We've been home about ten days now. I'm thinking this may be the longest stretch with out a trip to the ER in the last two months.
Several times in the last ten days I've considered posting, but it has been hard to know just what to post. There have been lots of ups and downs. Here are a few examples.
Last week Saturday, Penny was in so much pain that we called palliative care after hours. They increased the dose and frequency of her pain medication, and we were able get the pain under control. Since Monday, we have been mostly back to the previous dose level, and she often goes for a good portion of the day without any, but nearly every day there have also been times where she has needed the higher dose.
Wednesday was a relatively good day. Penny woke up early and was hungry. After a pretty good breakfast, Penny did quite a bit of knitting -- the first significant knitting since before the last hospitalization. Tube feeding went well; both the volume and the rate were highs for the last 3 weeks.
Thursday and Friday were much less good. More pain and nausea. Friday we didn't do any tube feeding at all. We did manage to get downtown for a blood transfusion since Penny's hemoglobin levels had been dropping again.
While at Lemmen Holton to get the blood transfusion, we had trouble with leaking at the tube site. After a couple dressing changes (with make shift supplies), we were able to get that back under control. This was the second episode of this since returning home. We're thankful we were able to get things back under control both times, and we are hoping we have learned a few tricks that will help us manage this going forward.
This morning Penny said she felt much better. By 11 am she felt lousy, but by noon she was feeling much better again. Then there was another short bit of feeling lousy in the afternoon. Now she's feeling better (and sleeping).
Friday we had our last appointment with the visiting nurse. We're still working out what this means going forward. Care is currently being coordinated with Penny's primary care physician, the oncology team, the palliative care team, Option Care (for nutrition and hydration supplies) and CareLinc (for other in-home medical supplies).
Friday afternoon we had a telemed appointment with Dr Chandana, our oncologist. This was originally scheduled to be an in-person check-in to see if Penny had gained enough strength to consider some form of treatment. That has not happened.
Less than four weeks ago, we went duck pin bowling. It was challenging for Penny, but doable with some assistance to get up the big step to the bowling lane. Today it doesn't seem like duck pin bowling would be possible, even without the big step. I can now touch my thumb to my middle finger wrapped around Penny's bicep, and she can no longer get out of a chair without assistance. She's using a walker even to move a few steps across the room.
On Monday, we will go to Lemmen Holton for a port reaccess, but we are hoping we can arrange for this to be done in home after that. (The visiting nurse had been doing the weekly port reaccess.) We've been doing IV hydration every other day and it seems to make a profound difference.
On Wednesday we have an appointment to begin in-home palliative care rather than in-office palliative care. We had already scheduled this transition prior to the last hospitalization, and it is now looking like a really good idea, even though we will miss working with Dr Rausch.
In short, there have been a lot of ups and downs, but the overall trajectory has been in the wrong direction: increased pain, increased weakness, and the continuing struggle to get enough calories. But we continue to take advantage of the times when Penny is feeling best and we deal with the rest as it comes.
Comments
Christopher G Moseley: Lord, have mercy.
Tony Holmes Curran: Oh Jesus, hold Penny and Randy in this. May they remember youβ¦both your tears for Lazarus and the promise of your empty tomb. May they know they are loved.
Suzanne Smalligan: An "up" was hearing Penny's poem read at the close of the Good Friday service. Thank you for sharing, Penny. A reminder through word and song that even in the shadows we belong to Christ.
Susan Langeland: In Christ alone, our hope is found He is our light, our strength, our song This Cornerstone, this solid ground Firm through the fiercest drought and storm.
Jim and Andrea: Randy and Penny, You tell such a beautiful story of continual assessment and adaptation to the "new normals" and integration of new strategies to make life more comfortable and manageable. You both are such a source of inspiration!! I hope your clinicians will continue to have plentiful options for Penny to be as comfortable as possible.
Marie VanderLinde : You both are so loved. Praying for ease and Godβs tenderness.
Dawn Mulder: Praying for mercy and grace. May you feel held and loved π
Talon Rindels : Sending you Easter blessings and prayers. May the Lord fill you both with love, peace, and comfort today. β€οΈ
Patricia Boer Fischer : I May Not Always Have the Right Word's 2say or Write.. but I do know GOD is Right BSide Ya's both!! Always n Our Thoughts and Prayers πππ«Άππ»ππΆππ·πππΊ !! Hugg's & Lots of LOVE β€οΈ
Laura DeHaan: So grateful for the expert care that Penny is receiving. Randy, your tender account of Penny's days are so filled with love and beauty. Praying you all experience Christ in a palpable way each day this week.
Terri A Boer: Continued prayers for you all may God give you strength and peace in the days ahead.
Sherita Washington : Eric and I have been praying for Penny. We miss her on campus. We are thankful she has a supportive family. Randy, may God grant you peace during this journey. ππ½ππ½ππ½