So, Mom and I met the radiation oncologist (Dr. Bijar) this morning. He was kind and helpful in reframing some of the considerations for her treatment. It is amazing how beneficial it can be in having different insights from different specializations. Mom is just too fatigued to take on any treatment right now. An observation that the doctors make repeatedly is that she looks good for the burden of cancer that is evident in the scans. People frequently comment that she looks so good! Regardless, she is just worn out. We were reminded that it can take six to eight weeks to recuperate from whole brain radiation for those over sixty. It has been three weeks since hers ended. Another point to keep in mind is that the nature of cancer is that it weakens you and causes you to lose your appetite.
Last night Mom decided to challenge herself at 11 pm with a walk around Greenspring, including stairs. (Who does these kind of things?!?!) Not only did breathlessness ensue, but chest pains that did not diminish for quite a while. So, this morning when I went to get her, those were some the symptoms she was experiencing. (To be fair, her walking and fighting the fatigue with movement is an EXCELLENT way to combat the cancer and side effects of radiation.)
After discussion with Dr. Bijar it was decided that she would wait a week or two until she felt up to doing the radiation. Her back pain is pretty constant but stays on the mild side most of the time with low doses of meds. She is going to try to be more cognizant of her pain in order to manage it better. He recommends that she go with the ten day treatment (considered short course) targeting her lumbar/sacral region. She is unlikely to have significant bowel toxicity in the small intestine with this treatment. Because it will be below her stomach, there shouldn’t be any additional effects to her digestive system. He will not target her hips, although there is pain there, because he wants to avoid bone marrow as much as possible (he doesn’t want her blood to become toxic because that takes 6-8 weeks to clear up!). He also noted that she had diffuse involvement in many areas of her spine; in other words, lots of cancer but NO fractures or protrusions affecting the nerves. They only want to target the areas where there is pain, however.
After lunch at Greenspring, I had to leave to take Kate to a dentist appointment but Mom’s plan was to call Dr. Heyer (oncologist) about her decision to wait on the radiation and her concern about chest pain. She ended up driving over there on her own because she wanted peace of mind. They tested her breathing and discovered that it drops significantly when she is walking. No surprise there as she needed to stop four times in the circle to the cafe and back for lunch but insisted on joining me anyway. So, she now has been prescribed a tranquilizer for anxiety in hopes that might alleviate some of the breathlessness. She will also start taking a different antibiotic tomorrow for the redness that remains on her skin where her port was, before she had it removed last week. She learned this afternoon that her right lung is still clear! Yay!
Hoping she gets some gentle, cleansing breaths and that she can rest and, perhaps, recuperate. Thanks for all the kind words to both of us! I am also taking some gentle, cleansing breaths.
Karen
Ann's Hummingbird
All that talk about “gentle, cleansing breaths” made me do likewise! I guess it’s good for everyone to remember. Ann, you are one to push yourself in every way, yet, I’m relieved to learn that you are willing to give yourself a bit of a reprieve for a bit to allow your energy to come back up. Between the two of you, you have sought out the best advice and are doing just what makes the most sense. Be assured that I will continue to hold you both in prayer every day! What an amazing journey you are on together!!!! Much love!
Blessings to Ann and to all of you. I am imagining a great circle of loving people surrounding all of you, and we are all breathing very gently and deeply and calmly……… sending you ease……… sending you peace……… sending you the kind of hope that wells up from the depths of God’s heart………
join you both in those gentle (and healing) breaths…
Hi dear Ann,
You are such a trooper. I was sick 4 days this week and barely moved ( a price for that), and you have learned the good lesson of “keep on going” — at least that piece of you serves you well as you do better than your scans look. SO I know you keep the vision of wellness deep in your heart —and cells. You are loving life.
I go down to the prison tomorrow for a 2 day retreat with those women who hunger for meaning and Light and purpose and forgiveness. Will you hold them in your prayer? May they be free of shame. Love you, Jeanie
Karen,
You write so beautifully, just like your mom. Your mom is a model of courage, and you are a strong daughter to be walking beside her. Please tell her I say hi, and thanks for sharing so that we can know how to pray for her.
My thoughts and prayers are with you and your mom.
Love to you both,
Betty Young
Go, Karen. You are a great daughter. Breathe.
Karen,
Thanks for taking your mom’s arm and gently guiding her in the path she needs a this time. Her docs, your mom, and you have made some good, clear decisions – let’s hope Ann can be satisfied with breathing for a few weeks.
So dea Ann,
Breathe in….breathe out….breathe in….breath out….and the Jesus prayer will rise to your mind as you do so:)
Blessings to you both – and continued prayers for all who surround Ann with love and support….and for Ann as well….that she will heed her own counsel:)
Much love and prayer from the Sutter household.
so glad that i had the chance to meet the whole family at the party so i can think of you personally as you all fight this !@#$ battle together. ann, i’m glad you have a great team of family and friends nearby to cheer you on every step of the way.
remember those wise words, inhale, exhale, repeat as needed!
sending love and good energy your way. now GO TO BED!
We all need to breathe deeper. Even seeing a doctor tell someone else to breath, I think we all do it without thinking. Lee and I will be leaving tomorrow with Sarah for the Intergenerational Road Scholar in Chattanooga. No word from me until after July 21 Believe me, you will not be far from my thoughts and prayers.
A walk around Greenspring at 11:00 pm. Only you, brave one, would do such a thing. And bravo for you! As Karen said, it’s good for you. I’m so glad you’ll have a week or two to rest up before the next treatment. Breathe, dear Ann, breathe.
With love and prayers,
Allison
Wow. What an exhausting person you are Ann Kulp. You are certainly lucky to have such a helpful and sane daughter. Probably takes after her Dad.
Hope you can relax and calm down somewhat for a while, but i do feel for you coping with all the pain (reminds me of what my mother went through and certainly without all the intense and complicated medical support you are getting).
Love and hugs Ann
Breathe gently and keep up the good fight… Luv, Jan
Thinking of you both and sending you each a warm, gentle hug. I’ll pause to breathe and ‘be’ with each of you in this moment. … and know that I’m thinking of you both so very often with love.
Leslie
I pray you both deep cleansing breathes; the breath of God. Karen thank you so much for the updates. Ann — hugs!
Dear Karen and Ann
Karen -Thank you for keeping us updated with you Moms news when she hasn’t the energy to do so. I frequently think about you both and though they come from far across the ocean send you both love and hugs ! Only wish I was nearer to deliver them in person and be a useful driver. Continued prayers for strength comfort and peacefulness.
Liz
JUst like you Ann to keep working on everything. Thanks Karen for your loving care of your Mom. – Fahy
Thank you Karen……and hugs to you and your Mom…..haven’t forgotten you ..just catching up after my recliner vacation .post tumble……much love and many prayers directed your way….l think a breather was perfect ….not easy for a hummingbird however.!! Talk soon, .Nancy