Less than a week...EEK!

By this time next week, I will (barring anything unforeseen; knock hard on wood) be in the hospital and have started chemo. Eek!

This post will have LOTS of medical info (for me to refer back to) and will include a tentative timeline. Not exciting reading, but a plan, and having a plan puts me in my comfort zone.

First off, all of my pre-transplant tests are good. That includes an echocardiogram, EKG, CT scans of my chest and head, a pulmonary function test, and tons of blood tests including CBC, blood chemistry, communicable diseases, immunity, and a pregnancy test. My white blood cell counts continue to drop, while my hemoglobin and platelets are increasing, though nothing is in the normal range right now. I've had a social work consult, a psychological consult, a pharmacy consult and signed my name to at least a dozen pieces of paper indicating that I understand the risks of this procedure and the medications I'll be given and that I give permission for storage and research on any of my tissues that are not used for my treatment and would otherwise be discarded. All that remains is a COVID-19 test, which will not be done until the morning of admission.

I have learned that my donor is a 22 year old woman from somewhere in the US, and that she donated earlier this week and her stem cells are currently cryogenically preserved at Froedtert, waiting for my body to be ready to receive them. (That gives me chills every time I think about it.) I had to sign an extra paper because my donor received a tattoo in the 12 months prior to her donation and the FDA requires that disclosure (although she's been tested for known blood borne diseases and there's really no concern from my medical team). Her blood type is O+, which means that when the transplant takes, I will also be O+. (Makes sense, but I hadn't thought about that!) I will continue to receive A+ until I convert at about 1 month. Then when there are signs of conversion, I get O- until I'm completely O+. (So donors, keep that in mind! LOL)

Dr. Hamadani explained that my myeloablative chemo is "intense" but that it's the best choice for my situation, and given that I am "very fit."

From the information provided by my transplant coordinator, the "schedule" and what I should expect will look something like this--although, as always, everyone responds somewhat differently:

Day -6 (negative six; 4/29/20): if COVID-19 test is negative, I'll receive a shiny new PICC line, be admitted to the hospital, and have my first chemo (Fludarabine).

Day -5 (4/30) through Day -2 (5/3): Two chemos--Fludarabine and Busulfan; Busulfan causes mouth sores, a sore throat, and GI distress. I'll be sucking on ice and/or popsicles for hours each day during and for half an hour after each Busulfan infusion. I'll likely lose my appetite again, but not feel horrible.

Day -1 (5/4): Start anti-rejection drug tacrolimus; this drug requires frequent blood tests and titration of doses. It will be IV while I'm in the hospital, then transitioning to oral.

Day 0 (5/5): Transplant Day--happy re-birthday to me! 

Days 1 to 7: additional anti-rejection med--Methotrexate--on days 1, 3, 6 and again on 11; This should be my easiest week, as the chemo impact is delayed. I'm supposed to hang out, exercise, and rest up. May start the decline and need transfusions by the end of the week

Days 8 to 14: This is projected to be the roughest part. My own WBC will go down to nothing and it will take until about the end of the week for the donor's immune system to start producing and begin the upward climb. Because my body will be sorting out the two immune system thing, I'll spike fevers--which is a good thing. Unfortunately, we don't know for sure that any fever is just the immune system change-over, so staff will have to rule out another source of infection. So it'll likely be a week of pokes for blood draws, X-rays, CT scans, vitals checks, etc. I'm told to expect extreme fatigue and a lot of blood transfusions.

Days 15-21+: This will be the gradual recovery and hopefully my new immune system will build to allow me to go home sometime after day 21 (5/26). I will still need transfusions--but hopefully fewer of them. Day 21 is the earliest I will be able to head home. I know others who have had transplants that have been hospitalized much longer--even over 100 days. 

When I'm home, I'll have to go in twice a week to see Dr. Hamadani and have labs drawn. I will likely still need some transfusions, but hopefully less frequently.

Med-wise, I'll be on:

Tacrolimus (anti-rejection) for at least 6 months

Acyclovir (anti-viral) probably for life

Levofloxacin (antibiotic) until my counts rebound

Fluconazole (anti-fungal) or possibly back on voriconazole (anti-fungal) for 3-6 months, depending on counts

Bactrim (antibiotic) starting on day 30 for at least 6 months (protects agains a common opportunistic pneumonia)

Ursodiol to protect my liver from all the stuff given to me surrounding the transplant

Venetoclax (chemo) possibly even after the transplant since I still had blasts present at transplant

I'll need to avoid the sun while on most of those meds, so I may be enjoying this summer from my kitchen patio door!

The first 100 days post-transplant is especially restrictive. This is the window in which the most critical side effects (including infections and acute graft vs. host disease) will likely occur, and after which the new stem cells are most likely engrafted and making new blood cells. I will not be able to go out to eat, will be on all those meds above

I cannot travel for a year (although with COVID-19 I probably wouldn't anyway), and I will need to continue living pretty much like I have been for the last 5 months--and how you all have been since COVID-19--for that year. If my counts rebound and I'm off the immunosuppressants and anti-rejections, I can start to be re-vaccinated after 6 months, but some won't be possible until a year.

It's a lot. I spent 21 days in a row at St. Luke's and I had several visitors every day. Visitors are not allowed in the hospital now because of COVID-19. I am happy that I've been able to connect with so many people via Zoom, and I will continue to do that through my stay. I can't even think about how hard it will be to not be able to be with Greg at all. Obviously I'll be face timing and texting and Zooming with him every day. He will be able to pick up and drop off things for me--leaving them with a nurse from my unit. But that's it. Which is bizarre. I need to keep my eyes on the prize, and the only way to ever possibly resume a normal life at all is to make it through the next month, then 100 days, then 6 months, then year. I’ve been waiting for this chance for almost five months. It's time to do this.

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...

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.

~~~~~~~~~~~~~~~~~~~~~

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!

The legacy of cancer

It's been a few weeks since I wrote.  In that time:

1.  I started (and was discharged from) OT for the lymphedema.  The swelling is still there, but it's not quite as bad and--what you really hope for--it hasn't gotten worse.  I have been measured for custom compression garments, but they haven't arrived yet, so I'm still wearing the (very ratty) temporary stuff. 

2. I've quit wearing my daytime TMJ brace.  My teeth aren't perfectly back to normal, but so far, so good with only the night brace.

3.  I've graduated from the post-surgery compression garments.  It timed perfectly with the fall weather and drop in temps by 10-20 degrees, so just when an extra layer wouldn't have been the worst thing.  :)  It's still very nice to be done with that.  

4.  I got my baseline bone density scan (I'm average, which is good).  As long as I'm on aromatase inhibitors, I'll get them regularly to check for osteoporosis.

5.  I took two weeks off of the Arimidex and the bone aches almost completely disappeared!  So now I'm trying out Femara.  I appreciate any non-achy vibes sent my way!  

6.  I picked up a cold somewhere, which seems to hit me extra hard.  I'm still so tired, that adding one more thing wipes me out.  But I'm pulling out of that, too.

7.  And I lost my mother (obituary here).  Although she technically died from pneumonia, it was cancer that killed her.  In 2008 she was diagnosed with Stage 4 lung cancer.  At the time of her diagnosis, the median survival time of those diagnosed with stage 4 lung cancer was 8 months.  The 5 year survival rate was 4%.  My mom made it 8 1/2 years post-diagnosis.  She was able to move near me (more importantly, near her grandkids), and to get treatment at Froedtert, which no doubt prolonged her life.  She had two recurrences (to her lungs again, and then to her brain), and each time, cancer took a little more from her life.  By the last few years of her life, it had taken so much.  She lost the ability to be self-sufficient.  She lost the ability to walk.  Her hearing deteriorated, and while hearing aids may have helped a little, they didn't fix things.  And the cancer changed her from one of the most outgoing, giving, social people I've ever known to someone who turned more and more into herself.  I don't think it bothered her, but I selfishly wanted the mom who'd I'd grown up with--the mom who I would talk to multiple times a day, and that was the first person I wanted to tell about everything I did, and everything my kids did.  

Cancer also took my dad, 13 1/2 years ago, at age 62.  It was a different cancer, agnogenic myeloid metaplasia, and it took him sooner after diagnosis.  In 2002, there were very few treatments, and none of them worked for him.

I have other relatives who have battled different cancers.  One of my first appointments post-diagnosis was with the genetic counselor, who mapped out my pedigree, with squares and circles, some filled and some open.  I had genetic testing done for the 17 most common genes known to be linked to breast cancer.  I tested negative for all of them.  The other cases of cancer in my family are varied types.  There's not a definite link between my parents' cancers and mine.  As has been shown, the majority of cancer cannot be traced to genetics. Whether it's just bad luck, or environmental exposures and behavioral choices, lots of people are getting cancer.  But as we are living longer, our ability to screen for things like cancer is improving, and best of all, more people are living--and living longer--after diagnosis.  I try not to think about what that means if my dad (or my mom) had been diagnosed even a few years later.  What it DOES mean is that there's not necessarily a "legacy of cancer"--at least not genetically.  It is good to know about screenings and things to watch for, but that's something that everyone should do, regardless of family history.  The American Cancer Society no longer recommends breast self exams, but they DO recommend being familiar with your own breasts, so that you know if something changes.  I think that's true about your body in general.  YOU know your body best and if something seems off, find out why.  

The one thing I will take from my mom's cancer story is how she broke the odds.  Time and time again, her doctors and nurses would tell her how tough she was.  She was a role model to me for not listening to the statistics.  It's tough, but in the end, even the best statistical predictions have only a 99% confidence interval.  That's plenty of room for exceptions.  :)

Herceptin (check)

Today I had my final (fingers crossed) Herceptin.  The last time I will be looking out these huge windows while having (life saving) poison pumped into me (fingers crossed).

Trusty infusion pump

Greg and I went out for breakfast and then he came to my appointment with Dr. Shah.

Almost last port access before it's gone

And then I had enough time to finish (and bind off) my bright pink shrug that I started so many months ago, also in the infusion chair.

It definitely needs blocking!

So a bit of catch-up since last time I posted (March 5th):

My MUGA scan came back at a good level.  The MUGA checks if the heart's ventricles are pumping at a correct level.  It's measured in percentages, and a score of 50% or higher is considered normal.  My score this time around was 61%.  The other scores, were 62% (pre-chemo), 56% (post-chemo, but mid-Herceptin), and 68% post-post chemo and mid-Herceptin.  Dr. Shah won't continue to monitor my heart, as she's very pleased with my numbers.

I had an appointment with my new GYN (my former one retired and I hadn't seen one for almost two years--which was when I was diagnosed with Endometriosis and put on birth control pills (which still make me wonder if that kicked my ER+ tumor into high gear, but I digress).  My GYN looked at my hormone levels and was pretty convinced that I am in menopause.  She supports the switch from Tamoxifen to Aromatase Inhibitors, but respects Dr. Shah's desire to re-test before switching me.  I don't have to be watched any more closely by the GYN due to the increased risk of endometrial cancer (unless I have symptoms), so that was nice to know.  Trying to decrease those visits any way I can--current count is 129 appointments related to my breast cancer diagnosis.

I met with my plastic surgeon and got the OK for my final (reconstruction) surgery.  It's scheduled for June 28th at 7:30 am.  It should last about 4 hours, then I'll be in recovery for about 2 hours and be able to go home (hooray!).  I will have surgical drains again (ugh!), but only two this time.  And I'm supposed to take 2 weeks off of work.  When pressured, Dr. Sterkin said maybe I could return earlier, but not until the drains are gone.  I have only (this month) earned sick leave at the rate of one day a month, and I've been withdrawing time for doctor appointments already, so I'm still a little down about having to use vacation time to sit home recovering from surgery.  Adding insult to injury, my surgery is scheduled for the day before Summerfest begins, so my plan to "do Summerfest" is dashed.  <whine, whine, whine>  On the other hand, the cool things about my surgery include not only getting rid of the uncomfortable saline-filled expanders, but also getting rid of my port-a-cath, and having my new breasts "rounded out" with fat lipo-suctioned from my belly!  (silver linings...)  I did check with Dr. Shah today, and while there is a (debatable) risk with procedures done to the arm after lymph nodes are removed, that doesn't apply to the chest.  What does that mean?  I'm clear to get tattoos after my reconstruction!

I spent a lot of time today talking to Dr. Shah about next steps.  In cancer circles, they call this phase "Survivorship."  It's common to experience changes physically, socially and emotionally.  It's common to fall into a depression of sorts when active treatment stops. Given my history of depression, I'm acutely aware of this possibility.  I definitely know that there is a chance of recurrence.  I am trying to decrease my fears of recurrence, and part of that was talking to Dr. Shah about what to do if it does come back.  My follow-up with her will begin in 2 months, including bloodwork and a clinical breast exam.  If all looks good, my appointments will gradually spread out (3 months, 4 months, 6 months...).  My greatest fear has centered around the fact that my tumors were highly Her2+.  That indicates an aggressive tumor with high chance of recurrence.  But if it does come back, I could go back on Herceptin (which I tolerated well), and there are other therapies that are being developed, targeted at Her2+ cancers.  Dr. Shah shared that she has one patient who's on her third year of Herceptin, post recurrence.  So there are options.

When I first sat down with Dr. Shah to discuss my treatment options back in February of 2015, she shared statistics with me about how likely it is to remain alive and cancer-free, depending on which treatments you chose (given my particular characteristics).  I remember barely listening at the time and just being determined to do everything possible to fight, even if it only increased my chances of survival a few percentage points.  I found that chart this last weekend, and then went to the website where (I think) she got the data from.  It's called Cancermath.net.  Now that I've already survived beyond that time of decisions, my numbers have improved!  :)  So for those who like stats, here's my survival curve, using the specifics of my tumor and the treatments I've done:

I like stats, and those are pretty good odds of survival for many years, in my opinion.  It cuts my remaining time approximately in half, but as I remember distinctly getting my diagnosis and not knowing if I had even a year left, these numbers are actually quite comforting.  I am planning to refer to them when I have my inevitable dip into fears of recurrence.

It was kind of sad to say goodbye to the nurses, MAs, and receptionists today.  I know I'll see some of them on and off for many years yet, but I don't plan to sit in the infusion chairs in the chemo bay for a long time (if ever again).  Today, for the first time in all my chemo/infusion appointments, a patient sitting next to me was ill--vomiting throughout his treatment.  It filled me with an overwhelming desire to bolt, but it also made me realize how truly fortunate I have been.  I have had so many visits and treatments and things done to me, and I have had side effects, and likely will always have some of them that remain.  But in the scheme of things, my treatments have been very well tolerated.  My side effects are annoying, and they linger (I'm talking to you, damn neuropathy!), but I've made it through the active treatments and I feel unbelievably lucky.  I've put up with things I never thought I'd be able to do (like a 45 minute MRI), and I've learned a lot.  I've learned about cancer, immunity, the nervous system, heart function, and hormones--and I've learned that I have the most amazing family and friends in the world.  Thank you all for reading, writing, texting, and hugging me.  I could not have done it without you.

Keep on keeping on

I know it's been a long time since I've blogged here, as a few of you have asked me when my next post will be.  I've composed a few little posts in my head over the last 6 weeks, but not really felt any of them were important enough to share.  But now there's a lot of little things.  

So this week marks a year since I started chemo.  It was strange to sit in the Cancer Center for my Herceptin infusion this week and think about that.  On one hand, it's been one looooong year.  On the other hand, it's only been a year since meeting all the oncology nurses and aides, and really getting to know them all so well (when you see them at least every three weeks, and as frequently as 2x/week, they become a big part of your life!).  

I had my third-to-last Herceptin this week on Wednesday.  If all goes well, my final infusion will be on April 13th.  I asked Dr. Shah if I could make an appointment with Dr. Lal on April 14th to pull out my port-a-cath and she laughed and told me she really prefers for her patients to keep them in for a year after treatment concludes (she didn't add the unspoken "just in case..." but I heard it anyway).  She said that she understood my desire to get rid of it, and if I really wanted to, I could get it taken out, but she recommended I see if Dr. Sterkin (the plastic surgeon) could just pull it out when he finished the reconstruction this Spring/Summer.  I have an appointment with him on March 21st, so I'll ask then.  

Several of my BC survivor friends are on aromatase inhibitors (Arimidex is most common) instead of Tamoxifen, as the early studies show that it is more effective, and without as many dangerous side-effects.  Tamoxifen can be used whether you're pre- or post-menopausal, but if you're still pre-menopausal, you can be given Lupron injections to essentially shut down your ovaries since Arimidex only blocks estrogen from non-ovary sources.  Dr. Shah and I had talked about me switching after about 2 years of being on Tamoxifen--to insure I'd gone through menopause and therefore wouldn't need the Lupron shots.  The more I've read about the aromatase inhibitors, the more I think it makes sense to get on them ASAP.  Studies have shown significant reduction of breast cancer recurrence in using them over using Tamoxifen, if you have cancer that's responsive to chemotherapy (If you don't need chemo, Tamoxifen is just as effective).  This is especially true in the first year (RR: 0.64 (0.52-0.78)) as well as in years 2-4 (RR: 0.80 (0.68-0.93)).  Furthermore, ten year mortality was also significantly lower with aromatase inhibitors (RR: 0.85 (0.75-0.96)).  All relative risks included for my Public Health friends.  :)  In addition, the already-known benefit of aromatase inhibitors is the decrease in endometrial cancers (RR: 0.33), though there is an increase in bone fractures over Tamoxifen use (RR: 1.42).

So I talked a bit more to Dr. Shah about it and since I will be 1 year LMP this month, she suggested they check my hormone levels to see if I'd gone through menopause on my own. She said that sometimes chemo causes reversible menopause, so she would want to re-check them in three months, but that almost gets me through the protection of Herceptin, so I feel okay about that.  I haven't talked to her yet, but I did get my hormone level results and they're pretty supportive of me having truly becoming menopausal:

FSH: 82.5 mIU/mL  (25.8 - 134 is indicative of being menopausal)
LH:  39.0 mIU/ml (pre-menopausal is 5-25; menopausal is 14.2-52.3)
Estradiol:  <5.0 pg/mL (pre-menopausal is 30-400; menopausal is 0-30)

I won't see Dr. Shah again until my last Herceptin (6 weeks), so I'm sure we'll discuss the plan at that point.  

As long as they were doing blood tests, she ran a CBC again.  Almost all my levels were good except for the platelets, of course.  They were 76 thou/mCL.  My hemoglobin is still low (11.7 gm/dL), but relatively high for me!  

Dr. Shah also scheduled me for my final (?) MUGA heart scan.  That's scheduled for the 21st.  Hopefully my score continues to climb and any potential heart damage from the chemo was reversed.

This week was also exciting because I was (again--third time's a charm?) discharged from OT.  As lovely as it has been to get a massage every week, I'm pretty happy to not have to make another trip to Water Tower Medical Commons.  I hit a kind of low point in February when the unfairness of having to use vacation time for my doctor appointments hit me (I don't have any sick leave yet).  In Grad School, I had tremendous guilt about taking any time off, so I'd planned to actually take a vacation after graduation, and then recovery was much rougher than I thought it would be, so very little fun was had.  Now I have a full-time job with paid vacation and I didn't plan to use it to attend medical appointments!  I shouldn't complain, because on the other hand, I *have* vacation time, so I can still be paid while seeing the doctor, the dentist, the OT, etc.  Many others do not.  I will finally have earned that sick leave about the time my appointments switch over to "infrequent."  Here's hoping I get to bank almost all of that earned sick leave.  :)

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I have to admit that my goal of increasing exercise has not come to fruition.  Even yoga hasn't happened, although much of that is because things keep popping up on Wednesdays.  I am telling myself that as the days get longer and warmer, I will be more inclined to exercise outdoors (I already know I hate indoor stuff).

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The rest of my time has been spent on something terribly exciting: remodeling the house!  When we moved in about 15 years ago, there were several things we wanted to change.  We then switched into more of the crisis reaction--replacing things as they broke and had to be fixed.  Now that we're in more of a normal routine (that is, two incomes, healthy :)), we started to look at some things we could do to fix up the house.  Fortuitously, interest rates are crazy low now, so we're refinancing and taking out money to re-do a bunch of stuff all at once.  I'm blogging about it (very simply--mostly just photos) at http://unpinkening.blogspot.com.

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Other than that, we've been having lots of fun.  Cara was home all January and then came back last weekend to see Travis in the HS production of Grease!  It's my favorite musical and it's a FABULOUS production.  I've gone four times.

This week Mira starts practice for the Middle School Musical--Shrek.  I love our school district and all that they do.

And it's March.  That's almost Spring, right?  

12 of 12

OMG.  I. am. done. with. chemo.  Final paper chain link shredded (literally--I ripped it, then Greg shredded it into confetti and threw it over my head ;))

It's still kind of sinking in.  And most of the day was just me smiling.  And people smiling at me.  Friends texting smiley faces.  Doctors and nurses coming by "to see your done-with-chemo-smile".  It was awesome.

Greg was with for my first chemo, and he was with for my last.

My labs were a little iffy, and the automatic counter was down, so we had to wait (and wait...) for the neutrophil count to be done by hand.  Turned out I was okay, though, and cleared for the last one.

Platelets: 91 thou/mcL 

WBC: 2.6 thou/mcL
Abs. neut: 1.8 thou/mcL
Hemoglobin 10.0 gm/dL 

My survivor friend Lisa brought a beautiful aloe vera plant to the Cancer Center and it was waiting for me when I arrived.  What an awesome surprise!  One of my favorite nurses, Sam, couldn't wait to tell me that someone had brought me a present.  Perfect timing as I'll be starting radiation soon.

This morning I met (for the third time) with the radiation oncologist to discuss the plan for radiation.  I have my pre-radiation simulation meeting set for two weeks from now (7/29).  That's when I get a CT scan to map out exactly where the radiation will go.  I'll also get my first-ever tattoos (nothing fun--just the dots to line up the machine) and have a mold made to hold me in the same, correct location each time I have radiation.  If I feel up to it, I'll start radiation the next Wednesday, which means I could theoretically be done with it all on 9/11/15.  Fingers crossed!

I actually lost about half a pound since last week, but read this depressing article today: 
breast-cancer-survivors-gain-more-weight-study-finds

It's not going to stop me from trying to take off the 32 lbs. total that I gained throughout chemotherapy.  I walked two miles on Sunday and again on Tuesday, which really isn't much, except that I hadn't been able to walk even a mile the last few weeks.  The neuropathy is annoying, and I can't start running (yet), but I'm going to do my best to get walking in.  I'm also hoping that my taste buds bounce back soon and I stop craving carbs so much. 

I'm tempted to start going hat-less.  My hair is coming in, though it's certainly very short and mostly blond (gray?).  The oncology nurses said that in about a month, it'll fill in very quickly.  I'm just so sick of scarves and hats and wigs and when my eyebrows and eyelashes left, I stopped caring much about my appearance.  Still considering...

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I finished the Noro sweater.  Here's a picture of it before blocking:

I've started another pair of socks, but the blurry eyes are cutting down on my knitting time.

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I want to finish by thanking all of you.  I know I'll say it again, but I cannot tell you how much all of your emails, "likes", FB messages, texts, cards, hugs, and warm thoughts (I feel them!) have meant to me.  I promise to pay it all forward as it has all made this journey for me feel like I'm not doing it alone.  Xoxoxo

Ways to support cancer research (money not required)

I won't get into the politics surrounding Susan Komen and all the Breast Cancer Awareness campaigns, as there is plenty to read and make your own decisions about. And there is no doubt that because breast cancer is one of the "sexy" cancers, it draws a lot of donation money, and therefore is relatively well-funded in terms of research.  While doing Scientific research for my own PhD, one of the areas our lab focused on was cancer research, and I saw first-hand how difficult it is to obtain government funding for this very important job.  The best thing that I think people who want to help "find a cure for cancer" can do is to make their voice heard by the government when funding decisions are made.  

The National Institutes of Health (NIH) is the largest source of funding for medical research in the world.  But since 2010, Federal funding of the NIH has decreased.  Adding in the impact of inflation, the NIH director Francis Collins says that, "The NIH once funded one in three research proposals. For the past 10 years, NIH has had enough to fund only one in six, although the quality of the research is as high as ever."  Please, please, contact your elected officials and let them know how important you think research funding is.  And if you don't know who your elected officials, are, click here for just one online source.  Input your zip code and it returns information and links to webpages and emails for all your representatives.

Unfortunately, government funding is not enough.  There are undoubtedly many noble cancer support groups that do things right--which I would define as putting money into actual research and not just awareness.  I will mention two here.

The first is a breast cancer-specific one that I joined years ago--the Dr. Susan Love Research Foundation.   If you join the Army of Women, you can fill out forms to be an actual research participant--whether you have/had breast cancer, or want to serve as a control (w/o breast cancer).  You can do this with no financial investment (although they also take donations).  And you can fill out as many surveys to qualify as you have time.  One of the neatest projects they are working on is the Health of Women Study.  Contrary to the name, they're looking for men (with and w/o breast cancer) as well as women.  This is near and dear to me because the description reads, "The majority of women who get breast cancer have none of the known clinical risk factors. This means we don’t know what causes breast cancer or how to prevent it. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer.  We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes.  Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It’s that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer."

The other organization that I think does great things is the American Cancer Society.  In addition to funding cancer research, ACS supports patients and survivors in numerous ways.  I have seen firsthand many of the things that ACS does for survivors.  My first medical appointment following my diagnosis included a visit from an ACS Navigator who shared with me things that ACS provides, including rides to and from treatment if you don't have that support, the Look Good, Feel Better program, which I will be attending next month, and much evidence-based support and information.  Cara is doing the ACS's "Relay for Life" at Hamline University this year.  If you are considering donating to the ACS, please use this link to give directly to Cara's team.  You can even purchase a personalized luminaria in honor or in memory of a loved one who has had cancer.

I have benefitted greatly from research done before my diagnosis in 2014.  My hope is to continue to support research so that my children (and their peers) don't have to worry about cancer.