Courage and Lots of Little Threads

Posted on: Fri, 07/27/2018 - 11:33 By: akpratt


I was texting with my brother yesterday after a long day of chemo (last one) and realized that I had a lot of little threads going on that I would really appreciate prayer for. And I know who prays for me.  Y'all.

This verse from Psalms cropped up in my daily devotions with Yvette a few days ago and its promises give me courage to keep going in the face of new challenges.

Give ear, O LORD, to my prayer; and give heed to the voice of my supplications!
Psalm 86:6

When I started this email a few days ago the title was "Grazing, Sipping, Nibbling, and Generally Getting Food Down". This swallowing thing has become very painful. Even getting water down is a challenge. I keep a sipper bottle with me constantly and just work at it all day but even so 24 oz in a day isn't the 72 oz I need to stay hydrated and wash all the dying cells out and drugs out of my system. Eating requires constant tweaking. Things that work one day may not work the next and the constant hunting for things to try is a challenge. And then there are pleasant surprises. Yvette made me a fried egg over easy and it went down so well hers disappeared down my throat before she got to it. I can eat club crackers but soft white bread is a challenge. Sesame sticks work but Goldfish crackers not so much (what can I say - I had a craving one day.) Hummus okay one day but not the next. Tell me why I can eat coleslaw but not salad? Constant experimentation is the order of the day for sure.

I'm struggling with fatigue really for the first time. Netflix binges on "Death in Paradise" (reminds me of the genteel side of the smaller Jamaican communities in Panama) and "Blue Planet" are okay but they leave me feeling unproductive. And when a drive to Yvette's doctor's appointment leaves me feeling tired and grumpy (and I wasn't even the one driving) it makes me wonder if I'm safe to drive when later in the day I need to get up to my chemo lab appointment. I did but I immediately fell asleep for three hours when I got to my apartment.

I had some great impromptu meetings with radiation nurses last week. The first one was to deal with the radiation burn getting worse. Simple change from paper towel (which is designed to soak up water and I was using as a substitute for gauze) to a hand towel soaked to leave water running down my chest solved the problem. And rather than just doing it twice a day - whenever I needed it made the itchiness go away and makes me pretty confident that it isn't going to get a whole lot worse. Though the doctor today did warn me that expects that it will open up before we are done. And I got a prescription for flamazine to deal with that.

The second nurse meeting was regarding the swallowing issues. I was about to bow to the "pink lady" a cocktail of lidocaine (an anesthetic) and almagel. He talked me out of it - sensing my reservations. And encouraged me to use the T3's (Tylenol with codeine) that I already have. His pep talk encouraged me in the constant experimentation that is required to work with this. His most affirming words were the comment "You have no idea how resistant most people are to experimentation and finding what works. You are doing the right things and more importantly you are hitting the targets for protein and calories in the midst of it."

Dr. Pelman gave me the same encouragement when we talked yesterday. He pointed out that I still had lots of room in the T3 prescription. I had been using half pills and occasionally whole pills. Somehow I had in my head that I could only take 5 pills a day and I can actually take up to 12. Of course the limitation is that I need to time them so I can still drive to my radiation treatments or I can wave the white flag and arrange for someone to drive me there for those. That process I started today. I gave a couple of people a head's up that I may need them for a short drive.

And then there was my meeting last week with Dr. Johal (medical oncologist.) In the course my exam it came out that what had been diagnosed earlier as a sebaceous cyst on my back was changing character with the chemo/RT treatment. Something it shouldn't be doing. So we are arranging for an ultrasound guided biopsy. Big needle to get lots of good samples. And the question is again is this metastasized lung or breast cancer? Or is it - oh joy - a fourth cancer? If it metastasized, it becomes Stage 4 - terminal. And while it isn't changing the current treatment it will change the path forward from immunotherapy to the targeted therapy for the lung cancer that I mentioned in the last letter. And the mastectomies to tamoxifen for the breast cancer. The "oh joy" I'm just going to wait to deal with if it materializes.

On the other hand we are setting up a meeting to begin the breast cancer mastectomies. That will happen July 23rd with the surgeries being tentatively being scheduled for the week of August 10th. Two weeks after that he would like to see me start on the immunotherapy drugs to go after the last of the lung cancer with the goal of NED (No Evidence of Disease). I have another meeting scheduled with him for July 19th to discuss all these little pieces.

I learned today that I will be meeting with Dr Lund (radiation oncologist) again at the end of the Radiation treatment on July 10th. I will get the skinny then from him about determining the success of treatment and what my recovery period should look like from his perspective.

And with my final chemo today that recovery period and the transition to it is starting to take shape.

Going back to the nurse discussion on swallowing, he raised something for me to keep in mind. He pointed out that for the last six weeks, my life has been pretty regimented with chemo and RT appointments. Those props stop shortly. While many people look forward to them ending, there are two things that happen. The effects carry on. Fatigue doesn't stop. Radiation burn doesn't instantly heal. The swallowing issues are still there. Improving but still there.  And things can get out of whack. The second is that the support system changes. You don't have the daily check-in and the expectation is that you will call the nurse line if you have issues. They will refer you to a clinic upstairs and a different set of nurses.

In my case cause I'll be moving on to both the breast issues and the immunotherapy, I think the hiatus will be relatively brief. Even so I'm putting some  feelers out to see if I can find a boat for a sail and thinking about how the structure of my day and week will change again. I have been pretty isolated this week and I can feel that too so I expect that I'll try and resume some of my social commitments. Maybe even try and snag a public event First Aid with Del or something. I have also signed up for a four week course on "Stress Management for Cancer Patients."

Talking to the dietitian and Doctor today I got two different pictures on timing recovery. So I have varying estimates on the recovery. Dietitian thought there would be a low point about two weeks in and the as long as three to six months to recover swallowing. The doctor thought one week would be the low. Then over the next few weeks improvement with treatment evaluation at four weeks. So the reality probably lies somewhere in between that.

My dear friend Karen wrote me a lovely email late last week and as choir director - pianist - organists are want-to-do she started her email with a chorus:

I cast all my cares upon You.
I lay all of my burdens down at Your feet.
And anytime that I don't know what to do,
I will cast all of my cares upon You,
I will cast all my cares upon You.

And here is a You tube link to a beautiful version - . She went on to add:

Not many words but maybe you found yourself humming the tune as you read the words. The words in the NIV translation are: “Cast all you anxiety on Him because He cares for you.” 1st Peter 5: 7. The other Bible passage that speaks to that is in Galations 6: 2 “Carry each other's burdens, and in this way you will fulfill the law of Christ.”

And indeed I have found the words coming to mind as I struggle with all the cares that I have. But knowing that I have a merry band of supporters that are surrounding me in prayer is a great comfort.

I discovered that a few close friends are struggling too with this journey that I'm on. While they aren't as vocal about their specific details I'm holding them close in prayer and would appreciate you extending your prayers to them as well.

Thanks for sticking out to the end of this ramble through a wide range  challenges and thanks for your continued prayers.