Author: Amanda Lundberg

Today I Signed Some Papers

Well, it was yesterday. But I wrote this yesterday.

Yes. Exciting. It was the pre-surgery paperwork to have my salpingo-oophorectomy, full hysterectomy, remove my cervix - all that fun stuff. I really like my surgeons, though, so although it’s odd that they’re going to cut me open, I don’t mind as much because they are good people.

 

Although one or both surgeons might be younger than I am. That’s fine.

 

Just as a random aside - not as random as some of my asides can be - please check out this site:

 

https://starafina.com

 

Sarafina is a BRCA previvor. What on earth does that mean? Well, she knows that she has the gene, so she’s decided to take action now instead of waiting to see if cancer forms. She has had a double mastectomy and reconstruction with implants. She will eventually have a salpingo-oophorectomy as well, but she is much younger than I am. She hasn’t hit the age where they start freaking out about ovarian cancer in BRCA patients. That’s 40, by the way.

 

As another aside, my 40th birthday is going to be very… interesting?

 

In other news, I’m back to working out. The first day, I did the breast cancer DVD that I was given. It is so relaxing that everyone else in the house fell asleep on the couch. I did all the range of motion exercises, the stretches, and then took a break and later did the weight lifting exercises. With no weights. I was sore the next day.

Edie beagle and Arthur chi-mix asleep on the same bed.
Naps 4 Lyfe.

 

Frustrating, but I need to wrap my head around the fact that I will have to regain my range of motion after my surgery. This is a good place to start. Anyway, I’m about 6 days back into working out! I did yoga on day 4 because I hurt so much, but I’m gaining back strength quickly, so I’m happy about that. I’m not anywhere near where I was in the past - deadlifting 85 lbs; benching 75 - but that’s okay. Those are things I can make as goals for the future.

 

Because after my surgery? I’m going to be at a higher risk of heart disease. Which is way fun because my Mom had her first heart attack at 48. So, I will need to continue to exercise and clean up my diet. I’m hoping that with my tatas gone exercise will be easier. I went down to do some crunches a few days ago and almost choked myself with them.

 

Yes. The struggle is real. And honestly? I won’t miss how hard they make it to do everyday things. Although not having tatas will make me much more aware of how big my belly is. Working on it!! Abs every day from now until surgery.

 

And last note. Several people have donated to me via my donation link on my blog. Thank you. For now, I’m going to sit on that money. I still hope to someday get a foundation up and running, but in the short term if we end up not needing it, I will pay it forward to another cancer patient who does. The need is real.

 

Also, I got some money for participating in the trial! They can’t give you a lot, but it’s enough to buy the Ikea couch I’m planning to use to convalesce on. It’s good to get some return on investment after months of being poked with needles and felt up because the trial required me to be examined one to two times per month.

 

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Deforestation

It’s a real issue. Action item: Plant a tree this spring in honor or remembrance of someone you love or respect.

 

The current deforestation happening in this house is a different variety. I GOT CLEARED TO SHAVE! Which was funny, because neither my oncologist or trial nurse remembered that part of the protocol, so they were like… I don’t remember that. Is that why she’s been so hairy at all her appointments? Hmmm…

 

Anyway, it’s done. Everyone can keep or rid themselves of whatever hair they desire, but I wanted no more to do with hairy armpits on myself. Legs could have waited since it’s still winter, but… just get it all done.

 

Oh! And I’m done with treatment.

 

I also got cleared to drink. I think I’ll have a glass of red wine tonight. Husband is having tummy issues, so he’s not drinking either. Or eating, I think. He’s going to the doctor tomorrow. I told him if it’s his gallbladder I get $5. Because I have been on self-imposed house exile too long and I think I’m funny.

 

Now it’s time to get out! Well, soon. I haven’t had any of the drugs since Monday, it’s Wednesday, and I feel better. Whether that’s mental or physical? No idea. I’ll take it. I walked the dogs 1.5 miles plus today and I was still sucking wind, but not so bad. This morning I had a super early job - it continues the next few days - so I’ll get the practice getting up early. After those days, it’s time to incorporate some sort of workout routine into my every day.

A selfie of me outside, hair is flat, wearing a raincoat, but also showing cleaveage.
Walking the dogs? Cleavage.

I’ll have to see if I almost faint when I change elevation still. That limits the kinds of workouts you can do. Tai Chi maybe? I have a video of exercises that I’ll need to do after my surgery, so I’ll probably pop that in on Saturday and see what I’m in for and what I should be focusing on. I have a feeling it’s going to be a lot easier than what I had been used to, so I’ll need to wrap my head around accepting that I’ll have major limitations.

 

Speaking of accepting future things, I’ve started therapy! Yes. I should have started a long time ago. Anyway, we are going to focus on my fear of the coming surgery and menopause. I think it’ll help. And after, if I need help wrapping my head around things - like physical limitations for a time - therapy can help there.

 

Did I also complain about other things? Yes. Got some stuff off my chest, realized I can’t change most of it and that’s just how it is. Feel better already!

 

Anyway, this post feels very disjointed. I think my brain is coming back online, so that’s good. Fortunately, my work kept it going even when it was at its most spacey. It’s coming back online just in time for tax season! Yay! Good thing my accountant sent me some stuff I needed. I totally biffed it on getting anything done myself. I guess I’ll be hiring them for another season!

 

I’m just excited to be done. I have 6 weeks to have a farewell tour for the ‘killer tatas’ - double entendre there too. It’ll include hanging out with friends, some volunteer work, and lots and lots of cleavage. Sure, they don’t get me the drinks they used to, but I honestly haven’t tried in years. Maybe…?

 

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One Week

That’s how much time I have left in my treatment. I’m ready to be done. Yes, it’s been relatively easy. No, I haven’t had to had infusions. But I won’t miss hearing that alarm every night at 6pm telling me to go and ingest my poison.

A selfie of Amanda with her hair standing up a lot.
Still got the hair. And it does what it wants!

So, February 3, 2020 - my last time taking this pill. Hopefully forever. But, hey, cancer can always come back. At least if it does and it’s the same kind, we know where to start.

 

February 4, 2020 - my last oncology appointment during treatment. There will be more in the future, but this will be the end of the major part of my clinical trial and the beginning of the next phase: Surgery.

 

March 18, 2020 - probable surgical date. I’ll be signing papers on February 13th with my gynecological surgeon to perform a salpingo-oophorectomy with a hysterectomy. More papers to be signed February 24th with my breast surgeon. We’ll go over the surgeries in both appointments. They’ll be done on the same day, but one at a time so no surgeons accidentally elbow each other and drop a scalpel in somewhere. I’m sure that’s the reasoning. Anyway, they’ll get done on the same day.

 

So, I have 6.5 weeks to party with the tatas. It looks like I should be getting the drug out of my system within two weeks. So, that’s 4.5 weeks to party with alcohol. I’ll have to see if my neighbor is up for wine drinking any time soon - she just had surgery as well. You know who you are. 😉 Hugs!

Arthur chi-mix's head sticking out of blankets, he's yawning and looks kind of like a fox.
PARTY!!! Or nap. Either one works.

It’s just an unbelievably weird place to be in, I guess. I’ll be glad to be less tired, hopefully. And hopefully my red blood cells will become more plentiful and reduce in size so I am not sucking wind walking the dogs. I want to try to get in some sort of more healthy shape than I currently in, but it’s all very dependent on returning to normal.

 

And then I’ll be saying good-bye to my tatas and lady bits - technical terms - and going from a 38DDD or whatever I am right now to nothing. No nipples, nada. Will I flash people for reactions? Oh, probably. And also be thrown into menopause. Then I need to pay much closer attention to my diet and make sure I exercise. Menopause can increase your risk for heart disease. Mom had her first heart attack at 48. I don’t want to follow suit. I expect I’ll become a powerlifter, though, to prevent bone density loss.

 

I am really considering taking up running. I've never really been able to run that well - 8 minute mile was my fastest - but I think part of that was the fear of knocking myself ou

Edie beagle's head sticking out from under a blanket. She looks like she's listening for something.
Not impressed.

t. And asthma, but hopefully I can work beyond that.

 

So, expect to see me in the Olympics weight lifting competition and also running centuries. Yes, those are 100-mile races. Probably with a dog that I will have to carry part of the way with my power lifting skills.

 

And with that, I’ll see about setting up tata to the tatas events. Or at least leaving the house. I’ve been not doing that lately. So, so worried about getting sick. And it’s winter - kind of, this winter has been disappointing in the snowfall department - when I go into hibernation anyway!

 

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Anemia and You

Let’s talk about anemia! It’s been quite a while since I tried to educate you on anything important. I think this is important.

 

What do you think about when you think of anemia? Low iron is what most people would say. Yes! That is a form of anemia. Did you know there are other forms of anemia? Let’s go over the common forms of anemia. I used anemia way too many times in this paragraph.

 

According to the National Institutes of Health, there are four types of anemia. Iron-deficiency anemia, pernicious anemia, aplastic anemia and hemolytic anemia. Iron-deficiency is what everyone thinks about when they hear the word “anemia.” Most of the time, this type of anemia can be treated by eating more food with iron and/or supplementation. It is common in pregnant women as they are “eating for two” and also can be a side effect of diseases such as celiac disease or Crohn’s disease. Celiac being the actual disease, not the gluten-free trend.

 

Let’s take a step back for a moment and talk about what is involved in anemia. Red blood cells. That’s it. You either don’t have enough of them or they’re acting funny. So, iron-deficiency anemia is when you don’t have enough iron in your red blood cells, basically.

 

Pernicious anemia sounds scary. Pernicious: having a harmful effect, especially in a gradual of subtle way. This particular anemia is related to B12 and folate specifically. These assist in making happy little red blood cells in your body. I’m on the verge of having this one as my B12 is starting to tank a bit. I also have another genetic mutation that inhibits my ability to properly use B12, so… there’s that. I’m supplementing with B12 to help on this one, so hopefully it’ll stay where it is and not get any worse. Only a few weeks left of treatment and taking a drug that has been slowly whittling my red blood cell count down.

 

Aplastic anemia. It’s not a plastic anemia. Aplastic anemia can be lower numbers of red blood cells *and* lower numbers of other blood cells. This one can be acquired or inherited and is related to how well your bone marrow can make cells. If it’s damaged, it’s not making them fast enough. Chemotherapy and radiation can cause this condition, so I imagine it is fairly common in cancer patients. It can also be caused by autoimmune diseases and arsenic and other chemicals. Only my red blood cells are low so far, so it seems my treatment is acting on a different mechanism than ‘traditional’ treatments.

 

And hemolytic anemia. Did you know blood cells have life spans? A red blood cell apparently usually lives around 120 days. If they’re destroyed early and your body can’t produce enough replacements, that’s hemolytic anemia. Also, if your body decides it’s going on a killing spree of red blood cells when there is nothing wrong with them and they’re just minding their own business, that’s acquired hemolytic anemia.

 

These are just the main kinds of anemia. There is also sickle cell anemia, which is inherited, and makes your red blood cells inflexible and unable to go through small blood vessels. They’re shaped like little sickles, hence the name. Sort of like a crescent moon shape according to the Mayo Clinic. This starves those vessels of oxygen that is carried by the red blood cells. Reading a little bit about this one, it’s no bueno.

 

There are more! I’ll just mention others I found: sideroblastic anemia - acquired or hereditary, myelodysplastic syndromes - a type of cancer, congenital dyserythropoietic anemia (CDA) - hereditary, Diamond-Blackfan anemia  - probably caused by genes - that’s helpful, megaloblastic anemia - abnormally structured blood cells, and Fanconi anemia - too few blood cells, hereditary.

 

Except now I’m looking at it, maybe I have megaloblastic anemia. Or maybe I have all the anemias. Megaloblastic is cells that are too large or too young. Mine are fewer and larger lately according to my blood tests. I’m not showing any of the symptoms except shortness of breath though, so it’s fine. And that’s only when I’m walking the hills around here with the dogs. Or when I help too much around the house. It’s an excuse to not do chores. Ha!

 

So, please, the next time someone starts talking to you about anemia, because I know this happens to you all very often, don’t just assume they need to eat more red meat. There are many symptoms and causes and treatments. Taking an iron pill isn’t always going to solve the problem.

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The Verdict is In

I’m going flat.

 

Last week was the week of appointments. I had blood work and a mammogram + ultrasound on Monday, oncology on Tuesday, dentist on Wednesday - that was dependent on ‘passing’ my blood work and my oncologist saying yes, and they did! - Thursday off, Friday I met with a plastic surgeon, and Saturday was the chiropractor. Which doesn’t really have any bearing on my cancer treatment, but it was just another appointment. I also ended up at the doctor with my husband Friday afternoon, so technically it was seven appointments? He’s fine.

 

I’ve never been so excited to get my teeth cleaned.

 

Back on task! Why did I decide to go flat? Well, I was thinking of taking up skeleton racing - Google it if you don’t know what it is - and it’ll be much, much easier to lay down on the sled!

 

That’s not really it. No. It’s the surgeries. It’s the recovery. It’s the fact that I know I’d have to have an additional surgery if I wanted reconstruction because I’m a bit too chubby right now. But… if I lose the weight, I know the chunk ‘o pudge they’d want to use will get even smaller, and I was advised that I didn’t have much there to start with. That’s not where I carry my weight. I knew that.

Arthur on his bed, staring at me lovingly.
"I don't care about tatas, mum. Can I have a treat?"

 

I’ve also looked at pictures of the reconstruction surgeries, and I don’t see myself being happy with those scars. Depending on how they do the reconstruction, there are scars of different types on your breasts plus the scar across the belly where they cut you open to remove the fat. All of those wounds need time to heal.

 

I’m at peace with this decision.

 

Will I freak out a bit after surgery? Oh, probably. I’m asking someone to remove a piece of my body. Plus, I am hoping to get my reproductive organs all removed on the same day so I’ll pop over into menopause. Recovery is going to be a blast! Stupid BRCA gene thingy. Well, at least my tatas and my ovaries won’t try to kill me anymore. I hope.

 

I’m very thankful that I am able to make this decision. I’m always hopeful that no matter what decision a woman makes, her doctors will respect it and do their very best to honor their wishes. Reconstruction, flat; implants, flap surgery - we have choices, and I want everyone to be happy with their choice. Cancer takes away many of our choices, it’s good to have a little say in *something* in all of this madness.

 

Overall I am still feeling okay. I’m trying to push myself a little more with activity even though I’m still on my meds. I am so tired of having to rest so much. I don’t like it. I am planning to push myself in the short time between my end of treatment and my surgery. I want to try to get as strong as possible as fast as possible. And drop 10 lbs, which should hopefully be not too hard when I’m not taking a drug that is making me anemic.

 

No, eating or taking iron won’t help. I’m planning to write a post on anemia soon! I know you’re excited about it.

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Back to Reality

This week I start back at appointments. Some of the ‘regulars’ - blood work, oncology. Plus a breast ultrasound and a mammogram. I’ll take those any day over the Christmas Eve trans-vaginal ultrasound. Hopefully the dentist on Wednesday - assuming I pass my blood work - and then meeting with a plastic surgeon to discuss DIEP flap Friday. Highly recommended, one of the best in the area. See what they have to say.

 

Then the real reality will start. I have to make a decision soon about my surgery. Flat or DIEP? I have to stay healthy until all this is done. I have to start working out soon after I’m done with my drugs in February. All studies point to being physically active will make surgical recovery a little easier. Maybe.

 

If I go flat, I’ll need to try to mentally prepare myself for menopause since we’ll do the double mastectomy and the reproductive organ removal on the same day. If I do DIEP, am I prepared for the recovery? Am I going to be able to accept that I’ll need at least two surgeries then? One for the DIEP, one for the reproductive parts. They can’t do both at the same time because the DIEP takes too long and the OR is only open for so many hours/day.

 

I have to prepare for menopause either way. It’s just is it now, or later in the year? I wish my ovaries weren’t so likely to try to kill me. Pffft.

 

Making decisions like this is not fun. But I also try to keep it in perspective. I get to make the reconstruction/non-reconstruction choice. My treatment has been relatively easy. Am I spacey as hell sometimes? Absolutely! Do I get winded walking the dogs? You betcha! Have I missed out on any of the holiday fun because of cancer? Absolutely not. I’ve had a blast and enjoyed every moment. Did I have to have a port put in? No. My drugs are daily oral. Did I lose my hair? No. But I got to try new hairstyles because I figured short hair, if it fell out, would be less likely to traumatize me. Have I felt sick? Hardly. I took two Zofran - they control nausea - early on because I felt a little sick, but that’s it. Since then, I’ve felt fairly normal other than the spaciness and getting tired easily.

 

I’ll go on. I’ve been able to sleep 8-10 hours per night for almost my entire treatment. I work from home. I was able to do all of my scheduled travel jobs through November. After that, I still did big jobs, just from home. My loss of income was limited to having to not work on some doctor appointment days. I’ve been able to save up to prepare us for this year. Prepare us for me being out of work for a time. But I will probably be able to go back to work sooner than most because I can work from home and my job is sedentary. I just have to be able to lift my arms enough to get my hands on my steno machine.

 

My husband has taken on the bulk of the duties around the house. I am horrified when I read stories of women who have a spouse or boyfriend who can’t seem to help out at all. They’re at home recovering from a double mastectomy, and he’s angry that they can’t cook dinner. That makes me angry. Grow the fuck up. Do you love this woman or not? If you love her, you’ll take care of her and ‘suffer’ for the short time she’s unable to help out because she JUST HAD HER BOOBS CHOPPED OFF or SHE’S GOING THROUGH FUCKING CHEMOTHERAPY AND IS SICK FOR DAYS. I try not to swear on here much, but seriously? What the hell is wrong with people?? The humans in my house have thumbs and brains and they use them. The dogs are thankful. Especially for the thumbs, I imagine. Yay treats!!

 

I’ve never had to ask for help. He’s picked up the slack. If I can’t do something that I would normally do, I tell him. It gets done. He cooks - okay, he’s always cooked, I’m average at best - he cleans, walks the dogs on days I can’t - it’s my one exercise I can do, I like to do it - does the laundry, folds the laundry - again, better than I do it, so I help when I can, but… not upset when he gets it all folded before I’m available! He’s not perfect, thank goodness, but he’s perfect for me and loves me even though I’ve refused to kiss him this year because he’s been sick.

 

Gotta stay healthy.

 

And the best part? This isn’t just because I have cancer. We’ve always worked together to get stuff done around the house and take care of each other. It’s a partnership. I mean, I haven’t cleaned a toilet since 2008. It’s my most despised household chore. He doesn’t mind it.

 

Match made in heaven.

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Happy New Year!

Well, almost. Today is still 2019. Tomorrow my health will reset because my insurance is resetting. Right?

 

Or not. But in the meantime, let’s do a year in review! By the numbers (Dates are numbers, k?):

 

5/30/19 - The beginning of the whole ‘cancer’ thing due to a mammogram and ultrasound that were ‘probably just a cyst, but we’d better check.’

 

6/6/19 - The day I had the tests that would change the trajectory of the year. I learned the diagnosis a few days later. I cried.

Amanda's face superimposed on a dark-haired person holding a crystal ball.
That time I read the future in a crystal ball. Totally missed the whole 'cancer' thing!

 

7/3/19 - Attacked with the 9 gauge needle + other tests.

 

8/20/19 - Beginning of treatment. Delayed due to tests, clinical trial starting, and… vacation/work trip.

 

28 - Number of days I visited medical offices of various kinds throughout 2019. Some days were up to three appointments/tests.

 

33 - Number of hours spent in doctors offices.

 

22 - Number of hours spent in the car getting to/from doctors offices. My oncologist is super close, but you go there a lot.

 

~$7,000-$10,000 - Approximate income loss due to cancer.

 

$6900 - Deductible.

 

$6700 - Money raised by friends/family to help pay my deductible. I honestly wouldn’t be where I am today without this help. Thank you all!!

 

$1000 - Additional ‘out of pocket’ above deductible that I’ve paid out - what does this even mean?? Insurance is so confusing.

 

$4865 - Insurance premiums June-December 2019 for my husband and I.

 

~$61,000 - Cost of care through the start of my clinical trial - does not include December appointments. Those bills should be arriving soon. I don’t see the cost of the trial, but I did a search and it showed the pills I’m taking cost upwards of $5,000/month. Ouch.

 

~$43,000 - Insurance ‘discounts’ - what is this? Write Offs? I don’t know. But it leads to the next number…

 

~$7600 - Approximate amount insurance company paid for my care.

 

~$16,240 - Approximate out of pocket + premiums for the entire year. So, if I’d just paid out of pocket for the year, I would have paid a little less for this treatment than what I actually paid if I were granted the discounts given to the insurance company. Good thing I did all those chiropractor appointments and husband had some physical therapy!

 

$754.44 - New insurance premium per month for 2020. (x12 = $9053.28) - It only went up $59/month! Score.

Edie Beagle and Arthur chi-mix standing on their back legs begging for treats.
Auditioning for Santa's sleigh.

 

$2800 - New deductible. I think. I was able to work more than I thought I’d be able to, so I already have this saved/ready to go plus enough to cover the bills for a month while I’m recovering. And I’ll keep working until surgery. I’d keep working through surgery, but they put you to sleep for it.

 

1 - Number of dogs adopted in 2019. Let’s see if we can beat that in 2020! (I’m sure my proofreader/husband will have something to say on this subject… hahahaha)

 

I wish you and yours a wonderful, safe and happy new year. May your health reset on January 1 if needed as your insurance does if you’re in the US, and may everyone whose health doesn’t reset get better quickly and keep partying like it’s 1999.

 

Cheers!

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All I Want for Christmas…

Is a pelvic ultrasound! Said no one ever. But that’s where I found myself at 7:30am on this Christmas Eve. Oh, what fun! She told me what was going to happen. First, ultrasound of the upper tummy and kidneys. Okay! No problem. Then… the other one. It makes sense that to get the best pictures, you should get close to what you’re looking at. Closest point to view the uterus would be the vagina.

 

It was a little uncomfortable, but nothing like having a uterine biopsy. Would I recommend it for the casual ultrasound user? Absolutely not! But I think they got the pictures they needed. I still have a cyst on my left ovary. That was seen on my PET scan last July. I hope they post the report today because I’m weird and I want to read it. The radiologist didn’t come in to talk to me, so I suppose that’s a good thing.

A patio with a fire pit in the middle with a roaring fire, blue sky in the background.
It was warm enough to have a fire yesterday! So, we did.

 

Side note: I did not blog last week. I was busy! Drag Queen Bingo to support the local Humane Society - so much fun! - sang karaoke downtown (hint: I did not win - but I had fun!), lunch with a friend, and the last gasp of city council meetings to caption. I was very busy. This week? Less so. Thankfully.

 

Right now I’m cleaning the house. Well, I’m blogging. But I’m almost done dusting. We will go to our neighbors’ house for dinner with their family tonight. We do not have any immediate family nearby - the closest is several hours drive away - so we have let them adopt us into their family. A few more mouths to feed? No problem! They’re wonderful and we are thankful for them and all of our lovely neighbors.

 

On Christmas Day, I'm going to do something crazy! I’m going to drink a mimosa. I had this cleared by my oncologist by saying, “I’m going to drink a mimosa on Christmas.” The oncologist said, “That’s fine.” All of my liver numbers and things are doing just fine, but I’ve been avoiding alcohol due to that one person in the initial trial for my drug who died of, oh, liver failure. Better safe than sorry.

 

Other than being traumatized by an ultrasound wand this morning, I’m doing well. My day starts with loratadine and sublingual B12 followed by breakfast. Hopefully at or during breakfast I remember to take my magnesium oxide and psyllium husk (fiber). Then I’m done until 6pm ET when I take my talazoparib. Fingers crossed for more shrinkage evidence on January 6th. That’s my next mammogram/ultrasound. That’s a busy week. I have five appointments that week: blood work, mammo/ultrasound (that’s two for one!), oncology for the end of round five, a dentist appointment - assuming my numbers are okay from my blood work - and I’ll meet with the plastic surgeon that Friday. I’ll learn more about the DIEP flap surgery.

Arthur chi-mis asleep on his back with his front legs tucked up against him. He's under blankets.
Relax...

 

I’m struggling with whether to do reconstruction or not. My initial thought is chop them off and run away and combine that with removal of the full baby production system. Or, if I go the reconstruction route, the baby system will be removed at a later date. But I can’t wait too long. Apparently my ovaries are ticking time bombs now that I’m over 35. Yay, genetics.

 

I promise to spend Christmas Day focused on family and friends. To enjoy the moment. I’ll really enjoy that mimosa! Promise.

 

Happy Holidays to you all!

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Fourth Round Completed

Thankfully, I only have to go six rounds. So, well past the halfway point! This week was blood work, as usual - CBC, complete metabolic panel, magnesium - I almost passed. My magnesium is back to good. My oncologist said to start taking magnesium after it came in low last round. I have done so religiously. Except yesterday, of course, when I completely forgot. With that I also took psyllium husk. That’s fiber. Magnesium oxide causes one side effect, the easiest way to counter it is… fiber. So far, so good.

 

We had our monthly check where we don’t feel anything. Still a good thing - means nothing is growing out of control or moving where it’s not supposed to go. I gained weight - oops. And my blood pressure is back up where it was before. No wonder I feel more normal. Still tired, but more normal because my blood pressure isn’t crazy low. Of course, that’s probably a side effect of something and next month it’ll be hypertension high or something. That’s how I roll.

 

I requested additional tests today. My RBC, Hgb and hematocrit are all low, but my MCV and MCH are high. In my mind, this means that I’m having fewer red blood cells and the ones that are left are getting enormous. I’m sure that’s medically sound. Anyway, my Google searches are legendary at all offices I attend, I’m sure, so this led me to B12 and folate. These being low can also make the MCV and MCH go high.

 

Sidetrack: I have another genetic mutation. Conclusion: I”m a mutant.

 

Or not. Anyway, about 40% of the population in the United States probably has the methylenetetrahydrofolate reductase, or MTHFR, mutation. Everyone has this gene, it’s just whether it’s mutated or not. Anyway, my mutant variation can lead to deficiencies in folate, B6 and B12. That’s a very simplified version, but you can feel free to read all about this gene on riveting websites such as nih.gov (National Institutes of Health).

 

Back on track. Because of my MTHFR mutation, I asked my B12 and folate to be tested as well. And also because I just love getting stuck with needles two days in a row. Who doesn’t?

 

I got a call from my oncologists office today. I am to take B12 as my levels are normal to low. I’m taking B12 as I write this. How crazy is that? I’m using a sublingual B12 which may or may not absorb into my system better. Although now that I’m doing more research, I need to make sure mine don’t contain sugar substitutes. Side effects: gastrointestinal symptoms. Pass.

 

I’m also seeing that my LDH levels are low. Lactic dehydrogenase. Related to how your body breaks down sugar as energy for cells, particularly the muscles. Of which I currently have none. Also, it appears that low LDH is also related to some genetic mutations. I probably have those too because, hey! Why not?

 

I will try to keep providing updates throughout the holiday season, but hopefully my only remaining cancer-related appointment this year is the Christmas pelvic ultrasound on December 24th. That’s only kind of cancer-related, really, though. It’s more BRCA1 mutation-related.

 

This is getting complicated. Cheers!

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I can’t think of what to call this post. I was trying to come up with some clever ode to my reproductive system. I’ve got nothin’.

 

This week was, indeed, the discussion of what to do with all that reproductive stuff. Because of my BRCA1 gene, I’m at a higher risk for ovarian cancer too. FUN. Most women have a very low chance of developing ovarian cancer in their lifetimes - around 1%. Mostly that would be over age 70. Me? Around a 40% chance. It increases as I get older, but basically over 35 with BRCA1 it’s suggested that maybe the ovaries n’at should just go.

 

Solution: Later, ovaries and fallopian tubes!

 

Wait. Fallopian tubes too? I heard from a friend earlier in this process that they’re discovering many ovarian cancers actually form in the fallopian tubes - the things that connect the ovaries to the uterus - and then travel to the ovaries. So, they can go.

 

And while we’re in there, let’s just pop out the uterus too. I might have a slightly higher chance than the rest of the population when it comes to uterine cancer, or not. It’s not clear yet. But why risk it?

 

So, yes. I’m going to have all those pieces taken out. They’re small, but as I was sitting in the waiting room for a really long time because the office was running behind, I went online and read up on how the procedure is done. It’s fascinating, and delicate, and there’s a ligament that made me giggle because, hey, gotta find humor in some stuff: infundibulopelvic ligament. Anyway, they don’t want to damage anything, like, say, your bladder, while they are performing the surgery. Punctured bladder = bad.

 

It appears that this procedure is higher risk on lean people. I do not currently have that problem.

 

Summing up: No babies. That’s fine. I’ve not had any, and I’ve been perfectly content as a dog mum for the last five years. If I ever change my mind, I will adopt. Probably one that’s potty trained already and is having a harder time finding a home. That’s how I roll.

 

The surgeon who is going to do this surgery for me asked my dogs’ names, and I theirs, so I’m glad we are on the same page.

 

If you’re reading this and freaking out about ovarian cancer now, please don’t. It is *very* rare. And only one in 500 women in the United States has a BRCA1 or BRCA2 mutation. Your chances of having this are very, very low.

 

I’m special. That’s my story, and I’m sticking to it!

 

In other news: Pelvic ultrasound requested by surgeon. Scheduled. Date: December 24th. Christmas Eve.

 

Finally, I’m going to have an ultrasound on a ‘normal’ female part! I’ve had them on my ankle, knee and tatas. Finally, the area most women get an ultrasound on!

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