Author: sortlane1

We are living in some very interesting times!  I am sure all of you are dealing with the current COVID-19 situation in your own way each with a unique set of circumstances.

As you may remember, Val’s second surgery was scheduled for today.  We waited yesterday for word from the hospital to see if the plans might be altered.  We waited and then waited some more and finally received a call letting us know that only essential surgeries are being performed and that we should have her at the hospital at 6am.  So we guessed she made the “essential list”.

So 6am arrives pretty soon in the morning….  We arrived at the hospital to a “Disney World” style roped off line that wound a little through the main lobby.  It kind of was like going through airport security actually, even had an armed guard standing by as we all got checked in.  The check in went well and then we headed up to the family waiting area to get called back for surgery prep.  It was pretty quiet as there were only a handful of appointments for them today.

Val got called back and I was actually able to go back with her as they prepped her for surgery, which we were unsure they would allow.  She got all the same stuff as last time, including the nerve block in the tummy.  That little procedure comes with the added benefit of some good drugs to help make you not care they are sticking needles in your belly.  We just had to show them our Platinum Elite membership card to the hospital and they knew to do the rest.  Side note: one of the nurses prepping Val looks through her past history and mentions “you have been through an awful lot”.  That was the understatement of the day……

When the time came for surgery I moved back to the family waiting room to await a message from the Dr. about her progress.  I got all settled in nicely; those of you who have seen me spread out to work know what “settled in” looks like.  It didn’t seem like much time went by when I got a message that they were all done and Val was in recovery.

In meeting with the surgeon he was happy with how the procedure went.  He trimmed off the amount he was planning on and was happy with how things went back together.  Now they send this little trimmed piece to pathology and we await to see how things look from a cancer cell perspective.

The hospital currently has in place a “no visitors” policy, so off premises I had to go once meeting with the surgeon.  The hospital took my number down and said they would call once she was settled into her room.  That call just came in and my guess is she is going to sleep the rest of the afternoon.  I am definitely looking forward to a little FaceTime with her later this evening!

It was great to get all the well wishes and prayers over the past several days.  We continue to be immensely grateful for the support team around us and the love shown to us!  Our continued prayer is that through all these experiences, Jesus would be praised and made much of as He works in our lives and those around us.

Currently, we are expecting her to be in the hospital for a couple of days.  We will keep you posted on test results and recovery.    

Marc

This afternoon Val and I met with her Doctor about scheduling the next surgery she needs along with answering a variety of questions for us.  Her surgery is scheduled for Tuesday, March 17th.  The surgery is going to be the “full zipper” treatment where he opens her way back up.  The goal is to remove about 2cm of the lower tube area (there was a medical name for this but “tube area” will suffice).  It sounds like the hospital stay will be a few days rather than a week this time and as a bonus, the goal is to have her stay back on the same floor since we already have the nursing staff broken in there.

The doctor was very surprised to find cancer cells that low and, as in years past, we heard someone in the medical community tell Valerie, “you are an unusual case”.  There is one longer term challenge with finding cancer cells in this area.  With her stomach removed, this lower area is now isolated and not really being used or accessible.  That is going to make monitoring any sort of future cancer growth in this area challenging.  She will have regular follow-ups and be monitored, but still no real way of telling if something decides to grow there again.  With all that said, we are going to seek a second opinion from an oncology doctor about any sort of preventative steps we may want to consider.  I shared with Val that the Lord has always seen fit to find ways to let us know about a health challenge she may be having and He will be faithful to let us know again in the future.

She has been doing wonderful adjusting to a new life style.  It hasn’t been without its ups and downs, but in general she has exceeded expectations for recovery.  We look forward to putting all this surgery and hospital stays behind us in the near future!

Please pray for wisdom as we contemplate any additional treatment along with an easy recovery for this next surgery.  We so appreciate the prayers and encouragement that we have received and are beyond thankful that you all have been Jesus’ hands and feet to us!  As new updates occur, we will keep you posted!

Marc

Val had her post op doctor appointment this past Wednesday.  They went through the pathology results and it seems like the Lord has seen fit to give us a little longer journey.  Praise the Lord that the results show the cancer has not spread to any lymph nodes and was completely contained in her stomach.  That is such a blessing that it was caught early and she doesn’t need to have any chemo or radiation.

Unfortunately, it was also discovered that there still remains a small portion of stomach tissue, at the lower end, where cancer was shown to still exist and a clean margin not obtained.  So she gets to go back into surgery for a little “warranty work” to remove this tissue.  The doctor has about 2mm to remove and then re-seal the lower portion of her reconstructed connection.

This development was difficult to process, especially in light of how smoothly her recovery has gone so far.  We have had other setbacks on our previous cancer journey and you begin to wonder (worry) if this is the start of more trials.  Also, I was unable to be at the post op appointment but a dear friend of ours was able to attend in my place.  Once again, the Lord providing for us through the many folks being His hands and feet.  Never doubt the impact that God will make through you, for His glory!

As Val and I worked through and came to grips with the fact that there is still some length in this journey, she totally flipped the situation on it’s head.  She looked at the situation in this positive light.  She pondered aloud how blessed we are that the doctor cut low enough to actually get some of these cancer cells in the removed stomach.  He could have cut just a little higher, missing the cancer cells all together, leaving them attached and us not even knowing they existed at all.  Now that is perspective and wisdom gained through trial, showing great maturity and faith in God!

As our Pastor likes to ask at the end of his sermon, “so now what”.  Well we are not entirely sure the exact steps other than she will be going back in for surgery.   They can’t operate less than 6 weeks following a previous surgery so we are at least looking into mid to late March.  We are also not sure if the surgery will involve a “full zipper” scar like her last one or a smaller incision.  There is another meeting set-up with the surgeon on Wednesday, February 19th at 3:30 to work through all the details.

Our family continues to be so grateful for your prayers and support.  Please continue to pray for us in this new development.  Also pray that the Lord continues to be made much of in this journey and that His purposes are accomplished.

 

 

 

Val’s recovery has continued to be way smoother than either we or the medical community thought would be the case.  She has continued to explore food options (she really likes mashed potatoes!) and in general getting used to a new routine and diet.  She hasn’t taken any meaningful pain medication since Saturday and continues to do a good job of staying hydrated.

Yesterday morning we met with our Surgeon and he was happy to process her discharge papers!  We were able to leave the hospital about 12:30pm yesterday and she settled in nicely at home.  You can tell everyone is happier when Mama’s home.

Over the next several weeks she will continue to recover, gain strength and figure out her new normal for diet.  From what she has experienced so far, the diet seems to be easier to adjust to than what we first thought.  Val’s folks are graciously staying with us to help around the house and that has been very appreciated.  Her next doctor’s appointment is Wednesday of next week for a visit with the surgeon and see how things are healing up.  Hopefully by then we will have the pathology results as well.

Thank you again for all the prayers, encouraging words and acts of love for our family.  We greatly appreciate having such a wonderful support group.  We will keep you updated on healing progress and results along with new dietary fun!

Marc

Ok in my last post I told you I would update when I have some more material.  Well, the fact that she still wants to watch Food Network post stomach removal seems pretty amazing to me!  I am not sure I could watch a meal being made so soon after the procedure if it was me.  Once again, I am the guy with the 8 on the pain scale, when my wife is a 4.  We are enjoying a quiet evening at the hospital just the two of us hanging out, it’s kind of nice actually.  Would be better if we weren’t in the hospital but nice nonetheless.

Val has been making good progress with her recovery.  She is becoming way more mobile and able to move around.  Yesterday they started her on broth and water, which went down pretty good.  Today she progressed to mashed potatoes! She was also able to take a shower yesterday, brush her teeth and generally do things that help her feel human again.

The only real challenge to date has been a bugger of an IV and keeping her hydrated.  Due to lymph nodes being taken out of her right arm a few years ago when she was being treated for her breast cancer, she is only supposed to have IV’s on her left arm.  Because of the all the fluids being pumped into her the last few days her left arm got pretty swollen.  Kind of like Popeye arm….  Yesterday the Doctor was good with her being completely unhooked from the IV and to give her meds orally.  There has been no problem with the oral meds, keeping her hydrated though was a little challenge though.  Last night at midnight a few Resident Docs got together and decided to hook her back up to an IV to help get her some more fluids on board because she was dehydrated.  That IV went in the right arm which her husband has been watching like a hawk all afternoon.  Tonight the medical community deemed she had been on the IV long enough and unhooked her again.  That helps lots because she is way more mobile without trailing around an IV pole.

Overall our hospital stay has been as good mainly because each of the Techs and Nurse’s have been awesome.  We have been here long enough now to get to know them well, their families, etc.  Those of you that have played 20 questions with me know the drill.  As a group, they have been wonderful.  Tonight we found out that the nursing staff has been fighting over Val a bit, wanting her to be on their rotation during their shift.  I find that pretty amazing given that her husband can be a little challenging at times.  In regards to timing, our hope is that she gets discharged early next week.

Thank you again for all the prayer, notes of encouragement, visits and general watching after us!  We are very blessed and feel very loved.  I will keep collecting interesting material and keep you posted accordingly.

Marc

Thank you for all the well wishes yesterday!  We received many notes of encouragement and it was very much appreciated.  Val’s surgery wasn’t scheduled until 4:30pm with an arrival time of 2:30pm.  Our morning was spent getting a few things ready around the house and then just waiting.  The waiting got a little old …..  About noon the hospital called and said they were running several hours ahead of schedule and could we come down right now.  It brought back memories of when I was taking Val in during labor!  We made it in about 12:30pm and they whisked us the check-in process.  The hospital can actually move pretty quickly when they want to!

She made it into surgery about 3pm and things went very well.  The doctor came out and saw me me about 6:30pm to let me know that Val was doing very well and that she was responding well in recovery.  Then we waited and waited a little more because there was “no room in the Inn”.  She finally got settled into her room about 9:30pm.  Overall the doctor was happy with what he saw (or didn’t see actually) and we eagerly wait for the pathology results to come back in the next few days.

As many of you know my wife is one of the toughest people on the planet!  When the medical folks ask her what her pain level is and she answers 4, I think it really must be about 8 for me.  She is able to rest comfortably with the help of some pain meds and looks beautiful to me!  The main goals for today are to get her into a standing position and also maybe sit in a chair.

Thank you again for all the well wishes and prayers!  We have a great community of folks supporting us and are very appreciative!  When I get some more meaningful material, I will update everyone again.

Marc

Well it looks like it is time to get this blog active again as we face a new health challenge with Valerie.  The last time we provided an update on this blog was February of 2018 and we have enjoyed a quiet and prosperous time since then.

That all changed when Val was diagnosed with Hereditary Diffuse Gastric Cancer in December.  Once again, the Lord has provided graciously for us and we have heard words similar to our last battle of how hard it is to find this particular cancer.  The discovery of it being like finding a  “needle in a haystack” ….  We have been blessed by folks in the medical community who went the extra step, asking great questions and putting two and two together.

The story of entering this new battle is a little long and winding so bear with me as I provide some background. Since 2016 when Val was treated for breast cancer, two of her cousins have also been diagnosed with the same type of lobular breast cancer that Val battled.  This summer when one of the cousins was going over her family health history with her doctor, the doctor thought that there might be a family connection with the breast cancers and also stomach cancers that two other relatives had been diagnosed with. Val’s cousin was tested for a particular gene mutation called CDH1. This gene can be linked to lobular breast cancer, diffuse gastric cancer, and colorectal cancer.  Sure enough her cousin tested positive for this mutation and she was encouraged to let her family members know so they could get tested as well.  Val was made aware of this result and encouraged to get tested.  This past fall Val was tested and also came back positive for CDH1.  Testing positive for this gene mutation doesn’t guarantee you will get cancer, just that your chances are higher (much higher actually).

The challenge with diffuse gastric cancer is that it is very difficult to detect in the early stages.  The cancer grows between the inner and outer wall of the stomach and doesn’t present itself very well in testing.  In most of the cases, the discovery isn’t made until stomach issues present themselves and by then the cancer is usually very invasive.  Praise the Lord that Val has not exhibited any symptoms!

The standard protocol for those with the CDH1 mutation is to have an endoscopy procedure and biopsies done of the stomach.  Even with this testing, it is not a guarantee that any existing cancer will be discovered.  Many CDH1 patients choose to have their stomachs removed as a preventative due to the difficulty of finding the cancer early. That is where the “needle in a haystack” comment came.

Val had the endoscopy procedure done in mid- December and received a phone call a few days later letting us know that in fact they did find cancer cells in one of the over 40 biopsies taken.  Since that time, Val has had a complete CT and Bone scans which looked good.  Our continual prayer is that we in fact caught this in the early stages and that it has not spread.

So now what?  Well as her Gastric Oncology Surgeon said, she gets to have “extreme weight loss surgery”.  The only way to ensure that the cancer is permanently gone is to completely remove her stomach.  She will be undergoing this procedure at Spectrum Health’s Butterworth Campus on January 21^st with a 6 or 7 day stay in the hospital following.  Her stomach and several lymph nodes will be tested to discover if the cancer has spread.  If the cancer has not spread the only treatment needed will be the surgery.  If the cancer has spread, then a new oncology treatment plan with chemo will be developed and we will walk that road again.

Many people have asked how you can live without your stomach.  Her body will need to adjust and she will be eating small portions much more frequently.  We have heard encouraging stories of folks living and leading a fairly normal life post-surgery.

Thank you for all of your support during our breast cancer battle!  We look forward to bringing those same prayer warriors along with some new ones on this sequel journey.

Here are some specific things you can be bringing to our Lord in prayer:

1. That the cancer has not spread, and surgery is the only required treatment
2. That Val handles the new lifestyle adjustments well
3. That through this all, God’s power is displayed, and He is praised

Thank you for walking again with us!  We will update you again post-surgery.

Marc & Valerie

As things have gotten more normal at our house, the frequency of me updating this blog has dropped way off.  In general, I think it is a great we are not having too many “exciting” things happening with Val’s health.  Last week, a family friend mentioned she hadn’t heard from the blog in a while and that I should post an update.  So here goes…..

Active treatment has been done for just over a year now and Val is on maintenance treatment.  She takes a handful of different drugs and is regularly seeing one of our medical team about every three months.  It is actually hard for me to keep up with all her meds, but she is doing a wonderful job with which ones, how much, etc.!

As you may or may not be aware of, one of the side effects to Val’s chemo treatment was heart damage.  Before chemo treatment started, they did some base line heart  function testing to have something to compare to post treatment.  Everything tested very good pre treatment.

The end of this summer the medical team started to test run tests to compare her heart function post treatment.  This post treatment testing showed she suffered some concerning heart damage.  After the first test she got lots of questions like; are you experiencing shortness of breath, having your feet or ankles swell, etc. etc.  They were questions you don’t hope to get asked until you are on Geritol.  Fortunately she wasn’t experiencing any of the side effects the team was asking about.

So about September we got a new medical team member; a Cardiac Oncologist (didn’t know they existed).  He is a great guy who handles all our (my) questions very well. 🙂  This fall they started Val on two different drugs to see if the heart function would improve.  The challenge is that the two drugs are also used to treat high blood pressure (which she does not have) and they need to be balanced in order to not cause her blood pressure to drop too low.  Always fun when you are looking at your wife and wondering if she is going to pass out….

Over the fall and winter they have done testing, upped the meds, tested her tolerance and then rinse and repeat.  She currently has gone through three rounds of testing, upping the drugs, waiting…..waiting some more and then testing again.  Currently the max dose of both drugs have been reached that still allow her blood pressure to run normal.  We just had our latest meeting with the medical oncologist and her heart function has improved, just not to the level that we had hoped for now.  The doc is hopeful that with time her function will get better and we just need to wait.

One other wrinkle tied into all this is scheduling her final reconstructive surgery.  The temporary implants she has in her chest also have metal in them.  The presence of metal keeps the heart doctor from being able to run the MRI testing he really wants to do to get the most accurate picture of her condition.

Val is scheduled for her final reconstructive surgery on Thursday, March 1st.  The plastics doc is all set to install permanent implants and the cardiac doc is all for this because it allows him to get the MRI done.  So the current schedule is March 1st for outpatient surgery.  She will then have a few months to rest and recuperate before having an MRI in May.  Unfortunately this last round of surgery includes the temporary installation of Val’s favorite medical device, the drain tube….  Look back in past blogs if you don’t remember the “fun” that was had with past drain installations.  We then will see the cardiac oncologist again in June to evaluate where things are at and make a longer term game plan.

Overall we continue to do very well as a family.  It is hard to believe just about two years ago we started the fight of our lives.  I love looking over at my wife and seeing her healthy glow back along with a full head of hair.  The lessons that God has been teaching us over the last two years continue to resonate with us; live each day and moment, don’t sweat the small stuff, love each other like crazy and lean deeply into our Father.  Thank you Susie for the reminder to update the blog.  It is always good for me to think through where we have been and marvel at God’s loving hand in our lives…..

It has been a long time since our last post and Val has been doing wonderful! Her hair is growing back nicely and she is generally feeling well. We have a good, proactive plan of doctor follow-ups for the foreseeable future. The next major task on the horizon is reconstruction surgery. That is still a way off due to letting her skin heal from the radiation treatments.

In addition, it has been neat to see the opportunities that Val has had recently to participate in various cancer research studies. The doctor’s she has been working with are tied into several studies. Val has been able to participate in a handful so far and we see that continuing in the future. There have been a couple that have involved me as well! I got to learn a killer foot rubbing technique that is similar to acupressure to help with side effects of chemo / radiation!

Many of you who know me (Marc), know that I like to keep track of major life events. I write them down, ponder them, etc. I just love marking off special times of year and reflecting on what has transpired between birthdays or anniversary, etc. Just ask my kids when it comes time to celebrate one of their birthday’s!

Well today is one of those markers in time. Exactly one year ago today, at 3:30pm I received the phone call from Val that confirmed her diagnosis of “invasive lobular carcinoma”. What a shock to the system. What a year it has been. Even now as I type these words it hits like a ton of bricks.

On that day a year ago, I wrote the following Bible verse in my book:
“So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.” Isaiah 41:10.

When I wrote that verse down in my book I had no idea at just how much I would fear and be dismayed. Let me just say it was and has been much…..    But in looking back over the year and seeing God show up time and time again in the big and little things, He continues to show us He is upholding us. It is a remarkable testament to the faithfulness of a loving God. Over and over again in my life it is easier to see God present in the trials than in the comfort.

Over the year, I “collected” Bible verses, devotionals, and quotes to help sort out all the we were going through as a family. Some of these have made blog posts like the story of Gideon’s 300 men taking Midian.

You can read that one right here:
https://gordonfamilysite.wordpress.com/2016/04/17/update-5/

It has been therapeutic today to spend time re-reading and tracking where we have been as a family. We have learned many things that I continue to pray do not leave us as things settle into this new normal. One of them is to just live today as today and let God be God. No more, no less. It has really helped me not get so wrapped around the axle with things this past year. I must admit there are many times I stumble and forget, falling into old patterns, but I am grateful for the God’s patience and grace.

We continue to be thankful for each and every one of you! You have all shown yourselves to be God’s hands and feet as you have helped with our physical, emotional and spiritual needs. We ask that you continue to pray for us. That we would have our eyes open to God’s will for our lives and that we would use all that He has taught us to further His kingdom and His agenda!

Marc