Long Time No Chat

It has been awhile since I have written anything on my blog, as there has not been any major news.  I continue to heal from my surgery.  I am not having any problems swallowing and there have been no leaks where my stomach now connects to my esophagus in my neck.

However, I am finding the recovery challenging.  With all these internal changes, I am trying to adjust to a short esophagus and small stomach.  I am not able to eat or drink very much.  I constantly have acid reflux and nausea.  I am still trying to figure out what to eat.  I am very low on energy.  I have gone back to the gastroenterologist.  I also visited a natural doctor and dietician.   We are still trying to find the right food that is both nutritious and reasonably good tasting.  I have not been able to eat the high calorie foods as they cause diarrhea. I am losing some weight, which makes me concerned.

I am still walking most days, even though I don’t have much energy.  I usually enjoy walking 3-4 miles a day.  I walk from our Penderbrook townhouse to our new house that is being built.  I hope eventually to get back to running, but it will be awhile.  I am reminded of where I was before the cancer diagnosis, as described below.

Last year on November 2, 2013, I felt so good about my marathon training.  I had run my 20-mile workout for the day and felt good about the upcoming race on November 16, 2013.  I had trained hard.  Troy, Steve, Stacey had also all trained hard.  We were all ready and excited for the race that we had worked so hard for.  Unfortunately when I got the cancer diagnosis on November 11, I was not able to run the marathon: however,  I was able to run the last 8 miles with them.

But as I reflect back on my life now, the marathon race preparation was preparing me to be able to handle what would be the next year of my life.  It took a lot of hard work and determination to prepare for the race and now I am able to have this same determination as I recover from my esophagus surgery. 

Port is Out

I got my port out this morning.  I was supposed to have it removed Monday but had to reschedule because of the snow.  I was so anxious because I've just had so much done.  This was the last thing I was having removed and I was so excited to be done but scared something would go wrong.  The doctors were all really understanding and I did really well.  I told the doctors I was cold and they gave me a bunch of warm blankets to wrap up in.

I'm still trying to figure out what to eat.  I have low energy a lot and my system is still learning to tolerate more complex foods.  After my procedure today I was given a sandwich with MAYONNAISE!  At first I thought the doctor was joking with me in offering it.  He was serious and it was delicious.

My procedure this morning did require anesthesia so I am just resting at home today.  I am not feeling very well and the wound on my chest where they removed the port is very sore.  I look forward to feeling better in the coming days.

I love walking to our new home that is in the process of being built.  I loved walking on Monday when it was snowing/  It was very cold but it was a fun walk.

I am touched by all the offers to bring meals and the sweet thoughts in your letters and comments on this blog.  Thank you for your thoughtfulness in sending gifts.

Good Bye Joey

I broke up with my Joey(my ugly feeding tube).  He was a good friend but I am very happy to have it out of me.  I went in a day early because I had developed a kind of infection around the tube.  Because of the bad experience I had earlier with  the tube I was very apprehensive to have it removed.  While I was voicing my concerns to the Doctor he promised to warn me before he removed it.  I instantly knew he was tricking me and removing it as we spoke.  The great news is that there was no pain at all.  After it was removed he put some topical anesthetic on it which caused a lot of pain.

I had my final chest X-ray which confirmed that there is no more chyle leak.  Thus, I'm allowed to eat any kind of food.  I do have to be careful to chew food very well and not eat things that might catch in my throat.

I was telling the doctors how I am still having pain in my sternum, back, side, and neck.  They laughed and said, "Yes!  And it will contiune.  This is why we told you 2014 would be the year of the surgery."

I only have one more foreign object to be removed.  It is this IV port in my neck.  I will have it removed Monday morning.   It has been causing me pain and I can not wait to have it out.  I'll make my next blog post on Monday after it's completed.

Thank you for all of your comments, prayers, and letters.

Stacey Came

Stacey spent Valentines weekend with us.  The second she walked in the door she bought with her a burst of energy and positivity.  She was a ton of help to me at all hours of the day and night; sleeping in the same room as me to help me through the long nights.  She gave me back rubs and helped me with my medicine.  I know she missed out on a lot of sleep but she helped me so much.  Thanks to Brock for sharing his Valentine with me.
We watched a few shows together such as Friends, Downton Abbey, Parenthood, The Goldbergs, and the Olympics.  This is a a picture of us on Sunday night watching TV.

We delivered chocolates to some of my doctors and surgeons over the weekend to say thank you for all their work during my surgery and recovery.  During the day my back pain is improving which is great. I have been feeling some nausea which I think is caused by all the pain medication I am taking.  The nights are still long but are improving some.  

Thanks for all your help and prayers. I know they are helping me get a little better each day.

More Good News

Good News!  I finally was able to catch up with my Oncologist and he informed me that I will not have to have chemotherapy.  I am really excited about this and feel very blessed.

Today the surgeon removed the drainage tube (goodbye safety pin) and some more of the staples from my incision.  I had a swallow test and and chest x ray.  Everything looks good.  He thinks that in a week or so I will be able to eat foods that have fat in them.  Overall, he thinks I am recovering very well.

My sister, Yvonne was here for 5 days.  She was such a calming influence and was a lifesaver at night. She was there for back rubs, medicine, and great talks.  I had a great time going on errands with her and walking in the snow.  For those who aren't in the North East, you may have heard about our recent winter storm.  It was huge but made for some lovely sights.

Sleeping is still a huge struggle for me.  The nights are so long and painful.  I'm always grateful to see the morning and especially for my shower.  Best part of my day!

I have had some time to do some reflection.  Before my most recent surgery I had a surgery to install my J tube.  I had complications in my stomach and bowels.  I had to be in the hospital over Christmas and I was so bitter and upset thinking that I had this ugly tube in me that had robbed me of my health and of spending the holidays with my family.

But it was because of this ugly tube that the doctors went ahead and scheduled the surgery ahead of chemotherapy.  It's because of this ugly tube that they were able to get all the cancer in one fell swoop.  It's because of this ugly tube that I won't have to have radiation or chemotherapy.  What a blessing from something that I initially perceived as such a curse to me.  This beautiful tube is now a best friend.

Thanks to everyone who has offered to help with meals for us.  Steve and the others have eaten well through all of this!  I love your cards, and comments on this blog.  Please keep praying for me and know that I pray for you as well.

Outings with Joey

Steph's been here for a little over a week now.  I'm so grateful for her and all the help she has been.  Steve, Troy and I will miss her so much tomorrow when she returns home.  I'm also so grateful for her mother in law, Iona Syphus who flew across the country and spent 5 snow days taking care of the kids while Lee was at work.

I appreciate how many people have offered to come and help.  Steve has to be out of town briefly this next week so my sister Yvonne has offered to come and help me.  I'm excited to see her.  Stacey will come later in the week.

As I'm feeling a little better each day I'm having fun going on different outings.  Of course I have to bring my Joey but it's so nice to be out.  I'm sure I look weird connected to someone by a surgical tube in a backpack but it's better than being stuck in the house all day!  Last week we went to Costco.

Yesterday we went see the hole that is being dug for our new house.

So I'm making progress.

The most difficult thing for me right now is the extreme pain I have in my back.  I can't lay down for very long at a time.  Eating is not much fun right now either as it's mostly meal replacement shakes and egg whites.  My food has to be fat free (yeah, he messed up in telling me that I could have salmon).  The good thing there is that after another month or so I will probably be able to eat a more typical diet.  

Thanks to all for your love and concern.  I am also grateful for all the prayers of family and friends.  Our neighbor, who we don't know very well told me today that she prays for us every day.  I believe these prayers are helping me along the path to recovery.  

Post Surgery Dr. Appointment

This morning I met with Dr. Kiernan, who performed my surgery.  First we went to the radiologist and had a couple of chest X-rays taken and the barium swallow test to check and make sure nothing is leaking.  I had to go in fasting but was still getting my tube feedings throughout the night. While I appreciate how my "Joey" is helping me get stronger I am tired of his company!

After the tests we met in Dr. Kiernan's office.  They shared with us the good news that there was no leakage.  The best news?  I've been advanced to a full liquid to soft diet.  Still fat free, but I can eat things that I can chew and swallow easily.  Fish is ok, scrambled eggs, hamburger, but no chicken or other things that are more difficult to swallow.  The dietician gave us a list and Stephanie is at the store as we speak.  

The next major step will be to decrease some of the pain meds.  I am looking forward to a day when I don't need pain medicine at all.

I've been having some soreness near my belly button- it feels like a big knot.  It's very uncomfortable and Dr. Kiernan said that was most likely caused because I have some internal stitches in that area.  

Troy and I have had a lot of fun with Stephanie here.  We are looking forward to The Biggest Loser finale tonight.

Safety Pin?

Between the back pain, stomach pain, and anxiety nights continue to be difficult.  Steve finally got a night off as Troy and Stephanie divided the night up and took care of me.  I was able to get a blessing from Steve that gave me calm and helped me rest.

Today I went with Steve to see the lot for the new house.  Construction will begin soon.  We did an hour walk on our new neighborhood.  Houses are starting to take shape and some are even finished.

Back to cancer.  This is the drain where the stomach and esophagus are now connected below my neck.  I'm going to the doctor on Tuesday and hope to get rid of this safety pin.  So if anyone needs a safety pin please mention it in the comments.

My next blog entry will be after my doctors appointment on Tuesday.  I'm so grateful for you all.  

Steph's Here

The nights are getting better but they are still hard times for me.  I am not able to sleep for more than an hour at a time.  I continue to derive comfort from the memory of my parents.  Early this morning I was hurting so baldy.  I was at a loss for what to do.  A while later I woke up and I felt that Mom and Dad had been reading me a story.  They told me "We are going to have to go now but you are going to be alright."  After this I slept well and had a peaceful morning.

My mother would have been 91 years old today.  I am reminded of what a compassionate person she was.   I believe that she found joy in helping others and would often spend time with those who others seemed to not place a priority on serving.

My oldest daughter Stephanie came today to help me out for a little over a week.  She has been so helpful today.  We have had so much fun with her.  We took another walk today and the weather was much easier to enjoy as it was much warmer.  What a beautiful day.

Thanks again for all your support.  This blog has been such a blessing to me.  Please feel free to pass along the blog address to anyone who asks about my progress.  Thanks again for your comments.

Enjoying Nature

I have been having a lot of back pain the last day or so.  This made for a very long night for me.  Between learning my medicine schedule and the time it takes me to get out of bed to go to the bathroom I got little sleep.  I was able to take comfort in the knowledge that I would be able to shower in the morning.  That would be my first shower since my surgery.

This morning before my shower I was able to finally remove many of the dressings from my surgery.  I'm going to have some amazing scars.  I'll never look the same in a swim suit but I'm so glad to have had this surgery.  The shower felt amazing.  I didn't want to get out of the hot water which felt so good on my back.  It sure beats a sponge bath!

The rehabilitation highlight of the day was that I was able to go for a walk with Troy and his dog.  Despite it being 35 degrees it was exhilarating to walk for 30 minutes.  I was happy to dodge ice patches on the sidewalk and feel the wind on my face after being inside for 10 days.  What a blessing nature is!

Thanks for your support.  The kind, supportive words in your comments once again brought me to tears today.

HUGE NEWS!

We got a call from our surgeon early this afternoon.  He told us that they had gotten all of the cancer and that it had not spread from the site that they removed.  What a relief!  As Steve was telling me I kept waiting for the "but" or the bad news.  It never came.  I hugged Steve and started crying.

I slept better last night.  We made a medicine schedule for the night and stuck to it.  It wasn't perfect but was a big improvement.  Both Steve and I got more sleep than we have had in some time.

I wanted to introduce you to my constant companion (not named Steve) through this ordeal.

This is my Joey.  It is a backpack with a container of high calorie liquid connected to a tube that runs inside my jejunum and feeds me around the clock.  Nutrition is a big part of my recovery at this time so it is important that I get enough calories.  Otherwise, I am allowed only a fat-free, clear liquid diet.  I miss chewing!

Today my Dad would have been 98 years old.  I have felt his and my mother's spirit with me throughout thus ordeal.  It has become a part of my bedtime ritual to put my parent's photo near my bed.  They give me great comfort.

I am so grateful for your prayers, your love, and the supportive comments that you have offered during the last week.  I also want to recognize Steve for the countless things he has done to help me.  I am also grateful for my children's support.

Home Now

This morning when I met with my surgeon I told him I was feeling much better.  I  slept well last night.  He responded by giving me two thumbs up!  He thinks I am making very good progress.  For any of you wondering we have not yet gotten the results back from pathology but should find out in the next few days.

I was released this afternoon.  It's great to be home even though I still have a long way to go.  I had concerns about getting up and down the stairs but so far it is going well.  I'm excited to catch up with my DVR.  I'm also excited to be in my own bed and away from the hospital bed!

Tubeless

I had a rough night last night. I wasn't able to get my pain medicine until after midnight so I was in so much pain I was not able to fall asleep. It was a frustrating night for both me and Steve and we are both tired today.

This morning I was in a lot of pain and was wanting to manage my pain with medicine but I needed to wait until the surgeon came to speak with us because the medicine makes me very tired.  I had to wait about an hour until he came with a sharp pain in the top of my shoulder.  I put three pictures at the foot of my bed to remind me who loves me.

Steve put spiritual music on in the room and held my hand until the surgeon came. I have had a hard time connecting with this surgeon because he is a more stern man and when he came in he was very kind and asked about the family. I was happy to feel this soft spot in him.

The resident came to take out the chest tubes this morning. She told Steve how to hold me and I wrapped my arms around him. I had to hold him and hum. She pulled them out one at a time. It was a bizarre feeling to have them removed as I could feel the ripples of the tubes as they came out. They looked like a white tube inserted eight inches in my back. The nurses liken them to garden hoses.  It's been so nice today because the pain has been reduced and I no longer have to worry about carrying around the drainage containers.

The doctor thinks I will probably get to go home tomorrow.  That's such exciting news.  It has been so much easier to walk without the chest tubes. Things are really looking up!

More Pain but Eating Too

Yesterday was a struggle to get the right medicine that will treat my pain.  Last night was a very long and difficult night because of the pain.  However, beginning this morning the doctors have prescribed some different medicines that have helped relieve some of the pain.  While this was great for the morning, this afternoon as I am writing this the sever pain has returned.  

I have found comfort through prayer and have felt the love that the savior has for me.  I am reminded of the paintings of Greg Olsen.  This is one of my favorites:

I was able to eat some soup today.  It's so much better to eat than to be fed by the tube! Thanks for all of your kindness and support.  

More of the Same

While all my doctors and nurses say I'm doing well I still feel like I've been run over by a train.  We are continuing to try to control the pain with walking and medication but there is still a lot of pain.

On a positive note I was allowed to begin eating some clear liquids.  Chicken broth and apple juice tasted good.  It was so nice to drink the chicken broth because it was hot.  I would love a mug of peppermint tea.  The last few nurses have been really good.  I enjoy talking with the nurses and hearing about their lives and families.  For example, the nurse last night mentioned that she lived with her sister and her sister's dog.  Her sister has cancer and the dog has cared for the sister.  He apparently is a big brute with a soft spot for this lucky lady.

I really appreciate your love and support.  A half an hour ago I was crying because of the pain but writing this has helped me feel better.

Pain and Progress

Last night was really hard for me. I was in a lot of pain but was reluctant to take pain medicine because I'm concerned about its effect on my stomach. I finally gave in about 3:00 AM and took pain medicine and was able to sleep a little bit. I also had a very painful coughing fit. It lasted about a minute and ended with me coughing up some phlegm which scared me but my surgeon said that was actually a good thing.

On a more positive note, I got the tube out of my nose this morning. It feels so good to have it out. I think that as each of these things comes out of me I'm going to feel a little bit more like myself.  

I'm getting a reputation around here as the lady who walks a lot. I like to try to walk a little bit longer each time than I did the last time. Yesterday I walked about 7 times for over 20 minutes each time.  I even brought my running shoes so I can lace them up and take this seriously!  

Another good thing is that (finally) ground is being broken on our new house today. It's been a long process to plan and get all the permits. It's nice to know that they are starting work on it. 

I'm in a lot of pain today. I am using the pain medicine which helps some.  I was also able to take a liquid medicine by mouth: the first thing I've eaten or drank since the surgery. It's stayed down so it looks like my surgeons knew what they were doing!  

So you can see the progress I'm making I am going to post a picture of me after my surgery on Monday:

Here I am today:

I can't read much because the pain medicine makes my mind fuzzy. I would LOVE it if any of you would pass on any inspirational quotes in the comments. Thanks so much for your kind words yesterday. I'm often brought to tears reading your supportive words at this difficult time. 

Rough Time

I feel awful today.  I am in a ton of pain. The medicine helps some but I have other pain that the medicine does not help.  I am discouraged when  I see all the different tubes going in and out of me. I just hurt and don't feel like myself.

I'm scared that my stomach is acting up again. It hurts and I'm fearful that it will complicate this surgical recovery and I will be forced to stay longer in the hospital.

On a good note, my nurses have been very good today. Yesterday, I had a hard time with my nurse and the kindness of the nurses today has made such a difference.  Steve is my rock. He held my hand because I was in so much pain from 3:30 AM on while sitting in the chair next to me. I know he wasn't able to sleep and I don't know what I'd do without him.

I have been told to exercise my lungs by blowing and sucking into different instruments.  I have to blow into this about 30 times an hour:

I also have to suck into this:

The blue base rises the harder I suck and I am given a different goal for each day.   As you can see I am at about 700 for today.  This instrument is far more difficult for me than the other one. 

My surgeons come in every morning and they all say I am doing well. I am working hard but am very discouraged right now. I love reading your comments and your support gives me strength during this difficult time.

Thanks for all of your kindness in sending me cards and offering to help with meals for Steve and Troy.

Walking Now

I walked four different times yesterday. I worked my way up from a couple of steps to two full laps around the wing on the fourth time. I'm in my own room now. It is room 262. Unfortunately, it doesn't have a bed for Steve. The poor guy is sleeping in a chair; injured back back and all!  ***Update:  Our dear friend, Bishop Burton was able to get us a much better room at the end of the hall that will be bigger and MUCH quieter. He has been such an asset through all of this!

I got flowers from Steve's brothers and sisters and from my brothers and sisters. They are beautiful and their smell brightens up my room.  Thank you so much!

I didn't sleep well last night. I only got about 3 1/2 hours. I did a swallow test early this morning. The doctors needed to make sure that my new esopgagus works. I had to swallow some contrast. I was very concerned about doing this because I haven't been eating anything by mouth. There was a misunderstanding and I thought I had to drink 32 ounces of contrast. I was crying because I didn't think I could do so. In reality I only had to drink four swallows of the contrast. The doctors were encouraged by what they saw but my surgeons need to look at the test.

I was able to wash my hair with the help of the nurse. This felt so good to me. Troy blow dried my hair and the warm air felt very good to me.  I put a lot of spiritual music on my iPod and it has been good to play it (she seriously had us drag a Bose speaker in here so she could blast Hillary Weeks and the Tabernacle Choir).  Thanks for all your support.

Feeling Grateful

I'm in a lot of pain right now and I'm having a hard time talking but I want to communicate that I feel like the first step in me feeling better has been all the love and support I have felt from all of your comments on this blog.  I would not be doing this well without your support. Here are a couple of stories about the last few hours.

I got the breathing tube removed at about 4:30am. The nurse was amazed at my resolve in the removal process saying that most people fight it or scream.  After it was out she asked why I didn't fight it. I said "Well it hurt but I knew it had to come out."

My hands were tied down for most of the morning. Steve was holding my hand and while the breathing tube was in I could not talk. My face was itching and I could not scratch it. Through nodding I was able to communicate that I wanted him to scratch that itch and how much I appreciated it. I'm so grateful for him in this process.

It's amazing to me what human touch can do. Steve holding my hand has meant the world to me. It reminds me of Yvonne when Mom was sick that she would insist on rubbing Mom's feet and shoulders and how Yvonne would comment that she thought it was important. Mom would say how good that made her feel. I agree completely.

I'm in the ICU and will be moved to my room in the next couple of hours. I am sucking on ice chips (I'm so thirsty) and working on exercising my lungs by sucking and blowing.  I'm also currently getting by first tube feeding. Nutrition is going to be key in my recovery.

I feel the overwhelming love that Heavenly Father has for me.

Finished with Surgery

The surgeons were able to remove the tumor and Steve says "They are very proud of themselves."  Marilynn will spend a couple more hours in surgery and then be moved into the ICU for the rest of the night.  They will keep her under anesthesia until about 2:00 AM and then let her wake up.  After that she will be moved into her own room.  Thanks for all your prayers.

The Day Before Surgery

Today I have turned a corner.  Whereas in the past weeks I have been scared and feeling ill, today I feel calm and focused on the task at hand.  I am so grateful for the countless prayers that have gone up for me.  Through these, and your phone calls, emails and our talks I can feel Heavenly Father's arms surrounding me.  I can feel Mom and Dad close to me.  I am grateful for the team of doctors that I have.   

I am so grateful for Steve and for the love and around the clock care that he gives me.  The comfort I feel now is akin to being held in my mother's arms during a difficult day.  

I am scared.  I am scared to hurt.  I am scared of the rehabilitation.  That said, I know I can do hard things.  I feel that, throughout my life, I have had to work harder for things than others.  It is this determination that will serve me well and will help me beat cancer.  

I will continue to update this blog (with the help of my family) to let you know of my progress going forward.  I love you all,