Day +87

Patience is a virtue. Repeat weekly, daily, maybe hourly.

And I had a long blog post mostly-completed about this and was waiting till today to post. Unfortunately my computer ate it. So you will get a shorter, less-entertaining post instead.

First of all, this week I spent a LOT of time at Froedtert. I had five days of chemo (M-F), two days of labs and two doctor appointments.

Chemo (Dectabine) is very similar to the first round. That is, three days easy-peasy, followed by feeling tired on day 4 and more icky on day 5 (today). Unfortunately the last three nights I've only gotten somewhere between 4 and 5 hours of sleep. I think, if I remember correctly, that the same thing happened last round. I'll keep better notes for (hopefully) round three. I'm not exhausted--I actually can't sleep because I'm not tired. It's odd. Must be something chemo-related.

Labs have improved ever-so-slightly. Actually, my WBC and neutrophils have creeped down, but they've been essentially zero for a long time anyway. After my last blood transfusion (last Friday), my HGB has maintained, and surprisingly my platelets have increased to 50K! No one seems to know why that's happening, but it's not a bad thing. My peripheral blast counts are bouncing between 5% and 11%.

Monday I had an appointment with Dr. Hamadani and he told me that although he would stay in contact and see me periodically (and manage any GVHD or other transplant-related issues), he was shifting my care back to Dr. Atallah. I also asked about the possibility of a second transplant, and he said that we could only discuss that if (IF) I made it into remission with negative MRD. I think that means that there's not much of a chance that I will end up with negative MRD. But every month may present another option, so I'm not giving up.

Tuesday I met with Dr. Atallah. It was nice to see Dr. Atallah again, even though it meant that I was seeing him because the leukemia is back. He explained more about the clinical trials. Basically, enrollment in clinical trials changes daily, so I can't enroll now anyway. That's because we don't know yet if the Decitabine + Venclexta is working or not. My first chemo cycle was only Decitabine (before the bone marrow biopsy). So the plan is for him to watch my blood blast % and as long as it doesn't get too high, I will be on Venclexta for a full cycle before the next bone marrow biopsy. If that biopsy shows good results, I'll stay on Decitabine + Venclexta until it doesn't work anymore. Then, and only then, we'll look for a clinical trial that might work.

So that's my plan, as it is. Wait and see. And no decisions can really be made until they can be made.  :)

I've been trying to stay active, but it's been a lot harder with the heat. I signed up for a few exercise challenges, but one that I was most excited about was the Trek Century Challenge. You could compete at three levels--100, 500 or 1000 miles in the month of July. Last year I rode 322.5 miles in July. I'd planned (last year) to stretch myself and do 500 in 2020. Well, that definitely didn't happen!  However I did manage to eke out 100. Given the fact that I had 8 days of chemo and received 7 units of blood and platelets in July, I guess that's really not too bad.

Finally, I have to share the coolest gift that my friend Laura gave me (along with a quick, masked, socially-distant visit):

a Prince mask--perfect on day +87 (cuz CLASS OF '87 RULES!)

Thank you all for your continued positive thoughts, prayers, messages, and wishes. One day at a time...

Day -3

Today's word is sweaty.

I started the morning sweaty because I actually slept for a long time last night. Hospital beds are gross and the mattresses are plastic, thus the sweat. Greg's going to try to find an old twin mattress topper to bring in, but I definitely woke up sweaty.

Then the sun came out and the temperature was in the mid-70's! Even though I only experienced it through my window, I got terribly sweaty sitting in the sun.

And I worked up a sweat several times today--riding the bike before lunch, trying to squeeze in 10 laps before my afternoon chemo, more laps after chemo and after dinner, and doing arm exercises with resistance bands.

Sweat is good. It almost makes me feel normal!

On rounds this morning, Dr. Longo said that my results came back from the lab in Washington State and that they could increase my dose of Busulfan. I went from 192 mg (first two) to 240 mg (second two). This is good because as long as my body can take it (thus far evidenced by my liver function tests, the blood lab tests sent to Washington, and how I'm doing), we want to knock out as much of the marrow cells as possible (thus myeloablative chemo). This gives the best chance for the donor marrow to take and do what it should do. (Reward for drinking so little alcohol all my life?)

I only have one round of each chemo left now--tomorrow morning and tomorrow afternoon. I'm comfortable with my room, the floor, the menu choices for meals, and all my staff. I'm working my way through podcasts (loving Sawbones and binged the Prince 1999 tour series), knitting, and spending so much time on Facebook drooling over the beautiful outdoor bike rides, walks, kayaks and runs that you all are doing for me while I'm stuck indoors. What an amazing mood-lifter!

And for those of you who asked how to find my window since you live near Froedtert and want to bike or walk or run past, this window is in the lounge a few rooms down from me. It's on the 9th floor of CFAC in the SE corner. Just west of it is room 8, then 7, then I'm in room 6. Each room has two wide and two narrow windows. If you ride or run or walk by, text me and I'll try to look out and wave. :)

Day -4

The topic for today's blog post is medications.

Meds mess up the best laid plans.

I hadn't slept well Tuesday night (pre-admission nerves) or Wednesday night (lots of interruptions plus a new setting), so last night was gonna be my night!

Last night I ate dinner relatively early and ate everything I ordered, realizing it was probably the steroids kicking in. (No steroids on Wednesday; got them at 5 am yesterday) When I took dexamethasone during my AC chemo for breast cancer treatment, my chemo (and pre-meds) were in the afternoon, so I crashed the night of chemo and then had steroid energy the following day. I loved it! Unfortunately with getting the pre-meds at 5 am, my steroid energy hit me at about 9 pm last night. When I was still awake at midnight for vitals and labs, the nurse suggested I take some Ativan, which is prescribed for anxiety, but also helps with sleep. She did warn me that taking it that late at night might make me groggy in the morning, but I felt like I needed sleep.

So I finally fell asleep about 1 am. Vitals at 4:00. Fell back asleep, then woke up with a start at 6:20 because I hadn't gotten my pre-meds and chemo. It turns out that the Busulfan only needs to be given at 6 am the first day so that labs can be drawn and sent off in time. So today (and the next two days) I get it closer to 8:00 am. Still, I was up for the day by then, and hooked up to chemo and chewing ice chips until 11:00. And definitely groggy for much of the morning.

The Busulfan is a stronger (myeloablative) chemo that has lots of lovely side effects, including nausea, so they are giving me twice as much Zofran as I previously took (12 mg vs. 6 mg). And Zofran screws up my GI tract, so I get to take meds for that, too.

I'm (just over) halfway through the chemos. Moving right along.

Still, despite having my schedule all funky, I feel pretty good! I did 20 total laps of the unit (about 2.5 mile walk) and did 4.5 miles (intervals) on the exercise bike. I've been goaded into trying to complete FIVE marrow-thons, as the guy released yesterday apparently was the one who completed four during his stay. It's really hard to turn down a challenge. I guess I need to sleep less so I can exercise more. LOL

The 9th floor of the Center for Advanced Care is almost brand new. The rooms are all freshly painted and bright and things all work. LOL. And another cool thing about 9CFAC--it seems like half of the staff is pregnant. :) And there's this on the floor:

It makes my lactation counselor heart happy. :)

Day -5

I forgot to share my address yesterday. For those who want to send me cards (NO obligation as I am getting plenty of love electronically!), it's:

My name
c/o Froedtert Hospital Inpatient BMT
CFAC 9th Floor, Room 6
9200 W. Wisconsin Ave.
Milwaukee, WI  53226

Day -5 has been another long one. The first day in the hospital isn't exactly restful under the best circumstances, but as I'd posted yesterday, there are a LOT of interruptions now. Starting at midnight I had a bunch of blood drawn (baseline tests for blood infections from the central line x2 plus routine labs). 4:00 am was vitals. 5:00 am was pre-meds. 6:00 am started the busulfan, so I had to quick order and eat breakfast and then began cryotherapy (sucking on ice) from 7:30-9:30. They ran a bunch more labs after the first busulfan which lasted periodically until 2:00. And I was wrong--although I got the fludarabine at 5:00 yesterday, I'll get it at 2:00 from now on.

two cups of ice chips plus two orange popsicles to prevent mouth sores

Dr. Longo rounded again--nothing of note.

The dietician came and shared all sorts of useful information. There's a "secret menu" that allows me to order some items from the other restaurants at Froedtert. For lunch I had a French Dip sandwich, which was pretty good. I got a supplementary menu that lists all the high protein items on the regular menu, so I can make better choices when I get to that point. She explained that transplant recipients have a very high metabolism, so even if I eat "normally," I'll keep dropping weight. I will also, with all the GI stuff coming up, get to a point where I'll need protein shakes/smoothies. But they have a bunch of additional choices beyond a can of Ensure. She also suggested having the nurses put any smoothie or shake in the freezer for a bit because they're better when very cold. Ugh... I am just dreading that part of the stay. I have to remember that it will be temporary and that my body will need protein to recover, however I'm able to get it.

PT came by after lunch when I was trying to nap. I opened my eyes, focused on her name tag, and practically yelled, "PHYSICAL THERAPY! I'VE BEEN WAITING FOR YOU!" She told me that PT is usually not greeted that way by inpatients. :)  I did my assessments for baseline and got a tour of the "gym," which has a bike-like machine, called a NuStep. It doesn't circle the pedals like a bike--just goes back and forth to strengthen other muscles. It also has arms that move back and forth--kind of like a recumbent elliptical! After I rode that for awhile, I asked if by chance there were any stationary bikes elsewhere in the hospital that I could use in my room. My room has plenty of space, and if I stay in it, I don't have to wear a mask. She said that they had one for patients in isolation but since no one is currently in isolation, I could keep it in my room. So now I have my own bike for the time being!

She also left me some resistance bands and exercises to do. In a non-COVID world there would be group exercise classes, including yoga. Now everything is individual.

I've continued walking laps. I got the details on the Marrow-thon, which is met if you walk a total of 210 laps. One of the nurses was teasing me for walking so much right away, and she said that she had one patient who completed FOUR marrow-thons during his stay. Guess I have a goal to beat... LOL

Every staff member has been wonderful here. I would obviously rather have my family and friends around during this, but it's so nice to have good people to interact with. Pretty sure I'm already known as the chatty one.

Thank you all for your wonderful messages and bike rides (and walks and runs and strength workouts) for me and for sharing them on Facebook. (If you aren't in the group yet, and are interested, my friend Jill set up a Facebook page called Ride4lori. She posted a big scavenger hunt of things to find on your own bike rides, runs or walks, and to post in the group for me while I'm in the hospital and can't get outdoors. Feel free to join!

And now I'm off to walk again and then shower and try to get to bed early. Hugs to you all.

Day -6

This summary is not available. Please click here to view the post.

What does COVID-19 mean for me?

Yesterday was Day 15 and an appointment with Dr. Atallah.

My labs are holding ok:
White blood cells: 2.3 (from 2.4 on Monday)
Absolute neutrophils: 1.3 (same as Monday)
Hemoglobin: 10.4 (down from 10.7)
Platelets: 25K (down from 33K, and because they're so close to 20K, I need to go in for labs tomorrow)

------
I have started and re-started a post on SARS-CoV-2/COVID-19 so many times, but before I could post, information and recommendations and seemingly everything that's known has changed!

I won't re-write everything that someone else has already written, although I'll share a few general thoughts (current as of today) and a few great (IMO) links for further reading.

Why is this such a big deal when the flu, suicide, TB, gun violence, etc. all kill more people annually?

• Unlike the flu or a cold, this is a novel coronavirus which means that it is new, and therefore no one has antibodies against it (except the 69,623 people worldwide who have had it since December 2019 and recovered as of today). So when one person is sick, pretty much everyone around them has the potential to be infected. Did you hear about the super spreader in New York infecting at least 28 others?
• Read: COVID-19 is not the flu
• We are still not sure how long before a person becomes symptomatic that they are contagious. There are cases that have appeared without known contact with a symptomatic person.
• Read: CDC's How COVID-19 Spreads
• While it is true that the majority of cases will be minor, it does NOT make sense for anyone to try to get sick (think Chickenpox parties). Besides the fact that not all cases are minor, the longer it takes for the general population to be infected, the more time there is for hospitals to treat and release (not be overwhelmed), for faster tests to be developed, for a vaccine to be developed and produced, and overall to save more lives.
• Read: Flatten The Curve
• Although the cancellations of sporting events, concerts, requirements to work from home, conversion of school to online formats, and everything else is a complete pain for pretty much everyone right now, I'm asking you to trust in public health. Hey--we're used to only being acknowledged when we don't do our job right!
• Fun read/printout: Work At Home Bingo Card

Now on to how the COVID-19 pandemic may impact me personally (since this is, after all, my blog about cancer):

I started off, in January, convinced that "the novel coronavirus" was like many other coronaviruses and that influenza was still a much bigger concern. That's definitely not the case now. In the last week or so, I've spent a lot of time thinking (selfishly) how it might impact me, and more specifically my transplant.

1. I have a weakened immune system. Catching COVID-19 could well prove fatal. I am more likely to catch it if it keeps spreading because people selfishly think it's not a big deal and continue to go out in large groups in public and spread it.
2. My donor is international. What if travel is not allowed between the country they live in and the US? Would I even be able to get the stem cells?
3. My donor is young--early 20's. What if they (or their parents) decide that, in these uncertain times, it is too risky to donate stem cells?
4. There will likely be a surge of patients requiring hospitalization. What if hospitals are overrun with COVID-19 patients and there isn't even a room available for me for the transplant?
5. Medical providers will likely be stretched by patient care, their own possible illness, being needed to take care of children who are no longer in school or daycare. What if my medical team cannot care for me while I'm in the hospital?
6. The US gets medical supplies from many other countries, and already many things are becoming scarce. What if I'm in the hospital, but supplies are no longer available, including PPE (important when working with someone immunocompromised) or IV fluids?
7. I was told that the sooner I get to transplant (after achieving remission), the better. What if my treatment gets pushed back due to all the other priorities, and in that time I fall out of remission and am no longer eligible for a transplant?

At my doctor appointment yesterday I was reassured of some of my fears, but unfortunately not all of them.

I do have to be extra careful to not get sick. But more importantly, my donor is in Europe. I learned yesterday that my transplant has been pushed back by a week. I hope this is the only delay. Unfortunately, pushing it back means that I will require another round of Vidaza. I am trying really hard not to feel sorry for myself.

Round four of Vidaza will be March 26-April 1 (I'll add entries to the google driving spreadsheet when I have exact times).
I'll have a bone marrow biopsy sometime in April.
If nothing else changes, I will be admitted to the hospital for pre-transplant chemo on April 23.
My transplant day will be April 29.

I did learn that they will not start the pre-transplant chemo until they have the stem cells "in the refrigerator" at the hospital, so that at least means that I won't end up with no bone marrow and none coming! I just hope that this schedule is not put off any further. And I need my body to be awesome about keeping me in remission. I am hopeful.

I've been trying really hard to find a silver lining in this delay. I did find one. Last year I signed up for a really cool project, 30 Days of Biking. Essentially you commit to bike every day in April--indoors, outdoors; long, short; fast, slow. I didn't think I'd be able to participate this year, but I'm going to try to ride either 22 Days of Biking or 23 Days of Biking (depending on admission time). I invite any of you to join me in this project--and I will ask for volunteers to ride the remaining days in April FOR me. Kind of like surrogate bikers. Or maybe Handmaid bikers! Will you be a Handmaid biker for me?
If you want to sign up to bike all 30 days yourself, go to: https://30daysofbiking.com

OK, one last thing. I just want to say that since I went to grad school and earned a PhD in Public Health by researching hematopoietic stem cells, I will be SO UNBELIEVABLY PISSED if a pandemic kills me while I'm weakened by my own defective hematopoietic stem cells. I am not a fan of irony. It's time for Buffy the Vampire Slayer to attack COVID-19.

Now entering Nadir

I've written about nadir before--essentially the low point in blood counts after chemo is given. But nadir after leukemia chemo is even more intense than it was during breast cancer treatment.

If things proceed as expected, the max chemo is in my body on day 7 of treatment. That was yesterday. Here's a picture of me being disconnected from seven straight days of chemo.

For days 10-14, the maximum killing power of the chemo takes hold and the blood cell counts (and all the other fast-growing cells in my body) are at their lowest. I'm told to expect to need lots of transfusions, lots and lots of rest, and to feel generally really crappy. After a few days, if all goes well, my healthy cells will start their recovery and I'll gradually feel better. What that means, is that I would like visitors, but it is entirely possible that I may change my mind mid-way through the day. Please don't be offended if I either cancel a visit or cut it very short.

Yesterday's counts definitely supported nadir, as have today's:
WBC:  0.2, 0.3 (since the chemo is done, these will slowly start to climb up, but will likely stay pretty low through the next few days before the climb up)
Hemoglobin: 7.4, 7.1
Platelets: 11K, 6K

No blood products needed yesterday, but today I'll get platelets again.

And to kick of the celebration of finishing this first round of chemo, I had the most wonderful morning! Milwaukee does the coolest biking event, called the Santa Rampage. At this event, literally thousands of people dress up as Santa (or elves, etc.) and ride their bikes from Wauwatosa to the lakefront. It's been happening for 15 years, and I'd wanted to ride last year, but caught a cold and it was rainy. I'd determined there was nothing that would stop me from riding in it THIS year. I bought my Santa suit on clearance last year and planned to ride my fat tire bike with all my biking friends. So I was pretty disappointed to not be able to ride in it this year, either.

However, my dear, dear friends, surprised me and found a way for me to participate--they brought the ride to me. :)  Barb did the actual ride, and then came to the hospital while Meredith came straight to the hospital and helped me get ready for it. We decorated the exercise bike, Barb wore her Santa stuff, Meredith wore her Christmas sloth outfit, and I had a silly hat. It was amazing (and we made the staff laugh a lot, too).

And then we went back to my room and Meredith cleaned it and decorated it with tinsel and the lights that my friend Chris had brought me.

And because I was so exhausted that I could barely keep my eyes open, Meredith, who is the most awesome K4 teacher ever, read Barb and I a bedtime story. And then I fell fast, fast asleep.

Greg came and watched me sleep, and then I was able to be leave the floor and walk with him to the healing garden--which is amazing. For Milwaukee people, it's like a mini-Domes with giant indoor plants and trees. I will be spending more time there.

And then I was unhooked completely from the IV, took a nice, long shower, and was able to walk without the IV pole for the first time in over a week. I wanted to run, it felt so good.

I was treated to the most spectacular sunset (which my photos cannot do justice to, but up on the 12th floor, you really get to see it from all angles).

And I had a long, barely-interrupted night of sleep.

Already today there are little annoyances: I feel like I'm getting a cold or something, with a scratchy throat, itchy ears and post-nasal drip; one of my two picc lines appears to be clogged and so they're trying to unclog it, but it hasn't yet responded completely and if not both are working, then I can't get two things (like platelets and IV antibiotics) at the same time. Food still tastes yucky, and I'm just missing my home. But I feel so surrounded by love--both from those who are physically with me, and by all the messages, texts, facebook comments, and just general good feelings. I don't have fear or anxiety--I'm able to just focus on healing. And that is an amazing gift. Thank you all.

Drain free, baby!

With all three of my bigger surgeries, the worst part of recovery has been the surgical drains. This surgery was no different. Up until this morning, I was afraid I might have to keep at least one drain in longer than a week (the left side would not stop producing), but last night's measurements were slightly lower and this morning's even lower. Dr. Kinney obliged. Hooray!

I really thought I'd written about the surgical drains before, but can't find a post. So forgive me if this is a repeat. With each major surgery (bilateral mastectomy, implant placement, explant) I've had Jackson Pratt (JP) surgical drains placed in my chest to remove the build-up of fluid (blood and lymph, mainly) that can impede healing. They look like this:

That flexible end is wound around the area where the surgery was done, and then the clear tube feeds out of the skin, where it's secured by being sewn in and taped, and the grenade-shaped bulb has a cap that can be opened to create or release pressure. Two or three times a day you need to "milk" the tube from where it exits the body to force the fluid down into the bulb. Then pressure is released, the bulb is emptied into a measuring cup, and the volume of fluid is recorded before it's flushed. Finally, the bulb gets compressed, the cap is closed, the bulb is secured to clothing (or a lanyard) and the negative pressure continues to suck out that excess fluid.

I didn't feel the tube inside of me--except when it was being pulled out (squick...). But the stitches and adhesive where it exits the skin alternate between pinchy and itchy--especially as my body was healing and the wound started to dry up. In addition, my drains all ran out the side of my body, so they were near the ribs and would prevent me from turning on my side in bed or otherwise. Mostly they just impede movement in general, and that is why it's so amazing to have them pulled! Now I just have gauze taped over the wounds to absorb any extra leakage. Hopefully they'll heal up in a day or two.

In addition to removing the drains, Dr. Kinney said nothing bad showed up in pathology (YAY!), and he showed me photos of the full capsules and intact implants that he removed. (If anyone wants to see the photos, I'm happy to share, but don't think I should put them up on a public blog in case people are grossed out by that kind of stuff.) The capsule (which is the scar tissue that forms around an implant) on my right (cancerous) side was a mess. The alloderm (cadaver tissue) that Dr. Sterkin used to make a big enough pocket to hold my implant on that side, since it had radiation, and the grafted fat did not take as they should, which is likely what led to the capsular contracture and extreme pain on that side. Seeing the mess of dead fat and alloderm taken out on that side made it pretty obvious why my chest is not flat but concave. It's essentially skin and scar tissue on top of muscle. Dr. Kinney also verified that the implants pressed in on my ribcage and that is responsible for the concavity and is not reparable (unless I did a flap surgery in the future). If I only knew then what I knew now...

In the week since surgery, I think the concavity has lessened somewhat. Either that or I have just gotten used to it. I'm able to start doing some gentle stretching to keep my shoulders loose, and in a few weeks I'll return to PT to see what I can do about releasing some of that scar tissue. I continue to be able to take big, deep breaths, which I didn't know I'd missed until I was able to do it again.

Finally, I asked about when I could return to biking. Dr. Kinney said that the biggest risk to me post-surgery is too much motion of my arms and chest area, which would increase fluid build-up and possibly require manual drainage. But biking doesn't use much arm motion (unless you're mountain biking, which I will refrain from for at least a little while), so he said I could bike whenever as long as I watched for any fluid build-up. Guess what I'm doing tonight... :)

After my appointment, Greg and I went to Bel Air for Taco Tuesdays. Tomorrow I return to work. I'm so glad I asked around for second opinions on surgery, and went ahead with the implant removal. It's not perfect, but I have confidence that it will be much better. And I'm pretty excited to only miss a week of biking. I don't think I'll be riding with the fast group for a few weeks, but I'm excited to get back on my bikes.

Thank you to friends who brought me delicious protein-heavy snacks, sent me beautiful flowers, kept me company on walks or chats, and who checked up on me by texting or messaging. You've helped heal my body as well as my mind. Now there's nothing holding me back. Onward and upward!

Triathlete

For those of you who follow me on Facebook, you're probably sick and tired of reading all my posts about Team Phoenix. But bear with me while I try to write it all in one post (and I promise to at least minimize the TP posts on FB--if not completely stop them!).

A few years before I was diagnosed with cancer, I had gotten fed up with my physical appearance and my (lack of) physical skills. I'd heard about the Couch to 5K (C25K) program, and so I signed up for the Panther Prowl (UWM's scholarship-funding 5K) as a runner, downloaded the C25K app, and got to it. Although I didn't LOVE running (ok, jogging--I will never be a fast runner), I was amazed at the improvements in my ability to keep running.  When I had started, I was gasping at the end of the 60 second run time, and could barely get out of bed the next morning because my legs hurt too much. In those 8 weeks, I dropped weight, I liked how I could burn so many calories in only a half hour workout, and I didn't need any extra (expensive) equipment. I didn't love it, but I kept it up and kept losing weight (gradually) and building muscle.

And so it was that I was in the best shape of my life, and my lowest weight since high school, when I got my diagnosis.

December, 2014

I was determined to stay fit through treatment and I had some good days. But little by little, I gave it up. Surgery had restrictions on movement, complicated by my low platelets. Chemo exhausted me to the point where I could barely walk, let alone run. Radiation caused burns and pain that made it impossible to swing my arms at my sides. And hormone blocking meds hurt my joints so much that I couldn't pick my feet high enough off the ground to feel safe and assure I wouldn't trip. All my treatment plunged me into menopause and along with feeling crappy (hot flashes-who wants to exercise through that?), I put on almost 40 pounds. Post-treatment I was alive, and I was grateful for that, but I wasn't really living. I pushed through to walk (about all I could manage), and I talked about joining a health club, but certainly never went further than talk. I hated the way I looked in the mirror, and I tried not to be angry about how I felt due to all my treatment side effects. But it was hard. And every night I'd lie in bed and just moan, "I hurt, I hurt, I hurt."

~~~~~


I had heard about the Team Phoenix program marginally. Some local Facebook friends had posted about it, and I thought it was a neat idea--cancer survivor to triathlete! I'd considered joining last year, but a part of me was relieved when I realized that my reconstruction surgery interfered with the training and I wasn't eligible. This year, I saw that the culminating triathlon was the weekend of my 30th class reunion, and I almost didn't sign up for it again. And then I had my 3 month appointment with my oncologist, where I explained that I could barely get out of my chair at the end of the day and she told me, before I gave up and tried switching to the fourth hormone blocker, to give exercise a try. I told her I WAS exercising, but she said that walking wasn't enough. I needed to do cardio and I needed to do it 5 times a week. That seemed impossible and I knew I needed some sort of accountability. And then a friend who had done TP two years ago told me I *had* to do it. So I signed up.

Team Phoenix has a really crappy admission ticket, but there are so many unexpected gifts once you're in.

Yes, I completed a triathlon. I am a triathlete. That's pretty awesome. Someone said to set three goals before the tri--
1. One you're pretty sure you're going to achieve (I wanted to finish).
2. One that is a bit of a reach, but obtainable (I wanted to run the full 5K w/o walking).
3. One that is a stretch (I wanted to do it all under 2 hours).

I made all three goals.

And it wasn't even all that difficult (other than the swim...). Unlike the 5K races I'd done before, there was never a time when I felt like I couldn't do it. 

The adrenaline rush from that morning carried me from a 3:00 am wake-up time to a 9:00 pm bedtime that day. It carried me through sore muscles that afternoon and the next day. It carried me to the JCC (our local fitness center) to join it the day after. And it still makes me smile (and sometimes cry) to remember events on that day.

~~~~~
Team Phoenix kicked my butt into shape and made me stronger than I ever remember being. But it's not just about the exercise. It taught me smart nutrition. I learned how to be a smart and good bicyclist ("biker back," "passing on left"). I learned the importance of being well hydrated. I learned bicycle maintenance (ABC's; how to change a tire). I learned that expensive shoes (when fitted to you) really are worth it. And I re-learned the importance of having your tribe get you through the tough stuff. My tribe was led by my friend Dawn, who I first met through the ABCD mentor training. We ride-shared to most practices, but we shared so much more on those trips, and practices both with and without the whole group.

Dawn & me

My TP sister Wendy shared this quote:

And it explains--much better than anything I can say--the full Team Phoenix experience. The women that I took this journey with are amazing. We are all very different in all but one way--being cancer veterans. But going through this training, with that shared background, has bonded us in a very unique way. The closest thing I can compare it to would be my La Leche League group from when my kids were little. Similarly, we had very different backgrounds and experiences--but we were all breastfeeding our little kids. And for that time of my life, La Leche League was my rock!

Half the fun of TP practices was coming home to see the photographs that other teammates and especially our volunteer team photographer (husband of a TP alum) took. I re-lived each practice viewing those photos (and so I'm sharing a bunch with you).

Throughout the 14 weeks of training, the running whipped me into shape, but I'd run 5K's before. 

Mere meters from the end of a full 5K run

The biking was a lot of fun, although it, too, pushed me (especially those hills). 

My favorite place to be: on Fawkes, my bike

But the swim was really difficult. I started training thinking I'd be able to swim with a little bit of practice. I'd taken lessons as an undergrad, and I figured all I needed was access to a pool and I'd be fine. I did okay in the pool (not great), and I gradually worked up to being able to swim twice as far as I'd need to do on race day.

Me in a pool. Not in love with it, but it was do-able. I swam ALL THE STROKES!

And then we took it to a lake. Growing up where I did, I had no fear of lake swimming (although, as a kid, we didn't "swim" so much as splash and ride floaties). Imagine my complete surprise, then, when on the first day we had practice in a lake, I had a mini panic attack. 

Me, in the lake, being talked down by one of my swim angels

I still can't explain why, but after the first open lake swim, even swimming in a pool became difficult. I was panicky whenever my face went in the water, so I gave up breast stroke and freestyle, and practiced side stroke. I was actually more comfortable doing backstroke, but went all over the place when I couldn't see where I was going, so sidestroke seemed a logical choice.

Then we had our full race distance practice on open water. I'd not been back in open water since my first panicky experience, but again I was sure I'd be okay. I'd become a MUCH stronger swimmer, and I could sidestroke, so wouldn't have to worry about my face in the water. I'd been repeating the mantra that I was a strong swimmer, and I had envisioned myself finishing the swim and feeling triumphant. I had a swim angel by my side again (different one), and I set out.

It was awful. At one point someone passed me and I got water over my face, which entered my nose and I thought I was drowning. That happened two more times. I was scared the entire time, and I kept repeating in my head, "I can't do this. I will have to give up my training because I cannot swim without feeling like I'm dying." Finally my swim angel told me we were almost done, and I reached for the bottom of the lake. I couldn't touch, which threw me into another panic, and I barely made it to shore. I don't even remember getting out of the water. I know I was choking back tears--of both frustration and embarrassment.

And then I got home, shaken, and saw this photo. This is me, coming in near the end of the group, to the noodle rainbow. Teammates cheering and patting me on my back, and raising my arm in victory and smiling. I saw none of it at the time, but I saw this when I came home. And I knew I had to do it. Would do it. COULD do it.

Me, after a near-death experience, surrounded by my TP sisters

I talked to my coaches. Got some pointers (apparently you're not supposed to breathe in through your nose at all when you're swimming), and realized I would need a swim angel for the actual race, and that meant I could do backstroke, as my angel would let me know if I was going off course. I practiced and practiced at the pool, and I watched YouTube videos on perfecting the backstroke. And I made it. There *was* a particularly unpleasant point at the end of the swim during the Tri where the Olympic heat swimmers passed me on one side, sending waves and splashes over my head, while the lily pads attacked from the other side, and it was really, really bad--so bad that I may never swim in open water again--but I still never thought I couldn't. (Thank you to my dear race swim angel for getting me through that!)
~~~~~Finally, though I haven't gushed about them on Facebook, my whole family was amazing and supportive. First of all, they all got up at the crack of dawn (even before coffee shops open) to drive an hour and be at the Tri by 6:00 am, and make awesome posters, and share amazing Facebook posts and Snapchat stories the day of the Tri. 

Cara's Facebook post. I'm told Mira snap-chatted it, but I'm not on snap chat, so have no way to verify that.

Greg, hugging me after placing my medal around my neck at the finish line

Each TP team member got one free purple supporter t-shirt, and could buy additional ones for other supporters. I asked my family if they each wanted one, or if just my "number one supporter" should get one. They decided it should be a competition to see who was proclaimed number one. Lots of events were proposed, but in the end it should be no surprise that they all are my number one supporters. And it wasn't just a one day event. They adjusted their schedules for the 14 weeks of trainings. They took on cooking and cleaning so I could drive up to an hour to practices, work out for 90 minutes, and drive an hour home. They ran and biked with me on my non-team practices. They put up with my endless stories about what I learned at practice that week ("Drop your heels on the bike to go up a hill!" "Carbs are good!" "Turn off your brain, turn on your breath," "Coach Lauren says..."), and so many stories about my new friends.

The whole family, in their supporter tees

I love you guys more than words can say. 

~~~~~

Finally, it should be said that all the wonderful corporate sponsors, and prior benefactors made this program possible for me. Every year it grows, and therefore costs more. If you are so inclined, I do have a fund-raising page (completely optional, but I only raise money for causes I truly believe in), and you may make a donation at my personal page.

~~~~~

One of the things I'm most excited about is becoming an orange shirter! Athletes wear purple TP shirts; coaches wear blue ones; medical staff wear red ones. But previous year alums can volunteer at practices in the future--and they get to wear the orange shirts. I've made so many more new friends who are previous year athletes. And I look forward to wearing an orange shirt next year.

~~~~~
Other photos:


We had professional shots taken in our jerseys where we got to wear makeup and do our hair. These three are mine.

Here's the Team Phoenix 2017 athletes:

And here's the whole group of 2017 athletes and supporters on the day of the triathlon. The photo had to be taken with a drone to fit us all. :)

(And if you've read this far, just so you know--5 days of cardio exercise a week really DOES help with the pain associated with cancer treatment side effects. My joint pain is essentially gone. My neuropathy in my feet is seriously minimized. And I do have more energy--and strength. All that's left now is the weight loss. I have high hopes. And Team Phoenix sisters to support and remind me about the importance of keeping it up!)