In summary

The days are busy!

Here’s a little snapshot of what life has been like the last two months, since my body fell apart and shook for days, cutting short my trip to the Lunar and Planetary Science Conference.  A few people have expressed surprise recently at what my body’s been up to, so I thought I’d summarize it here — you know, so we can talk about OTHER things when we’re at playdate or Mom’s Night Out together!  (It’s okay to ask me questions if you want; please just don’t feel that you need to talk about it with me!)  I don’t expect you to know all this or anything, but if you’re curious, here’s a little peek inside the window of the hustle-and-bustle before and after a new diagnosis.

1.  We tried to diagnose the tremors.  That’s one trip to the primary care and two to the oncologist.  Two medications to calm the shakes so I could function.  A CT scan, a PET/CT, and an attempted brain MRI.  Appointments with a neurosurgeon.  A trip out to retrieve the CT and PET/CT cds so that they could be interpreted and used by my oncologists.  Then, I had the cds in my hands, so naturally I popped them in the computer and looked at them.  (I don’t recommend this.)  The scans showed six “hot spots” of high levels of hypermetabolic activity, which Dr. Google quickly showed could be nothing but cancer.  The four days until the radiologist interpreted the scans and someone would tell me if it really was cancer, and what to do about it, were excruciating.  My primary care physician called me in at 4:45 on a Friday afternoon to break the news.  We heard, then set up an appointment with my oncologist to see what to do about it.  That weekend was awful.  Monday brought the oncologist consultation.  She kept me on the same medication that we changed to in February, told me it was not necessarily metastasis, and sent me to the surgical oncologist.

2. Once we had the cancer diagnosis, we went to the surgical oncologist for a consultation.  She recommended surgery to remove the nodes, and soon.  We scheduled the surgery and left for a long-planned week’s vacation in Florida, which sucked, because I spent most of the time trying to figure out whether it was right to cut the cancer out if it was a recurrence of the inflammatory breast cancer, which you never cut first.  It wasn’t an easy decision.  My oncologist is one of the top docs in the country, and she said cut.  My surgeon is at one of the top cancer centers in the country, and she said cut.  But the IBC specialists I’d heard of recommended in general not to cut.  I asked for help, and the IBC Foundation and IBC Research Foundation executive officers, who I’d helped in the past, went all-out to get me advice from their top docs.  The result? Totally mixed.  As my husband says, it’s exciting to be at the cutting edge of research, but you sure don’t want to be just past that cutting edge. It’s terribly scary.  We tried to relax, but utterly failed.  We were able to give the kids a great week at the beach with their grandparents, though, and that was important to us.  We cancelled the long-anticipated side trip to see the third-last shuttle launch, however, speeding home in one day to be with a family member (unnamed for privacy reasons) who had become hospitalized and very ill while we were away.  We got home late that night, but couldn’t complete our trip to see family as two of us were sneezing and feverish.  Not the kind of thing you want to bring into the cardiac care unit.  Meanwhile, we scheduled, and canceled, second opinions with a prominent IBC researcher and a top oncologist at another cancer center, both of which only had openings the day before my surgery, several hours away.  The kids went back to school, and we told their teachers what was going on, asking them to let us know if they showed any ill effects during the next few weeks and months of treatment.  I didn’t make it to TechSavvyMama’s girls’ night out two days before surgery, although I was happily surprised when “the moms” came to me the next night, and we had a wonderful evening together before surgery.

3. Surgery.  Surgery took several hours longer than anticipated, because the surgeon put extra effort and care into preserving and reattaching nerves, blood vessels, and lymph vessels in an attempt to keep me from getting lymphedema in my left arm to match my right.  A plastic surgeon helped fix the “wing” of extra skin that was left under my arm from the previous surgery, and they removed five inches of my previous scar for testing and restitching.  The postsurgical appointment two days later showed that the scar was forming nicely.  I was up and around, meeting with Little Bear’s teacher as scheduled, walking up and down the stairs, no problem.  By Monday I was back to my old activities, pushing hard.  A complication had arisen, however, as the wooshing and gushing inside my chest (air bubble) had settled into a golf-ball sized lump under my armpit.  The seroma was painful and made me tense.  My husband and I went back to see the surgeon, and she drained the seroma with a giant needle and no anesthetic.  When it returned, it quickly swelled to softball-size, and, we repeated this on Wednesday, Thursday, Friday.  I didn’t make it to Punditmom’s author salon that night.  My husband had his performance review, and we took the car in for repairs.  The dryer broke.

4. The next week, the surgeon drained the seroma on Monday, Wednesday, and Friday.  I finally saw the neurologist and scheduled the brain MRI.  I met with my medical oncologist and heard “no chemo.”  Stunned by this, I didn’t know how to deal with it, as I had been in mourning for my missed summer that I anticipated I’d spend in bed.  Of course I was happy, but now I was really unsure if we were really fighting the cancer!  As it turns out, aromasin is more effective than chemotherapy infusions on hormone-positive recurrences.  So if this is a recurrence of the “regular” invasive breast cancer that we suspected would arise in the left breast with the Paget’s disease, then this is totally the right thing to do.  It’s a heckuva gamble, though, and I struggled with the decision for weeks.  Desperate to be out of the house, I went downtown to a MomCentral blogger event and met Dave Barry.  We had a playdate.  I made and canceled an appointment with a new lymphedema therapist.  I went out with my local moms for dinner.  The next morning, we went in for the brain MRI, completed the paperwork, waited for our turn, and then were turned away because I would not let them stick a needle in either arm (as directed by my surgeon because of the lymphedema) and they had no option.  I saw my surgeon again, who drained the seroma again and detailed the risks of my planned travel the next day to AbSciCon, the astrobiology science conference where I was to co-lead a workshop and hold a women’s networking event.  If I were to fly, the seroma could burst (due to the changing cabin pressure).  If it burst, it would be left open to drain, causing continuous release of fluid from my armpit for three weeks to six months; the wound could not be stitched.  Adding to this, I was too tired to walk across the room without exertion.  Regretfully, I cancelled my trip and felt terrible for letting NASA down.

5. The weekend was mostly horrible.  Not only was I too exhausted to move from bed or hammock, I also developed an infection. In my armpit.  Lovely.  Of course, it was too early to recognize it on Monday, so the surgeon drained it.  It’s getting to be a routine now, Monday-Wednesday-Friday.   On Wednesday, I had a parent-teacher conference for Widget at school, where I was disappointed to have my concerns about the pre-bullying and “the fighting game” at school (which I had taken to the teachers and the principal repeatedly in recent weeks) met with an accusation that Widget was “fibbing” about the way that classmates treated the autistic child, and that “the fighting game” was not tolerated in the classroom, only on the playground.  Still, not acceptable.  Irate.  Ran late.  Cancelled seroma appointment in order to make it to the radiation oncologist on time, which was the exact same time as Widget’s interview and testing at his new school.  Drove way too fast upcounty to pick up additional copies of the PET/CT cds at diagnostic center.

6. Radiation treatment was planned.  Four to six weeks, every day, to both the armpit and chest.  Exactly what I had last time, although possibly not as long.  Lovely.  Asked for prescription cream preventively, hoping to save some skin.  Back downtown to have the seroma drained the next day. Kept up with playdate schedule, only to have friend’s kids get sick and cancel.  Infection much worse.  Energy sapped.  Surgeon’s PA prescribed antibiotic, which I took immediately in hopes that it would relieve the burning sensations in my armpit that were driving me nuts, even as my energy was draining away.  Much time in hammock over the next few days.  Husband took the kids to their weekend birthday parties, while I bailed on mom blogger fun with Jodifur, Jessica, and friends at Jammin’ Java, with concert sponsored by Curiosity Zone.  I sat in front of my computer for hours, searching for help for my kids, having to weather the news and the diagnosis and the treatment without the maturity of understanding.  I called national organizations, local hospitals, supportive and complementary care centers, and struck out over and over.  The Mothers With Cancer recommended a book by one of our members, Wendy Harpham.  I went online to order it and anything else that came up on an Amazon search under “children of cancer patients.”  Almost all the books dealt with death and loss.  Not helpful.  Or encouraging.  Ordered 7 books anyway, for me and for them.

7. Now we’re into May, but where was I at 9:00 on Monday?  Right back at the hospital so my seroma could be drained.  Really irritated with my slow recovery, lack of energy for field trips, and inability to write creatively during this time (ya think?), I hopped on to Angie’s List and scheduled visits from contractors for all those projects we’d been putting off.  Twelve contractors (three for each job) came out to give estimates that week, which made me feel like I was accomplishing something, even as I sat on my couch or went back downtown to have my seroma drained.  Again.  On Thursday, I had to admit that the infection was not healed, and the PA called in a new antibiotic.  This should work in five days, she said.  Boy, it better.

8. Radiation planning at the radiation center.  Back in the pink gowns.  Back on the table.  Another CT.  The measuring.  The marking.  Bold indelible marker (Sharpie, Susan!) drawn in long strokes on the flat plains of my chest, sealed up with clear tape to preserve it for the tattooing a week or two later.  Not painful, but embarrassing, especially when Little Bear asked what they were that night, in all innocence.  How do you explain radiation tattoos to a three year old?  Playdates.  Pediatrician appointments.  Meetings to discuss how to handle this with the children, who by now are acting out, showing the stress.

9. I quit work sometime in here, putting away even the pretense of writing the book or completing the tasks.  I stopped cleaning, running errands, everything in order to sit calmly with my kids and distract them with simple tasks that would keep our hands busy as I’d sneak in talk about feelings and reassurance that mom was doing everything she could.  We went back to church, going regularly for the first time in way too long.  We turned inward, concentrating just on each other, letting outside commitments fall where they had to.  We lost track of things and missed appointments.  We forgave each other.  A lot.  We snuggled and read books, and just enjoyed watching rain one day.  My oldest finally asked if he could catch cancer, and was surprised to hear that the answer was no.  My littlest spent days in my lap, cuddled up for reassurance.  My oldest slowly, slowly began to recover a bit, gentling his reactions to his brother, and  the acting out became less frequent.  I concentrated on them, and so did my husband when he wasn’t at work.  My mom came to visit for part of a week, and we caught up on chores and rest while she was here, and she gave the boys some quiet time with paints, tiny toy trucks, and the back yard (thanks, Mom!).  I started lymphedema treatment and physical therapy again, trying to keep the cords of scar tissue that restrict my movement at bay.

10. We’re still waiting for the second opinion appointment with Sloan Kettering.  I spent a whole day once I felt better driving around D.C. signing requests for copies of my medical records, reports, and films to fax to them, only to be told (eventually) that their first available appointment is June 15.  I can meet with the doctor then, they told me, after nearly a dozen calls from both me and my surgeon justifying the request, provided that I don’t have treatment first.  At all.  If I begin treatment, the appointment is canceled, and I’ll have to wait for completion of the treatment, new scans, interpretation of the scans, results, and a new treatment plan decision before I can make the appointment again.  And of course then it would be another few weeks for their first available appointment.

So here we are, two months and five days after surgery.  A lot has happened.  A lot still has to happen.  But I’m still here, and I’m spending nearly every moment of every day with my kids, reassuring them, cuddling them, being there for them whenever they need me.  They’re the most important part of my life, and I feel good about being able to help them, as little as it is.  I miss my work, and I’m easing back into it as time allows.  But for now, I’m doing the best I can.  Speaking of which, it’s time to pick them up at preschool.

28 Responses to In summary

  1. Can I just say that if I knew you better (and didn’t think you would find it odd) and I lived much closer I would drive to your house, ring the doorbell, and then give you a giant hug (unless that would hurt your seroma, which I imagine it might) and an equally giant plate of cookies and dinner for your whole family.

    I really wish I could do that. Truly.

    When I read your summary I am struck by your diligence to all of the balls you are juggling at this time. Your health, the medical records/ insurance dance, your children and their mental health, your marriage, your friendships, and your own grief over having to walk this path again. I simply cannot imagine the stress level you have been functioning under.

    If there is anything…anything at all I can do please know I will do it. I pray you are well enough to come to MomzShare. I really do want to give you a hug!

  2. Kate @ upsidebackwards says:

    Thank you for the update. You don’t owe us anything at all in the way of personal information, but of course we worry about you and wonder how you’re doing, how things are going. If I bump into you somewhere (ha!), now I won’t have to ask, and can entertain you with some witty topic instead.
    Reading all that has been going on has me exhausted for you, and I’m not even ill, so I can only imagine the bone-deep weariness you must feel. If I could, I’d be right behind Sunday with the hugs, cookies, and dinner for the next night.
    Best of luck, lots of love, and many many hugs.

  3. JavaMom says:

    Wow. I didn’t even realize that much time had passed yet. You are doing great and keeping your priorities straight. The kidlets sound like they are doing amazingly well and that’s because you are doing so well on focusing on them. I’m praying for you and my church is praying for you.

  4. Stella says:

    Susan, Susan, Susan… Cuddle your kids, go to your treatments, leave everything else to someone else. It’s no wonder you are exhausted!

    Maybe you could record thoughts for your book if you can’t spend time writing. That way you won’t lose them to the passage of time.

    Soooo, thinking of you.

  5. Lindsay says:

    I kinda wanna come clean your house and fold your laundry, just so you don’t have to.

  6. Amanda says:

    You. So much time, so much deliberation. I am awed by your ability, even if it only seems clear in the retelling, to weigh and consider the different possibilities. I have less answers or assumptions of wisdom as I did the first time around, but I fell more emboldened than ever to say that you have more spirit and grit that most people. And, if on the off chance I could ever do anything—I am here and i will. Anything.

    Fierce, loving hugs and more.

  7. I wish to shit I had more to say than you’re in my thoughts but that’s what I’ve got: You’re in my thoughts and I want so much for you to heal. XOXO

  8. Jodifur says:

    Do you get the basket that was done for you? I hope the kids liked what we picked out.

    I know you hate if there is anything I can do….but really, if there is anything I can do, please just let me know.

  9. Bon says:

    dude, you must be exhausted. all that driving around, the uncertainty, the waiting. i have such respect for the grace with which you hold yourself, Susan. and for the depths of suffering contained in this litany of coping.

    i have an idea. it’s just a small thing. but could we – your friends, your community – contribute in any way to creating resources for kids dealing with the stresses of cancer? that don’t elide the fear of loss but focus more on the coping with NOW, with the everyday? i know you have a wonderful community of survivors around you, and obviously all of you would need to be the primary resources, but it shouldn’t be up to those already struggling to cope to write the book on it at the same time. let us at least use our own extended networks, find out what’s out there…and tell us what you’d LIKE to find. if there’s a niche, there’s a need.

    xo

  10. Lylah says:

    I’ve been lurking here for way too long, following your story, wishing you strength. I like Bon’s idea a lot, and would love to help out if I can.

  11. Amy@UWM says:

    Fun times. Cuddling with the boys sounds like the very best thing you can do. ACS has a couple of nice books for kids whose parents have cancer. One is called “Let My Colors Out” and the other is called “Our Mom has Cancer.” The latter was written by kids for kids. Let me know if you don’t have those…I might be able to score you some.

  12. Amy@UWM says:

    Oops. Forgot the links to the books:

    Let My Colors Out

    https://www.cancer.org/docroot/pub/pub_0.asp

    Our Mom had Cancer

    https://www.cancer.org/docroot/pub/pub_0.asp

    • whymommy says:

      I’ve been so impressed with the latter one — by kids for kids! I haven’t seen the first, but I sure will go look for it now!

      Thanks!

  13. Thanks for keeping us up to date. Thanks for letting us know it’s OK to want to know how you’re doing. If you need a distraction come over to my place, we can “party” with the guys putting up the drywall in my basement! 🙂 xxoo

  14. Spacemom says:

    Thank you for the update.
    Now, about that teacher… I should warn you that kids have different versions of what happens than teachers ALL OF THE TIME. I find it useful to take what my kids say with a grain of salt, find out the other side and then piece the truth together… Not that Widget is lying, but he may be seeing things out of a 5 year olds’ eyes, not a 35 year old’s…

    • whymommy says:

      Excellent point. There were just too many concrete details (about the class’s treatment of another child) to make me comfortable dismissing it … but you make an excellent point.

  15. sutari says:

    Thinking of you, as always Susan. I too am surprised at the time that has passed!

    A comment about books. You are looking for books to offer guidance on helping your children cope with a parent with cancer and not finding any that don’t end badly. I’d like to point out that, in their young minds, they aren’t coping with a parent with cancer. They don’t know cancer from MS, from ALS, from any number of serious illnesses the sap the strength, cause stress and worry and lots of doctors appointments, that may or may not be contagious (my then 7 year old was scared to visit grandpa, dying of pancreatic cancer – much, much later I learned she was scared she might get it). The book doesn’t need to be about cancer. It just needs to be about the symptoms. And not the symptoms that impact the parent. The symptoms that impact that child. Because at this age, children are selfish (not in a bad way we use that word when talking about a 40 year old). But selfish in a way of a 4 year old. Mom can’t do X with me. So find ANY book about children coping with disability or chronic illness. Sorry I don’t have one to recommend.

  16. magpie says:

    I wish I were closer so I could do something tangible to help.

  17. Jan says:

    Whew!

    And I liked reading #9 the most.

    Peace.

  18. Meg says:

    Why Mommy:

    Sending you strength and strength and strength for your journey and loads of positive energy and intent.

    My own experience was that treatment itself was easier than the diagnostic process and the choices about what treatment to use.

    Rule #1 (and its a hard one sometimes for moms of all sorts, let alone moms with cancer) — secure your own air mask first before you try to secure someone else’s (and that includes your kids). Take care of yourself – really and truly. Take care of yourself, nurture yourself, let others care for and nurture you, too.

    Much peace to you and your family.

  19. Wow. That’s an update.

    So is the $100,000 question whether or not you will delay treatment to see the docs at Sloan Kettering? (Or did you already decide.)

    I wish I had something wise to say, but I can’t think of anything.

    Cancer sucks. That’s all I got.

    Thinking of you all the time.

  20. Remember me?? Your long-lost cheerleader on the WM team?? I’ve been absent from the blog-o-sphere for a little while, but just wanted you to know that you popped into my head tonight, so I thought I’d check up on you. So glad I did– extra thoughts and prayers being sent your way. You’re one heck of a superwoman!!

    xoxoxo CGF

  21. […] project was unfortunately on hold due to my illness for a while, but I’m happy to announce that it’s back up and running. To make up the […]

  22. jana says:

    I was moved by your “Struggling” post, and then this “In Summary.” You have been hit by a ton of bricks and you deserve buckets of sympathy — and help. (I live in California, but if I lived closer to DC I would volunteer to try to ease your load in some way.) As I read those posts, I thought of several things that I ought to write to tell you… but things have been hectic, so for the moment I will just try to offer some belated info. I will send you an email that will give you the direct email addresses for the two top medical oncologists (for breast cancer) at Sloan Kettering. I was APPALLED to read that Sloan Kettering’s admission people put you through that run-around. Good grief. You are a mother with two young children — and three cancer crises in three years — so you SHOULD have been put much closer to the front of the line. Sometimes the only way to “get in” to see top docs is to appeal to them directly by sending them a direct email. I know because that’s how I got my parents appointments with several top docs whose assistants had previously claimed that the doctor’s first opening was eight zillion weeks away, or that the doctor was no longer taking new patients. Believe it or not, most of the time the doctors will respond to you — sometimes even on weekends — or they will tell their assistant to contact you to schedule you sooner. I’m sorry that I did not send this sooner, but I have been under the gun to focus on other obligations. I will also mention that Dana Farber (I think it’s in Boston) is also an excellent cancer center. I will send you an email address for a top doc there as well. Other things to tell you, but it’s after midnight so for now I will just send you that email, with those email addresses for those docs at Sloan Kettering, in case you might want to try to cut through the red tape there. Bon nuit

  23. NYFriend says:

    Wowza, it’s incredible how busy you have been. I can’t imagine not being beyond utterly exhausted – physically *and* mentally. I hope things smooth out for you.

    Big hugs…

  24. Reading this just after seeing your message to your mother left me thinking – YOU are the good mother. I know how hard it is to focus on the kids under normal times of stress. I am so impressed that you have been able to do things to make life better for your kids right now. It takes my breath away.

  25. You are like Super Woman, truly. I’m so glad that you are finding peace in spending that time with the children. Work can wait. The stars will still be here in a few months, but this? This is amazing. They will remember the time that mommy was sick as a time of love and cuddles. That’s a gift. I just hope that you’ll also be able to remember it as such.

    Hang in there Susan. Know that when you’re feeling weak or tired there are countless people loving you and thinking of you. I hope that helps in some infinitesimal ways.

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