Journal

Journal entry by Lea-Ann McGregor

Wellllll ..... praise the Lord!!!!  You all rock --  if this hasn't been an answer to prayer, I don't know what is. All of the side affects I listed from treatment #1 have not been an issues with treatment #2!!!!! Three things:
  1. a small bit of cold sensitivity in his fingertips when he touched the steering wheel and it was about 28F out. 
  2. some trouble getting to sleep Thursday night (likely attributed to the steriod).
  3. some intermittent nausea but easily controlled with food choices or Zofran. 

Can you believe it? 

What's next: 

Neulasta injection Monday. And I'm going to go back to work until 4/6. 

Chemo #3 is switching up the schedule so it'll be every other Monday/Wednesday starting April 6 and 8. And he'll have an OBI (on-body injector) to self-inject the Neulasta. This change is to try and control the flow into Parkview's oncology infusion department. 

Please continue to pray:

  • for no side affects.
  • For the contract between Anthem & Parkview to be resolved.
  • For no COVID-19 issues. 
  • {update} for his platelet levels to increase. 

And, a big, big thank you to everyone who has sent a donation of money, gas, and food card. And for the UPS employees who gave us a collection. Thank you, thank you. We are so overwhelmed. 

Praise You In This Storm 

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Journal entry by Lea-Ann McGregor

Tomorrow , 3/19, is the infusion procedure #2.

9:15 for blood draw;

10:00 with Dr McCollom the palliative oncologist; 

10:30-4:30 infusion and meet with dietician.

The chemo drugs are mixed based on the blood draw in the morning,but this is what is currently scheduled.

  • first is an IV of Aloxi anti-nauseau which lasts for 48 hours; 
  • then a steriod Dexamethasone to also prevent nausua and to incrase energy and appetite.
  • Then a iv of Cinvanti which is also a 48 hour anti-nauseau drug.
  • then Oxaliplatin for 2 hours: sensitivity to cold with this one, mouth sores, loss of appetite, diarrhea, low blood counts, nausea and vomiting. 
  • next is Atropan
  • Irinotecan for 90 minutes: runny nose, garbles speach, hair loss, fatigue, diarrhea and nausea.
  • Leucovorin runs alongside the Irinotecan and is an assist for the 5fU.
  • 5fu: 47-hour fanny pack we call Bobby, since it looks like a bobber but Tom has a buddy who's nickname is bobber. Side affects can be nausea and vomiting, diarrhea, constipation, appetite changes, metallic taste and low blood counts. 


Friday: 3/20, Dexamethasone tablet to help with nauseau, appetite and energy

Saturday, 3/21, Dexamethasone table again. Return to remove Bobby.

Monday, 3/23, turn for a neulasta injection and meet with oncology. 

During the infusion, Tom has a heated massage lounge chair to relax in, can watch tv, tease the nurses, walk the hall [although I'm guessing that might change due to the pandemic?], order food off the Parkview menu, pick up snacks, listen to his ipod, or whatever floats his boat. For guests, there is a hard plastic school-style chair. There is only one person allowed to visit, so please let me know if you want to come in and I'll step out to the common area and go for a walk to stretch my legs. Of course, this might change due to pandemic precautions, so call him 260-499-0972 or me 260-499-0406 first. 

Prayer request would be NO side affects. He has been doing very well the last 7 days and that is so encouraging. His appetite continues to increase, with no nauseau or diahhrea, and absorption issues. 

He does have Zofran and Compazine as well as Immodium to take at home as well as the pancreatic enzymes, Creon. Thank you everyone. 

Our thoughts and prayers go out to those who are affected by job and school issues from the Covid-19 virus. Please hang in there and reach out to either of our numbers above to talk or text. I am reminded: 

John 16:33 
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” 


Journal entry by Lea-Ann McGregor

Today has been a good day for Tom. We went on a short walk (.3 of a  mile), he's had 50g of protein and 1400 calories already by lunchtime, the gas isn't too bad (is that a whipple recovery thing or a chemo thing, we're just not sure), and the rest of the day will be full of rest.

I'm torn, do you want both the good and the prayer requests? How much info is too much? I want to make sure you all are praying for us when we need it, but I also want to celebrate the good times.

The various and sundry news of the day has me talking to the cardinal that has been banging on the window ALL DAY. And, recognizing that spring is showing in our neighbor's flower beds. And worry about the affects of the corona virus on the health and economy of our friends and family. And, I received a book gift in the mail from a friendly UPS driver's wife called The No Worries Workbook .... and I'll heed the page's advice that just popped up (shown in the pictures). 

 Have a blessed day everyone! What are you thankful for? 

P.S. Our address in case you feel like mailing Tom a note or encouragement is: 9085 E 430 S, Wolcottville, IN 46795

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Journal entry by Lea-Ann McGregor

Thanks Giving:

1. thankful for the chance to sit at the breakfast table together, for an empty plate! What peace to actually see Tom eat and not rush to the bathroom or be so tired he just wants to sit in his chair and mindlessly watch tv or  even go take a nap.  

2. thankful for increased energy. You know when Tom starts to joke around a bit, he's feeling better. 

3. thankful for prayers that work -- today so far, no side affects of nausea, diahrrea, or bone pain. 

4. thankful food and drink tastes good, and he asks to eat. Yesterday and today are showing an increase in calories consumed as well as protein. Still not at the levels the nutritionist have set out, but getting closer. 

5. thankful for anyone who has donated to the food and gas fund. Its hard to stay under budget when we are trying lots of different sample foods to see what might work. 

6. thankful for the nutritionist who told us about protein enriched Kodiak foods. Tom can have his carbs and protein too. 

7. thankful for Shari who has shared her wisdom gained from experience about drinks and foods, and strength and movement.

8. thankful for friends and family who reach out to talk and text not only to Tom, but to me. I am sorry if I sob on your shoulder during a vulnerable emotional time, and I hope I can reciprocate if you need it.  

Prayer requests:
  • continued prayers for no side affects (specifically the diahrrea and nausea),
  • for continued appetite and digestion with no pancreas problems,
  • for rest and rejuvenation before the next cycle starts on the 19th,
  • for protection from the Corona virus (for you all too)
  • for me to have the creative capability and energy to serve my customers who are patiently waiting for knitting content
  • and for the opportunities Tom and I have been given to use and share Epicure meal plans and seasonings. 

How are we really doing?

Communicating! Many of you know that upon the suggestion of some very good friends, Tom and I took a seminar at Trinity English Lutheran very early in our marriage, about 25 years ago. That seminar was about the enneagram and our types. I know that the enneagram has become hype on social media and many don't like it because of its roots and origins, but we believe God gives us the ability to sort through information and knowledge and use it to glorify Him. That seminar 25 years ago was a turning point in our relationship as we started using the information to improve our understanding about ourselves and to improve our communication. Knowing how God has wired us to respond differently to the stress in our lives has helped us talk about what we are feeling and where we are at in this journey and has given us a focus to our prayer life and study. One of my core concerns is being alone or abandoned. Recently, I was reminded that I am safe and secure because of Christ in me. (https://www.instagram.com/p/B9g5AntFxxI/) Thankful for His Grace, Mercy and Peace. My prayer is for you all to feel the love and peace I feel today. 

Isaiah 54:10 For the mountains shall depart, and the hills be removed; but my kindness shall not depart from thee, neither shall the covenant of my peace be removedsaith the LORD that hath mercy on thee. 

 

Journal entry by Lea-Ann McGregor

Thankful the nutritionist told us about Kodiak cakes brand blueberry and chocolate chip muffins and pancake mix. One serving and a carnation breakfast drink starts Tom off with a lot of protein and fats, almost as much as he has taken in the past two days. And, he asked for both! 


Please pray he can get through the day with no side affects (nausea, diahrrea or constipation, exhaustion, neuropathy, to name a few). And he can increase his fluids to stay hydrated. 

I'm not going to lie, I'm really worried. The folfirinox needs a lot of anti-nausea meds to counteract it and while he needs rest, he is exhausted. Monday we go for a newlasta shot to raise his wbc count. 

Thank you all for praying and being there for us all. Seems like it's easy to slip into fear and despair. I'm listening to church right now and the song lyrics .... I'm no longer a slave to fear, I am a child of God .... resonates and rings true. Proclaiming faith in God, trust in Him, I have nothing to fear. 

https://youtu.be/f8TkUMJtK5k

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” ~ Matthew 6:34

https://www.crosswalk.com/blogs/debbie-mcdaniel/33-verses-to-remind-us--we-do-not-have-to-fear.html

May you enjoy the day. It's sunny, and going to be warmer here, and I can be thankful for the signs of spring. 

Journal entry by Lea-Ann McGregor

Literally .... lol, he has a fanny pack that is carrying a container of chemo hooked to his port until Saturday. He said it looks like a bobber. 

He is doing great though. He is well medicined for nauseau, vomiting and diahrea. He didn't have any of the side affects they told him to expect. I've decided he's just oppositional, and that's a good thing.

In the meantime I have about 50 pages of papers to read about each of the chemos (he is doing 3), the side affects, and expectations. We have information from the palliative oncology NP, the GI oncology MD, the nutritionist, the chemo class nurse, the chemo nurse who is from Noble County, the GI oncology NP ...... so much to absorb. 

The problem with this type of cancer is there is no tumor. The cancerous cells feed into the system like a paper towel soaks up water. They are microscopic. The CT scan doesn't show them. The CA 19-9 blood test isn't out of normal range. There really is nothing except the lymph nodes that were removed from the Whipple surgery to indicate he has cancer in his body. And that is why most bile duct cancer patients are inoperable and untreatable.

The hope is the chemo will stop the cancer. The chemo they are giving him is what they would give someone with colon cancer or pancreatic cancer. The source of the cancer has been removed with the whipple, so this the only thing they can do at this point. The doctor expects 12 cycles, so that'll be 6 months, of every other week treatment.

Tom's job is to eat and stay hydrated. We have to make sure he eats about 20g of protein 5x a day and he has to have about 2200 calories. He is hungry, which is a good thing, but he isn't that hungry. So we'll build up to it. I have protein to add to everything he eats. Anything that goes in his mouth has to pass the protein test first. And he isn't happy with me, but .....

Next step is Saturday morning for removal and closing of the port. Then on Monday they'll give him a shot of something to keep his body from attacking the chemo. And, the chemo nurse said for him to take claritin or he'll have bone aches. 

If you need his phone number or email, you can contact him through the link here [click on Ways to Help and then Email] or on facebook. Thanks for your continued prayers everyone!!! 

 

Journal entry by Lea-Ann McGregor

Hi everyone, I want to express my gratitude to everyone who has checked in on us here, by phone, email, facebook, everywhere ...... We have felt your prayers uplifting us all. We're patiently waiting for Thursday to get here. Tom's feeling restless, but really no big problems with the port, the whipple, eating okay [well, he's not happy about not being able to eat a big fat ol' slab o' cow, as our friend Laurie calls it], and he's just ready to get moving forward. As I sit here drinking my morning coffee and writing this, he's doing laps around our living room/kitchen. I'm also thinking about my friends and family who are fighting various illnesses and also about our friends in the Nashville area who are encountering the devastation of a tornado. Lifting up prayers for peace, healing, safety, and, yes, joy. We appreciate you all!!!!!

 

James 1:2-8 New King James Version (NKJV)Profiting from Trials

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces [a]patience. But let patience have its perfect work, that you may be [b]perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways.

Journal entry by Lea-Ann McGregor

Well, our overachieving rockstar has been moved up in the schedule for chemo to start. Here's the schedule I'd appreciate prayers over ....

Thursday, 2/27/2020: CT scan
Friday, 2/28/2020: port insertion
Thursday, 3/5/2020: chemo infusion 1 and 2 commences, infusion 3 started and return home
Saturday, 3/7/2020: removal of infusion 3
Monday, 3/9/2020: followup with any needs related to chemo. 

Rest for a week and repeat 3/19, 4/9, 4/23, etc. for 6 months or so ... there are many, many side affects related to the chemo regimens they are going to be giving him. Many are treatable by other medicines, and they will be maintaining a close watch to be sure all is proceeding as expected. 

We're standing firm on God's foundation -- He is our sustainer and we are asking for strength to survive this battle.  As Faith, Tom's mom, shared with us today:

Philippians 4:6-13 
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Thanks for Their Gifts
10 I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it. 11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength
Thank you all for your support and prayers. The financial support that has come in will greatly help us through the next few months too and we're very thankful [see 2/25 post for info about that].

Journal entry by Lea-Ann McGregor

The past two days have shown remarkable improvement in the digestion department. I'm sooooo relieved (and I think Tom is too -- 😏 ) .... he's hungry, can smell the food, and is keeping it in for a bit. He should start gaining weight soon, I pray. 

Yesterday, he had blood draws in preparation for Thursday (2/27) CT scans. And the appt to see the oncology doctor is still set for 3/5. Please put these on your prayer list. 

We have had several requests for a gofundme or other way to assist monetarily. We had resisted asking for help because we do have short term disability, but have found that it covers our monthly bills with no extra for food or gas. And, while we currently have good medical insurance (please pray Anthem and Parkview resolve their contract issues), we do have some extra expenses due to this illness. I do have work, but it is in the beginning stages of rebuilding so isn't bringing in much income at this point, especially as I had to put it on hold for a couple months. All that justification to say, if you are led to contribute toward our ongoing monthly expenses, here's the link to Tom's personal paypal: 

https://paypal.me/icefisherman?locale.x=en_US

NOTE: Make sure the box is not checked for paying for goods or services. 

-- i
t shouldn't cost either you or us to receive money through there and {edit}, yes, you do need to set up a paypal account, but you can use a card to send money without funding an account.

Humbly, gratefully, and prayerfully -- Tom and Lea-Ann

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Journal entry by Lea-Ann McGregor

From Tom: Ok, I met with the doctors today. I have cancer cells that are in 34 of my 35 lymph nodes the moved it from Stage 1 cancer to stage 3. I will need chemo and radiation in about 6 weeks. I have a appointment with the chemo doctor on march 5th to discuss the details and how much is needed. The cancer is also along the pancreas Doctor Schmidt put markers in for to show the area.

From Lea-Ann: Next appt is 2/27 for CT scans and a follow up on 3/5 with oncology to discuss treatment and schedule the port. 

Thank you everyone for praying. 

Journal entry by Lea-Ann McGregor

On Christmas Eve, Tom went back for more blood tests. The NP called Christmas Day and sent him back to the hospital as his liver levels and billirubin were elevated once again. 

Dr. Sharma did another ERCP, replaced the plastic stent with a metal stent and alerted the family that he had found abnormal cells and was sending them off for a biopsy. The attached picture shows where the stent was placed and the red dot is the Ampulla where the cells were found. 

Tom’s Story

Site created on December 29, 2019

Thank you for supporting Tom and our family by checking in here for updates, praises and prayer concerns. 


Update 3/17/2020: Whipple procedure performed 2/13/2020; chemo commenced 3/5/20 and the plan is every other week for 8-12 cycles. 

In August, Tom started breaking out with hives whenever he ate. We thought it was likely a food allergy and he stopped gluten and lost 10 pounds, but still had bouts of hives here and there.

In November, Benadryl wasn't controlling the itching, which was internal, and the first blood draw was done that showed negative for hepatitis and elevated liver levels. Soon after, Dr Egli referred us to Dr. Sharma at Parkview Oncology and several procedures were done as needed to open up the bile duct, introduce pancreas enzymes, reduce bilirubin levels, control the itching, etc. And, Tom lost 20 more pounds. All was well for a couple of weeks until the itching and jaundice returned at Christmas. another procedure, this time with the Spyglass equipment and Dr Sharma was able to observe and biopsy abnormal cells. The tumor review board covened and agreed Tom needs the bile duct Ampulla removed (Whipple procedure) and we will meet with Dr. from IU Health, Indianapolis, for that procedure .....
thank you for following along and praying.


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