much has changed, Rebecca completed treatment number 6 this Monday, and is getting the pump taken off right now. We found out that treatments are just going to continue until we know more of what’s happening from the scan we’ll get in another week and a half. So treatment number 7 will happen on the 8th, along with a scan to see how things are going inside. My assumption is we’ll meet with the doctor soon afterwards and discuss whether we should continue on with this treatment cocktail or possibly change again. It was disheartening when we found out that we are going past 6 treatments as we were really looking forward to a break after number 6. All of the side effects that come with this regimen are exhausting, and although there’s things to try to assist with (drugs) they have their own side effects and don’t work completely.
So the pill popping, constant nausea, tiredness, weakness, never ending dripping nose (and now her eyes too), other yucky things I won’t mention, aches and pains, appointments, and then working, mom-ing, and wife-ing on top of that is exhausting…. for me to write out. What it is for her is most definitely more than exhausting. But God is good, and continues to give her strength and perseverance and hope (with a lot of naps in between 😀 )
We’ve been blessed to be sleeping with 4 bodies in the house the last few nights as Abigail is home from college for Thanksgiving break until she leaves Sunday morning. So that’s been really nice to have the family whole. Annabelle and Rebecca and I went to a place called Kyoto (Japanese hibachi) a week or so ago, and had a great time (picture).
Requesting prayer for Rebecca’s continued strength and attitude to stay positive, for her upcoming treatment and test on the 8th, and for her to find some combination of medication to help make her days a bit more comfortable and normal feeling for her body.
My apologies, I had to do a double take when I looked that the last time I posted and update was almost a month ago. Looking at a month like October with it’s 31 days it feels full and long with lots of space to do things both productive and unproductive, but in a blink of an eye (it seems) there is only a sliver of sun left on the month. I don’t like how fast time seems to move these days.
This month was fairly uneventful. There was a pain that started in Rebecca’s left side that led to us getting some scans, but with a report of nothing found and the disappearance of the pain we have chalked it up to the shots she was getting to keep her white blood cell count up. We had treatment number 4 today, and for the first time they said her white blood count was actually kinda high. This is contrast to 2 weeks ago that it was so low they had to get the doctor to sign off on treatment number 3 – was a good thing. Thankfully because the shots 5 times a week were not doing enough they moved her to a single “super shot” (my naming) called Fulphila which is similar to the 5 shots she was getting but seems more effective. The problem that this is solving is that chemo drastically reduces your white blood cells and some other things that could be described as your immune system (I’m over simplifying), so this makes you susceptible to infection and fevers which can run out of control pretty quickly. The medications focus on promoting your bone marrow to produce more white blood cells to help keep your immune system up. If you come down to low they won’t give you chemo.
Rebecca is still pretty normal. She’s definitely more tired these days, and a little weaker, but otherwise is still wanting to work and keep busy with things.
.. and busy we have been – this month has been full we went to a play, had a several day visit from Abigail, went to a nice apple orchard (picture above), decorated our car for a successful trunk or treat at church, a craft fair, some nice date nights, Rebecca has a ministry conference that she attended, Annabelle and I went to fright fest at six flags, and a bunch of other things i’m probably forgetting.
Looking forward – with us being on treatment 4 we are probably a month-ish or 2 away from another scan (the name of which escapes me right now) to see how this chemo is doing in the fight against things. Assuming things continue on track with chemo every 2 weeks I will do an update around Thanksgiving. If anything changes before then I’ll let everyone know.
Rebecca and I celebrate the anniversary of our first date 22 years ago this Friday. 22 years is a lot of time, but I still remember that first date really well. I’m such a lucky man to have snagged such a beautiful and smart girl. I wanted to say how I feel after 22 years with her, but there are just literally not words to describe how much in love we are, and how good that feels. And I’m ok with that, because she knows exactly what I’m not able to describe. And maybe that’s the best non-description I can give.
Last week we visited an ophthalmologist in Evanston and got the all clear on Rebecca’s eyes, and then had a brain scan and that also showed no issues. So Thursday we met with the oncologist and he wanted to move forward regardless of the eye stuff that Rebecca has going on. He wants to get moving with regular treatments and then see where we are at again.
So Rebecca had treatment yesterday. Her numbers though were quite low, but they did treatment anyway and now have her doing 5 shots (wed/thur/fri/mon/tue) to get her count back up (hopefully) for chemo/treatment again on the 13th. Treatment took some time as they were backed up yesterday, it tired her out a lot, and Clarice (what we’ve named the cancer/tumor in her lower left stomach area) was quite angry afterwards (Rebecca was in a lot of pain/discomfort). Today she’s just tired
Good things are that after spending time as a family of 4 together up in Houghton last weekend (18th – 21st) visiting Abigail for family weekend we got to see her again last week for a Twenty One Pilots concert that she flew in for on Wednesday night (picture above). We got to travel around through the UP and see some lighthouses and waterfalls and experience a whole lot of no cell signal while doing it. Also it’s getting colder, and we all like cold more than yucky summertime.
In Romans 5:5 Paul says “God’s love has been poured into our hearts through the Holy Spirit“. God is good and his love that has been poured into our hearts, and the peace that comes from walking with him sustains us and gives us hope of what is to come. Please continue to pray fore Rebecca: for her pain to subside, for her energy to be renewed, for her to have peace in whatever God has in store for her, and for her to feel her heart being filled up to the brim and overflowing with God’s love.
Sorry for so much time going by since the last update. We ended up talking to the Chicago oncologist several weeks ago, and although she had some concern about the gallbladder she didn’t have us change our current path of treatment to switching from FOLFOX to using FOLFIRI. So Rebecca got treatment last Monday. It was pretty much the same thing, taking the same amount of time, just they used a different drug for part of it.
Side effects were also similar (except that she no longer has any cold sensitivity with this new drug – yay!). Still makes her nauseous, and tired though.
We met with the Oncologist today for our pre-treatment. Rebecca mentioned that she is having some strange vision issues in the morning with seeing lights in her vision and some other things. They decided to hold off chemo now on Monday, and we will be instead seeing a ophthalmologist to check her ocular nerve (and eyes in general), and they also want to do an MRI of her brain to make sure nothing is going on up there ( trying to hold back from making a joke here). This is just a precaution though as they feel like it’s probably just a side effect of the treatment, but they want to be sure. So for now the next chemo is postponed to the following Monday (29th).
I’m writing this from the car as we are on our way up to MTU to see Abigail for Parent’s Weekend! We are going to hang with her until Sunday, and then back home late Sunday night. Also Abigail is back in town this coming week for us to all go to see Twenty One Pilots.
Picture above was an impromptu visit to Main Event to bowl a little and play some games with Annabelle.
I’ll provide an update later next week when we know more from doctor visits (probably seeing ophthalmologist in Evanston Tuesday morning, and then we’ll find out if Rebecca has a brain Tuesday evening, followed by oncologist on Thursday).
