And in with 2017!
Report, Nathan is over his chemo induced illness and I’m doing amazingly well after that first chemo. A bit tired and basically fine.
Last night I was at a party with some church friends and someone got talking about how the teens wanted to go to 2 or even more parties. One of the adults said “why would I want to do that – you are my people”. There was a moment of sacred silence, broken as if with the word Amen with “yes, you are” by some of us.
You are my people and i hope I am yours. I ran into this great quote on friendship by Anaïs Nin. “Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.” You have opened worlds to me.
Perhaps because I’m an only child friendship and community have a hold on me unlike I see in most people I know. But we all need it, and I believe are drawn to as only people looking for new worlds in ourselves and the larger world can be.
Prayer – Friendship, community and family not only give me a reason to do all I can to get well but miraculously give me the support to get well at the same time. Thank you all – blessed be.
Nathan had another day feeling poorly today. Just tons of fatigue.
I had my first chemo today which wasn’t bad at all. And still feeling fine. Staying ahead of nausea with helpful meds. And there was an interesting incident. About 30 minutes into this initial 90 minute infusion the IV site was burning. I asked one nurse to look at it and he gave me a “working fine, no pain no gain” type answer. I called over my nurse and she did a test that showed the IV was failing and needed to be moved – rest of infusion easy and painless.
This brings me to the subject of pain. You’d think I’m assertive and usually push to get rid of pain. Yet, I feel this experience is making me clearer, more assertive, inquisitive and self protective about pain. Doubtless there will be pains all of us can’t prevent. But I know that had I been clearer, more assertive, inquisitive, and self protective about pain two of the really tough things that have happened to me (this Cancer being one) COULD have been truncated, simplified or stopped. Emotional pain, physical pain take action my friends, and don’t think “Oh this is 60 year old digestion” or from a time in my life 20+ years ago “all people treat one another this way…” or whatever it is you may think now or in the future that minimizes even delegitimizes your pain.
So the report is good. And I do think that while the Central Line (port) will be painful going in, not having to be poked with IV for these infusions will be good. The port will be my friend.
And now a prayer. Let us all listen to our pains, speak up for ourselves and our friends. Brave through it if you must but don’t assume that pain as we now experience is what the world has in mind for us. Also in the words of Jacquelyn Sneedof the Chaplaincy Institute which parners with Starr King to teach Spritual Direction. She said early today and how appropriate is this: chemotherapy comes from human minds serving as channels for divine energy. May Alexa’s mind, body and spirit embrace chemotherapy as the source of healing elixirs. As they flow through your body, may they rejuvenate each cell. My her body may she accept these processes with grace and ease and be made whole.
Nathan got back from his last 2 days of chemo with bells on his toes and doing great. Unfortunately, as with the last time he had that pair of drugs 30 or so hours later he was ill with typical post-chemo symptoms. And as unfortunately we weren’t prepared. Hospital hadn’t given us anti-nausia drugs, we didn’t have gaitoraid or gingerale. With me on the phone to Children’s our favorite medical fellow on the other end (Dr. Jeff will be such a good doctor, is already a good doctor) Ken off to work with the pharmacy on a rapid turnaround on filling the prescription all was better 6 or so hours after it started. Thank you Olivia for coming and sitting at home with Nathan to be sure this is over this AM while Ken and I are off to my first chemo.
Ken, Colleen and I attended Chemo learning yesterday also. Good news, I can continue to eat my favorite cheeses. And as I expected sushi and Lox are off my plate for the next 4.5 months. Oh and almost certainly I’ll loose my hair. More challenging news is that there are going to be lots of other shots and visits to the doctor in Virginia beyond the ones we knew about. There will be 8 21 day rounds of treatment. Healing is going to be a full time job for a while. Also very good news is that the facility has lovely people in it and our main contact so far is a male African American nurse practitioner with whom we engaged in a deep and important conversation about Unitarian Universalism, spirit, racism and the state of Virginia. All of that came about as I was angling to tell him that I wanted imagery of light, and love and grace to dominate my chemo, not fighting and war and violence. He got it.
And now the prayer as I go into my first chemo: God of grace and light, please help me be strong enough to tolerate the side effects of these treatments targeted to remove the cancer cells from my body, and let the drugs be strong enough to do their work. Love is powerful, more powerful than we usually believe. Let the love of this group and its prayers and well wishes strengthen all us Fraser Iobsts to heal.
My “Chemo Learning” session starts Thursday, and it occurs to me that really what I’m going through, what all of us are going through with this experience is cancer learning. So here is a lesson for me and maybe you from Cancer Learning. I am sure there will be more.
Sentences I don’t love hearing.
– How ARE you (today)? How are you? How are you? I’m fine with that regular “How are you?” we share routinely with colleagues or passers by.
– “You are feeling better” (statement).
– “You look tired” (actually I think this sentence should be removed from the English language with the exceptions of parents to children under 18).
– Any sentence that has at least in it, as in “at least you have a good doctor” or “at least they caught it early” or “at least you have Ken. Thanks, don’t need to hear it.
Sentences I love hearing:
– “I’m looking forward to talking with you”.
– “I’m so glad you are here”.
– “The funniest thing happend at work, or on the way over here or my kid’s grades, or …. (but not politics so much right now).
All the things we’ve laughed over, mused over or chatted over for years are what I want to engage around. Yes, I want to hear about the action in your life, as I always have. Considering retiring? Wondering about college for your kid? Please don’t feel you have to focus our conversation on the “C” in the room. I’ll bring it up if I want and this forum will give regular reports.
And now on to the prayer or good thought or whatatever (look back to a previous post to learn more about this).
Giver of light and wisdom. Please help Alexa hear the love behind the skillfully phrased words of love and please help her equally hear the love behind those that come down less easily. They are all words of love. And let us, her friends develop skill in how to continue our friendships as before with all their dimensions of laughter, sharing and companionship.
Alexa here thanking all my friends, particularly Nicole and Colleen. Beyond thanks for all they did to get us meals and visits, they also got me round the clock care at home when I was first back from my surgery and Ken was at the hospital with Nathan also round the clock. And so many thanks to you all that did all that stuff!
It is great to be home with Nathan and Ken. Nathan is learning how quickly he can go from feeling great to quite fatigued as his MS experience changes even within a day. Even within an hour. Ken is amazing taking us all everywhere and doing everything and with both their help I’m recuperating from my surgery.
I don’t think we have any need for meals or travel help this week, but will post them if that changes. Nathan will be back at Children’s for one night and 2 days getting the last of his chemo treatments for this initial flare and I’ll be starting my chemo too. They are predicting 4.5 months for me.
I plan to end each of these posts with a prayer or call for loving thoughts as is comfortable for you. I’ll probably just call it a prayer knowing that some secular, humanist and athiest friends will have to stretch around that wording. I appreciate your efforts to translate into your own comfort zone. I’m doing this in part because I’m big on prayer and in part because we are so geographically dispersed that many who can’t actually come by with a meal or hug can and are really doing something important for us when they pray from Switzerland, or Boston or California.
Giver of light please ease the lives of Ken, Nathan and Alexa as they walk through this difficult time. Please also help the hands and hearts of the doctors, nurses, technicians and others who are helping to heal them through the chemotherapy that starts this week for Alexa and ends this week for Nathan.
In late November my son Nathan’s headache from a seeming sinus infection went from bad to worse. Multiple trips to the emergency room got us to Children’s Hospital in DC, to the Neurology ward. They quickly let us know that they thought that he had Multiple Sclerosis. While rare in a teen boy, that was what it was. By then he couldn’t walk, his eyes were crossed and twitching, his speech was slurred and it was very hard to believe that the doctor’s prediction that he would recover fully was going to happen. Indeed it was even harder to believe as they couldn’t even stop the current “flair” of his disease. All the standard medications didn’t work and we spent about 35 days in the hospital awaiting the miracle that would stop this thing from progressing. Eventually the doctors tried a chemotherapy that was intended to reduce his immune cells so his body would stop attacking his brain. It worked. He got better amazingly fast.
As the time passed I noticed a repeated pattern of stomach upsets. First I thought it was my body’s reaction to Trump’s election, then I thought it was hospital food and the stress of Nathan’s condition. Eventually I went to the doctor and got the diagnosis of likely uterine cancer. And it was. At one point I was in one state at the hospital getting surgery as Nathan was getting chemo in another. My love and partner Ken couldn’t be in both places. Subsequent posts tell the rest of the story.
