I asked for what I want from the hospital system and I got two kinds of answers: 1. Sure, we can do that! and 2. We have limited resources and we decide who gets them. Maybe we can do that and also we are changing our policies so we don't know for sure.
I don't know and I don't get to control what will actually happen. Of course. This is always the way. All I have any control over is my own response--and not always that.
The real outcome I want is to receive my full treatment with as much ease as possible and to be effectively treated for my cancer. I want to emerge from this journey into the dark night of the body with my full vitality--body, mind, soul. If transformation is in front of me, I want to be able to embrace it fully and become as whole as possible.
(OK, my scared kid still wants to have it not be real, to not have to do any of that, to go back to my old life of working hard as a physician and getting sweaty in my garden whenever I can)
The outcomes I want are not in my control. Nor are they in the control of my care team. This is the jurisdiction of the divine. It's in the hands of the Goddess/Great Mother and there is just no better place for it. Such a peaceful thought.
3 more braids removed. In the market for some hats. The back of my neck/lower head can feel the breeze.
This morning, I had a reason to consider changing my morning warm drink. I have been embracing RASA (wearerasa.com), and I love it and will return to it soon. For this next week, I've been advised to shift my diet as I prepare for my next cycle of chemotherapy and RASA doesn't quite fit the recommendations. I was thinking that something with dandelion and chickory root might be just the ticket. My friend Jennifer brought me lunch today and asked if I might like to try this product. An answer to a prayer and I love it.
In a slightly less magical-seeming development, I formally requested a change to the way I will be cared for in the system and I got a solid "Maybe". And a bit of "you don't really need that special consideration and you can trust us". So there's that. Going to keep working on the magic side and see what the very generous universe has in mind for me.
Physical update: I finally feel almost 100% returned to my previous vitality now 2 weeks out from chemotherapy. Back to gardening, walking, etc. Grateful for that. And also grateful to a team of folks (inside the hospital system and outside) who are working to try to make this next cycle go even better in terms of side effects.
I got a list of things I am sorely disappointed in and also a long list of gratefuls. Some are the same thing. Cause it turns out I am human and full of contradictions and nuances.
Two main categories of grievances:
1. Medical care is really weird and offered in a sick and twisted system. Cancer care is part of that. Despite my being sort of an insider, advocating for myself is hard.
2. I don't like to create, discuss or defend boundaries. And I really dislike doing that work more than once about the same thing, with the same person. If I snarl at you, its likely me resenting the boundary work that is MINE TO DO.
And my gratitudes? I am so grateful for my health, for my people who support me, for counseling (how would I do boundary work if I wasn't in therapy???), for the possibility of treatment, for having a "treatable illness", for hope, for sunshine and mild weather.
Also (in no priority order)
Zofran (I have heard and read about what chemo was like before this game-changing anti-nausea drug)
Great story-tellers to engage my restless mind
The ending of relationships that were not serving me.
"The Paradox of the Prophets: The flip side of carrying pain is this extraordinary gift of holding a spreading joy" ~ Glennon Doyle
This is the first braid I have cut off. I dedicate it to courage.
I am deciding to LEAN IN to the extent that I can to this life, including this season of traveling through the tunnel of cancer treatment.
This will take courage--feeling the fear and doing it anyway.
I accept that living is uncomfortable. I embrace that healing means changing, it means releasing what no longer serves me, even when I don't think I want to.
I am imperfect. My health is also not perfect.
I am willing to be more fully seen, to be vulnerable.
I am ready to ask for what I want.
I open my eyes more fully to witness what is inside and around me.
I am inspired by this song: https://www.youtube.com/watch?v=dMZvoEj4iig
And this podcast: https://podcasts.apple.com/us/podcast/we-can-do-hard-things-with-glennon-doyle/id1564530722
May you have courage.
Art is not about showing off. Art is about showing yourself ~ Glennon Doyle
I have been hiding and avoiding. I don't want to have breast cancer. I don't want to be mortal. I don't want to be receiving chemotherapy, to have a port in my chest, to feel bad, to be perceived as sick.
Hiding and avoiding haven't really worked out so well for me in the past, so I am trying to see if I can show up a little more and show a bit more of myself--to you and to myself.
There are lots of reasons for denial and for being quiet, but the one that holds me back right now is not knowing where the line is, what the wisest path is regarding sharing about my own illness with my patients, here on my business webpage. I know that being real is important in healing and I also know that as a physician it is important for me to keep the roles straight: I am the one serving my patients, not the other way around.
I am going to try to find the middle way. No way to find it staying where I am.
So where am I and how am I? That's a big question and the story changes day to day. Today: I am 12 days out from my first session of chemotherapy and today I feel pretty good. I have been out of bed all day the past two days, my body is mostly functioning the way I have come to expect. I have taken two walks today and have been able to work on balancing my checking accounts, paying bills, cleaning out my pantry and making my next attempt to embrace my reality. None of those task are completed and all will be ongoing works in progress. I am OK with that.
I am sequestered at home, not going to public spaces or public gatherings, limiting myself to contact with a chosen group of vaccinated folks who love me. I go to my office once a week to provide care virtually to my established patients an to support the nurse practitioners I have recently added to my practice. I miss my public self and am also enjoying a respite.
My major side effects of chemotherapy: An impressive amount of fatigue which put me in bed for most of a week, gastrointestinal upset (but no vomiting, thankfully), and a long list of grievances about the hospital-based medical care providing system.
Before chemotherapy, I wanted to fully embrace my process. I gathered my friends to make art out of my hair before shaving my head. The hair art took longer than I expected and turned out far better than I thought, so we left it in place. It was a magical evening, filled with connection, grieving, sharing, art, laughter, and some pushing our comfort levels. I have worn this outrageous hairdo for 12 days. Now I find myself really resisting losing my hair, of being bald, exposed, sick and old-looking. I wanted to take an active role in releasing my hair, not waiting to have it fall out in sad handfuls. According to what I read, the process of shedding my hair is likely to begin in the upcoming days. If I want to be active, the time is coming. I am reminded of deciding it was time to release the body of my stillborn daughter to the funeral home for cremation--I knew her body would become less and less wonderful to hold and caress and be with and I wanted to preserve the positive memories I had made. Today, I will begin to cut off the locks and make a prayer and set an intention with each cut. I don't expect it to be easy. No turning back.
Here is the letter I emailed to my patients in September:
It is with a heart full of gratitude, that I write to inform you that there will be some big changes coming quickly to my practice.
First, the reason. An amazing team of medical professionals tell me there is cancer in my breasts. This same team recommends that I begin treatment in the upcoming weeks. I am choosing to believe their assessment and follow their guidance. I will be spending the next 3-6 months focused primarily on my own health and healing.
I love my work. I treasure the time I spend with patients. You have taught me so much, lifted my spirits, and inspired me. The past 18 months of attempting to shepherd my community through a global pandemic have been the most satisfying of my career. I will miss being a full time doctor for however long I need to step aside.
I was already in the process of expanding my team to include two really amazing nurse practitioners and they have both agreed to step up to meet your health care needs while I am less available.
Lori Maybrier, CNM, APRN is already onboarding and will be available to see any adult women (and newborns up to 6 weeks of age). This is a long time dream come true for me and she has my full confidence as a healer. You can schedule with Lori on Schedulicity or by calling the office.
Mellissa Holcomb, DNP, FNP will be joining the team September 14. She will be available to provide primary care for children and adults regardless of gender. Some of you met Melissa when she shadowed me as a part of her training this past spring. If so, you are likely to have been impressed with her kindness, patience and depth of experience as I was.
I will be moving my own practice to completely virtual as of September 10 at the recommendation of my medical care team. I will also be decreasing my hours, likely to 1-2 half days/week. As soon as I know what that will look like, I will share that.
As of September 1, our practice will be raising our prices. As always, you can find our current prices on our website (www.drallemann.com) or on Schedulicity. If you need a payment plan, please inquire.
If you need to move your care elsewhere, I will miss you and I understand. Please let us know where we can send your records, and then be patient. It’s a challenging time for all of us.
Updates about my progress, ways you can help, and a place to leave supportive comments will be up on the website shortly. In the meantime, be kind to yourself and your neighbors and know that I am missing seeing you.
Because people want to know before they make an appointment:
We wear masks and we will ask you to wear one too (children exempted)
We will wash our hands immediately before our visit and we will ask you to do the same.
We will open the windows, weather permitting or offer to meet with you on our deck.
We have been vaccinated but we haven't changed our precautions
We offer phone or Telehealth visits
We will arrange our schedules and ask some patients to wait in their cars our outside on our bench to minimize overlap
We will sit or stand 6 feet or more from you and each other when possible.
We will clean high touch surfaces
We welcome feedback
Melissa says: "I am a 25-year RN with a strong background in teaching and practicing hospital maternal-newborn care. I am in my fourth and final year of a graduate program to become a family nurse practitioner. I'm enjoying expanding my skills to provide primary care across the lifespan."
Melissa will be joining us Tuesdays and Thursdays in March as a part of the last few months of her training to become a Nurse Practitioner. Her time with us is supposed to be focused on Reproductive Health, which we are defining broadly to include hormonal health, menopause, bladder concerns as well as questions about contraception, genital health, and breastfeeding and newborns. In order to celebrate having a learner with us (teaching is such a great way to learn and feel younger) we are offering our patients 50% off any visit Tuesdays and Thursdays in March if you are willing to welcome Melissa as a part of your care team. Schedule online or call the office with questions.
It's been a week of a lot of intersections.
In Columbia and Boone County: Two workers at a grocery store and a hair salon and a child at a day care center tested positive. I know many people want to know where the positive cases are so they can avoid getting sick, I don't think that is helpful. First, a positive case just tells you who got exposed a 4-10 days ago, not where you might get exposed now. Past information isn't always helpful. It also presumes that every other place is safe and free of people with the virus. With the level of testing we have now, (and honestly with any level of testing other than testing everyone every day) we just can't say that. What this says is that it is likely we can be exposed to folks who are shedding SARS CoV2 while shopping for groceries, getting our hair or nails done, or by having our children in day care.
A resident of Boone County developed symptoms of COVID 19 while celebrating Memorial Day at several entertainment sites at the Lake of the Ozarks and tested positive this week. We could have predicted that at least one person was potentially infectious during that gathering. This is a bit of a challenge for contact tracing and so the health department has resorted to issuing a press release listing the places this person visited so that others who were there at the same time can possibly be informed.
Around the country, people are out in public spaces expressing their outrage over the way police interact with the communities they serve. These gatherings will almost certainly increase the spread of SARS CoV2. The fact that they are outdoors reduces the risk, as will wearing masks, but not as much as if people stayed away from each other. The risk is further increased by the use of tear gas by law enforcement (study showing a link between respiratory illness and tear gas exposure).. I was surprised to learn that there are international agreements that outlaw the use of teargas by military forces, but allow its use by police on civilian populations and that the ACLU has concerns about the way it is used in US. (Link to ACLU statement). If you get exposed, here is a link to a decontamination procedure.
Due to flooding in Michigan and storms in Bangladesh, people are having to evacuate. Housing displaced people during a pandemic is to say the least problematic.
Sending you wishes of great health.
Spring is here in Missouri and summer is close on its heels. All the health challenges of a typical spring are still with us. I'd like to offer a few ideas to help you through them
POISON IVY: I saw it yesterday in the woods, starting to leaf out. I've already recovered from my first case this spring, so it is possible to get it on your skin before it has any leaves. It's an oil that causes the reaction. The higher your exposure (more oil for more time) the more of a rash you will develop. Best to not get it on your skin at all, but if you do, the sooner you get it off, the happier you will be. Warm water and soap are your friends. Wash like you got motor oil or something even more like wax on your skin. Friction and lots of rinsing help. If you get the rash, it is going to be there for about 3 weeks, cause that's how long it takes for you to make new skin. It tends to develop slowly, getting more itchy and red over about a week, stays stable about that long, and then resolves over the third week. I have found that hot water run over the skin for about 30 seconds really helps with the itching. The water should be hot enough to sting but not hot enough to cause a burn. Other home remedies that can offer relief are witch hazel and oat meal baths or soaks.
SEASONAL ALLERGIES: Like poison ivy, avoiding exposure is your best bet, but when that doesn't work, you might consider quercitin, probiotics, reducing inflammatory foods from the diet and my favorite herb; stinging nettles. Spring is a great time to embrace nettles as a cooked green, raw in smoothies, or dried and made into a tea.
SUN EXPOSURE: The sun feels so good on the skin and the weather is really inviting right now. About 10-20 minutes of sun exposure each day from April to October in Missouri is a great way to get our Vitamin D and the great benefits to mood and energy that sunlight provides. It's important to be careful easing into sun exposure after a winter under clothes and inside our buildings. Sunburn is no fun and isn't good for our skin. The best sunscreen is a roof, shade, or dark clothing. I wear a hat in the garden to protect my eyes and the skin on my face. If you get burned, cool water, unscented lotions, and witch hazel can be soothing.
What else is concerning you this spring?