Month: October 2019

Hi dear readers. Right now I am sitting in bed with a heating pad against my back. The current chemo regimen I am on makes my back incessantly ache. Tylenol doesn’t help it; neither does aleve. A heating pad helps the most, although it makes me pretty immobile. Try taking care of a one year old while limited to a couch with a heating pad against your back – it is doable, but not ideal.

You see, my one year old wants me on the ground with him. In all honesty, that is what all kids want. They want you literally and figuratively on their level. For most of my son’s life I have stuck to this – every day I am on the floor with him playing with blocks or balls, or whatever toy he is interested in at that moment in time.

Unfortunately, the past week or so I have been unable to be on the floor with him, because crouching over him hurts my back even more, and I really need some relief from the unrelenting aching of my back. It sucks.

I am starting to be seriously limited by symptoms from both my cancer and from my treatment of that cancer. I am getting hit from both sides. I am still getting short of breath with exertion, which means by the time I carry my son up from the living room to his bedroom to change his diaper I am quite out of breath. I can no longer put him down for naps or bedtime, because I don’t have the energy or lung capacity to rock him in my arms while standing anymore. My husband has taken over nap time and bedtime.

This means that my husband is working from home everyday for times when I need his help. My son LOVES his daddy – he is very much a daddy’s boy. It isn’t surprising that he is. Since my son was 2 weeks old I was off getting chemotherapy on a weekly or every other week basis. My mother in law, who is the biggest kid person I have ever met in my life, watches my son on those days. Since he was 2 weeks old, my son has adjusted to my essential disappearance for one to three days weekly or every other week.

After I had my mastectomy, I was not allowed to lift him for four weeks. Every change in treatment has brought a new rift in my bond with my son. Once our bond has seemed to strengthen there is a new reason I can’t see him or lift him or take care of him. It is not surprising that he prefers his dada or his grandma. They are consistent. And in all honesty, they have the energy and stamina to be fun with him the entire time they are taking care of him.

You guys, this all really sucks for me. In case you haven’t noticed, my son is my entire world. I love him more than anything; more than anyone. It is physically painful to not be with him. But, he seems to be unaffected.

This new chemo regimen along with the cancer, like I said, is really taking a toll on me. I am out for the count the day of treatment and the day after. So, my son is with grandma and dada those two days. When I emerge from my bedroom the evening after chemo, my son is uninterested in being with me. He wants dada. He always wants dada now.

Of all the pain I have endured since diagnosis, this is by far the worst. It is by design, though. I know what it is like to grow up motherless. I know it takes a village to raise a child, especially in this case. I want my son to feel loved and cared for, even when I am not around. In all honesty, it is better for him this way – that he is so happy to be with grandma and dada.

It is by my design. But, that doesn’t make it any less soul crushing for me. Because, I want him to light up when he sees me. I want to feel loved by my son. But, that is another thing cancer is taking away from me. One of the many.

I will most likely die before he is three years old. I will probably die before he is 2 years old in all honesty. He won’t remember me and he won’t miss me. And for him, that is probably the best. But, it breaks my heart, because I will miss him so much, in every fiber of my being.

Sometimes when I watch my son with my husband, it occurs to me that this is what their life will look like after I am gone. I feel like I am watching myself be erased from my life. That is how it has felt since I was originally diagnosed.

When I was pregnant and recently diagnosed my mother in law and sister in law came to help set up the nursery. This is normally something I would have done methodically on my own, but since my son was going to come early, I figured I could use the help.

My mother in law and sister in law are wonderful and quickly took over energetically getting the room ready. I just sat there, feeling exceedingly depressed. My mother in law mentioned that it was that I probably felt overwhelmed with decisions and couldn’t take making any more decisions. I agreed, but that was completely off the mark. I felt even then, that I was being erased from my life. I was just a vessel for my son to enter this life. This could all be done without me. It was paralyzing to say the least. I have felt like that many times since my cancer diagnosis. I will be missed, but life will go on without me. I am not necessary.

I saw my oncologist yesterday and she looked at the bump I had messaged her about a couple of weeks ago. Her nurse practitioner didn’t seem to think it made sense to image it. She was wrong. I knew this at the time, but didn’t want to bother arguing with her.

My oncologist saw it and immediately said we should scan it. I had a CT scan of my head yesterday – it confirmed that the nodule is cancer. It also showed two spots in my brain that are likely cancer. I will see a neuro-oncologist and a radiation oncologist tomorrow, to see what treatment they have planned for these new lesions.

The incessant and relentless bad news is soul crushing. When my oncologist called and told me the news I wasn’t surprised. My oncologist told me she wished she had had better news for me. I told her that the bad news would stop once I’m dead. I have been thinking that a lot recently – the bad news will eventually stop. Either something will work or I will die, but the bad news for me will end eventually. So, I can take some solace in that.

That is where we are dear readers. Love and light to you as always.

To my son, if you read this one day, which I hope you do, please know that I am in no way mad at you for wanting your dad all the time. I have no anger towards you, only love. You have not caused me pain, only joy. You are the best thing I have done in my life and you are the love of my life. All I want is for you to be happy and healthy – with or without me. If you are happy and healthy, then my job is done. I am so sorry I couldn’t be with you all the time when you were a baby. I wanted to. Everything I have done, has been for you and what I have felt like is in your best interest. I would do anything for you, my sweet baby boy.

It wouldn’t be October aka Pinktober aka Breast Cancer Awareness month if I didn’t write an obligatory “Save The Tatas” post.

So here it goes, my requisite post on “saving the tatas” or in my case literally having them amputated off of my chest wall.

For those of you who don’t know, which is probably most of you, many members of the breast cancer community are against this phrase. Furthermore, many members are against what they refer to as the pinkwashing that occurs every October. From what I have gleaned from Facebook support groups, pinkwashing is using the color pink and more specifically “breast cancer awareness” in order to increase sales, without necessarily giving much or any proceeds to actual breast cancer research.

Sounds pretty shitty, huh? Yeah, that’s why many breast cancer survivors are not a fan. On principle I am not a fan either, but I also just don’t have the energy to care that much about it. One can only have the energy to be riled up about so many things. And as I have mentioned before, I don’t always have the most energy.

Anyways, marketing ploys like “save the tatas” can be very upsetting and infuriating to survivors of breast cancer.

I get it. First off, it is inaccurate. Breast cancer treatment is not focused on saving or preserving the tatas, but instead it is focused on saving the person. Many times, to save the person, a trained breast surgeon has to remove a part of or the entirety of a breast. In some cases, like in mine, both breasts are removed.

My breasts were basically ticking time bombs. Spoiler alert – I was unable to neutralize the bomb before it blew up and I was diagnosed with breast cancer over a year ago. As a BRCA1 mutant I had an 87% lifetime risk of getting breast cancer. In mutants like myself, the recommendation is to remove both breasts after a diagnosis of breast cancer.

The medical recommendation I was given, prior to my breast cancer diagnosis, by multiple doctors was to have my children and breastfeed them and then to have my breasts removed. This is in addition to annual screening in the form of an annual mammogram/MRI of my breasts starting at the time of my diagnosis. I found out I had the BRCA1 mutation when I was 28 years old and did have screening, but this lapsed during my pregnancy, because screening mammograms and MRIs aren’t performed during pregnancy.

Let’s backtrack a little though. Did you notice the insanely high lifetime breast cancer risk that I had as a BRCA1 mutant with breasts. Did you also notice that the recommendation was to wait to breastfeed my future children and then have my breasts removed?

In all honesty, I thought this was a perfectly reasonable plan at the time. There was no family history of breast cancer in my family, at least that I knew of at the time, and of course as an educated millennial woman I was planning on breastfeeding my future children. You have to get as many of those IQ points for your future children as you can! Please note the sarcasm in that last sentence.

What the actual fuck!! In hindsight, this all seems ludicrous to me. I had an 87% lifetime risk of breast cancer and not one physician said get those breasts off of you now?!! In all fairness, I may not have followed that advice. A double mastectomy is extremely painful. Definitely the most painful surgery I have had to date. Fortunately, I have blocked the pain out from my memory, but I can tell you all that it was definitely the most painful recovery from a surgery that I have experienced. Oh, and then you have these drains sutured into your chest wall, which is it’s own kind of specific torture. I also liked my breasts and didn’t want to have to get them chopped off before it was really necessary to do so. Plus, I was an internal medicine resident at the time, and taking time off to have surgery didn’t sound appealing to me at all.

Anywho, back to the medical advice I was given. Now, when I look back and think about this in the greater context and in the political context (yes we are going there – don’t worry though just peripherally) I think that this is an example of prioritizing a woman’s health behind that of her offspring. I’m so sorry I am bringing abortion into this. I really am. But, I do see a similarity. Maybe it is a stretch, but I do think it is worth noticing and mentioning. In the simplest and plainest analysis, we put the health and IQ of my unborn child higher than my own. And in all fairness, I am included in this “we.”

OK, so I’m a rational and reasonable person and also a physician, so yes I can acknowledge that there is probably a lot of data saying that this is a reasonable recommendation. I’m sure for the aggregate BRCA1 mutant that it is completely appropriate to wait to remove one’s breasts until after breastfeeding. But, for me and many other women that I have met through support groups it wasn’t. It will probably cost me my life. If I could go back in time and make any change, it would be to have a preventative double mastectomy right when I learned I carried the BRCA1 mutation.

Unfortunately, just like breast cancer treatment, there have not been as many advancements in time travel as I would have hoped for. Don’t worry, I’m mostly just kidding. But, how cool would time travel be!

So, yeah, I think that the medical community has given me a disservice by not recommending all of my options to me when I first found out about my BRCA status. And, furthermore, by not strongly suggesting immediate preventative double mastectomy upon diagnosis of my BRCA status. Because, there is really no way to know when a person will develop breast cancer, and even with screening cancers can be missed. Maybe given a more complete set of options things would have turned out differently.

Well that was an upsetting detour. Let’s take another one! Hopefully, less upsetting, though. I can’t write a “save the tatas” post without acknowledging our society’s weird obsession with breasts. I’m not judging either, I am just as much of a part of the problem as anyone else.

For those of you who aren’t familiar, there are several options for reconstruction following a double mastectomy. Most women who opt to undergo reconstruction will have metal expanders placed either under or over their pectoralis muscles during the same surgery that the mastectomy is performed. This is what I opted for and I still have metal expanders that are under the muscle. Unfortunately I will probably have them until the day I die.

Why did I choose to opt for under the muscle expanders, which can be as painful as they sound? Well, you guessed it – I’m going to blame society again! I felt, that to be seen as a woman, even to feel like a woman, I needed to still have the classic curvature of a woman. I wanted to still have the classic silhouette that our society views as sexy, for lack of a better word.

How vain! But, you have to understand, at the time I was 30 years old. I wanted to still look and feel attractive after all this cancer nonsense was done, which at the time of my surgery was still the plan. I wanted my husband to still find me attractive!

This is in no way my husband’s fault, though. I did take his opinion into account, and he did agree that he wanted me to have reconstruction. But, again, society brainwashed us into thinking that is what makes a woman attractive! I have learned that it is not.

Ironically, neither of us even like my fake breasts. They are far from sexy or attractive. I had radiation to the right side of my chest, so my right fake boob is perky and somehow my left fake boob is saggy. I actually find it somewhat amusing – it looks like one is pointing up and one is pointing down.

I can’t do several exercises, like pushups or any pec muscle workouts because it is excruciatingly painful now. If I could go back and change the decision, I would opt for no reconstruction and to go flat. I think both my husband and I would learn to find the new me attractive. Plus, he has seen me look like a balding man, so he is clearly not in this for my looks at this point.

I am fortunate that I am not in chronic, excruciating pain, like many women who have under the muscle expanders are. How heartbreaking is that though? To go through all the trauma of breast cancer treatment and then have chronic pain from trying to maintain a sense of normalcy in one’s appearance.

I think that is another reason why many breast cancer warriors are over the pinkwashing as well as the sexualization of this disease. We are here fighting for our lives and companies are trying to make a profit off our suffering. Not cool! A lot of the times companies use pink promotions during October and give either none or a negligent amount of their profits to breast cancer research. Of course, there are many companies that do give a charitable contribution, but unless you ask you won’t know which is which!

So, no let’s not save those tatas, let’s save the women and men who are afflicted with breast cancer, because yes men can get breast cancer too. A woman’s worth is more than the size of her breasts and a woman can be attractive without any breasts at all. Again, I think that we are all more beautiful than we give ourselves credit for.

Love and light to you all. Until next time my dear readers.

Today I was part of a panel at the hospital I trained at where we talked about what it is like to care for our own. I served as the token sick patient. That’s not what today’s blog is about, though.

It was lovely to see so many familiar faces and catch up with old friends. I wanted to be done with residency so badly, but whenever I go back to visit I always linger. These are my people. They are part of my wonderful village.

I was talking to one of my close friends after the panel was over and I mentioned to her that it might be incongruent for people to see me talking nonchalantly about my impending death and my horrible prognosis. She agreed that maybe that was the case, but she also candidly said to me “well I don’t think you have actually accepted that you are going to die.”

Some people might not appreciate this kind of comment, but I find it refreshing, especially when it comes from this specific person. We are very open and honest with each other and I know she has my best interest at heart, so it makes it easy to discuss difficult things like my impending doom. This past year has also made me better at holding my own and being honest with my thoughts and feelings.

I’ve been thinking about what she said all day. And she is right. I haven’t accepted that I am going to die. Logically I know it is a real and more than likely outcome. I know all the statistics. I also know, that if I am an outlier it is more likely in the bad way than the good way. My cancer cells have barely been slowed down by any treatment thus far, so if you look at the bell curve for where I probably lie, it’s likely closer to the shorter life expectancies.

Logically your brain can know something, but that doesn’t mean you feel it.

And, honestly I think that is ok. At least for now. I think it is OK to not have accepted my likely fate. I think if and when I accept it I will no longer be able to function in the day to day. And while I physically can function in the day to day I have to make sure that mentally I am able to do so as well.

A life without hope is to be enveloped in darkness and despair. Countless people in the world sustain so much suffering and trauma, but where there is hope a person can persist. At least in my experience. On the days where I have very little hope, I am not functioning anywhere near my best. Fortunately, these typically coincide with days that I physically am non-functional as well.

I don’t know if I will ever accept my fate. I think it is one thing to be ready to die when you have lived a long and full life. But, to die when you are just starting out, I don’t know how one could accept that. I really can’t.

That doesn’t mean it won’t happen, though. What I want has ultimately no control over my outcome. I am well aware of this.

Does it matter, though? If I accept the reality of the situation? Honestly, I don’t think so. It won’t change much. I will still make rational decisions. I may push treatment too far, but at the end of the day it is my physicians’ job to not prescribe chemotherapy if my body cannot handle it. And for now, I am handling it OK.

I admitted to my friend and told her that she is 100% right. Side note, she typically is. I haven’t accepted it. But, she agreed with me that for now that is OK.

That is all for now dear readers. Until next time. Love and light to you all.

I have been writing a lot of this blog in my head during the day. That’s what writers do, right? They just write stuff in their head? Fuck if I know.

Anyways, I have been thinking a lot about what I want to say to you all following my last post. The truth is that I still don’t know. I honestly don’t really feel like writing that much right now either, but my son is sleeping, my husband is doing work, and there is nothing I feel like watching on TV.

So here we are, dear readers. On Tuesday I had chemotherapy. It was pretty uneventful. Or as uneventful as getting toxic poison pumped into your veins can be. I had noticed a new nodule on my forehead last weekend. It is a hard, fixed, non-mobile, pea shaped nodule. I am certain that it is new. Of course, I am concerned it is further mets of my cancer. I mentioned it to the nurse practitioner, whom I saw on Tuesday and she basically said well it’s not going to change what we are going to do, so we will just keep an eye on it.

Gee, thanks. That makes me feel reassured. No scan. No biopsy. Just wait and see. Honestly, though, whatever.

Alright, so Tuesday I had chemo and my concerning nodule was brushed off and then Wednesday I had 1.2 liters of fluid drained from my lung. I had called my oncologist’s office the week prior to ask if I could have the fluid in my lung drained on the same day as chemo, so I wouldn’t have to make an extra trip. My breathing was starting to get really rough. I would get short of breath going up a flight of stairs with my son. If I laid on my right side I felt like I was suffocating. My coughing spells were becoming relentless. My oncologist’s nurse, who I think is wonderful said she would do her best to make an appointment for that same day.

She was unable to, though. So she made it for the day after. I went to see the doctor and he asked if I wanted a pleurex catheter, where they suture in a drain so you can empty the fluid from your lung at home, or if I wanted a pleurodesis, which is a surgical operation to hopefully prevent my lung from refilling with fluid.

I didn’t want either of those procedures! I just wanted them to stick a needle in my lung and drain the fluid out and be on my merry way. “Oh, well we don’t do that at this office.” The thoracic surgeon, who I had been scheduled with, said. Try not to be too proud of me, but I did not swear you guys. I probably looked like I was going to cry though. I really needed to be able to breathe again.

Apparently there is a whole other office that does thoracenteses, or draining of the pleural space, all day Monday through Friday. They take same day appointments. The thoracic surgeon called that office and got me an appointment 2 hours after my appointment with him had been scheduled for.

You guys, this inefficiency happens at the Cleveland Clinic! It is one of the best medical systems in the country! My point actually wasn’t to complain about this annoying day, though. I mean it sucked and it was exhausting, but whatever. Par for the course at this point, to be honest.

I got my lung drained, 1.2 L. I was in agonizing and excruciating pain every time I took a deep breath for the following 48 hours. So that was fun. In an opposite kind of way. Fortunately, I had leftover painkillers from my prior surgeries and used those to survive the pain. I basically slept those entire two days. I couldn’t take care of my son, I could barely do anything.

My mother in law watched my son Tuesday through Thursday and then Friday I went back to taking care of him. Although, my husband literally sat at the kitchen table with his laptop and did work all day there in case I needed any help – which I did.

By Saturday I felt back to normal. I had energy again and I was only in a tolerable amount of pain with deep breaths. My cough has also already returned and I can feel that I cannot breathe as deeply as I could after the procedure.

I probably will need to get that procedure again sometime this week. Does this mean the chemo isn’t working? I don’t know. It’s honestly too soon to tell. Apparently you need a couple months to see if the treatment is having any effect. I’m not too optimistic with this new nodule on my forehead, but there is really no way to know at this point.

Here is what I do know, though. It felt like I did not exist in my life for 2 days. It probably felt more like that to my husband. And, then on Saturday, I felt fine again. Well, as fine as one can feel with some amount of fluid compressing one’s lung. It was like I had come back from the dead. Both my husband and I felt like that was what happened. Like lazarus, I had risen. I mean obviously, no. I wasn’t dead. I was just exhausted and on pain meds. But, you get the point. It’s a metaphor, you guys!

You all can also probably tell from the tone of this post that I am not in the best place emotionally. I am definitely not super hopeful. But, at the same time there is this pesky, incessant part of me that keeps thinking, well maybe this treatment will work. Maybe. It is a soft whisper, but it is there.

As defeated as I feel, there is still a part of me that is relentlessly optimistic. Also, the fact that I am aware of my prognosis does not mean that I won’t do everything in my power to live. I am still pursuing aggressive treatment and I plan to do so until no doctor in their right mind would continue giving me chemotherapy. I will try to live for as long as it is physically possible.

So that is where we are dear readers. Until next time. Love and light to you all.

Other titles for this post included Onto The Next or Not so Optimistic. Well, dear readers I think our time is soon coming to an end. More importantly, I think my time is soon coming to an end.

Since I last posted I have developed a cough. Actually, I had a cough before I last posted, but I originally didn’t think much of it. Until it persisted. So, I informed my oncologist’s office and had a CT scan done a month earlier than was originally planned. That was a little over a week ago. The CT scan showed progression of my cancer. I now have a pleural effusion (fluid buildup in my lung lining) in my right lung as well as increased and bigger nodules in my lungs.

I saw the CT scan of my chest – it looks pretty gnarly. That is my medical opinion of course. So, the first treatment that they put me on for my metastatic disease failed horribly. Let’s take a look back down memory lane and see all the treatment I have endured, shall we?

I have had adriamycin with cyclophosphamide and taxol with carboplatin for my initial chemotherapy regimen. After that I had a bilateral mastectomy with removal of 20 lymph nodes in my right axilla. Then I endured 28 sessions of radiation to my chest. I finished radiation on May 1st. A couple weeks after that I started xeloda for one cycle and exemestane. I was diagnosed with metastatic disease on August 1st. Then on August 3rd, I started lynparza, which according to my oncologist is a “game changer.” I was originally diagnosed with stage 2b breast cancer on August 10, 2018. It is now October 5, 2019 and my cancer cells are proliferating, barely slowed down by any of this treatment.

So on Monday, September 30th, I started a new regimen. This one is supposedly another “game changer.” In all honesty, I’m not too optimistic at the moment. This regimen includes classic chemo paclitaxel plus immunotherapy in the form of tecentriq. I will have weekly treatment for three weeks with one week off and then repeat. Of course, repeating this regimen will only occur for however long this treatment works, you know, if it works at all.

So, my beloved readers, I am no longer optimistic. I am now being realistic. It looks like I am going to die. Probably soon. Probably within the next six months. Unless my cancer cells respond to some barbaric treatment.

I’m going to be honest with you all though, the treatment out there isn’t that good. You will all probably be surprised by this. I am a physician, and I was surprised by this. The adriamycin, or the red devil that it is known as in the cancer community, has been used since 1974. 19 FUCKING 74. That was before I was even born you guys. My mom had chemotherapy for stage IV ovarian cancer over 20 years ago and do you know what she was treated with? Taxol and carboplatin. The same toxic shit I got a little less than a year ago.

There is NO cure for metastatic breast cancer. None. The five year survival rate is 22%. So, I am in the process of getting my horses ready for sale. And by that, I mean I am going to start planning for what comes after my death. I am getting my affairs in order.

It fucking sucks. It breaks my fucking heart. But it really doesn’t look good. I had treatment on Monday and my symptoms from my cancer are no better and actually worse. My cough is worse and my coughing spells upset my son, which breaks my heart. I can’t sleep on my right side, because when I lay on my right side I can’t get enough air. All of this fucking sucks. But, unless I miraculously respond to one of the medicines approved for metastatic breast cancer, I will be dead soon.

Incidentally, it happens to be breast cancer awareness month. Some people have reached out to me and want to know how they can help. One good way is to give to a charity called Metavivor. It was founded by four women who were living with metastatic breast cancer. Of those four, only one of those women is still alive. All of its donations go to research for a cure for stage 4 breast cancer. The site is: https://www.metavivor.org

Love and light to you all, dear readers.