Finding Perspective

I follow this one lady on Facebook mostly for inspiration in decorating and crafting. Between the  posts on her page  and so many of my friends  posting pictures of their Christmas trees, I found myself stressing.  Not wanting to spend the money and more importantly not having the time or energy to make it happen, drove up my anxiety.

Tim hasn’t been well this last week.  He’s lost 10 pounds in seven days, is eating very little, and he’s been extremely weak.  Rather than continue with the phase-in process of the Stivarga, the decision was made to back down to two a day in an effort to stabilize his blood pressure and increase his strength.

So this past weekend the kids and I did something I never thought I would do. You see I usually put my Christmas stuff up the day after Thanksgiving. But this year other things were going on and it just didn’t happen. Between golf tournaments, playoff football games, and Tim starting a new treatment plan, I found myself almost halfway through December with no Christmas decorations up. Fall leaves and pumpkins still graced my entryway and side tables.  Saturday was the first day that the kids and I had no plans. None of us felt very well and getting into the attic and getting boxes and boxes of Christmas decorations down did not sound fun at all. It really just stressed me out. So the kids and I loaded up in the car, went to Hobby Lobby, and bought a 4 foot rustic looking tree straight off the display. I literally unplugged it and put it in the basket. A few picks of pinecones, berries, and glittered sticks and our tree was done.  Abby did manage to get in the attic to get down a tree skirt and stockings - I didn’t even get my nativity out. Instead I was satisfied with the nativity wrap around a Scentsy warmer.

I must admit there is a whole lot of guilt in this.  I’ve worried about what the kids would feel, what their friends who come over will think. I’ve been cautious about letting people stop by for fear of judgment. But God has spoken very clearly to me and more than anything I am learning to give myself grace. God did not send his Son for us to stress over all of the trappings that come with a commercialized holiday. This season we are trying to step away and make it about the joy and salvation that was gifted us through His birth that Holy night many years ago.

This is in no way judgement on those who’ve surrounded themselves with Christmas cheer and all that decorating for Christmas can be.  In fact, I am happy for you and am still a little bit envious. We just know this Christmas it’s not for us, and that is ok.  If you are feeling the pressure of meausuring  up to others, give yourself grace to be exactly where the Lord wants you to be. Seek Him and ask Him to meet you where you are.  Continue to pray for us - for cancer to be gone, for Tim to feel better, for rest for all of us. Most importantly, pray with us that we will seek the Lord and that people will see Jesus in us this Christmas season.

For to us a child is born, to us a son is given, and the government will be on his shoulders . And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Isaiah 9:6

Moving from 2 to 3

It’s been one week in the phase-in process on Stivarga and we have seen only a few side effects.  In the first week Tim experienced flu like symptoms, fever, and extremely high blood pressure, but no hand foot syndrome as of yet. One answered prayer is that he felt well enough to watch Abby play in a two day tournament on Friday and Saturday.

He saw the doctor today and was moved to three pills a day.  There was quite a bit of concern about his blood pressure, so now he will take it three times a day and up his blood pressure medication to two a day. We got in a bit of trouble in that we did not take him to the emergency room at MD Anderson Or call the doctor when his temperature got so high last Wednesday evening.   But now we know exactly what the cut off is and will do so in the future. He will see the doctor again next Monday to assess how his body is tolerating the Stivarga before moving to the maximum of four pills a day.

My friend Christine reminded me of a Kari Jobe song to add to my list of anthems. (I’ve linked it below.) As we continue this journey, our faith remains in our Lord Jesus Christ. Each day we both grow closer to Him.  Continue to pray with us for complete healing and minimal side effects.  Also pray for my friend Janice as she is undergoing radiation for tumors that have metastasized in her brain.  

Healer

Hills and Valleys

Tauren Wells released a song titled “Hills and Valleys” last year and along with Sanctus Real’s “Confidence,” it has found its place as a theme for our family.  The chorus says...

On the mountains, I will bow my life
To the one who set me there
In the valley, I will lift my eyes to the one who sees me there
When I'm standing on the mountain aft, didn't get there on my own
When I'm walking through the valley end, no I am not alone!
You're God of the hills and valleys!
Hills and Valleys!
God of the hills and valleys
And I am not alone!

Today Tim and I went to see his oncologist to get the results from his scan on Tuesday and found ourselves in yet another valley.  The results showed that all of the tumors in his lungs and liver have increased in size since his scan mid September. At this point what Cooper deemed the “super chemo” is no longer working and Tim is having a more difficult time 
managing the side effects, so no more chemo. 

This, however, doesn’t mean that there aren’t other options.  Tim is currently scheduled to start an inhibitor that is taken orally on November 26. He will work his way up to 4 pills a day for 21 days and then off for 7 before starting over.  Side effects are much the same as what he’s been on with a few additional.  Because of the nature and severity of the side effects, he’ll see the doctor more frequently in the beginning. 

In addition, they have requested his tumor tissue from his original biopsy last September be tested for a particular protein that could qualify him for a clinical trial. It’s a slim chance, yet another option. 

Although this may be a valley in this journey, we continue to see and experience “hills” everyday.  We laughed through the appointment and both have a peace and a hope that only comes through the Holy Spirit. As the lyrics say, we know we are not alone.  Pray with us for more hills than valleys, that this inhibitor stops all cancer growth in Tim’s body, and for us to be able to manage the side effects. 

**If you do not know Jesus Christ as your personal savior and have the comfort of the Holy Spirit, Tim and I both would love to share with you. Text or call us!**

Fighting On

Tim has now had two rounds of the more aggressive chemo and has tolerated both fairly well. He is easily fatigued and is experiencing cold sensitivity.  The biggest concern is that his platelet counts continue to drop.  He is still on go for chemo tomorrow but will need to rest and avoid getting even the slightest sickness. I suspect he will stick close to the house for the coming days and not venture out.  For those of you who know Tim at all, this is going to drive him crazy.  They will check his counts again before approving chemo on November 2. We expect another scan in about a month to see if this regimen is working.

Over the last few weeks, we’ve been blessed by a group of men from church who have selflessly taken care of some needed chores and repairs around the house, by a new friend and organization to help with parking at the med center, and Tim was the guest speaker  at a men’s group at Believer’s Fellowship in Spring. We know that the Lord is in control and are grateful for the blessings who provides.  Pray with us for limited side effects, no sickness for any of us, and for the tumors to be reduced in size - gone completely would be great.

Facing the Next Giant

It's been just over two months and I haven't updated, because really there wasn't much to update. Tim had a scan on July 27 which showed minimal growth in both the liver and lungs.  The doctor opted to stay on the same chemo regimen (primary chemo drug being Irinotecan) and scan again to see how the tumors were responding. We found ourselves in somewhat of a normal pattern of everyday life.  However, our next Giant Encounter was lurking just around the corner.

Last Thursday, September 13, Tim had another scan and saw the liver surgeon immediately after.  She shared that there appeared to be "rapid" growth in the lungs and did not want to move forward with an ablation on the liver for fear of the lung tumors growing or multiplying during the time he would have to be off of one of the drugs. He was scheduled for chemo on Friday, the 14th, but was told when he arrived that chemo was being postponed until he could meet with his oncologist to discuss a new treatment plan.  At this same time, his blood pressure was abnormally high and he was instructed to take his blood pressure three times a day and have the results available for the doctor on Wednesday, September 19.  

We met the next Giant face to face Wednesday when Dr. Nelson came into the room and started with, "I know you guys have already seen the report and that the cancer is getting worse."  My stomach dropped.  We didn't learn anything new that we didn't already know from the scan the week before, but it became real.  I had quite a few questions and Dr. .Nelson was good to answer them all.  One of the pulmonary tumors and the one liver tumor are roughly the size of a marble.  The other identifiable pulmonary tumor is about the size of a pea.  Other lesions appear, but at this time they are too small to determine what they are.  The rectal tumor was not measured at this last scan, but is the least of the concerns right now.

The treatment plan moving forward is to switch out Irinotecan for Oxaliplatin - or as Cooper calls it, "Super Chemo." This is what he was first on just over a year ago that shrunk everything so fast.  It brings with it a lengthy list of debilitating side effects.  There was no clear cut plan for how long he will stay on this.  Dr. Nelson said, "until the side effects become limiting." Tim pointedly asked him what would happen then.  He indicated that if we see that it is working to reduce the size and number of the tumors, then he would alternate between the Oxaliplatin and Irinotecan. With each new cycle I felt like we are David with only a slingshot and a handful of stones.  But we know what the Lord can do with those stones. Pray that He will use Oxaliplatin and Avastin to eradicate the cancer while keeping the side effects manageable.  

Regardless - 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9

Still Here

It's been almost a month since the last update, and several people have asked for an update.

Tim has had two more rounds of chemo since the last post.  The first one was fairly uneventful.  He was in a room on the backside of the infusion center where it was extremely quiet and he was able to sleep through the entire 4 1/2 hours.  There were few side effects other than nose bleeds and fatigue.  

We saw Dr. Nelson before his second infusion.  He was said Tim is doing really well as far as handling the chemo.  The nosebleeds are a common side effect of the Avastin and not to be concerned unless we couldn't get them stopped.  His labs were all good and he was given the go ahead for chemo on Friday, the 6th.

This appointment would prove to be very different than any of the previous ones - Abby was on chemo duty.  She drove him there and home and handled the infusion process very well.  This round, though, did make him sick. He was rather nauseous and light headed throughout Friday and Saturday. He's slept a lot and feels like he has the flu.  This is all to be expected - we just never know if it's going to affect him this way or not.  Some times it does and some times it doesn't. 

He has one more round on the 20th and then is scheduled for a scan on the 27th to see how the cancer is responding.  We are most concerned about the lesions on the liver that appeared to be growing on the last scan.  Please pray that all cancer is responding (all pelvic lesions, liver, and lungs) and that his body continues to tolerate the chemo.

Still Hope

Catching up from last week --

Tim had an MRI and a CT scan last Wednesday and we saw his oncologist for the results on Thursdays. In some ways, it was a mixed bag of information. His lungs show no growth in size or number and it even appears that some of the lesions are responding to the chemo. The rectal tumor and associated areas appear to be stable. However, there is at least on new lesion on the liver. For now he will continue with four more cycles of his current chemo regimen and then rescan again to assess the liver and consider other treatment options. I asked exactly what this meant as the liver surgeon had previously talked about ablating any future spots. Dr. Nelson explained that he would switch Tim back to Folfox which is a combination of chemo drugs that includes oxaliplatin - the drug that he was on prior to the liver resection that caused the most severe side effects. He would prefer not to do an ablation at this time because it would mean going off of chemo and his fear is that the other areas will grow. He saw both surgeons yesterday and everyone appears to be on the same page. We are thankful that the entire team is working together and there are still options to manage his disease.

Some days you wouldn't know Tim's body has been invaded by this awful disease and others he struggles to get out of the recliner. He is trying to learn his limits and not overdo it, but the energizer bunny doesn't really know when to stop until he runs out of batteries. This last treatment did not go as smoothly as the one before. He was sick Friday evening through most of Sunday and slept quite a bit. The newest development is frequent nosebleeds which is a common side effect of the avastin. This means they will likely be monitoring his platelets and his susceptibility for anemia. Pray that we adjust to some sort of normal life and that we don't take anything for granted.

Yes, It's Been a While

It's been over a month since my last post, but there honestly hasn't been much to say.  Tim's infusions have continued every other Friday and weekend with only one minor hiccup.  We never know how he is going to react from one infusion to the next.  His last treatment he experienced almost no symptoms, while the one before that made him extremely sick.  Before his last infusion, he began running a fever and we were at the point of having to go the the MD Anderson Emergency Clinic down at the medical center.  Luckily, he had an appointment with the oncologist the next next day and because there were no other signs or symptoms of infections, they continued with chemo as scheduled.

He's seen the nutritionist twice in the last month and any of you who know Tim very well know that he did not like the changes they want him to make.  It's definitely a slow process, but he is trying new things - wheat bread with seeds, green vegetables, and WATER!

Moving forward - Tim had an MRI and CT today, sees his oncologist tomorrow, chemo on Friday, and then sees both of the surgeons on Monday. Pray that the cancer is reduced or at least stable - NO GROWTH! More to come after Monday.

No New News

Today was another infusion day. They added back in a targeted therapy drug that works with two of the chemo drugs and he slept through quite a bit of the infusion. It seems that the new anticipatory medicine knocks him out and helps a little with side effects. Although not as sick as the treatment before last, he has been nauseous and vomiting. Hopefully, his two meds will kick in soon to alleviate it.

To set the record straight with facts - despite a rumor going around, Tim has not been given any prognosis on life span. We are unsure where this false information originated, but know it has upset the kids and we are working to alleviate their fears. We are continuing to live our life as normal as possible and have even made plans for the next year. What we have learned is not to take for granted God’s blessings. None of us are guaranteed tomorrow. Only the Lord knows the number of our days.

The verdict is in...

This week was somewhat of a roller coaster.  Cooper had a cold, Abby played in the district golf tournament, and Tim spent three days at MD for doctors’ appointments.  We left at 4:30 Monday morning to get to the medical center for blood work, an MRI, and an appointment with his rectal surgeon. When we finally headed home we were both a little thrown off  his surgeon recommended consulting with his oncologist and a radiation oncologist about going on preoperative radiation and chemo to see how his body responded.  If he did well - meaning the cancer in the lungs didn’t grow and nothing returned in the liver - then he would be a candidate for surgery to remove the rectal tumor.  However, he was very upfront that it would be a major surgery that might alter his everyday functions.  We didn’t know what to think and decided to pray and wait.

We didn’t have to wait long. When he saw his medical oncologist on Thursday, he learned that all of the doctors had consulted and decided at this time going off of the chemo he is on right now is too great a risk for growth in the lungs and regrowth in the liver.  So the verdict is .... he continues on chemo every other week. They will be adding back in another drug next week now that his liver incision has completely healed. Praise the Lord! For now they seem to have found a combination of anticipatory drugs that are keeping the side effects well under controlled.  The biggest thing he seems to deal with is that he gets tired really easy. But we are blessed that he is able to be home and rest as he needs to.

For now we pray that his body can tolerate chemo for the long term and adjust to our new normal. We are blessed and thankful for an amazing support system and the many people who are praying with us.

Keep On Keeping On

I know I haven't posted in a while - I just haven't really known what to say.  But after several people have commented that I haven't posted in a while and asked about Tim, I decided it was time.  Tim resumed chemo on Friday, March 16.  I was off for Spring Break and was able to go with him.  That particular infusion made him extremely sick from the very beginning.  There weren't any new meds involved, but his body just didn't tolerate it well.  At his next appointment with the oncologist, he was prescribed an additional medicine to try to help manage the nausea and vomiting.  He can take it in advance and they give it to him through his port just before the chemo infusion, as well.  It's more for sensory and neurological control, but it has really seemed to help and he didn't have any adverse effects from chemo last Friday.  We did have a bump in the road last Tuesday.  His incision from the liver resection has still not closed completely and he noticed tissue coming from it.  After contacting his nurse, we were told to rush him to triage at the colorectal center.  Once there, they discussed packing it versus a wound vac, but they ultimately just pushed it back in and put a bandage over it.  At this point, he just keeps it covered and waits. They've said that being on chemo will take it longer to heal and it could take up to a year to fully close.

In the meantime, we just keep on keeping on.  We were all four able to get away for one of Abby's golf tournaments in Longview a couple of weeks ago and, Tim felt good enough to serve at church on the Thursday before Easter and in the preschool department Easter Sunday. We are trying real hard to find  joy in the small things and to not take anything for granted.

So what's next -
1) Right now he's scheduled for chemo through the end of May. It's the same schedule as before - infusion in clinic every other Friday and home with a pump through Sunday.
2) He has multiple appointments on Monday.  We will leave the house at 4:30 a.m. for an MRI and to see the rectal surgeon where we hope to get an updated plan for surgery.

Pray that he continues to tolerate chemo and that we get a good plan going forward to remove all of the cancer form his body.  The sooner the better for us.

More to come after Monday -

Chemo Round Two Starts Today

Today is exactly six weeks post liver resection and the first possible date to start chemo, so here we are checked in and awaiting drugs.  This round - at least today - will be shorter than previously as they have removed two drugs while the liver and incisions continue to heal.  He’ll still go home with a pump for the weekend and I’ll play nurse on Sunday.  Praying that side effects are minimal.

3 Weeks Post Resection, Lung Update, and Ablation

Tim’s liver surgeon resected about 80% of his liver and removed his gallbladder on Friday, February 2.  It was a long, grueling 10-hour procedure, but a dear group of friends came and spent the day with me and kept me distracted from watching the clock all day. After a long wait in PACU, a bed finally became available in extended PACU that night about 10:00.   The next morning Tim was up walking and we were finally moved to a regular room late Saturday afternoon.  The doctor had prepared us for a 7-10 day stay, but Tim did everything he was told and we broke free on Tuesday morning after only four days.

After returning home, we found that energy and appetite have been almost non existent, but he has pushed through and has been walking almost two miles a day.  He’s returned for two follow up visits and the doctor appears to be astonished at how well he’s recovering.

Last week began what feels like daily trips to the medical center - not really, but it feels that way. On Monday he was scheduled for a CT scan to see how the liver is growing back and to get exact locations of the three remaining tumors in the liver.  On Wednesday, we had a consultation with the lung surgeon. He said, “I see nothing to be concerned about, and don’t take this the wrong way, but I hope I never see you again.”  He reassured us that they would continue to monitor and if anything came up, he would have a plan. Praise God! We needed some good news.

We returned Friday for a pre-op for an ablation if the three remaining tumors.  After the weekend enjoying Cooper’s last basketball game and church on Sunday, we left home early this morning for the 4th time in 7 days to check in for the ablation at 7:00 this morning.  Basically, the radiologist used a CT to guide long probes into the liver and microwaves “burned” or ablated the tumors.  We expected to be in recovery 3 hours post procedure, but Tim’s body did not handle the procedure well. He suffered severe pain and vomiting so the decision was made to admit him. We were moved to a room about 4:00 this afternoon and he’s been resting well. The good news in all of this is that his room is in a newer part of the building and much more comfortable than any of the others we’ve been in.

Next steps:
1. Plans are to be discharged tomorrow
2. Appointment with medical oncologist next week - praying we find out what the next treatment protocol entails and a timeline for that.
3. Appointment with colorectal surgeon early April and praying we get a timeline to get the rest of the cancer out of his body.

We’ve been fighting this 5 months and things have gone much better than we could have ever imagined.  Continue to pray for Tim’s recovery and health and for the kids as they are shuffled around on any given day.  We know many others are facing a much worse prognosis and we are not taking anything we are facing for granted.

Gallbladder and Most of Liver are Gone

It’s 8:30 pm and I’m sitting in PACU waiting for a room in extended recovery as Tim dozes in and out.  We checked in this morning at 5:15 and they took him back for surgery just before 7:00.  The surgery lasted right at 10 hours.  Dr. Chun said it went well when she came to see me about 5:00.   I am blessed by wonderful friends as they provided plenty of entertainment to distract me in between the updates every two hours. He’s resting fairly well but know the days ahead are will bring ups and downs.

Preparing for Liver Resection

We arrived at MD Anderson this morning for Anesthesia Assessment and a PreOp appointment with the surgeon.  Everything went smoothly in anesthesia and we were left with almost four hours until the afternoon appointment.

Tim and I ventured over to the McGovern Commons for lunch outside.  It only took us one new elevator, but Tim said he felt like we’d been on six.  After lunch we rode up to the observation deck on the 24th floor.  You can see all of the medical center, the ship channel, and back over to NRG on the side we were on.  From our chairs, all you could see were blue skies and clouds.  It’s supposed to be a quiet place, but others must not have realized that or cared. Nonetheless, we spent several hours reading and relaxing.

This afternoon, we met with Dr. Chun’s fellow who will be in the OR tomorrow morning and she explained that Tim’s case is one of the trickier ones.  When I asked to confirm the six- to eighth- hour length of surgery, she responded with “at least.”  She also explained that he will likely need a blood transfusion and explained the two possibilities for pain management. Dr. Chun and the anesthesiologist have already discussed that he will like have an epidural rather than tap blocks and they would get him up to walk on Saturday.

Basically, the most disappointing news was when the nurse’s aid said that he is on clear liquids from this point forward.  Too bad we didn’t have a good lunch. But then Dr. Chun came in and said he could eat a light supper.  We already knew we liked her, but he sure liked her more with that.

In all seriousness, we both really like her and have confidence in God’s work through her. Her bedside manner is excellent, as was her fellow’s.

We are now off to the Rotary House to attempt to get some much needed rest.  I know it’s going to be a long few days.  

The Lord is with Us through the Muddiness

I’ve decided that cancer is  like muddy water. You know that brownish green, stirred up lake water - it’s clear enough to see some shapes or what you think are your feet, but gunky enough that you can’t see what’s in front of you as you tread to keep your head above the surface? That’s what I feel like we are living in right now.

Over the Christmas break, we enjoyed life much like sitting lakeside and enjoying the subtle breeze and fresh air. We were able to spend that time with no appointments, no chemo, and almost no medications.  There were times that we could almost forget that cancer had invaded our family.  Tim continued to experience lingering side effects from the chemo, but was able to work at the farm and is still trying to build up his strength and stamina.

This week we went from enjoying the water lakeside, to jumping straight in the deep end.  Thank goodness we have a life jacket (more on that below).  Tim was scheduled for appointments at MD Anderson in the med center Wednesday, Thursday, and Friday.  Wednesday he had an MRI at 8:15 a.m. and then was in a different building for blood work and a CT Scan at 4:30 and 7:30 p.m.  This sure made for a long day.

Thursday, he met with Dr. Chun to get the results from the CT and see if the liver resection was still a go.  The CT scan revealed that the masses on the liver are about the same size as the last time. But also confirmed that the “nodes” that were visible on both lungs are in fact malignant.  There are two  tumors on each lung and “multiple” lesions that are not of measurable size.  Dr. Chung explained that at this point, this information will not delay the liver resection, but does mean he will be seeing a thoracic surgeon to determine the next course of action.  When he called me to give me this news, I felt like I was sinking fast and couldn’t see more than 12 inches in front of me. Remember that muddy lake water, I was at the bottom stuck in the sticky silt and sand.

He also found out that his consultation with the rectal surgeon on Friday would include a procedure we weren’t previously aware of, so I made the decision to accompany him on Friday. While meeting with Dr. Skibber on Friday, we learned that the rectal tumor has extended through the rectal wall to invade at least one lymph node and some other close organs. He explained that at this time, the rectal tumor and directly connected sites are at the bottom of the priority list since the liver and lungs are both organs necessary for life. If and when we get to the point of removal, it will be a bigger surgery than initially thought due to the other areas involved.

If you read the first post after diagnosis, then you know that I firmly believe that the Holy Spirit gave me Isaiah 43:2 and now it is very clear that we don’t have a life jacket, but a life giver. The Lord is in the muddy water with us carrying us along and keeping our heads above the water.

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

Notice - He did not say “IF” you pass the waters or river or “IF” you walk through the fire.  He clearly said “when.”  We WILL have to pass through the waters and walk through fire.  This is our muddy water and He is with us. It is the only reason we continue to find joy and hope and peace when we can’t see through the mud what might be coming at us.