It’s been a week.

Rebecca has continued to retain fluid and has been experiencing more and more pain. We had decided to check into the hospital on Tuesday after seeing the palliative care doctor. On Tuesday we went in to the palliative doctor appointment and things ended up different than expected. We changed all of the medicine around and the last few days have now been pretty much pain free. Also she (palliative care doctor) was able to sit and talk with us some more about things that were going on and suggested that going to the hospital may not yield much results with the fluid issues, and would keep rebecca from doing what she wants which is to be at home. She suggested that we see how the new meds worked and how Rebecca felt after that.

Rebecca and I have talked about what she wants to do with treatments and pluses and minuses of things. She decided on Tuesday to stop treatments. There are several good reasons for this decision, but none of them matter more then the simple fact that it’s what she wants.

Because of this we have now changed over to hospice care. We talked with a hospice company Wednesday and started things. Hospice is a bit different than what I remember/thought it was. My limited understanding looked like moving someone into something like an old person’s home and waiting for them to die. It has either evolved from that, or I just never had a good understanding of it. The company has a team of people that will be serving rebecca to make life easier and to make her comfortable. We’ll be doing everything from the house, as she wants to be here (and we want her to be here) with us. So we are getting a bed delivered next week, and the hospice company will be taking care of all of our needs from here out. We’ve already been visited by a nurse that will be coming a couple times a week, a social worker that will be visiting regularly, there’s a doctor I talked with yesterday that will be coming out tomorrow to do a thoracentesis on her left side. They are taking care of all meds and got us things that we had been waiting for already.

Starting hospice does mean that we had to say good bye to the oncology team as we won’t be working with them anymore. It was emotional as they asked us to wait around a bunch of them came in and gave us both hugs and words of encouragement.

There’s a lot of mixed emotions going on. There’s no way to ignore that this is one of the last signs on this road, it says the exit is coming up, and try as I may the brake petal is busted. This is scary and sad and hard. On the flip side this stinky thing has been calling the shots since we found out, and with these decisions rebecca is taking back control over some things that she can. That’s empowering for her and has given her peace that a decision has been made.

Be praying for rebecca. It’s one thing to have faith, and to know what’s coming at some point in the future, it’s another to be walking up the steps to the door. She’s sad, scared, and worried. But at the same time happy to be done with appointments and hospital visits and with us at home. Pray for her to feel God’s presence, to have assurance in what she believes, and to to have peace with what is to come.

Thank you all for praying for and loving on us.

Happy observed 4th of July day. It feels strange that it’s Friday today as it feels like Saturday to me. All I know is I have the day off today and that sounds fine.

We had a great time last week up in Wisconsin Dells for a couple nights and then in Lake Geneva for a night. I forgot to take more pictures, so the above will have to suffice. We really got to give Rebecca’s wheelchair an exercise running all over the place and I was pleasantly surprised that it held up just fine with no issues, and was fairly comfortable for her to sit in whether traveling between places, going in and out of shops, and sitting in at restaurants as well.

This week we were scheduled to have chemo on Wednesday, but at the appointment before the treatment Rebecca decided that she didn’t want to do it. They’ve pushed it 2 weeks forward, but she/we have some decisions to make on whether to continue with future treatments or not. The progression of things and the intensity of the side effects make weighing benefits vs quality of life a hard decision. Ultimately it’s her decision of course as I support whatever she decides, but she could use some prayer on what to do and to have peace with whatever that decision is. When an answer for something like this is not clearcut it leaves a lot of room for doubt and second-guessing and a lot of pressure to not make the wrong decision or a selfish decision. Do I prolong things to stay with my family as long as possible despite the physical pain I’ll need to endure, or do I avoid physical pain by making things quicker, or is that selfish and wimpy, or is that actually better because I don’t have to put them through this as long, what does God want me to do and what’s a good way to honor him through this? Etc, etc (things like that I’d imagine). It’s certainly the hardest decision, and the answer varies per situation/person.

Appetite for Rebecca continues to be an issue. Between a dry mouth that doesn’t want any dry foods, not getting hungry, a bloated and distended stomach, and nausea… she isn’t getting more than 500 calories most days. So weakness and muscle loss is a thing and it makes standing more difficult.

This coming week we have radiation on Wednesday, and then I think 4 more sessions of radiation after that. The purpose is to lessen the back pain that has increased intensity over the last few weeks to be worse and worse.

Medications have changed as current pain meds were not sufficient. We do see a palliative care person this week on Tuesday as well. The goal of that is to find the right meds to deal with some of the pains better and keep some of the breakthrough pain at bay. We haven’t found a sweet spot as either there’s no pain but she can barely stay awake or walk, or there is pain but she can function and think better and the pain makes it hard to sit/walk. Since we can’t find the best option it’s kinda been a ping-ponging between those 2 throughout the days/nights.

Sorry that feels like a lot of possibly negative things, but that’s the update, and that’s where we are right now.

250 years is a pretty cool thing, but makes you realize that we are just a baby compared to some other countries. Wishing everyone a happy 4th of July, and I hope you all get some good time with your families in.

Be blessed!

Welcome back to your irregularly scheduled program. We were able to get through a chemo treatment (yay!) so now there is 2 under her belt with this new regimen. Also they were able to do immunotherapy treatment.

After chemo there was quite a lot of pain for many days (almost a full week), but it finally seems to be subsiding now.

We met with a radiation oncologist a week ago, and they want to start radiation on her back right away. It’s one of her largest pain points, although her stomach and legs have been quite painful lately too. We are meeting with them next week to get setup for a week of radiation very soon (they will do a treatment every day for 5 days straight ant then that is it). I’m sure we will find out more information about that come this wednesday when we meet with them.

We saw her cardiologist this week, and it was a little sad as it’s probably the last time we’ll meet with him. He said that everything looks good and to just reach out if we need anything.

She got her left side fluid drained at the hospital this week and we continue to drain the right side at home every few days.

Today we start our week of vacation, so we are looking forward to doing a quick trip to Wisconsin Dells and to Lake Geneva. With Rebecca not being able to walk very much we’ll be trying out using a wheelchair at most places so that should be interesting. We took it for a spin yesterday at Three Oaks and it went well (picture)

Quality of life seems to have changed quite a bit in the last month. Rebecca spends the whole day and night on a chair. I sleep on the couch next to her at night. She’s on pain pills pretty much all day. Walking continues to be harder and more painful as she gets weaker and the disease progresses. Pain and pain management mean it’s hard to concentrate and that also means lots of naps throughout the day. We are hopeful now that we are in this chemo regiment and with the upcoming radiation planned that we may be in for some more days where she can say “this has been a good day”. But the trajectory is hard to ignore and it weighs heavy even on the most positive and hopeful thoughts.

I’m thankful that it is summer, that the girls are home with us, and that we get this next week to hang even more than usual. Prayers for things to go ok with our short travels, for rebecca sleeping in a bed (at the hotels) to be able to be made comfortable, for wheelchairing to work with what we’d like to do on vacation, for us to be able to be flexible if things don’t go as planned, for us to have some more good memories cemented, and for rebecca to have as many more times as possible where she can lift out of her ailments and pain and have some joyful moments.

Updates sometime later this week, probably with some fabulous photos of the vacationing Suarezes.

Love you all.

Last week went a little different then expected. Instead of treatment on Friday we were the beneficiaries of a all-inclusive hospital stay. When arriving to treatment Friday rebecca was a bit short of breath, and remarked that her chest had been feeling more pressure for the last day. This kicked off an ER visit and then Friday evening she was admitted. They drained her left chest area (as it had filled back up with almost 900ml since being drained 9 days prior). They also drained the right side (as we would have done that at home), and we noticed that we are able to get less and less fluid out of that side. The pulmonologist mentioned to us saturday that it may be the the catheter is causing inflammation and “pockets” on the right side and that may be helping to keep the liquid out. She got released saturday evening, so we were thankful to be able to attend church together Sunday.

We had labs and appointment with the oncologist today before chemo tomorrow (Wednesday). During this visit it the nurse said that both her and the doctor both strongly advised against doing the cruise due to the issues Rebecca has had recently. It sounds like Rebecca has also been having some doubts recently and was worried about what would happen if an issue came up on the cruise also. So cruise is off. The girls were very understanding, and we are still going to plan on doing a bunch of things that week. It’s really about spending time together, and having a good time, there’s plenty of things we can do and still accomplish that. I’m thinking a few days on Wisconsin dells at a water park, and some other fun activities we can all do, so back to planning.

We still have radiation consultation on friday too, and we are hopeful that radiation will help to alleviate some of the pain in her lower back – that’s probably the worst of all of her pains.

Rebecca’s wheelchair came today and I had some fun doing 360s in the front room.

Sunday, Monday, and today were fairly good days as Rebecca is being more intentional about taking pain meds, so it’s been good to see her not in pain (or at least too much pain) for a few days

Just some quick updates:

• Rebecca was released on Monday, we got home in the afternoon
• We are now throughout the day monitoring BP and PulseOx to be able to take the correct medications to keep things moving forward.
• Rebecca is feeling better, but pretty weak from being in the hospital for 5 days in a bed.
• Keytruda imunotherapy was approved, and chemo was rescheduled for tomorrow (Friday) – so this time we’ll do both
• The Oncologist is hopeful that the chemo and imunotherapy will help to dry up the fluid around her lungs a bit
• We also now have an appointment scheduled for radiation consult next week on the 12th
• Lasix has really helped out a lot with lowering the amount of fluid she’s been retaining, so we are continuing with that.

None of us are going through her exact journey right now, but I imagine it’s quite overwhelming, and annoying to be constantly hurting from one or more of the 6 different places that are causing her pain right now. Not able to get comfortable, flair ups of pain that come from nowhere randomly, angry that your body is breaking down on you and not cooperating at all, angry that you can’t do or participate in all of the things you want to. Wanting the pain to go away, but not wanting to spend your time in a drugged out-of-it state, so playing the game of waiting to take things until the pains become too much, but then needing to bare through the next 30-60 minutes of more pain to wait for medicine to kick in. It literally sounds like torture to me. Rebecca’s body may be weak, but she’s got a strength and a will to keep going. It’s quite remarkable, and inspiring, I just don’t see myself able to be that strong.

So requests for prayer for that last paragraph. Saying it’s tough to go through has to be an understatement. Prayers for me and the girls, as it’s tough to watch helplessly, that we may serve her well in whatever little ways we can.

Through this all, God continues to provide and give us hope and strength. It’s a little strange, but I was thankful for all the time hanging out at the hospital with Rebecca. We got lots of time of talking and hand holding and relaxing. It was also really amazing the way that she was so well cared for by the staff at the hospital. Thankful for Abigail being home to help with making sure that things were running well there and being there with Annabelle while I was with Rebecca. Thankful for my work situation – I can’t imagine being in a normal job that wouldn’t allow for the flexibility that I have to be able to just focus on Rebecca and be available to be with her and travel to appointments, it’s truly a blessing for both of us. All of the love and support, offers for help, meals, and people just checking in with us is so warming and makes us feel quite loved. Thank you all.

I’ve been waiting to write an update when we get out of the hospital (to be able to say that we are out), but it’s been extended at least until tomorrow now though and who knows if that will happen.

We went to an appointment Wednesday at the oncologist to have a pre treatment checkup as we were set to get treatment Thursday. Once they saw the amount of pain that Rebecca was in though and heard about the shortness of breath and saw the fluid retention they were concerned for her. We talked about pain management and how that was going to need to change, they wanted a chest xray to see if there was fluid on the left side (we’ve been draining the right side at home), and they were again worried about the possibility of a blood clot. So they said that we should go to the ER as we could get these things under control and figured out faster in the hospital then trying to make a ton of appointments and it taking a week plus.

So we went to the ER and spent about 6 hours there before they we got into an actual room, but in that time they did a chest xray, ct scan, and ultrasound. So by the time we were in a room they knew that there was fluid on her left side (has never been drained), and around her heart (along with torso and legs) and that she didn’t have a blood clot.

Late Wednesday we drained the right side like normal, and Thursday they drained 1L from her right side (a bit over 4 cups worth). They started lasix (a diuretic – helps remove fluid from all over the body and allows you to pee it out). They are also managing pain better and it has helped Rebecca feel much better and (in her words) “human” again.

So currently things are going well, but they are slow going because both diuretics and pain medication can effect (or is it affect, why is english so hard) blood pressure (by lowering it) they aren’t able to do it at the rate they’d like to as her blood pressure keeps dipping a bit low.

… so still in hospital for now, but not emergency things, only trying to get some silly things under control.

We both hope that she’s released tomorrow. This may mean a change in day to day things as we don’t quite know what ongoing pain management will look like. Trying to just take things day by day, bite size chunks is good.

I hope the minutia is ok, I’m a detailed guy, I ask lots of questions and like details as it gives a good understanding of the situation and helps me to know how to think about or pray for the situation, and to visualize what’s going on and such. Hopefully it’s not too much in the details for you all.

Also as hair falling out and being everywhere was becoming annoying to Rebecca we (me and the girls) took turn shaving her head on Monday.

Also we got approval for Keytruda, and re-scheduled chemo that should have happened yesterday for next Friday (6th)

That seems like everything, so now you all know what I know.

Love you all.

Quick update – bullet point version

• had chemo on the 7th, didn’t get imunotherapy as some of the key markers that it would be effective against weren’t present after more samples from the endoscopy and fluid were tested – so insurance said no
• chemo caused lots of pain for 4 or 5 days. pain pills are now being used and helping a lot with random pain
• mri on spine done and found that although the cancer has spread to the bone (bone metastasis) at the L4 vertebra, that it has not entered the spinal canal
• the pleurx catheter surgery/procedure went well and we are now draining at home, so that’s good as we are able to do it every 3 days (getting about 500ml every time)
• rebecca continues to have pain on and off throughout the day (more on then off unfortunately)
• We have a round of chemo again next thursday, we are hopeful that the chemo will not be as painful and that it will help to dry up this fluid a bit
• we both expected for her to bald by now, but the hair is hanging in there, although is still coming out quite a bit
• we are about a month away from enjoying a nice family cruise, so that’s nice
• picture above is from mothers’ day with rebecca and her mom
• will update again soon when there is more to update

Did you hear about the guy who collapsed trying to climb Mount Everest? – Authorities just found Himalayan there.

Hi everyone, I hope you are enjoying some of these nice days and sun that we’ve been having. It’s been good to be able to get outside more and feel the warmth of some nice sun.

We had a appointment at the Oncologists on Friday, and the plan is:

• Treatments resume Thursday (7th) – 6 hours, new chemo of carboplatin and paclitaxel. Also they are going to start immunotherapy of keytruda qlex. The current plan is for this to be done every 3 weeks.
• Endoscopy tomorrow (4th) to see what they can see from there
• Fluid draining again this week
• MRI thursday night (7th) on spine, as they had seen spread into the lower back on her L4 on the PET scan, and they want to see what’s happening and if the disease has caused a fracture
• Next week Monday (11th) getting a PleurX catheter put in so that we can start draining the fluid at home more regularly

Things are more painful for her this last week as a combination of chest (lungs maybe), stomach (this has been ongoing and probably from the tumor site or lymph nodes being enlarged), and now her lower back – have all been aching a bit. We are trying a few things for pain management, so prayers for that to get dialed in sooner than later.

The new chemo will almost certainly have her losing her hair, so that’s a bummer for her. Although on the positive side she’ll be more aerodynamic 😀

Right now her spirits are down due to it feeling like her body is failing. We are hopeful that a combination of being able to drain at home, and the new treatments should hopefully slow or stop the fluid buildup that is happening in the chest, and that should help with the breathing issues and coughing that is going on. Once we know what’s going on with her back we should be able to get that aching/pain figured out as well. So it’s good to have some plans in place and we are hopeful for some relief and to start treatments to slow down or pause what it going on right now.

Abigail is home from college, and it’s nice to have all my girls in one house again, even if it is only for a little while until Abigail starts back up at school in the fall. The picture above is from Saturday before we headed out to a craft fair together.

We are thankful for you all. Keep your thoughts, love, and prayers coming.

Unfortunately this is an update with more bad news. We got the results of the pet scan today along with a call from the doctor. The cancer has spread to her spine, adrenal gland, some muscle tissue in the left hip, and a spot in her flank (whatever that is). In addition to this she had another 1200 ml drained from the left side of her chest on Wednesday and the fluid appears to be continuing to produce.

So what does this mean? It means that the cancer is spreading, a lot. It means that although the chemo seemed to be containing what was happening in the stomach/intestinal region that it didn’t do much to stop spread to other areas. So now there’s a bunch of little wild fires that may or may not respond to treatments individually.

New actions – We are changing chemo with the hopes to get it started and approved by insurance this next week, also starting an immunotherapy therapy as well. Along with that we are getting another chest x ray (these are becoming a weekly thing) and then based on how much additional fluid has accumulated we need to make a decision about possibly putting in semi-permanent catheters so that we can drain fluid from home every few days so that it doesn’t build up as much and cause such issues with breathing.

I’m not a person that asks for help, and I feel like I’m constantly asking you all for prayer, this is quite uncomfortable for me, but we could use some prayer here. God can cure this, but we are well aware this may not be His will, and we are understanding of that. Still we appreciate prayer for a miracle, prayer for strength, prayer for low side effects from these new treatments, prayer for Rebecca’s comfort through this. We have a cruise planned at the end of June, and she’s really been looking forward to that. Prayer for her to be able to do that still. Prayer for more time, and the quality of that time.

Some positives – I got Abigail home this evening from finishing her first year at college, Rebecca and I will appreciate laying in bed tonight and knowing that the Suarez Crew is all in the same house together for a few months. Despite Rebecca’s discomfort lately with breathing and some pain she is still relatively normal, working, and able to participate with anything we are doing. I’m thankful the doctors have more things in the arsenal to throw at this disease, and that they have a solid plan in place of what we do next. Rebecca and I continue to get good quality time to hang out and cuddle and hold hands and just enjoy us together. I appreciate all of you, and your thoughts and prayer and love that you have for us. We know you are all there, and we know you feel for us, and we feel that, thank you.

I promise next update will have a picture. We have more tests, scans, and some appointments this coming week. So I’ll update next week when we know a little more.

Enjoy your weekend, and your loved ones.

Shooting off a quick update.

We got some not so happy news this morning. They finished with testing the fluid that they drained when Rebecca had been in the hospital. This in combination with the x-ray that was taken before they released her leads them to believe that the cancer may have spread to her lungs.

This would make some sense as she’s been experiencing discomfort in her chest when breathing or coughing, also breathing has not been the best lately.

They ordered a stat CT of her lungs to check for clots of fluid, we already got that back and she has fluid around both lungs. They’ve also already scheduled to get that drained next Thursday. (as a side note I just can’t say enough about the oncology team at Northwestern, they are amazing)

They also want a PET scan asap, so we’ll get one on Wednesday in Dekalb. This will help give a better idea of what is going on.

Treatment was cancelled for Monday as they want to change to a different chemo as the current one, it turns out, is not holding things back very well at all.

We don’t know much more than this, and I suspect we probably won’t have much more info until either end of next week or early the following week.

This isn’t information we were expecting, and the positive scan we received at the end of march led us to believe that we were going in a sideways or possibly even a slightly up direction. So this morning was a bit of a surprise and a very real reminder of the terminal-ness of this disease, and of timelines that were given to us.

Our wanted timeline is not God’s timeline, and it’s hard to come to terms with that, or maybe it’s more about being hard releasing that control that we only think we have.

I’m a big take it a day at a time kind of guy, so for now we just move on to the scans and procedures next week and we’ll see where that bring us. That being said I sure would appreciate prayers for strength for both of us as today was a bit of a smack of reality, and a small reminder of the road that lies ahead.