Stability

Today I had a meeting with my oncology doctor before an anticipated treatment.  I had a CT scan last week in preparation for this meeting.  He went over the results of the scan which I will get to later on in this post. 

A couple weeks ago Leah had a doc appointment with my same doctor.  Since we both have the same doctor he felt free to share some medical information about me at her appointment.  The big news at that appointment was that the current regimen was beginning to kill my plasma.  What you should know is I get 2 forms of chemo every 2 weeks.  One I get during a 4 hour slot at the Cancer Pavilion downtown.  At the end of that they hook me up to a portable pump filled with another set of chemo drugs which runs for 46 hours and then unhooked and repeated 2 weeks later. It is the Chemo that runs during the 4 hours that is killing my plasma and therefore my blood levels aren't returning to normal as quickly as expected.  Due to this fact the doctor told me we would need to likely stop chemo as it had been given previously.  He also suggested we would likely be starting maintenance chemo.  Today the doctor confirmed we should not continue chemo as we have been.  He did also suggest we move to maintenance chemo which would consist of getting the pump hooked up for 46 hours every 2 weeks.   I have an appointment at U of M in 2 weeks so all of us wanted to see what the doctor there has to say about the treatment plan.  My schedule then is to meet with my Doc in Ann Arbor in 2 weeks and the meet with my oncologist and get treatment in 4 weeks.

Now to the scan.  The doctor read through the report with us.  The word he used to describe the report is Stable.  The news was that there are 2 lesions that are cystic and several others that are not.  One decreased in size by roughly 6 mm.  Another may have grown in size by a mm or 2.  Of course this is comparing a CT scan to a previous MRI.  Some of the difference may be due to the inaccuracy of one scan vs the other.  My doctor wants to repeat a scan in 8 weeks and is hoping for 2 scans to be exactly the same.  Until he sees me in 4 weeks he suggested I take a break from chemo and take that time to "recover" and maintain a "normal" life for that time.

---Kent

Rough Roads

On many roads, you will often find the sign, "rough road ahead."  In our lives I wish there were those signs too, but there simply isn't.   I think we all would worry way to much if we knew what lay ahead of us.  This weekend many of us had to endure many rough roads- snow covered and dangerous. Kent had a rough road too but not snow covered and dangerous! Kent had Chemo on Thursday and what laid a head was a rough road....

 Kent made it through chemo, a four hour process and then we made our way home.  He was doing ok but was weak.  This was due to putting him on many different drugs.   He went directly to the couch and  he slept off and on for quite a few hrs.  He is given steroids which keep him from sleeping all of the time, they also help him counteract the vomiting.(or are suppose to anyway)  He was feeling fine until roughly 8;30pm Thursday.  Kent's parents had just came to visit with us briefly and I saw Kent fading quickly.  I soon saw the "look."  He became sick.  I so wish it wasn't happening but it was and it didn't let up.  Now it happened only one other time as often as it did that night.  It proceeded into the night. That morning I called the Doctors office and they said to come in for hydration fluids and some IV Ativan.  A dear friend of ours  so graciously took us.  It was so appreciated.   It took roughly 2 and a half hours to give him the Hydration and Ativan.  When he came home he slept more.  He slept from 4:45 pm to 9:15 pm.  I woke him up to try eating a little.  Another dear friend brought us some left overs and he had a small amount of that, and that stayed down, I was very happy!  On Saturday, my brother (bless his heart) braved those rough roads and took us to get the pump off,  it roughly takes five minutes.  We did not have to wait so that was good.  The whole trip took an hour and a half.  We were very thankful for a good driver and big vehicle and a good shepherd who watched over us. Over the course of Thursday, Friday  beside the meal I just listed Kent had two crackers and 6 cheese its.  Saturday we tried introducing a little bit more food and he did well with that.

Today, I woke up at around 8 am and was wondering if it was smart for Kent to go to Church.  I knew I had some minor responsibilities and needed to go.  I quickly texted my mom to see if my brother, sister-in-law and mom could pick Lydia and myself up. ( For those who know me know I hate to drive in good weather and really hate snow driving ! )  Kent stayed in bed and caught up on some much needed sleep. All weekend he has chemo, Kent's energy is drained. Later this morning he joined us for a meal, he ate a fair amount and again I was thankful.

It is now Sunday evening, and the day has had some ups and downs... At Lunch my mom read a small part of a book, Be Still and know.  The author of this book was in a similar life situation as my mom when she wrote the book.  My mom and the Author were both married to pastors, married 41 yeas and both had husbands that passed away from cancer.  My mom could relate to so much of what she shared.  One thing was the book mentioned that our partners are our safety net and now that safety net is gone for both the author and my mom, and how they need to find a "new" safety net.  My mom and dad were a team and were there for each other to lean on.  My mom asked us, for those of us that were around the table to care, help and love our spouses because we don't know when the day will be that we will be apart.  Kent took this hard.  He wants to be that team forever with me and wants to make sure I am cared for and the thought of not being there scares him so much.  Today, when we came home the two of us shared a conversation and an embrace.  The road may have a rough road sign ahead but one thing I do know is together we will be.  I will stand by him no matter what.  We have had many things that have made each of us stronger.  Cancer was and is a huge part of that. Kent is walking the physical road of cancer but I will do what I can to walk and help him.

So when the sign rough road ahead comes in view take this, grab a hold of your Heavenly Father, love and care for those around you (your safety net) and do life together.  You never know what lies ahead. 

Blessings to all!

Kent and Leah and Lydia too!

Hi Ho Hi Ho its off to Chemo we go!

 Hi Ho! Kent has been off to work for 3 weeks now without having chemo. He has been able to enjoy his time off with a couple of Ski trips and catching up on a few odd and ends at the house as we are improving a few outdated things in our house.   It is nice to have some of that normalcy but we get a little use to it and then when chemo sneaks in it is like a halt to our ever so busy lives.  

So, I (Leah) had a Doctor Appointment yesterday with my Doctor who also happens to be Kent's Doctor or Oncologist too.  Kent came with me, and so we asked if Kent could get his Blood count while he was here.  He gave the OK.  He did and all levels were in the normal range! That was music to our ears since we haven't had that in quite some time.  The only thing was that Kent wasn't so excited because it meant Chemo again.  In the unofficial Doc appt.  he did tell us that we were close to making decisions that we were close to ending having the Chemo every other week and moving to just a maintenance type Chemo.  We are not sure what this all entails but will keep you updated as we find out more. Here is what I do know now....   Kent is receiving it today with wearing the pump home and then getting the Pump out on Sat.  Then he has yet to have a CAT scan scheduled next week some time after he has had time to recover from the chemo.   Then a Doctor appt. to discuss the CAT scan and further treatment plan and then treatment poss. after that.  Then we fast forward to Feb 20 to a Appt. at another local hospital to review that same CAT scan to see what else we can do to be pro active in helping Kent to be as free of cancer as he can be.  So it is off to Chemo we go for today and hopeful that this weekend with be free of any heavy sickness.

We are thankful for Chemo but are ready for this to be done on such a regular basis.  I have enjoyed having the weeks of Kent having no Chemo because I have been able to see Kent and Lydia go Skiing and have Kent help Lydia master the bunny hill and move to the next difficult Hill.  For most people that wouldn't be that exciting but Lydia gets so frustrated when she can't master something and to see her excel makes us both proud.  I am also working on a little project that I will show you all a little later like maybe late spring that we as a family have been doing and Kent was well enough to participate in.

So, Hi ho Hi ho it off to Chemo he goes for now!  We are thankful to all who have helped us and done so much for us.  We are also so thankful for those who have helped us with the snow removal in our Driveway.  If you are at all curious why we are all getting this much snow well you all can blame Kent he prays and prays for it and I pray and pray for it to be gone.   He has won the battle!  

Blessings on Your Day!
LEAH

Long time ago and Far Far Away!

A long time has passed since November 30.  That was the last time I have written a post on this Blog.  In that post I wrote I got a call from U of M wanting to talk about next steps. I called them back a few days later and talked with one of the Nurses in my Doctor's department.  She told me that My doctor (who was a liver surgeon and professor of general surgery) was no longer with them.   I don't know if that means he is no longer in that department or if He left U of M for another Job.  Either way what this does mean is I have a new Doctor at the U of M.  I am meeting with him February 20 and he wants to see a CT scan of my chest, abdomen, and pelvis.

In my last post I also talked about nausea and that they and reduced the amount of one of my chemo drugs.  I have had plenty of nausea and vomiting since that treatment.  I met with the PA on Dec 19 and brought up the issue of Vomiting and explained this happened always the night of treatment and was pretty much over by the next day.  They had previously prescribed a steroid for days 2 - 4.  After much discussion between the PA and me she suggested a path of taking Ativan earlier and often.  Ativan is normally used as an anti anxiety medication.  In my case this is used to combat nausea.  This usually works for me by making me less anxious, comfortable, and sleepy.  Dec 26th they gave me Ativan in IV form near the beginning of treatment.  As a result I slept through most of my treatment waking up just in time to go home.  I returned to sleeping when I got home and slept through most of the night that Thursday.  That is very unusual since the steroids usually keep me awake most of Thursday night.  I did end up vomiting once during the night but that beats the 3 times I normally did during each of the previous treatments.  I did end up sleeping most of the time from Thursday through Sunday with very short breaks to eat.

My next treatment is a week from yesterday.  I also meet with my oncologist in 3 weeks.  For now I Function normally for a week, then keep the couch company for a week.  I don't expect much to change until I meet with the Doc in February.  So for now Status Quo until the new scan is taken.

--Kent

What are the next steps?

Thanksgiving is typically a time for people to sit back and think about all the things they are thankful for.  This year I am thankful for all the doctors and nurses currently taking care of me.  I am thankful for the life I can continue to live each day, I am also thankful for the many people that help and care for me in many ways.  You all know who you are and what you do. 

Thursday would have been a chemo day but since the center was closed I needed to choose the Day before or the day after.  Naturally I chose to get treatment the day after Thanksgiving.  This meant Yesterday was the first day I've had Chemo Treatment in 4 weeks.  I was thankful for the break (even if it was due to low counts) which enabled me to do much needed work done on my master bathroom.

2 weeks ago I met with my Oncologist to go over the MRI results and talk about quality of life.  He talked about what to do to reduce the Nausea I had the 2 previous treatments.  His suggestion was to reduce the amount of the Irinotecan.  So this treatment the amount was reduced from 360 to 270.  I felt better immediately after and felt better on the way home.  I even felt hungry when I got home.  I was optimistic the nausea would be much less and managed with food.   However at 9:45 p.m. the feeling of nausea was back and back every hour for the next 4 hours. I don't know what else they can do with the mix to change this feeling but I'm game to try things.   The other thing my doc prescribed was a steroid for days 2-4 of chemo.  My problem is usually the worst is over day 1.

My next treatment day will be two weeks from this past Thursday which will be Dec 12.  I will see then what they are able to do with the nausea.

I got a call from U of M last week and wasn't able to answer it.  They left a message wanting to talk about next steps.  I need to call them back Monday or they will call me again next week.  It will be interesting to see what they have to say about what they feel the next steps should be.

So for now we wait.

--Kent

Support

Today is Thursday...  Thursday in our house has many different meanings.   It means one day til we have some days of out of the normal routine, every other week it means chemo weeks and on the opposite Thursdays we attend Gilda's Support Group. A cancer Support for all three of us to attend that my Dad introduced us to. 

Today was going to be a Chemo day for Kent along with a Dr. appointment to review what an MRI showed of Kent's Pelvis and Abdomen.   We saw the Dr. and he shared with us Good News!  When Kent had the ablation back in Oct along with the chemo he is receiving lately the results show there is NO active cancer in him at this point.  This DOES NOT mean that has become cancer free, it just means that the cancer in Kent's body is showing no growth and there is no new growth.    What this does this mean now, you may wonder... well he will continue chemo for 4 more months.  We do this to continue on the hopes that we keep him inactive.  You see there are still cysts that at this time could become active and to assure that it doesn't happen we need to keep up on this regimen.  Today he could not receive chemo due to his Neutrophil level being very low.  See if he would of had active cancer they would of gave him the chemo with the level he had. He doesn't have an urgency to have the chemo so why give it to him and make him ill.  We will wait a week when he is more "healthy and continue what the Dr.  has planned which is in about three months we will do another scan to keep up with how Kent's body is responding to chemo.   Then if we are still in the all clear we may begin a maintenance routine which will only include a pump hook up and home routine, no sitting in the "Chemo Chair", for four hours then pump.  We will take each step as it comes. 

Tonight, Lydia was at a party of a classmate and then went to a friends house.  Tonight Kent and I went to Gilda's.  Tonight we both received a round of applause as we announced to our support groups (individual) that Kent's Cancer was inactive.  As Kent and I were sitting telling our story of celebration we had those in our group that had good news also but those to who have had hardship and grief in there cancer journey.  Kent and I really have been supported though this organization but at the same time feel that we have been put in our groups to encourage those around us.   Tonight  I pray for those in our Gilda's family as some weep over the end of their journey and some rejoice as God has given them another year in life.

So you may ask how Kent Celebrated his day, well.... He tore apart our "master bath." Yup.  He said, he was going to take the back splash off which led to a series of things like... taking the mirror off, sanding the walls, taking the counter off and mudding any holes in the room oh which led to A LOT more. Only Kent would do that.  But it is back to work for this boy tomorrow.  I think I may call his bosses to tell them I know he isn't afraid to get to work:) 

There are so many places of Support. Support groups for many things that are happening in and around our Community.  It may not be cancer it may be ?? you fill it in, but don't be afraid of the care that is out there for you.  people may need to hear your story, people may touch your heart somehow.  Love and care for those around you, you may be blessed in so many ways.  I have.

-- Leah

Gift Giving!

Kent, Lydia and myself have always kept quite busy on weekends. Every other week on and off for about 2 years now we have been slowed down due to Chemo. You can often find us on non chemo weeks going from earlier morning to late evening doing this that and everything in between. We have never been ones to just sit.  Lydia loves when we have many things to do together as a family.

This week WAS a chemo week and one of those do nothing weekends.  Lydia was simply bored.

 Kent had Chemo on Thursday (Halloween) and was very sick that evening.  Often during chemo you can find Kent laying completely flat. Despite him feeling ill,  I still took Lydia for our annual night at my moms with a soup dinner and Trick or Treating.  The night just wasn't the same as my Dad loved this holiday and wasn't there and Kent was home not feeling well all night. I worried how Kent was holding up by himself. Lydia stayed with my mom that evening as she doesn't do well with Kent being ill.  I returned later that evening to find Kent NOT doing well at all.  Well, what do I do? It is a guessing game.  I was out of ideas. I was very nervous myself.   I grabbed the phone and called after hours.  They returned my call within a half hour. I explained that Kent simply was not holding food down and just was miserable.  They explained that I needed to give him two of his Meds. at the same time and then continuing him laying flat. You need to know that they don't like you to give these meds very quickly because too soon after the chemo they administer because it could mess up the regimen.  After a couple of hours he was zonked out,( a symptom of both Meds.)  the whole night!  He did Not wake or  become sick at any point that night, for that I was very happy. 

This weekend, Saturday into Sunday Kent was doing better.  He is holding food down and moving ever so gingerly wherever he went.  His appetite was very little but he was gaining that back ever so slowly.  He eats little and often.  He found himself eating every hour or two,  so do I, which is good for him and not for me!

Tonight, I sat next to him and he was definitely doing better but you can tell he isn't a hundred percent yet.  He often complained about his stomach being off and needing some relief.  I feel helpless.  I feel like I am not doing what needs to be done.

Today, I was wondering if he would make it to church.  We often have the Saturday evening discussion on Chemo weeks if he feels like going in the morning and he will tell me that he will face that in the morning.  I sometimes am amazed he wants to go, but Kent loves his church family and needs his few hugs that he always receives every Sunday morning without fail! ( Those of you know who you are ) :)  It is the best way we start our week. 

This week will bring a  Doc appointment.  Kent will have an MRI of the abdomen and the pelvis to see the results of the RFA procedure back in Oct.  We will not find out anything information wise until the 14th of November when Kent has an oncologist appt. and Scheduled chemo on that day.  We are praying for the best results. 

Kent and I were calculating a few things out today and Kent told me that He will be done with Chemo around Christmas if all goes as we had it planned out.  We will be talking to our Dr. about how to avoid the Holidays as Kent is suppose to receive Chemo on Thanksgiving  and a day after Christmas.  

As I end this I have been reminded of how much life is a gift. A gift that has to be shared. Today in Kid zone the kids and I talked about talents that we have are to be given away not be  just received.  Today, I was given a gift by a few people.  In slowing down every other weekend because of Kent  I have been shown to that I need to stop and care for those around me.  Not being so focused on me.  Caring for others, has been taught to me by two loving parents. One who still shows me that and one who I will always remember how he showed me.  Another person today showed me that I was meant to teach the young people in church and that they saw my dad in me.  I promised my dad before he passed that I will teach his grand kids and the kids of Sunrise more about living for Jesus! 

So Living for Jesus is what Kent, Lydia and myself will do.  We each have gifts to be given away. So do you.  What do you have going on next weekend? It's a non Chemo week here at this household but maybe I (we) just need to slow down and give someone a gift.  Will you give one along with me? 

Leah