I probably should stop making predictions

Today was my second appointment with Dr. Atallah and the appointment where I'd get the results from my third bone marrow biopsy and would likely start the next round of chemo. As I'd written last week, unlike the doctors at St. Luke's, the Froedtert doctors like to do more frequent bone marrow biopsies to check on disease progression (or remission) before continuing with a chemo regimen. I *knew* going into the appointment that there was no way that I'd be in remission--especially since, due to insurance delays, it was only one of the two chemotherapies that I was supposed to have taken.

Dr. Atallah walked in and said, "your marrow looks great." I smiled and didn't think much of it. Then he said that the biopsy showed that my marrow was hypocellular with no visual evidence (per flow cytometric analysis) that there was any leukemia present. My jaw dropped and I told my kind, wonderful doctor, "SHUT UP!" My head was spinning and I couldn't believe what I'd heard. He said that there was no reason to start chemo today and since my blood counts were moving upward, he wanted to give them a chance to recover further. He told me to come in in a week, get labs done, and by then he'd also have the cytogenetics from the biopsy and we could figure out next steps. I think I said, "shut up" a second time.

I am by no means out of the woods yet. The cytogenetics are a big deal and given that my first two biopsies both showed the outrageous 14 genetic abnormalities, I'm not really expecting to get a clean report next week. If there are still cells with genetic abnormalities, and my counts have recovered well, then I will start another round of chemo next week. Depending on which genetic abnormalities persist will determine if I just get Vidaza (the hypermethylating agent that works indirectly on P53) or if I add Venclexta (which blocks the BCL2 protein). I'm pretty excited to NOT have to spend my birthday in the chemo ward!

But it is most definitely moving in the right direction and I am, for the first time, daring to consider my future a bit more.

I asked about the timeline to transplant, if I am determined to be in remission from a cytogenetic standpoint as well, since St. Luke's had said that I would likely have 4-5 cycles of chemo regardless of the biopsy results. He said that in addition to insuring that I am in remission (the biggest hurdle), they have to secure a bone marrow donor. My in depth results aren't back yet (insurance approved that procedure last week and I did the cheek swab last weekend), so he said in a perfect situation, the transplant would be two months from now. EEK! Again, everything would have to line up perfectly for that to happen, but we're talking about it, so that's something. Essentially, it seems that Dr. Atallah (rightly) feels that the longer I am walking around immunocompromised, the riskier it is. So build up those blood counts for now, and get to the transplant ASAP. I'm on board with that.

A few other things since my last post:

As I'd said, my blood counts are maintaining and sometimes climbing on their own. After I had the reaction to platelets on January 2, my platelets and hemoglobin went up.
Platelets: 27(with transfusion)>26>43>75>77>73
Hemoglobin: 7.2>7.3>7.5>7.9>7.7>7.9>7.7
All without transfusions. It's like my bone marrow heard that there was a severe shortage of blood in Milwaukee this month.

Unfortunately, my white blood cells seem stuck. In the same time period, they dropped from a "high" of 0.8 to 0.4, 0.5 or 0.6 (essentially all about the same level--and "normal" is 4.2-11.0). Here's hoping that another week off chemo helps with that, too.

I called Dr. Shah's office (my breast cancer oncologist) for a refill of my Femara prescription--the aromatase inhibitor that I take since my breast cancer was ER and PR positive. It's supposed to prevent recurrences. She said that I didn't need to take it now, and it had the potential to interact with some of the chemo/meds I'm on now or to cause more severe side effects. I'm not sure how I feel about that. On the one hand, I'm happy to be taking one less medicine--especially one that had significant side effects on its own. But on the other hand, it was my insurance policy (admitted not a great one...) against metastases. I have to trust that she knows what's best. :)

My insurance finally approved the switch in anti-fungals, so tomorrow is the first day I'll take the voriconazole--the one that can cause hallucinations. I'm kind of glad that I'll be easing into it without the added burden of chemo at the same time. And I'm still hoping I'm in the 70% of patients who do NOT have hallucinations. General problems with my vision are more likely, though.

I probably jinxed myself by saying multiple times that I had no pain, because my knees have gotten steadily worse--especially my left knee. I have no idea what it is or even if it's joint or muscle pain, but they are weak, and it's hard to squat or get up from bending down without pulling myself up by my arms. I've been trying to exercise through the pain, walking when it's safe (not icy) and riding my bike on the trainer. They hurt when I move and they ache when I'm still. But I am not going to let a little pain keep me from keeping up my strength as best as I can.

Finally, thank you so much to everyone who signed up to drive me to appointments, to be on call, and to walk with me. I will be contacting those who signed up to drive me to chemo this week to cancel the rides (hooray!). When I have my appointment with Dr. Atallah scheduled, I'll need a driver for that, and if he says I need chemo after that, I'll need drivers for the following week.

I also decided to add another tab to the spreadsheet. This week I spent a lot of time home alone as everyone was back at work and school and I only had appointments two days this week. And I learned that my mental health doesn't do too well when I spend too much time alone in one location. I know it's going to get colder and be dangerously icy for walking and not everyone likes to walk. So if any of you want to come visit--and are healthy and willing to wear a mask--I would welcome visits of about an hour. You can sign up on the tab to be on call :) or you can suggest a day and time to visit. Please remember that I still don't have neutrophils, so only come if you're healthy.

Karen came to walk with me and pushed me to walk 2.3 miles!

Right now I feel better and more positive than I have since this all began. I am taking the good days when I get them, knowing that there will undoubtedly be more cloudy days. Thank you all for your continued good wishes and thoughts and prayers. They move mountains!

Return of the Roller Coaster

Over three years ago, when I was first diagnosed, I wrote a post about feeling like I was on a roller coaster. My friend Katie gave me that visual, along with the permission to throw my hands up and scream some of the time. Well, I have felt like I've been on a roller coaster more than I'd like these last few years. Sometimes there's a long stretch of easy, winding track, but then the steep inclines and the gut plunging dips come along.

Last week was my routine 6 month check-up.  It's really nice to not have such frequent visits, except that I now usually have a huge list of questions for Dr. Shah. This was no exception.

My lab results were good. 
Platelets holding at 88K
Everything else in the normal range

Unfortunately, I've gained 7 pounds in the last 6 months. I kind of knew this, but it was still depressing to see in my chart. I've been more active this winter than in any winter I can remember, but not as active as I'd been the previous 6 months. I think I need a workout buddy. I'm hoping that volunteering with Team Phoenix 2018 will get me back into a better routine. (I wonder if I can get a copy of this year's plan and follow along on my own to build back up to that awesome strong place that I was last year...)

I'm nearing the two year mark on aromatase inhibitors (first Arimidex, now Femara), so I will need a bone density scan before my next appointment in 6 months. (The aromatase inhibitors decrease estrogen, which frequently results in loss of bone density.) 

While Dr. Shah was examining me, I mentioned that I'd had some trouble swallowing on occasion (usually when I'm drinking water and I kind of choke on it) and that I felt like my neck was a little swollen. She felt my neck and then looked at it, and said, "Oh. And the swelling is uneven." I said that I felt a lump lower, too, on my left clavicle. She said, "let's order an ultrasound to make sure nothing is going on."

And here's where the roller coaster takes off.

My brain thinks all of the following, in this order:

• How nice that Dr. Shah senses my concern and is ordering an ultrasound to put my mind at ease.
• She must have an inkling that something is wrong, or else she wouldn't have ordered the ultrasound.
• (I'm just going to google what a swelling in the neck/throat after cancer could be.)
• Oh yeah, my thyroid is in that area. Thyroid issues cause weight gain, tiredness, numbness or tingling in the hands, hair loss. I have all those things. That might explain why I have all those things.
• Huh. Research shows that there is an increased chance of thyroid cancer if you've had breast cancer.
• Oh. My. God. I have thyroid cancer. I KNEW IT! I can't go through cancer treatment again. I just can't.
• OK, a secondary cancer is actually better than metastasis of the original cancer. There's better outcomes, as long as the secondary cancer isn't Stage IV. I can do this.

Of course my insurance plan has just added a new program called, "CancerCARE," and touted as "helping prevent you from receiving inappropriate or delayed care." Their oncology nurses review every treatment plan so you get "the best care." What it really means is that now every cancer-related treatment must get additional approval from their oncology nurses before the patient is allowed to receive it. So I didn't get the ultrasound for almost a week. Plenty of time for all those crazy thoughts to percolate.

Then I'm in the ultrasound and the tech looks at my thyroid and tells me it looks great. At least 50% of people have benign nodules in their thyroid--usually lots. I have one tiny one. (No thyroid cancer! But then what explains my exhaustion and weight gain?)

She then moves to the left clavicle and it takes awhile to get a good image of the bump on it. It is not, as Dr. Shah thought, just that my clavicles are uneven. It is actually a lymph node that is located in front of my clavicle, and it's somewhat enlarged. A lymph node can be enlarged for any number of reasons, so this is just a wait and watch situation. But at least nothing to worry about now. 

The last thing Dr. Shah had discussed at my appointment last week was something I'd asked her about at my last two appointments: using a bisphosphonate (Zometa or others) to prevent osteoporosis and bone metastasis. The Femara that I am taking (as with any aromatase inhibitor) is known to have a relatively frequent side-effect of osteoporosis. One of the ways to counteract osteoporosis is with use of a bisphosphonate, which acts by inhibiting osteoclasts (which break down bone) and allowing osteoblasts (which build bone) to work more effectively. Research showed that when women were on bisphosponates for bone loss, they had a decreased chance of bone mets developing. As with all research, a single study doesn't prove anything, but three studies back in 2011 gave at least some support to starting bisphosphonates even before bone loss occurs. I'm not sure if Zometa has made it into standard of care, but Dr. Shah actually was the one who brought it up this time. It is an infusion (i.e.: given by IV) that you get every six months for five years. Side effects include a few days of flu-like symptoms, and possibility of osteonecrosis of the jaw, which is much more scary.

And this brings me to even more frustration with CancerCARE. Normally, I'd have left the exam room after my check-up and walked to the infusion bay, gotten my Zometa, and not had time to worry about it. Instead I was not able to get approved and then administered the Zometa for 9 days. 

In the end, it all went well. Greg saw how worried I was (I get PTSD when I have to sit in the chemo bay), and went in late to work so he could make sure all was going well. I got an AWESOME nurse who took her time to find the best possible vein, and got my IV in on the first try. I have had the flu-like symptoms (achy, chilled, tired), but that improves when I take a Tylenol and an Advil. And I don't have to do this again for six months! 

And so I'm back to that nice, cushy straight-away on the track, where it's good to be outside, feeling alive. Where I vow to do my best to appreciate all the good in my life--including my current good health. Where I think that this may actually be the time where I stop worrying about every little thing being a return of cancer. 


For the record, I've never liked roller coasters...

Like a Phoenix

Since the last time I posted, I have another one to check off the list: I had my last appointment with the plastic surgeon on April 10th.  That is, unless I decide I want to have him do more liposuction to improve the shape of my breasts (nothankyouverymuch!). Overall everything looks good--Dr. Sterkin is very pleased with the final results.  I told him I was still having pain (feels like bruising) on the right side, but he said that could be all the nerves, which were triggered by the fat transplant. (Sure would have been nice to know that beforehand!) He also said I should not have had the OT do the deep tissue massage in that area, as the type of implants I have (textured) and the way he put them in (sewn to my ribs) could be damaged by massage in that area. It might even be causing lymphedema in my torso! So I stopped the massage, and it actually seems to be getting somewhat better. Less bruised, at least, though still some pain.

I then showed him how I reacted to the dye in the tattoo on my ankle and he said that my reaction, in combination with my low platelets and how thin the skin on my irradiated side is, would make him recommend that I do *not* get my breasts tattooed--at least nothing as major as I'd hoped.  If I wait another year or so, I could try to get nipples (or 3D nipples) tattooed, but probably nothing more major than that. I really saw no reason to get nipple tattoos (not like they'd be functional or something I'd want to show off like a cool design) until I started going to the gym and pool. I guess it would be nice to feel a bit less awkward when changing in public.  I don't know--I'll see what happens in a year.

This week I had my 3 1/2 month follow-up with Dr. Shah. Overall everything seems good.  Bloodwork is all normal except platelets (holding steady at 85K).  She was happy to hear that exercise seems to be helping with the joint pain.  (To be honest, I'm happy and surprised about that, too!) 

I did decide to drop out of the clinical trial I had been doing. I'm feeling some guilt about that.  However, the combination of the effort to get 10 tubes of blood from me at two different times within a week, plus my not wanting to be knocked on my butt for 3 days following the injections (severely impact my triathlon training), and knowing I'm a control and have made it through the majority of the clinical trial (thank you, Biostats, for teaching me about Kaplan-Meier curves so I understand my participation is not completely lost, even after dropping out), helps.

My trigger thumb (side-effect of Femara) seems to be getting worse and is causing me pain, so Dr. Shah recommended getting a cortisone shot. Still need to schedule that--thinking I'll check with the orthopedic doctor my mom used for both her knee replacements and carpal tunnel syndrome surgeries (Dr. Rory Wright). Add another doctor to the mix!

The experiment to wean off the compression garments is having mixed results.  I think it was going well when I wasn't wearing them most days (unless I felt my finger swelling).  But then gardening season started and every time I'd garden, I'd get swollen, so I wore them more for that.  And many doctors and therapists say you have to wear them while exercising. I actually notice more swelling AFTER exercising, and it seems I am always either exercising or it's the day after exercising, so I'm wearing them a lot more again. I did get two new sets, and realized how stretched out the older sets had gotten. I also read a post on how alcohol is bad for lymphedema.  Not that I drink a lot, but that plus the recent article about one drink a day increasing breast cancer recurrence kinda sucks! Nothing like a little guilt about my one drink a month.

Another relatively new side effect I've developed is restless legs--anytime I'm still for awhile, but especially when I'm trying to fall asleep.  Dr. Shah recommended trying a calcium supplement, so I'll give that a shot.

The biggest issue I talked about with Dr. Shah was my brain fogginess. Of all the side-effects I'm having from treatment, it's by far the one that is bothering me the most. The worst part is that I feel like it's getting worse, and not better. I'd chalked it up to chemo-brain, which is supposed to improve following that first year after treatment ends. I find myself really struggling with names and with words in general (I can give you a long description of the word I'm looking for, but can't come up with the word). And recently there's been a LOT of people saying, "remember when..." and I honestly canNOT remember what they ask about. It's annoying and a little scary. Dr. Shah asked about brain exercises/games and I told her I do 7 Little Words every morning and have recently returned to playing Words With Friends (thank you to those who play with me!). She said that was good, but I should add math games--like Sudoku.  I don't like Sudoku, so Greg suggested KenKen, which is kind of fun, but I wish there was a social math game like WWF.  Anyone know of one? The other thing that Dr. Shah recommended was a visit to a Neuropsychologist to determine if my brain fogginess is really chemobrain, or something else. This made so much sense, as I had just read a couple interesting articles that supported the idea of it NOT being chemobrain. My friend Dawn posted an article about breast cancer survivors developing a form of PTSD--usually about a year after treatment ends. And then I found another article about how brain fog after breast cancer treatment might be caused by PTSD and not chemo. So I agreed to a four hour evaluation appointment with a neuropsych next month. On the one hand, the last thing I need is one more appointment, but I am determined to do whatever it takes to maintain as much quality of life as I can. So I'll do it.

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And finally, the biggest change in my life lately--and the inspiration for the title of this post: Team Phoenix.

I am now 6 weeks into the 14 week training of Team Phoenix.  I will complete my first (sprint) triathlon on July 30, 2017, and any of you are welcome to come meet me at the finish line. It starts with a 1/4 mile swim in open water, then a 15K bike ride, and finally a 5K run (or walk).  I have already ridden 15+ miles on my donated Trek bike; I have done 5K's before and am C25King my way back to that, and I am desperately trying to learn to swim in a more effective manner than I have all my life so I can do that part. 

The exercise plan has resulted in some more muscle aches, but it has done amazing things for my joint aches and flexibility.  I feel STRONG!

Still, the best part of Team Phoenix is that I'm doing this with 56 other female cancer survivors (most breast, but not all). Some of us started w/o knowing how to swim, or not having even ridden a bike for years. Some started as previous triathletes. But we're doing it together, with the most amazing team of coaches possible--including Team Phoenix alums. I cannot put into words what a powerful experience this is, and if you are a cancer survivor in the Milwaukee area, you need to do this next year!

The support for Team Phoenix is amazing and I want to give appreciation to the organizations that donate.

*Wheel & Sprocket loans us brand new Trek hybrid bikes (which we can buy at a discount after the triathlon); I've named mine Fawkes

*Land's End gave us each a swimsuit (the one I got FITS ME as it's a tall one)

*One Step gives us a discount on custom-fit running shoes (I can't believe how much difference it makes to own "good" running shoes that correct for my inward-turned knees)

*The JCC gives us a free membership the duration of training (so I can practice swim, but also could use the treadmills and stationary bikes on rainy days)

We travel all over SE Wisconsin for practice twice a week and to see trails and parks that I didn't know existed. 

It is tiring and very time-consuming, but I'm dragging family into practice with me so I get to see them. If anyone wants to bike or run with me--or help me figure out swimming--let me know.  I'm determined to do this, and to set myself on a path to continue with at least some of the activities. There's a pretty active TP Alum biking group!

And so I am, slowly, rising (like a Phoenix) back to my old self--or maybe, in some ways, a better self. All I have to do is flip back through my blog entries to see how far I've come. Thank you all for supporting me.

Mentorship and healing

I said I'd write a post this week, though I don't have an awful lot to share.  Still, the legacy of chemo-brain is with me, and so I'll write if for no other reason than to refresh my own memory when I try to remember how things were in six months.  

I had my 3 month check this week.  And the good news is that I can start spreading out my check-ups now.  That means my next one will be in 4 months.  Or at least it would be in 4 months if I weren't doing the clinical trial.  Since it takes place every 6 months, I'd have to come in in 3 months for it, and then a month later for my regular check...  So we're going to split the difference and I'll go in in 3 1/2 months.  I'm hoping after that I can push it to 5 1/2 months so I can do both at once again.  Let's see how that works!

The worst part of this visit was the blood draw.  I really miss my port!  As those of you who read Facebook know, this draw did NOT go well.  I know I'm a kinda tough stick, but this was ridiculous.  I have three holes in my arm, but each of them involved multiple in and out, back and forth, up and downs.  I am ridiculously bruised--especially on my wrist!  Who ever heard of taking blood from your wrist?  

That's two days after the appointment. And on the wrist where I wear my FitBit!  Grumble, grumble, grumble.

Other than the blood draw, I had a very good appointment.  

My platelets are stable at 84K.  All other CBC measures were normal--which is unusual for me! My hemoglobin level is in the normal range, so I can stop iron supplements for the first time in over 2 years.  

We talked a lot about Femara and the pains it's causing me.  I'd read up a lot about a study done in the mid 2000's called BIG 1-98, which compared 5 years of tamoxifen to 5 years of Femara.  In addition to a general "Femara is more effective" result, when it's broken out into several groups that I fall into, the results are even better.  For example, women with invasive lobular carcinoma (which I had--much more rare) had even greater effect on Femara than women with invasive ductal carcinoma (the most common invasive BC).  There was also concern that switching young women from tamoxifen (used in pre-menopausal women) to Femara might not be effective since sometimes they were thrown into menopause unnaturally by treatment.  But that is not the case--it's even marginally more effective in "younger" (defined as under-55) women.  So I am convinced that this is the med for me, and I need to learn to manage the side effects.  Dr. Shah says that (at least at this point) research shows there's not sufficient benefit to be on Femara longer than 5 years, so I will be on it for 5 years (as opposed to 10--although I'm sure research can always change that).  I can do this for 5 years!  The side effects that I'm dealing with are mainly three things: joint/bone pain, tiredness/exhaustion, and trigger thumb.

Trigger thumb is annoying--especially first thing in the morning.  If it gets really bad, I can get a cortisone shot, but for now it's doing okay with me just massaging and stretching it.  Luckily it's on my non-dominant (and non-affected) side. I'm considering trying a brace for nighttime, as keeping it straight overnight is supposed to help.  It's worst in the morning--painful as well as annoying.

Dr. Shah isn't convinced that my level of exhaustion is due to the Femara.  She wants me to have my thyroid levels tested (again--had them done about 5 years ago).  More doctor appointments...  But Dr. Shah also said using caffeine is fine.  So I've upped my coffee consumption and just can't do late nights (and by late nights, I mean out after 9:00 pm) or early mornings.

The biggie is the joint pain.  I'm having the worst pain in my right knee, which I know has osteoarthritis.  But the rest of me hurts, too--my back, hips and legs, especially.  I have permission to take Advil and Tylenol if needed, but Dr. Shah says I really need to exercise--and that doesn't mean walking.  She said at least 5 days a week of cardio for 30 minutes.  She promises it will help, but I hate cardio. Still, I can't keep up with this level of pain, and I don't want to stop the Femara, so I'm trying.  I re-started C25K on Wednesday night, was really sore Thursday morning, did 30 minutes of the elliptical Thursday night, and can barely walk this morning.  <sigh> I am, however, going to an informational meeting next week about Team Phoenix--a triathlon training program for breast cancer survivors.  I've heard fantastic things about it, and I hope that belonging to a group like that will make me work at a level I need. Besides that, they have PT's and athletic trainers who have experience with cancer patients and I think that will be super helpful.

The other good thing from my appointment is that I have permission to try to go w/o my compression garments and to "cautiously observe" my hand and arm for lymphedema.  One of the odd side effects of wearing a sleeve is that I wasn't using my right hand/arm (for fear of getting my glove dirty and/or not having grip on that side) and my strength has really gotten poor.  So hopefully now I'll use my right arm more.  It feels very strange!  I'm still wearing the nighttime garment and will for a couple weeks at least to make sure that the lymphedema doesn't return.  If it's okay, I'll try to stop the night one, too.  I'll still always have to wear them for high risk activities (like flying), but it would really be nice to not have to wear one in the summer heat.

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Finally, the other thing that I've been doing cancer-related is mentoring.  

When first diagnosed, I didn't want to tell local people until I knew "everything," including my treatment plan.  But I needed someone to help me figure out what was happening next and what the tests meant and what options existed.  I had an online friend who was my go-to and I couldn't have made it without her guidance and no-nonsense advice.  Since that diagnosis, I've been able to share advice with other long-distance friends.  Though I wish it weren't the case, I'm so glad to be able to pay it forward.

When I let the kids' teachers know about my diagnosis, one of them told me about ABCD (After Breast Cancer Diagnosis), as her mother was a mentor.  I reached out and was paired with two mentors who were wonderful.  I contacted them a lot until word got out locally and I switched much of my dependency to locals. I was trained to be an ABCD Mentor in November and was able to connect with my first mentees this month.  The training was emotional (re-living everything) and yet very good.  I was a bit afraid that mentoring would do the same again.  And to an extent, it did.  But overall it is a really Good Thing.  I am able to think about what I've been through differently, this far out.  And I can say, without a doubt, that treatment sucks, but it's doable. It's awful, and scary, and emotional and really scary and totally doable.

As I said, when word got out, I was surrounded with support from local survivors/veterans.  I connected with women who I'd known, but not shared much more than a passing hello with for years.  (Once you're in "the club," you understand.)  One of these breast cancer veterans and I met for coffee last month, and found out that an employee at the coffee shop is currently going through chemo for breast cancer.  We decided to do a monthly "Cancer Coffee" (we're open to a friendlier name suggestion :)) and if you're a BC veteran and live in the area and want to join us, email or message me and I'll send you details. 

The new friends I've made (and friendships I've strengthened) are yet another silver lining.  I'll take it!