Month: July 2019

I need to keep on top of the numbers better.

I spent some time today catching up. A friend and former teacher from court reporting school offered to do a Facebook fundraiser for me. I said yes. I had originally wanted to say no. I pride myself on being self-sufficient and taking care of my own stuff. Accepting help is tough for me.

But I realized that I had told everyone reading here to accept help, so I did. I accepted the help. And I am so thankful and completely overwhelmed. My out of pocket costs for doctor bill, not including my premiums, for this “adventure” have been $4434.13 so far. Yes, I am approaching my deductible, kind of – $2400 to go – but I was trying to figure out how to cover this, especially with the work I’ve lost so far and will lose.

In swooped 121 friends, family, strangers. They raised $6847 for me. Even after fees, it’s $6630 that I will use entirely toward deductibles and copays. To say I’m overwhelmed is an understatement. I’ve said that I’m overwhelmed 40 times by now I’m sure, and I absolutely mean it. I did not expect this. My fundraising angel did not expect this. We are happy about it, of course, and I am breathing a little bit easier than I was a short time ago.

Soon I hope to embed a spreadsheet I’m keeping relating to numbers. It includes dates, mileage, how long we spent in the car, and how long we spent in the offices. Then come the big numbers. Out of pocket cost the day of – copays, out of pocket cost after insurance, how much was billed to insurance, how much a discount the insurance company got, how much of a discount I got. Hey! I got one!! How much insurance covered and a description of what the visit or test was. There’s also how much was denied by insurance and some notes. To give you an idea, I’d like to share some of the current numbers. I shared my out of pocket + copays above. Total billed by insurance? $45,809.75. Total paid by insurance? $7121.82. How does that even make sense?

To give you an idea, I’d like to share some of the current numbers. I shared my out of pocket + copays above. Total billed by insurance? $45,809.75. Total paid by insurance? $7121.82. How does that even make sense?

Anyway, I have a way to go before I can celebrate my insurance being more than my deductible and our premiums combined. And since I’m doing a clinical trial – paid for by the company running the trial, I got a free EKG today, yesss… – if I am eligible and it works? I may pay out more than they’ll pay for my care. Because discounts.

Fun stuff.

Like, really love to travel.

We have a trip to San Diego coming up, bought and paid for BC (before cancer). We’re going. Part of it is work, but a bigger part is play. I’m supposed to keep going after that to Denver for a conference. I didn’t sign up to actually attend the conference, but I was hoping to catch up with friends. It was also bought and paid for BC, but if I have to cut that, I will.

Before San Diego, I was supposed to go to Minneapolis for work. I gave that one up and it’s being covered by another wonderful captioner, but that brings my potential lost days of work to four. Not an hour here or there, but full day jobs I’ve had to pass on due to uncertainty about treatment. I don’t want to leave anyone in a bind at the last minute.

I am hopeful that I will get into the clinical trial. I am going to get my blood drawn again. They have to check and make sure that I am actually BRCA1 mutated for themselves by submitting another blood test to their lab, I guess. I also have to get an EKG (electrocardiogram). I can’t remember if there’s other stuff I need to do since I’m sitting in an airport writing this as I head home from a weekend work trip to Boston.

Anyway, the trial appears to have good results in people with the BRCA1/2 mutations at higher stages, so I want to try it.

It’s a pill every day for 6 months. Visits to the doctor every 28 days, plus a few extra visits in the first months. No one will be allowed to handle the pills without gloves except me. I’m the only one who gets to physically touch the chosen poison. I’m just hoping it works and that I can avoid  chemo administered by an infusion.

I just don’t like going to the doctor’s office. This weekend was interesting. I am a terrible liar, so when people asked how I was doing I proceeded to ruin their day a little by proclaiming, “I have breast cancer!” I am hopeful that I didn’t ruin anyone’s day too much and that they had fun at the conference. I had a fun time at the conference. I love my work because so many times it doesn’t feel like work, but people keep sending me money to do it, so added bonus!

As of now I’m not sure of the start date or even if I’ll be admitted. I’ll have to arrange the start date so that I can get to the doctor on day 15, hence why Denver may be a no-go. I won’t be drinking anything but water and non-alcoholic beverages while I’m on this pill. The worst side effect that didn’t happen in many people was to do with the liver. I’ll take no chances. And I’ll be eating a lot of iron and maybe taking an iron supplement if that’s allowed. The major side effect that hit the most people was anemia.

Talking about drinking reminded me that I forgot my Gatorade in the hotel fridge. Drats.

Like, the bike saddle. But not a real bike. One that doesn’t move.

Last Christmas I had a sudden urge to buy a bike for our home. I was taking Spin classes and doing well, so why not at home? Also, maybe I can get my husband to do some biking so that we can both be in better cardiovascular shape.

We put the bike together, and it became a wonderful thing to throw things on. It can hold your favorite blanket from the couch or a fuzzy. That’s what we refer to those sort of fuzzy pullover jacket thingies as. I will not discuss here why we have so many other than to say there is a Tanger Outlet down the road and there might be a Columbia outlet located there.

We finally moved it downstairs into the room where it might live. Not sure how that will work – the room isn’t that big, but we’ll figure it out. Anyway, it’s been sitting there.

The last few mornings I’ve gotten up and used it. Deal with self: You cannot check anything on your phone until you have done at least 20 minutes on the bike. I’ve done that and some crunches and a little bit of weight lifting.

Why? Because I need to! I weigh more than I ever have in my life and I don’t like it. Also, exercise is good for you! I had been exercising pretty regularly until May. In May, everyone in the house came down with what we lovingly referred to as ‘the plague’ and we were sick. Nasty, nasty colds. That lasted a month. In that month I did not exercise. And then, just as I was getting better? Boom! Cancer.

Well, the cancer was there already, but I found out about it. That led to a month of not much exercise. I walk the dogs almost every day, so I at least was getting that 1-1.5 miles of walkies daily. But besides that I was just eating and not doing much and just kind of sad a lot. So, exercise.

I don’t anticipate it will make me any happier, but I know it will help me through treatments if I exercise and eat right.

Making myself exercise has, is, and probably always will be a struggle. I know that it makes my body healthier, but I don’t feel better after I’m done. People say, “I feel great! I’m so glad I did that 60-minutes on the treadmill/elliptical/rowing machine/etc.” I might say that, but I don’t feel that. Maybe I’ll take up running after this is all done and see if I can find that mystical runners high.

I’ll instead focus on the good things that exercise brings. Fit in airplane seats better. Able to lift heavy bag into overhead effortlessly. Able to help do more stuff around the house as long as they don’t involve tools that vibrate a lot. I have to try to protect my hands – it’s how I get out of using the weed eater.

Because seriously. That 20 minutes is so, so boring. Even with good music. I should go back to classes, but I know that I need to learn to do this myself for myself.

I should dust the bike off though. The frame is still dusty. I need proof that it’s being used.

Why?

Because I’ve got all the things. Two areas of triple negative aggressive cancer in the right, pre-cancer in the left, BRCA1 gene mutation. But I think we are going to get along just fine.

But my oncologist also made me happy. We’ve decided that since only the MRI said my first tumor found was 2.1 cm and everything else says 2 cm, we can call me stage 1. It just feels better than Stage 2.

So, what did we talk about?

The known option for me is chemotherapy followed by surgery. It would be six months of treatment with chemo followed by surgery within 4-6 weeks. Recovery from surgery would be 4-6 weeks. The first 12 weeks would be one infusion of drugs every three weeks. Not too bad. The second part is the tough part. A different infusion every week until the end. That is the tried and true proven treatment for the breast cancer I have in my right side.

There might be another option. A pill called Talazoparib which is a poly (ADP-ribose) polymerase, or PARP. Administration of this pill would also be followed by surgery. The pill would be taken daily for 6 months. My oncologist is looking into whether this is a good option for me or not. It is part of a clinical trial.

Either way, the time frames are about the same as long as I am responding to treatment and staying healthy enough to continue.

What is a clinical trial?

A clinical trial is a test for a new drug or treatment protocol. Generally, by the time we have reached the phase of human testing, the regimen has been tested thoroughly in labs. Probably on animals. I’ll try not to think about that part.

In the case of this particular pill being used in the clinical trial, it has been tested on humans previously. I found many different trials involving this particular drug on ClinicalTrials.gov. The trial that interests me involved treatment of Stage 3 metastatic – metastatic meaning the cancer has spread – breast cancer with the BRCA1 or BRCA2 mutations. It shows good results.

The side effects are maybe less, maybe worse than chemo. It depends on how your body responds to the drug. Hair loss is still a side effect. That’s okay. I’ve been getting mentally ready for that chance to see what I look like with really short hair before it all falls out.

Basically, I’m waiting. I will fill out the paperwork to take part in the trial, but will wait for my oncologist to talk to another trusted oncologist to see if that is the best path forward for me or if I should go with chemo instead. I can withdraw from the trial at any time, so there is no obligation.

Back to waiting. Except I know this wait is short. If I want to do the trial, I have to start within 28 days of my PET scan. That’s within the next two weeks. And if we go for chemo, I may be looking at starting at the beginning of August.

I’ll let you know as soon as I know.

I have been having dreams the last few nights. They were driven by anxiety. The anxiety was driven by waiting for my genetic counseling results. The results are in! And… (drum roll) – I tested positive for the BRCA1 mutation.

Let’s start with the fact that everyone has BRCA1 and BRCA2 and all the other genes they test for. BRCA stands for breast cancer susceptibility gene. Yes, even men have these. The purpose of these particular genes is to help regulate cell growth and suppress tumors. When they are normal, the body is happy, cancer does not appear. When they are mutated, your risk of cancer increases.

BRCA1 is associated with triple negative breast cancer which is the type of cancer I have. It’s often difficult to treat, but, again. I’m lucky. I was getting screened and tested. So far all tests have shown nothing spreading beyond the breast area. It’s often not found in time. I will keep telling myself I’m lucky, even on the days when I don’t feel very lucky.

Both BRCA1 and 2 are associated with breast, ovarian and pancreatic cancer. If you have a history of any of these cancers in your family, I would highly recommend getting genetic testing done so you can determine your risk and be screened sooner.

What now? I’m not 100% sure yet other than the tatas are definitely going tata and my ovaries shall follow suit. Why? Risk of recurrence. I could opt for a lumpectomy, but I’d have to get yearly mammograms and MRIs or something. If I go with a mastectomy, the risk of recurrence goes down 90%. Not zero, but I’ll take it. 

But… your ovaries are not misbehaving! Ah, but they could. Removing them will decrease my risk of ovarian cancer by 96%. Better than 90%, closer to zero. I’ll take it. I had already opted out of fertility preservation as well. Chemotherapy most of the time will kill any chance a woman has of having children naturally without fertility treatments. Not always, but often. I am glad that these treatments are available for women who want children.

What about babies? Answer: I have two babies, they are furry and love to go on walks and take naps on the couch. I have never really had any drive to be a mother. I do love being an aunt though. I want them to grow up healthy and happy, and I want science and genetics research to keep moving forward quickly so that in the future risks can be mitigated and reduced without drastic surgical intervention.

I’m not going to lie. I love my tatas. They are glorious and have opened doors for me, mostly literally. Like, someone holds the door for me. They’ve made buying clothes tough, but when I do find the right outfits or dresses – mostly dresses – they make me look fabulous. 

I will not get implants. The news about them has not been good lately, and I don’t want a foreign object placed in my body. I already have an invasive foreign object – pretty sure cancer wasn’t there to start with. There are other options for reconstruction that I will look into, or I could wear fake tatas. It will never be the same. I’ll miss them.

My ovaries? I’ll miss them too, but mainly because I’ll go into surgical menopause. I just was looking this up to try to get the words right and found what the procedure is called: oophorectomy. That’s right. Ooph!

So, what are the odds of developing breast cancer? I am using breastcancer.org to answer this question here. They talk about ‘absolute risk’ – this is based on how many in a certain time period/age – and ‘relative risk’ – which compares risk between groups.

In the US, one in eight women will have breast cancer in their lifetimes. The younger you are, the less likely you are to develop an invasive breast cancer. Interestingly, the highest probability for this type of breast cancer appears to occur in your 40s where it jumps to 1 in 69. I’m in the 30-40 range, so my probability was 1 in 228. Crap luck, that.

Things that can increase your risk include family history and genetic mutations. If you have the BRCA1 gene, your chance of developing breast cancer by 80 is 72%. Basically, if you don’t have it by then and you have that gene, you can count yourself lucky. BRCA2 is only 69%. Much better. Kind of. (**Note: Sarcasm in use)

Luckily, the 5-year survival rate is 90%. So there’s that.

My relative risk has probably been high lately due to drinking alcohol. Or not. I did drink too much around the time that we lost our Wee Man Spencer dog in April. He had dementia, and we didn’t fully comprehend how much of our life was going into that little man until he was gone. It was jarring. Anyway, the actual overall risk if you drink two or more alcoholic beverages a day goes from 12% to 18%, so I’ll just suggest you cut down to a few days per week and not drink every day. Sound medical advice. Kidding – I am not a doctor, nor do I play one on TV.

My particular case is synchronous bilateral breast cancer (SBBC). I randomly searched and found some information on surgeons.org about this. 2.3% is the number for two tata diagnosis of invasive breast cancer. My left isn’t invasive at this time, but I’m not really interested in waiting around to find out if it wants to join the right at that particular party. The best part is that this is more likely in people with no cancer in the blood or lymphatic system. There are other things that make it more likely, but I don’t fit those because I am a unicorn. 

Survival rate is the same when both breasts are misbehaving. I guess that’s good.

Then there are recurrence rates related to types of treatment. One option is a lumpectomy. That is where they remove the area of the cancer during surgery and then check the margins to ensure no cancer has moved beyond that area. The margin refers to an area around the tumor that is removed as well. When they remove a tumor, they want to be sure they have removed the entire tumor, so they take additional tissue along with the obvious mass. Hopefully this ‘margin’ shows no signs of cancer, but if it does, the surgeon will need to remove additional tissue.

Recurrence within 10 years (back to breastcancer.org) is around 35%. If you add radiation after, Recurrence is reduced by 46%. 

Mastectomy, total removal of the breast, greatly reduces recurrence, especially if the cancer is found in the lymph nodes as well. I am holding out hope that I am not in that category and that it is only misbehaving tatas and they decided not to share with anything else in my body. It can go metastatic, meaning it has moved elsewhere in the body but it is still breast cancer. Let’s assume we caught it early enough that I can avoid that in this case. Because dwelling on ‘what ifs’ in this situation is not healthy. I need to get through this part first. Everything else can wait.

Seems about right. 

My surgeon called last night! Last night was Sunday night. Always good news when it’s a weekend call. Amiright? I’m glad I got the call. We were watching a movie – Lucky Logan – and it was funny and entertaining. Not a movie that will change your life, but that’s most movies. Sidetracked. Sorry.

Biopsy results are in! I received an apology as they had apparently been uploaded Friday night but no notification had been sent to the surgeon. Even though they’re all on the same network. And in the same building. It’s okay. I’m not upset about that. I wanted everyone to just have a good holiday weekend. I probably made the person who was checking the pathogens sad before the weekend. No one wants to go into the weekend having just discovered cancer, yours or someone else’s.

Results: Right side, additional invasive ductal carcinoma (IDC). Near the original site, not a complete surprise. Left side: Ductal carcinoma in situ (DCIS). Again, ductal – the cells in the milk ducts, carcinoma – cancer, and then a new one – in situ – meaning “in the original place.” 

Meaning? It’s non-invasive. Yippee. Still cancer. And it’s only non-invasive because it hasn’t spread beyond the milk ducts. There’s a higher risk of it coming back than the IDC because cancer totally makes sense. The chances are apparently less than 30%, but that’s much higher than, oh, say, 0%. 

I need to find out the grade of it – I was a little stunned, so failed to ask questions. I will contact them soon. And also, find out if it is hormone positive or negative. My initial diagnosis is negative, so this one is probably positive because, as I informed the surgeon last night: I’m not normal.

Decisions now. Lumpectomy with radiation drops the recurrence chance to around 15%. Still higher than the 0% I’m looking for. If it does reoccur, it’s 50/50 invasive/non-invasive. To help myself, I’ll need to maintain a healthy weight – something to work on, absolutely – and exercise regularly. This one is frustrating as I have exercised regularly more than anyone else in my family probably ever. Rant over. Limiting or avoiding alcohol – that’s fine. I’ll miss it, but not more than staying alive. I’ve got stuff to do. Eating healthy food and limiting sugar. I’ve done this for the most part. I will admit to being on a Reese’s binge at the moment, but I’m even limiting those.

Not smoking. I’ve never smoked. I grew up in a household where my parents smoked inside. No, I will not blame them because at the time everyone smoked and it was just the norm. For a long time I’ve had adverse reactions to the smell of cigarette smoke. It makes me sad, because many people in my family smoke and some of my friends smoke. I wish they’d stop.

Radiation. Not excited about this one, I must say. We are waiting on the results of genetic testing to see how prone I am to all this fun stuff. I’m honestly hoping it comes back and just tells me I’m an anomaly and there’s no current genetic reason for this. That would help me feel like maybe my relatives would be safe from all this.

I’m leaning toward just saying, ta-ta, tatas! The less I have to look over my shoulder for the rest of my life, the better.

Pros: Hiking will be easier! Won’t have to hunt for the elusive ‘bra that fits.’ No more getting punched in the boob by the dogs. I can opt for reconstruction, or not. Prosthesis are available. I could go as a Fembot for Halloween.

Fun fact: Did you know that reconstruction was not required to be covered by insurance until 1998? 

Cons: I’ll miss them. We’ve been through a lot together in 38, almost 39 years. 

So, that’s the news for today. Chances are I will still be looking at chemotherapy first, followed by surgery. Or not. Next oncology appointment is on July 16th and we should have all the pieces together by then including the genetic testing. Then we will move forward. In the meantime, we will be revamping this page a bit, make it prettier, and I’ll be working because that’s a good way to keep my mind occupied. Cheers.