Befriending Dragons

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Curing Cancer with Donations

It’s natural to want to donate to something, to offer to help “fix things” when someone is sick or injured. But how do you pick who gets your time or money? Do you give to a local charity? One of the big names? Something directly related to and as specific as possible to the illness? Something general? I don’t think there’s any one good answer. Before you donate to anything, check them out on an independent site like Charity Navigator or Charity Watch. Make sure you search on the exact name as there are many look-a-like groups and some of them are completely bogus or donate just a tiny fraction of what they raise to their supposed cause.

KeepCalmAndFightCancer

Since my breast cancer diagnosis a few weeks ago I have relied heavily on a handful of sites. The big medical ones are the Mayo Clinic, American Cancer Society, and the National Cancer Institute. The first two do accept donations. I also got some great BRCA information from FORCE aka Facing Our Risk of Cancer Empowered. Another organization that has been incredibly helpful is Caring Bridge. They allow me to keep everyone updated from a central location. They rely on donations to help power the servers and run their website. From my past political experience (and as a Planned Parenthood Votes Northwest board member) I can highly recommend Planned Parenthood as a group to support in the fight against breast cancer. They provide funding for many women who otherwise wouldn’t be able to get a mammogram or other health screenings. Idaho is dead last in breast cancer screenings so that is clearly an area for improvement here. Again, Planned Parenthood of the Great Northwest can help as they offer funding for Idaho women who need screening.

One group I do NOT directly support is Susan G. Komen. Not only did they recently falsely claim a long disproven link between abortion and breast cancer but they have some questionable practices related to prosecuting other groups that use “for the Cure” in their own fundraising efforts. They did quickly restore their funding to Planned Parenthood but the damage they did with their misinformation is long lasting.

There are other groups out there that aren’t doing research or treatment but that add a lot to the lives of those fighting cancer. For example, there are groups that provide free house cleaning for people going through chemo or other debilitating treatments, free scarves, hats, or wigs for people with hair loss from chemo, and low cost or free get-aways like weekends at a cabin or fishing trips. Many of these groups are too small to be rated by the charity rating organizations so find something local and ask around.

I won’t tell you who to donate to, but I do suggest you do your research and choose something you really care about. It seems likely you’ll have more impact with a donation to a smaller organization. Right now I’m thinking I may be donating more to the groups that provide screening and offer support during and after diagnosis and treatment. You may also want to think about a random act of kindness to someone in need.


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Serenity for Surgery

Surgery. The word seems to terrify a lot of people but I’m fascinated, kind of like River Tam reading Shepherd Book’s book. I tried to get them to agree to take pictures during the procedure but haven’t had any luck with that so far. I asked if I could stay awake and watch but that is apparently not an option either. They tell me there are a mix of privacy, lawsuit, and infection concerns plus they don’t want to distract the surgeon. Sigh. I bet Dr. Simon Tam would take pics during surgery if I asked… at least if I looked like Kaylee or Inara.

Serenity

Friday I am having a lumpectomy, also known as breast conservation surgery. From a clinical perspective they are simply removing what is estimated to be a 1.3cm tumor and 1-2 lymph nodes through a small incision (maybe two incisions) that is expected to heal with little scarring. I expect Dr. Szentes to have the mad piloting skills of Wash and the brash, confident command of Captain Mal as he operates. Or even better, the mechanical skills of Kaylee. It’s outpatient surgery and I will go home within a few hours of the end of surgery. In about 3-5 days I get pathology results back to confirm that they got the entire tumor and that it doesn’t appear to have spread like Jayne on a drunken spree with Vera. Given the early detection, low grade, and small size of the tumor they are pretty confident it hasn’t spread. The bigger concern is whether I get another in the future. My mom had breast cancer twice and the second one killed her. However, treatment in the 1990s when she got sick and treatment and screening now are very different. they will prescribe Tamoxifen and I may take other steps to reduce my estrogen exposure. No matter how my BRCA results turn out (genetic testing is due back around September 13) I will be on an every 6 months screening schedule, alternating MRIs and mammograms, for the foreseeable future. With that level of “enhanced screening” my survival rate from breast cancer is actually higher than the general population, certainly higher than if I ran into a bunch of Reavers. So ladies (and high risk men!) don’t put off your mammograms and get to know your own boobs!

Engineered by Firefly

Everyone else seems more concerned about this surgery than I am. I look at it as an inconvenience that will make me uncomfortable for a few days. I’m grateful they caught the cancer early, it’s non-aggressive, and I have a clear, relatively easy treatment plan. The advances they’ve made in surgery (they take only a small margin around the tumor in most non-aggressive cases) and radiation (very targeted and much less troublesome than chemo) are remarkable. I’ve asked a ton of questions and explored all sorts of options such as new types of genetic testing on tumors (EXON 7 testing for example is too new and unproven and other genetic markers in the tumor would prove the same thing) and bio-preserving my tumor for research (Boise has a bio research facility and it looks likely I will be able to participate). I am very lucky to have a nurse navigator assigned by St. Luke’s to help answer all my questions, track down providers, and help me through any sort of concerns I have. She’s very no-nonsense like Zoe and helpful like Shepherd Book.

In the meantime I am enjoying my birthday (it’s today but I had a fun costume party at my house Sunday night with many great friends) and my vacation (tubing the Boise River, multiple movies, friends visiting from Phoenix, walking the greenbelt, great food and wine). I wish I could visit Jaynestown too but that will have to wait a few hundred years. I’ll take a couple of days off after the surgery; more to make sure I’m relaxed and caught up on personal things than because I expect to truly need it for recovery. It will be about a month or so before I start radiation, then we’ll be on to the enhanced screening and I’ll continue to get on with my life. This surgery and the cancer is just a small bump in the road and I’m looking forward to moving on past it so I can live long and prosper. The future is looking Shiny because no power in the ‘verse can stop me! And I definitely aim to misbehave because you can’t take the sky from me!


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A Boobtastic MRI Experience

Today I had my first ever MRI – in this case a boobtastic MRI. They’re using the MRI to look for blood supplies in both of my breasts. Cancers need a lot of blood to grow and thrive so that’s why MRIs are used in cancer screening – they look for unexpected blood supplies. However, many other things can also cause out of the ordinary blood supplies and many of these are in no way dangerous. This means there’s a high chance of false positives that lead to additional screening such as ultrasounds that focus in on the area with the extra blood supplies. Today’s MRI will help them better estimate the size of the tumor in my left breast to increase the chance they take the optimal amount of tissue during the lumpectomy. They aim to get “clear margins” meaning they remove a bit of non-tumorous tissue around the tumor without missing any of the tumor or taking more tissue than needed. The MRI could also identify other potential “excessive” blood supplies that might need further investigation before surgery. I’m looking at a future screening schedule that includes an MRI every 12 months for the rest of my life since I’m a high risk patient. That will alternate with mammograms so that I have some sort of screening every 6 months. This “enhanced screening” greatly increases survival rates in high risk patients to the point that high risk patients are actually more likely to survive a cancer than someone in the general population who may or may not get screened regularly. So gals – get screened as often as your doctor recommends and get familiar with your own boobs!

Originally my MRI was scheduled for 430p at the downtown Boise St. Luke’s very near my house. However, I got a call around 1130a saying that there were some emergencies that needed the MRI and they could not get me into the Boise location today. Would I be able to arrive at their Meridian hospital by 1230 because they had an opening there? I quickly checked with my chauffeur, Linda Crozier, and verified that yes, this would work. She ditched her husband and their planned movie and picked me up immediately. We were “all the way in Meridian” (those of you in Boise will understand that to mean “almost in a foreign country”) by 1215p. I popped my prescribed anti-anxiety pill as we pulled into the parking lot. If they offer you an anti-anxiety pill when they’re scheduling the appointment then take the pill – why not? They quickly checked us in and I was back in the MRI waiting room within a few minutes. Linda opted to wait in the main waiting room as they wouldn’t let her observe the actual MRI any way.

They let me keep on my metal-free yoga pants and thick, warm socks but had me put on scrubs for a top. They verified yet again that I was wearing no metal, had never had an accident involving metal in my eyes (!), and that the only metal embedded in me was the plate in my left arm (per the tech that isn’t ferrous and can’t cause harm in an MRI) and the clip they inserted in my breast to mark the tumor.

Boob MRI for breast cancer screening

Boob MRI for breast cancer screening

Within a few more minutes I was in the MRI room. That’s when I first saw the pink contraption pictured here. I guess they figure anything breast related must be pink because all women just love pastels and pink in particular… right…. NOT! They had me sit on the side of the table while they inserted a catheter in my arm so they could add some dye later in the process. Then they had me get as comfortable as possible on the boob contraption. The boobs themselves just hung in two holes (labeled conveniently as left boob and right boob in the picture). My head fit in a massage-table-like head rest. My arms were stretched out in front of me. Then they figured out the right combination of blankets and pillows under my rib cage, legs, and feet to make me comfortable enough that I wasn’t likely to squirm and added a blanket on top to keep me warm. If you move during the 20-45 minute MRI they have to redo pictures and stay even longer so comfort is key. They hooked up a line to the catheter in my arm, put some big headphones on me (with music piped in from my iPod), put a call button in my hand (they can’t hear me call out over the loud noises the machine makes), and pushed me back into the MRI machine.

The machine had been making clunking noises of various sorts the whole time, but now the noises became more consistent and louder, though the specific sounds changed quite a bit. The machine is taking many, many pictures, each one of a different 3mm slice of my breasts. I just concentrated on breathing deeply and listening to my music. They had placed a double mirror under the headrest so I could see out the end of the tunnel. I watched that for a while but it was not very interesting – a very narrow view of the room between my fingers. So I closed my eyes and relaxed. After about 10 minutes I heard a voice over the headphones saying they were injecting the dye and I could feel a cold spot in my arm for a few seconds. I have a vague memory of hearing an extra loud noise and jerking at some point. I think the memory was vague because I was asleep…. The tech’s voice came over the headphones saying I had moved so they would have to redo a couple of the pics. I was very relaxed at that point and may have gone back to sleep – it seemed to be over very quickly.

They came in and pushed me out of the tube. They had me sit up and they removed the catheter then said I could leave. I asked if I could grab my phone from the waiting room and take a picture. They said sure. I couldn’t take the phone inside the room but was able to take the pic from the doorway. I said I needed it for my blog and the tech said, yes, people do that all the time. Who knew so many of us thought other people would care about our MRI experiences!

After changing back into my street clothes I collected Linda and we headed back to Boise for a coffee fix at Starbucks. They already have Pumpkin Spice available! We relaxed in the Starbucks for a while then Linda dropped me off and headed out to get back to her day.

It generally takes 24-48 hours for a mammo-radiologist to review and report on the results. I really hope they get to it before the end of the day Friday because they aren’t working on Monday due to the Labor Day holiday. I would really like to have confirmation that the MRI has no surprises so I can plan for a Sept 6 lumpectomy. If the Sept 6 surgery date doesn’t work out we may be back to the original Sept 25 surgery I was hoping for when I was thinking I wanted to wait for my BRCA results (I’ll cover that in a separate blog).

I hope you found my boob’s boobtastic journey through the MRI entertaining and/or educational. 🙂 For anyone trying to calm your nerves before having your own MRI – it was easy! Just make sure you are comfortable, ask tons of questions ahead of time and as they are prepping you for the MRI, and relax.


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Climbing the Tree of Life

Tree of LifeThis week I got news that most will take as bad. But there are some very good things about it. I may have cancer, but it’s a very non-aggressive, easily treatable type. We caught it early and have a solid treatment plan that should completely remove it. There are a few test results we’re waiting on but all-in-all my prognosis is good. What do I do with this new found kick in the pants? Cancer is supposed to be a life changing event that makes you re-evaluate everything and choose new directions. What direction do I want to take? How radical of a change? In what part(s) of my life? Is all this re-evaluating even the right thing to do? It does make me question a lot of things but honestly the biggest thing I want to rush out and do is some of the traveling I’ve been putting off. I want to go to Greece – visit the ancient ruins, sit on the beach, and just relax. I want to start crossing off the remaining US states that I haven’t yet been to – less than half are left but a few I’ve only been to for work or as a kid and I would like to have a “fun” memory of each. I would like to visit most of the continents: Antarctica might just be too cold but the rest all have many interesting possibilities. I want to keep having fun, always learn more, and contribute what I can to society. I am realizing that the details may not matter so much – I just need to keep climbing the tree of life.


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Don’t Be Sorry

Don’t be sorry.TinyDragonOnFingers

There are so many ways to look at that. Don’t be sorry you did something yourself. Don’t feel sorry for someone else. Don’t dwell on the negative…. Right now I just want you to avoid telling me you’re sorry. I want to hear “hey – it’s going to be alright” or “you’re lucky”. Why, you ask?

Well, I was diagnosed on August 19 with breast cancer. We caught it early, it’s non-aggressive, it’s small, and it’s considered very treatable. Don’t feel sorry for me and don’t say you’re sorry. If I’m going to have cancer this is about as good as it gets. Think positive, help me plan for the future, and treat me like normal. And of course indulge my every whim and let me win every argument…. Just kidding. Mostly. Many of you want to help and I do appreciate that. Let me put your offers on hold as I am told help is most needed a few months into the treatment plan.

Thank you for your caring and for your support!

I’ll update my medical details regularly here: http://www.caringbridge.org/visit/cindygross

Follow me at https://twitter.com/cindygross.