Bye, 2015!

The latest...

BC medication -- No side effects yet. Of course, it's only been about 2 weeks.

Derm update -- Both biopsies were just mildly atypical with clear margins. Stevie took my stitches out last week. No further treatment.

Next appointments are all on Jan. 5th --

Sarcoma:
MRI of knee
CT of chest
Doctor(s) visit

BC:
Lupron injection #2
Blood labs
Doctor(s) visit

Last post of the year... All is well... Happy holidays!

Medication

Quick update, as I am exhausted...

1) Post-op was flawless. Green light to work out!
2) Derm visit went as expected... just had two planned biopsies. Results & sutures out in 10 days (just via phone call / Stevie can remove stitches).
3) Medication (for breast cancer) discussion was a bit more involved...

Tamoxifen is totally off the table. Because it acts as an estrogen in the uterus and could possibly stimulate new fibroids, my medical oncologist feels that it's not the best option for me. Luckily, there is another route I can take... thanks to THIS study that was recently published.

So, I am going to be taking an aromatase inhibitor (a daily pill that lowers estrogen levels by stopping an enzyme in fat tissue) plus monthly ovarian suppression injections (my ovaries will go to sleep and stop producing estrogen). This will throw me into temporary, chemical menopause (hot flashes, night sweats, and more)... plus I may experience fun side-effects like joint pain and bone loss. Learn more about aromatase inhibitors HERE and ovarian suppression HERE.

I had my first injection today... and start my oral meds tomorrow. And still, I must be on these medications for two years before we can think about fertility.

Upcoming appointments

Mon, Dec 7th -- 3 month skin check with 2 planned biopsies.
Tues, Dec 8th -- post-op and Tamoxifen discussion.

No, I still haven't started Tamoxifen. Here is my conundrum... The drug acts as an anti-estrogen in breast tissue, but it acts like an estrogen in the uterus. Endometrial and uterine cancer are potential side effects. I have already had two open myomectomies for uterine fibroids -- miserable surgeries. I am a little afraid the drug will cause me another growth or worse. Plus, my grandmother actually had uterine cancer. HOWEVER, this drug is key to reducing my risk of bc recurrence. So, right now I am trying to figure out which risk I want to take... and I am running out of time! Feels like a lose-lose.

-----

YEAR IN REVIEW:
2 cancer diagnoses 
1 troublesome fibroid
58 doses of radiation
7 radiation tattoos :)
5 operations with general anesthesia
8 nights in the hospital
3 trips to the ER
countless biopsies
countless imaging
countless blood labs & injections
countless tedious appointments
countless scars on my body
countless hours of frustration, pain, worry
countless drives to Seattle and back
and many, many, MANY dollars spent

2016... I see you!

Biopsy... cancelled!!

My knee MRI showed some edema with a foci of fat necrosis... a benign condition that can occur after trauma! I'm healthy! YAY!

Imaging & biopsy schedule

I will have a knee MRI on Wednesday (11/18) and a biopsy on Friday (11/20). Why they can't do this all in one day is beyond me. I was originally told that a radiologist would read my MRI results on the spot so that a biopsy could be performed right away... then they decided nah. So now I get to drive to Seattle & back twice in one week! At least I can count on some Ranch House BBQ.

The saga continues

^^ That is literally what my sarcoma surgeon said to me when he walked into the room on Tuesday.

I have two new lumps next to the scar on the inside of my knee. We don't know what they are. It's impossible to speculate just by feeling them. They definitely appeared out of nowhere, are gradually getting bigger, mostly painless, and very firm. They're close together, but I can't tell if they are connected.

I went back to SCCA on Tues 11/10 and my doctor said the lumps seem a bit too focal to be scar tissue, but they don't necessarily feel like obvious tumors. So, he ordered me a knee MRI and fine needle biopsy. I am just waiting for the scheduler to call me to set up those appointments.

I emailed my doctor and asked him if they could be signs of pes anserine bursitis (a condition that has appeared on my past MRI's) and he wrote me the following:

---

Hi Blair
You’re correct, the location makes sense.  I don’t think those lumps are typical of bursitis, particularly given the number of tumors that have grown over the past year.  I think that it’s best to do the imaging and biopsy we discussed in clinic.  If that shows bursitis that would be fantastic.

Darin

---

Hopefully I will have an answer in the next couple of weeks. Everything takes SOOOOOOO LONG.

I am home

My doctor gave me the GREAT news before I was discharged this morning... it was just a fibroid!!!

Post-op in 6 weeks. 

Woohoo!!!

Hospital life

This has been one of the toughest weeks of my entire year. I know that is saying a lot. But I'm about to spend my 6th night in the hospital after a routine open myomectomy that should have seen me home days ago. I've had some complications throughout my recovery that has kept my team of doctors on their toes.  I won't go into detail, but I think we've got things nearly resolved... as long as I am presenting well clinically, we will probably head home in the morning. The surgical part of my recovery is going well... the incision looks great and the fibroid was removed w/o issue. It was 10cm!!! It grew another 3cm since September... damn! The pathology should be available by Friday.

Sarcoma follow up was great, too. Clear scan.

Time for healing...

Surgery week

That was a fast month... the longest stretch I've gone without a doctor visit since August 2014 when I had pneumonia... knee stuff began September 2014 and it's been a whirlwind ever since.

Back to the grind... on Tuesday (10/20) I have my 6th month sarcoma follow-up (plus chest X-ray) and fibroid surgery pre-op (plus blood work).

Wednesday, I get to relax...

Thursday (10/22) is surgery day. It will be my 4th surgery in 2015... 5th in the span of a year. Like I've said before, the recovery from a myomectomy is a lot like a c-section and I expect to feel like myself in a month. Why am I having this fibroid removed when it's a benign condition that is causing me zero side effects? A few reasons...

1) It's growing. Rapidly. It increased from 4cm to 7cm over the summer.
2) Because I have a history of sarcoma, they MUST rule out uterine sarcoma (an extremely RARE cancer BTW). The only way to do that is through surgical pathology.
3) It would impede fertility.

Once I'm healed up, I will restart Tamoxifen.

All done

I'm done with breast cancer radiation! I am a little pink... but it will fade over the next few weeks. It's time to resume normal life!

Dressing room selfie on my last day! 

One final dose!

A couple of my amazing radiation therapists.

Oh and here's a little peek at how my leg is healing up. Looks a lot better... if you can believe it! 

Epic battle wound.

Next steps...

Sarcoma 3 month surveillance / chest X-ray: October 20th

Fibroid pre-op visit: October 20th

Fibroid removal surgery: October 22nd (recovery is similar to a c-section)

Breast cancer surveillance / re-start Tamoxifen: TBD after fibroid surgery

Dermatology: December 7th

Mammogram: March 2016

As you can see... I am only being seen for follow-ups and prevention going forward! I have completed all active treatment and there is no known cancer in my body. Woohoo!

Day 25

I'm currently sitting in the waiting room before my 25th and final whole breast radiation treatment. No, I'm not done... I still have those 8 boosts. But today is my last "breath hold" and the last time my raw, peeling armpit will have to endure the blast. My side effects are still relatively minimal. A bit of fatigue & a lot of redness (my armpit is the worst). Not a whole lot more to report, as treatment is very tedious. As they say... same shit, different day.

I would be more excited about radiation ending soon if I didn't have major abdominal surgery on the horizon. My next appt w/ gyn onc is on 9/8.

Still going to PT for the leg... it's going fine. Only improving.

Had the re-excision on my neck last week (and another biopsy on my back). Stitches come out 9/8.

Womp, womp...

A few pics

I have received 12 doses of radiation therapy. Side effects are still minimal... just some redness like a sunburn. No major fatigue.

Once I reach 25 doses, I'll be having an additional 8 radiation "boosts"... so, 33 total treatments. I was originally only having 5 boosts, but they increased it a couple of days ago.

My doctors took me off Tamoxifen because it was causing too many pelvic symptoms. I will resume the medication after my fibroid surgery.

Step inside the "High Radiation Area"...

External beam radiation machine

They told me to smile!

Getting prepped.

This is the position I hold during rads, only the gown comes off.

Mutilated

Lately I've been feeling a lot of vain sadness over my battle scars. I've had over 50 punch or shave mole biopsies and there are quite a few larger re-excisions on my back, chest & stomach from atypical moles... then there is my 4 inch stomach scar from melanoma, lymph node removal scars under each armpit, part of my left boob is gone, I have a myomectomy/c-section scar, two ugly scars on my face from bad cosmetic mole removals, and don't forget the 9 inch disaster down my left leg. And I am literally probably forgetting some because there are too many to keep track of. I FEEL HIDEOUS. Even the seediest of strip clubs wouldn't hire me. Not that I would ever DO THAT, but that's totally not the point!! I just feel BUTCHERED. So, I was really upset last week when my dermatologist told me I would need yet another re-excision on my neck. The three biopsies I had recently came back normal, mildly atypical (which they ignore), and moderately atypical (which they re-excise to clear margins). I have no choice but to re-excise the third one because it could recur as melanoma. It will just be a 90 minute office procedure, but I just feel like... UGH...... why do I constantly need stuff cut out of me?! Why am I such a defective human being?

Radiation is going fine. I am 3 treatments in and have some mild redness and my nipple feels burned, but no fatigue or systemic side effects have occurred yet. Taking tamoxifen has been uneventful thus far, too. I have been on it for 7 days and still feel normal. I had some tummy discomfort after the first couple of doses, but it didn't last. Onward...

Two down, one to go

My active treatment for sarcoma has come to an end! I am only on surveillance now. My appointment today was great -- my stitches came out and my chest CT was clear. I won't need to visit the sarcoma clinic again for 3 months! Woohoo! They are referring me to a lymphedema specialist to help me combat the swelling. I'm also wearing a new thigh-high compression stocking and it feels great!

Of course, I am right in the middle of active treatment for breast cancer... but I am happy to be able to focus all of my attention on this department now. My dry run for radiation is tomorrow and my first dose is on Thursday. We're in Seattle on weekdays for the next 6 weeks... commuting home to Long Beach on most weekends.

I also had my first dose of Tamoxifen last night. The most common side effect is menopause (temporary of course)... so I may have hot flashes and mood swings to look forward to. But maybe not... we'll see how it goes.

Support

A great read...

Arm's Length: The Distance Between Friendship and Cancer

"Though arm's length may be a safe distance, embracing someone with cancer is far more rewarding in the end. Just think. If it were you whose life just flipped upside down, what kind of friends would you want? ... Be that friend."

If you're reading this, you're probably someone who has offered me great support... and for that I just want to say thanks. I've spent too much time bumming over those who have disappeared and don't check in or understand what I'm going through. I know I just need to change my perspective and be more appreciative of what I have... which is a small yet AMAZING core group of friends and family... and the best husband and baby girl in the world!!! 

Various updates

Skin:

I had 3 biopsies on Mon, 7/20.  Really enjoyed my new dermatologist. She is associated with UW, but has a private practice on Mercer Island. I will go back to her for the results and to have my stitches removed on Thurs, 7/30. She agreed that I need to continue my skin exams every 3 months.

Radiation:

Finally got a phone call from scheduling and I will begin radiation on Wed, 7/29. The first day is a dry run and my first actual dose will be the following day. If all goes well, I will be finished with radiation therapy on approximately 9/10.

Anti-hormone therapy:

My medical oncologist ordered my prescription for Tamoxifen, which I will need to take for 5-10 years. I am supposed to begin taking it immediately, but I am waiting to make sure its okay with my gynecologic oncologist who is following my large fibroid. Tamoxifen can sometimes encourage fibroids to grow and.......

Fibroid:

Due to rapid growth (2cm in the last 3 months), I have to have this fibroid removed in October when I'm all finished with radiation. This will be an abdominal myomectomy -- I had the same surgery back in October 2009 and it's much like a c-section without the reward. I knew this surgery was inevitable, especially if we want to try for another baby someday, but I am bummed it has to happen so soon. It will be my 5th surgery in the span of a year. Maybe it's better to just get everything done now, though. And just a reminder, we cannot try for another baby until I've been on Tamoxifen for 2 years. At that point, it's safe to take a break from the medication and resume taking it after the baby is born.

Next week:

Tuesday -- Sarcoma surveillance (chest CT & checkup -- happens every 3 months)

Wed -- Radiation dry run

Thurs -- First dose of radiation (to continue every weekday for 6 weeks)

Simulation

Today I had my breast radiation simulation (planning session).  Basically, they made a mold of my upper body in the position that I will be in for treatment each day to create an immobilization device. Then they put me through the X-ray machine for pictures of the treatment area. Then I had my pin-mark tattoos done on the edges of the area that will be treated. I have one on each rib cage and two down the center of my chest. That is the short version -- the link above explains it better! It took about an hour.

It takes about a week for my radiation oncologist and dosimetrist to work up my treatment plan. I will be getting a phone call around this time next week with a start date for my 6 weeks of treatment. I am guessing this will kick off sometime during the week of July 20th...?

Finally, I had a left-sided breast cancer... which means that extra special consideration is taken being that my heart (kind of an important organ) is behind the treatment area. It's likely that I will have to hold my breath through each dose of radiation for protection (see link).

So, that's the latest there... but I also met with my sarcoma specialist today for my surgery follow-up. My leg is looking good... it's healing very slowly because it has now been operated on 3x and radiated. It hasn't stopped bleeding yet... but it will in time. The great thing is that it FEELS much better after being irrigated! Full range-of-motion is still nowhere in sight... but I can tell that once the wound heals up, PT is going to be much easier this time around!

I am already coming up on my 3 month sarcoma surveillance, too. On July 28th, I'll have a lung CT (to make sure nothing has spread -- lungs are typically the first place sarcoma would go) and meet with my sarcoma team. These visits will continue for many years...

Oh, and in case anyone forgot that I still have to worry about melanoma... I have a skin check coming up on July 20th. I supposed to be having these every 3 months, but I haven't had one since January! I guess I've been busy???????

Hematoma

Surgery went well... it was over in a flash. Turns out I had a big hematoma (blood clot) under my incision. It was just getting bigger and bigger and would not let me heal. So, they performed an irrigation and debridement and also removed some dead tissue. I have a drain in for a week or so (hoping to have it removed when I'm back in Seattle for my radiation consult next Thursday). I'm on another week of antibiotics to prevent infection while the drain is in place. I'm also in CRAZY pain!!! I can hardly believe the pain. I've barely slept since surgery and I am keeping myself in an oxycodone fog until it calms down a bit. I spoke with a nurse today... apparently this is typical when you operate on an area multiple times. Ouch!!! But, this procedure should help me heal up fast and get back to an active lifestyle as soon as possible. I hope to feel great by the fall! So much for shorts, swimming, biking and many other activities this summer... but next year I'll just appreciate it that much more!

Lounging with my Hemovac drain.

Complications

After 3 trips to the ER over the past month and a visit with my sarcoma surgeon this morning... it has been determined that I need part of my leg incision cleaned out and restitched. I have something going on that is keeping it from healing. Whether that is an infection, abscess, dislodged internal sutures, etc... we don't know. I do know that I am scheduled for surgery on Friday. Yep, general anesthesia in the OR... yet again... and I'll probably have another drain. The only way out of it is if I miraculously heal in the next two days. I am pretty much devastated that I have to go through this. Losing my zest for life!

Left: 7 weeks post-op with random bruising occuring...
Right: One week later with swelling/redness increasing...

When both of your sisters take you to the ER, it becomes a photo shoot.

In other news, my radiation consultation is on Thursday, July 2nd... treatment will start shortly thereafter. My leg situation won't affect this at all... radiation is localized to the breast.

Thanks to the few of you who read and comment... or even better, reach out to me personally. You know who you are and it means a lot to know you care about me.

No chemo!

My Oncotype Score was 15.  That is a nice, low score and I do NOT need chemotherapy!

I should be hearing from the radiation scheduler very soon to set up my final phase of treatment!!  After that, I'll start Tamoxifen and simply be on surveillance (for the rest of my life).

FABULOUS DAY.

Treatment decisions

I had my lumpectomy post-op yesterday. Everything looks great and is healing well. According to pathology, I am Stage 1b, grade 2.

About that positive lymph node... I will NOT have to undergo an axillary lymph node dissection to look for more positive nodes. No more surgery! They used a prediction tool from Sloan Kettering to determine my likelihood of breast cancer spreading beyond the sentinel lymph nodes to additional lymph nodes under the arms. My risk was only 5%!

There is one more hurdle... I am waiting for the results of a test called Oncotype Dx. This test will determine whether or not I will need chemotherapy. I need a low score.

I will be having six weeks of radiation no matter what... but IF I need it, chemo would need to happen first. So, right now we are just waiting to find out.

Micrometastases

Full breast pathology came back yesterday. The good news is that my tumor margins were clear. It was 1.2cm and totally removed.

The not-so-good news is that 1 of the 5 lymph nodes that they tested was positive for 1mm of micrometastases. YES, we originally thought they were negative... but when it's that small, it's hard to detect during surgery. Full pathology tells the whole story.

I only had a quick phone convo with my surgeon, so I'm not totally clear on what this means for my treatment (another surgery to test more nodes? chemo?)... but I have a gut feeling that my treatment will stay the same. She actually said that she didn't think I would need another surgery, but would need to go over this path report with my medical & radiation oncologists first. I have post-op on Thursday and will know more then!

Lumpectomy

I had my lumpectomy and sentinel lymph node biopsy on Monday, June 1st. Today it is still quite swollen, but the pain isn't too bad. I am only taking ibuprofen & Tylenol now. I'm also wearing a surgical bra with a lot of compression to reduce the swelling. I should have pathology back before the end of this week. They were able to test my lymph node during surgery -- it was negative! Big relief.

My leg is still healing at a turtle's pace... It's so tight and my range of motion is JUST over 90 degrees bent. If I walk too far or stand for too long, it swells up like I have elephantitis. It's a very, very frustrating process.

I have pretty much spent the entirety of the last 6 weeks just sitting around healing. I am dying to get back to my normal self. I think many people would be surprised at just how much poking, prodding, probing, imaging, testing, and surgery I've endured this past year. It can be a very lonely process... I think it's easy for people around me to become desensitized to it all. But I feel it all the time.

Upcoming appts in Seattle:
Thurs, June 11 - lumpectomy post-op
Tues, June 23 - sarcoma, regular follow-up
Mon, July 20 - dermatology, regular skin check

My schedule for rads is TBD... likely end of June - early August. I'll know more after my post-op next week.

Seroma update

I went back to the ER on Friday the 22nd and had the seroma drained from my leg -- 16 cc's! It instantly felt better and I have noticed a decrease in swelling. I can *almost* see my ankle bone again.

I met with my surgeon again in Seattle yesterday, just to make sure everything was still healing okay. He said my range of motion -- which is at about 90 degrees bent -- is where he'd expect to see a patient at 3 months out! That was encouraging.

I am still entirely numb along the surgical site and the front of my calf. My incision is fiery red & screams Frankenstein. But, there is no pain and I can walk short distances and sit without elevating. I am improving every day.

My echocardiogram was normal.

Pre-op at the breast clinic tomorrow...

Genetic results

Negative for BRCA 1 & 2... *HUGE SIGH OF RELIEF*

I will proceed with my scheduled lumpectomy on June 1st and six weeks of radiation will follow. Here is a great read that might help explain why I have chosen this treatment plan when it seems like the trend is to opt for a dbl mastectomy "to be safe": Aggressive Treatment Does Not Mean Better Treatment.

Back to my genetic results. I was tested for 29 different gene mutations and all but one was negative. One gene, PALB2 came back as a "variant of uncertain significance" -- but that just means it's neither negative nor positive. There might be something going on... there might not be. PALB2 is associated with breast, ovarian, & pancreatic cancer. It wouldn't explain my sarcoma or melanoma at all... but could be associated with my IDC? Hopefully not, but there is really no way of knowing right now.

Here is what current research says about this particular finding:

If your patient’s result is “Genetic Variant of Uncertain Significance” in PALB2 it means that a change, or alteration, was detected in the gene but it is not known if this change confers an increased risk of cancer. Since the clinical significance of the variant has not been determined, cancer risks for an individual found to have a variant of uncertain significance should be estimated based on his/her personal and family history of cancer. The individual’s cancer risks could be increased due to 1) other non-hereditary factors (e.g. environment and/or lifestyle), 2) other genes, or 3) a mutation in PALB2 that current technology cannot detect.

Pathology and more

Sarcoma:

Had a good post-op appt on 5/12. My pathology report was clean.

FINAL DIAGNOSIS:

A) Sarcoma left knee, excision:

· RESIDUAL low-grade spindle cell sarcoma with 

myofibroblastic differentiation.

· Residual sarcoma size: 0.4 cm in greatest 

dimension.

· Margins are free of sarcoma; residual sarcoma 

measures 0.5 cm from the deep margin (composed of 

normal tissue/fascia).

Sutures are out... brace is off... scar is hideous... recovery is slow.

I started PT on 5/15 and my range of motion is VERY SLOWLY increasing. It could take about a month to regain full ROM. Too much activity causes extreme swelling, so I am still doing a lot of resting & elevation.

I've also developed an 8cm seroma (fluid pocket) under my incision, which is also causing a lot of extra swelling. It will probably just be something that reabsorbs over time, but I am waiting on more info from my surgeon. I had an U/S to diagnose the seroma yesterday at my local hospital. I feared it was a blood clot, so I feel relieved to know it isn't!

On Wed, I am having an echocardiogram to check on my heart murmur. This was a recommendation from my most recent anesthesiologist. I had a normal EKG last week, so I don't expect anything to come of this. I've had this heart murmur with no problems since I was a kid.

Breast:

Genetic results should be in within a week... My pre-op for lumpectomy is coming up on 5/28. Surgery is still tentatively scheduled for 6/1. 

Post-op life

Sarcoma surgery:

One week ago, I had a successful excisional biopsy on my leg. Pathology should be in early next week. I stayed in the hospital for two nights (and had many thoughtful visitors!) and spent the rest of the week on my couch. Recovery is slow, but going well. Stevie is highly attentive to my every need (even bandage changes) and my mom rules the roost while he is at work... they are freaking amazing. I am able to hobble around without crutches now, but my leg will remain in an immobilizing brace until May 12th (post-op appt). Oh... and I had my drain removed yesterday!

Some wonderful local friends have been doing a "meal train" for us and we are so very grateful for the support and fabulous food! THANKS!

I woke up like dis. #gotafatlipunderanesthesia

Hot husband caregiver.

Sorry if you're eating.

Wheeling me out of the hospital!

Post-op life with my sweet little one!

Bandaid sticker <3

Breast stuff:

I also met with my genetic counselor yesterday. I had blood drawn and will be tested for 29 different gene mutations by Gene Dx. This is a different lab than we used last time and this comprehensive cancer panel will even retest me for Li Fraumeni. Results in 3-4 weeks.

I also have a tentative lumpectomy scheduled for June 1st... assuming these genetic results are back (and negative) and there are no changes to my treatment. We'll see...

The struggle is real

There is no doubt I have a long, tedious road ahead of me... but the good thing is, it's a hopeful one.

Breast cancer update...

I finally visited the breast clinic on 4/21 and was given formal recommendations & options for treatment. I met three new doctors and I will break down what each of them said (in a nutshell, of course... I spent about an hour with each of them).

Surgical oncologist: This doctor recommended a lumpectomy and said that it would be a simple outpatient operation. The sentinel lymph node from under my left arm will also be tested (just like I went through with melanoma on the right side). Recovery time is only about a week and I shouldn't notice any significant physical changes/disfigurement.

Radiation oncologist: Approximately 2 weeks following surgery, this doctor recommends 6 weeks (30 doses) of radiation. This means another (longer) stay in $eattle. Be careful what you wish for, people!!!

Medical oncologist: After radiation, this doctor will start me on Tamoxifen -- a daily pill that blocks estrogen for hormone-receptor positive breast cancers (like mine). I will be on this drug for 5-10 years. If I wish to have another baby, they will actually allow me to stop taking it and then restart after the baby is born or done breastfeeding (if I'm able). We cannot attempt this until I've been taking Tamoxifen for two years... but we were prepared to be told it was completely off the table, so this is a major win in our book.

OF COURSE there is a BUT.

I have to meet with my genetic counselor again to undergo a panel of genetic testing -- including BRCA aka the Angelina Jolie gene mutation -- before we can confidently proceed with the above plan. If I am BRCA positive, which is highly unlikely given that there is NO breast or ovarian cancer in my family to speak of, than a new treatment plan may be formulated. I meet with genetics on Thursday 4/30 and the results will probably take about a month (it's an extensive panel).

So... it's unlikely I'll have any further updates or actual treatment for breast cancer until the end of May. My doctors have assured me that it's a slow growing, small, totally treatable cancer and it's okay if we take this time to make a well-informed decision. It's weird because I can feel it and I just want it out now!

Sarcoma update:

Meanwhile, I'm having surgery on my leg tomorrow. I check in at 5:45am for an 8am procedure. I'll be in the hospital overnight and my unbelievably supportive & fabulous husband will be with me every step of the way... as always. #shoutout

I'll let you know how it goes!

New scans

New imaging to report on...

Breast MRI 4/9:
The mass is actually 11mm (1.1cm), but no lymphadenopathy or multifocal/multicentric disease is present.  In other words... it's slightly bigger, but it doesn't appear to have spread to the lymph system and there is only one tumor.

Chest CT (to check on my lungs) & leg MRI 4/14:
No changes since prior scans in Dec 2014. Yay!

The latest...

Had my pre-op visit with my sarcoma surgeon on 4/14. No changes! I am still having surgery on 4/24. The breast "issue" will be dealt with separately and I still won't have a treatment plan until I visit the breast clinic on 4/21. My first appointment will be an all day event.

Basically, as soon as I beat sarcoma... I will be tackling breast cancer. Stay tuned...

Immunohistochemical results

Here are some additional details, copied & pasted from my path report...

---

Invasive ductal carcinoma with the following immunohistochemical features:
1. Positive for estrogen and progesterone receptor expression (Allred 8 and 7 of 8 respectively).
2. Negative for HER2 protein overexpression by immunohistochemical technique (1+).
3. Ki67 proliferative index: Approximately 5% of nuclei strongly positive.
4. Immunohistochemistry for D2-40 highlights angiolymphatic spaces with no neoplasm identified, supporting an interpretation of no angiolymphatic space invasion identified.

Breast cancer

I am just going to be matter-of-fact here...

Got the call this morning. It's invasive ductal carcinoma, grade 1 (low grade or well differentiated)... less than 1cm... slow growing... and highly curable.

I have a breast MRI on Friday the 10th and I will have an orientation of sorts at the SCCA breast cancer clinic on the 21st. I have no details about my treatment plan at this time.

My sarcoma surgery is in 2.5 weeks and I also have no idea how this new hurdle is going to mesh. I don't know if they can be combined into one procedure... or if one will take precedence over the other... I have a lot to learn & absorb over the next few weeks. More later...

Core needle biopsy

SCCA agreed with my local hospital... the lesion is suspicious... however, they downgraded it to a BI-RADS 4! That is slightly encouraging.

I went up to Seattle yesterday and had an ultrasound-guided core needle biopsy and post-biopsy mammogram. The biopsy site is only mildly tender. Not the worst procedure I've gone through. No shower for 24 hours and steri-strips can come off in 5 days.

I should have results by early next week. I am preparing for the worst, but hoping for the best! Waiting is the hardest part. I hate where my mind takes me... staying positive and hopeful can be really hard.

Just my luck

While I was finishing radiation, I read the book "Before I Go" by Colleen Oakley. It prompted me to perform a very thorough self breast exam on 3/11. Being that I am a medical freak show, I found a small lump.

On 3/24, I had an U/S and mammogram at my local hospital. The results came back as an irregular 9mm solid mass with spiculated margins, BI-RADS category 5. I had the imaging sent to my cancer care team in Seattle and am waiting on their evaluation, but it seems that a core needle biopsy to diagnose the lesion is pretty much a given. Again, I play the waiting game.

All done

I finished radiation yesterday! Still no major side effects. Leg is slightly weak though... and mildly red. I would call it a huge success! Here I am ringing the gong:

After rads

I met w/ my surgeon this morning. We discussed what comes next, including pre-op, surgery, post-op, and future follow-ups.

Pre-op: Tuesday, April 14th
Paperwork, knee MRI, chest CT

Surgery: Friday, April 24th
The objective is to remove the tissue surrounding my previous excision where the margins tested positive. This, combined with the radiation therapy, is the best way to keep the cancer from ever growing back or reappearing somewhere else in my body. I'll spend the night in the hospital and my leg will be in a brace for a few weeks. This is because radiation can slow wound healing, so they don't want me bending my knee for awhile. I'll also have a drain tube.

Post-op: Tentatively Tuesday, May 12th
Hopefully this is when I will lose the stitches, drain and brace... but it depends on my healing progress.

Follow-ups:
Years 1-3 -- Physical exam & scan every 3 months (alternating chest CT & xray)
Years 4-5 -- Physical exam & scan every 6 months
Years 6-10 -- Annual physical exam & scan
I hope to combine my melanoma follow-ups with this schedule.

Only 3 more rads. Still no major side effects. Back to LB in about a week...

Over the hump

I'm suddenly 15 treatments in... 10 remaining. Time seems to be flying because I am LOVING LIFE back in the city. I start every morning at Pure Barre and I believe it has physically AND emotionally helped me get through this. I am so into it that I seriously wish I had a spare 100g's to open my own franchise. I honestly haven't been so passionate about something in... I can't even recall. My goal has been to hit the barre every single day of treatment... a fun personal challenge. I have also taken on the studio challenge of 20 consecutive days in a row... only 4 more to go! Anyway... what is this post about again?

Radiation side effects are minimal... really just fatigue. At this point, I have not had any more nausea or any of the local side effects (redness, burning/stinging, or soreness) that I was warned about. I'm definitely not out of the woods yet... most side effects appear toward the end of treatment.

I have been exhausted on and off... some days I feel ready for bed at 6pm... other days I feel fine. I somehow caught a gnarly cold and have been battling that on top of everything... it's been lingering for almost a week now.

Next week I will meet with my surgeon to plan the next steps. I know I am looking at an overnight surgery sometime in April, but it will be nice to have everything scheduled... with a real end in sight!

First week

Well, we're finally underway. I've had three radiation treatments thus far. Monday was just a dry run and I got tattooed (tiny dots to precisely pinpoint the treatment area) in three places.

Tuesday was my first official dose of radiation and I immediately felt mildly nauseous / exhausted and napped for two hours. The entire appointment is less than 10 minutes start to finish... the radiation itself is under a minute. All I have to do is change into a gown, lay down on the table with my leg in a special mold and hold still for a quick treatment. It feels like mild static electricity, if anything.

Wednesday was totally uneventful physically, but the machines were running an hour behind so it was a longer day. Today was my third treatment and I was very nauseous afterward. I again slept it off and feel fine this afternoon. 3 down, 22 to go!

In the clear

Skin update: 3 of my biopsies were normal, 3 were abnormal but with clear margins. No further treatment! :)

It's official

Received official word from my genetics counselor that I officially do NOT have Li-Fraumeni Syndrome and we can officially move forward with radiation therapy. This is good news; exactly what we expected/hoped to hear.

My official start date for radiation therapy is Monday, Feb 2.  New estimated completion date is March 10. Surgery will be approx 5 weeks after that.

Feels good to be out of limbo.

The skin-ny

Skin Stuff:

Mon, Jan 19 --
Had my regular skin exam (every 3 months). I had 6 more biopsies (3 back, 2 abdomen, 1 side). They hurt. Healing takes weeks. What a b*tch. Results in about 2 weeks. Keep in mind, my derm removes things that she would probably just choose to "watch and wait" on a normal person. I'm always amazed when she wants to remove something that looks like a ballpoint pen mark to me... but she knows what to look for and her track record is excellent!

Sarcoma Stuff: 

Wed, Jan 21 --
My genetics counselor emailed me and said to expect my long-awaited results by Feb 2... which is not soon enough to begin radiation on the 28th. So, yes, treatment has been postponed again. Been waiting over 6 weeks now. Becoming a joke.

Other Stuff:

Pelvic MRI was good. No worries there; no further discussion here.

Next steps --
Same as my last post, only we don't have a firm start date.

Moving forward

Genetic testing has finally been approved by my insurance. Test results will still take another week or three...

Tues,  Jan 13 --
Met with sarcoma specialist & radiation oncologist. Although we're still waiting -- still waiting!! -- on those genetic test results, we all decided to move ahead with getting me ready to begin radiation. They set me up with a last minute appointment for my verification simulation that same afternoon. I have ink markings all over my leg (covered with tape) and I'm not allowed to wash them off until I go back in 2 weeks. Easier said than done.

Wed, Jan 14 --
Had a pelvic MRI. Will meet with a gynecologic oncologist when I'm up in Seattle in a couple of weeks... unless she urges me to come in sooner. The MRI results should be available to me within 24 hours, but I won't really know what to make of them until I see the doctor.

Next steps --
Radiation therapy (tentatively) begins on Jan 28th. I will be treated 5 days a week for 5 weeks... my estimated completion date is March 6th. Must find a short term furnished rental in Seattle! Surgery will be approximately 3 months from my radiation start date... so I'm looking at the end of April. More details here: Radiation Oncology at UW Medical Center.

Of course, if my genetic testing results are somehow positive, this is all null and void.

Email

Looks like it's gonna be awhile before I get those results... I just got this email from UW Genetics:

-----

Hi Blair-

I am so sorry to keep you in this limbo... but I think you will have to reschedule.  I just called the lab.  They have not yet heard from your insurance company with their decision about authorization.  Because the lab can't start the test until they have authorization, the test will take 2-3 weeks after authorization is given.  The representative I spoke to at the lab said she will call the insurance again and ask if our request can be given priority since you and your doctors are waiting for the results to make treatment decisions.

The lab will contact me when they get the decision from insurance and will likely ask me for permission to start the test.  I will instruct them to start and will contact you so you can schedule your return with Dr. Kim.

Again, I am really sorry about this.  I chose to send your testing to this specific lab because I truly thought we'd have results in 2-3 weeks.  I will remember this for the future and apologize that it has not gone smoothly for you.

Please let me know if you have other questions, but I'll be in touch when I have information.

Best,
Emily

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Stevie spent hours on the phone with Moda until a supervisor of some sort promised to have this resolved within 48 business hours. My docs want me to keep the appointment on 1/13, but I'm not sure what we will be discussing now...

I also heard from the gynecologic oncology department at UW Med. They are collecting all of my records and reviewing them... then they will call me back in the next few days to schedule the appropriate appointment. 

The unknown

Big snafu with my insurance over the holidays...  Authorization for genetic testing was stuck "pending" for 3 weeks.  Should be resolved now, but results are still MIA and my appointment for tomorrow has been rescheduled for 1/13. Makes me wonder how many people in this country do not receive timely treatment and are seriously f*cked over due to medical insurance being such a damn cluster.

In other news, I followed my gut and made an appointment with my gynecologist regarding 1) abnormal uptake in my uterus on my last PET scan and 2) a 6.5cm presumed leiomyoma (common benign uterine fibroid) found on a corresponding ultrasound.

PET results:  Uterine fundal activity is again noted, max SUV 10.1, similar to prior and of unknown clinical significance. Persistent increased uptake of uterus, essentially unchanged from prior. May correspond to leiomyoma seen on prior ultrasound per noted, however this amount of avidity is atypical for leiomyoma. Further evaluation with biopsy vs MRI can be considered.

He reviewed these findings and even compared them to my test results from one year ago. The alleged leiomyoma has grown 2cm and my gynecologist considers that to be rapid growth. Because of this and the continuously high uptake on my PET scans, he wants me to see a gynecologic oncologist. I spoke with SCCA and was referred to someone at UW Medical.  Hopefully I can get in to see her when I'm up there on the 13th.