Life is cray cray here.
I haven’t written because things are changing so quickly. There has been no time to process and disseminate one issue before another arises. So please, forgive the length of this post as I try to catch up here.
When last we left our cancer-ridden heroine, I was contemplating the meaning of pain in the aftermath of my first lumpectomy. While boob-life has not been easy since, I’m happy to say that remains my most pain-ridden moment to date.
Every surgery/procedure has an epilogue called The Pathology Report. I’m learning quickly that the Path-Port is really the next-steps Bible for cancer, more so than any other lab report to come out of treatments, because it’s dealing with Bob & the Bobettes. The doctor cuts them out of me and the white-coated folks take over, aiming their microscopes and stains on B&B to learn more about these invaders. I like to think of the Path-Port as an alien autopsy, Hangar 51-style.
So the Path-Port from the first lumpectomy came in right after my last post, and it wasn’t good. Remember those margins I talked about? The doctors want clear (cancer-free) areas around the tumors that they cut out. Well, my margins were not clear and I needed to go in again. In fact my margins showed more small Bobettes that weren’t showing anywhere in all of the other tests and scans I’d had to that moment.
And this very point, that I had things growing in my boob that were not easily found, led to the second revelation of the now Dreaded Path-Port. If I had so many small satellite malignant tumors lurking and growing in the breast, it was still possible for one or more of them to spread to other parts of my body. These would still be too small to track (needle in a haystack-style) which would make them even more dangerous in the future. The only real option for ensuring that I would not have a problem with these potential “colonists” (my wonderful doctor’s word, not mine) would be to have chemotherapy.
Chemo is a blow. While I completely understood and agreed with the problem and solution, Stephen and I reeled with the news.
Chemo is what sick people get. Really sick people. Emotionally, I still hadn’t absorbed that I was really sick. I felt good, I couldn’t feel lumps and I was told and I believe (still) that I will be cured. So how could I be considered sick, with something as major, as deadly, as cancer?
And if I wasn’t really sick, there was nothing for me to be afraid of. That’s right folks, I had not felt any real fear during any of this. I had yet to be afraid.
Chemo stripped away my emotional innocence, and my arrogance, because I was now afraid. Very afraid.
Still my fear wasn’t coming from a fear of dying—they keep saying I will be fine. My fear is of becoming so sick that I actually would feel like I had cancer. To me that’s the main side effect of chemotherapy—feeling like big crap. Big Crap. BIG, BIG CRAP.
(Not doing chemo when it was recommended was never an option. My maternal grandmother, my only female relative to have breast cancer, died from it because she opted NOT to have chemo or radiation after her mastectomy. She died two years later when it spread to her brain. Not pretty.)
On Sept. 2, Stephen, Samantha and I were back at the Aspen Surgery Center having a second lumpectomy, knowing that chemotherapy and radiation would be my protocol after. This surgery was much simpler, because the only good news from the Path-Port was that my two sentinel lymph nodes—which act as the primary conduit to spreading cancer throughout the body—were clean. So we didn’t need to take more lymph nodes, only go into the breast again for the margins. And I didn’t need to become the Borg again, because we weren’t working with a large main tumor, but with small Bobettes. No wires, no dyes, woohoo!!
I flew through that second surgery, and landed back at work and active the following week, thinking all was good. Yep. I was done with surgery. No worries at all. They got the Bobettes out of me. In fact, Dr. B basically performed a partial mastectomy this time to ensure that she had clear margins. (Stephen remembers her saying that she took a big chunk out of me this time because she didn’t want me on her table again—which we found very amusing and reassuring. None of us wanted me on her table again either.)
Samantha, Stephen and I attended Chemo School. Yes, that is what it’s called. We were told I’d be on a four three-week cycles of TC. TC is the cocktail they chose for me. I would have many other things to help me survive the chemo, like anti-nausea meds, steroids, Neulasta (to increase my white cell count to help fight of nasty bugs) and more. While the TC guarantees me losing my hair, it’s a good all-around chemo for us to use as a proactive measure. Twelve weeks and I should be able to work through most of those days.
We scheduled the start in early October, after the Simi Valley Relay for Life on Oct. 1 and 2, for which I had taken over as team captain for a friend who wouldn’t be there for the event. We were set and I was starting to do my research into surviving and thriving during chemo and using cold caps to save my hair. (More on that in a later post.) I was intent that I would be the best, most functional chemo patient possible.
I’d forgotten about the second Path-Port. Completely, totally forgotten. I was so focused on our next steps and planning as much as I could that when Dr. B called me last Thursday, I figured it was just a follow up.
Instead I found myself shaking and crying in an empty office with a dear, dear co-worker holding my hand while Dr. B went over Path-Port: The Sequel.
My margins were not clear. They found more microscopic tumors and cancer cells, and some slightly larger ones. This time I would need a mastectomy. They would need to take my breast. Take. My. Breast.
I couldn’t breathe. Here I thought I’d gotten around needing to lose my breast and two surgeries later it was bye-bye boob.
It’s a little hard to put solid words to such strong emotions, but I’m going to try and ask you to bear with me in this. And do know that I’m past needing reassurance about my womanhood, identity, usefulness of my boobs and all of those other things we hope will sound reassuring. I am okay at this point, but I had to process this all first, and that’s what you get here—my process, and it’s intimate.
(WARNING: THIS IS INTIMATE. IF THAT WILL BOTHER YOU OR IF YOU THINK YOU WILL KNOW ME BETTER THAN YOU WANT TO, THEN DON’T READ. BUT I PROMISED MYSELF TO BE HONEST HERE, SO…)
For some women, from what I’ve been told, their boobs are not necessarily an appreciated portion of their sexuality. (Yes, I’m finally venturing into the world of sex here.) That’s not the case for me. I have always appreciated the sensations that come with happy boobs. (My daughter is now running around in circles, clamping hands over her ears and screaming, “Stop talking now!” Okay, Dear. Enough said.) There is a very sad part of me that says losing one or both of my boobs is like a lower-version of castration. I am without those sensations forever more. That’s a loss. A very personal loss. One that I have NEVER heard anyone put words to. And I think we don’t talk about it because the bigger concern is living, and with the close second concern possibly being gracious, well-mannered ladies in the process. Obviously I agree with the first part (I am now afraid that I will die, just in case you were wondering when that emotion was going to final arrive) or I would not be moving forward. As for the second, judge me as you will.
But, I certainly don’t have to like it.
The other change that comes with Path-Port: Part Deux is with my chemo. Now that we’re seriously concerned because we really don’t know what the hell is happening in my boob, we need to get more aggressive with my chemo. What was 12 weeks total of TC will now likely become 8 weeks of AC (which I’m told could make me fetal-curl-crying-for-mommy) followed by 12 weeks of T. All of these acronyms and the order and combinations in which they appear are for specific chemo drugs. But I really hate science and I’m getting tired of my forced indoctrination, so I’ll let the very curious research these solo. It’s all very searchable on the Net.
Wrapping an overly long update here, I’ll say that my surgery is scheduled for next week. Chemo will start 3-4 weeks after. And radiation is still on the table. I will post later about reconstruction and options and what they all mean, but for now me, my family/friends and my doctors are committed to and confident with the approach of cutting the damn cancer out of me and poisoning what’s left. And at the end of it all, I will be okay. They still say this. I will live. I will thrive and I’ll have some perky new boobs to go with my renewed life. Amen.
Mama Makes Quilts 
Jake, what an extraordinary commentary on your situation. Thank you for sharing. For those having similar issues, your words will be a Godsend, a beacon of hope. Great writing, by the way. Impressive.
Thank you BJ.
yes — all that. with prayers and hugs…
It’s hard to think of things to say. Your posts are fascinating insights into your thoughts and strengths and, as another poster said, are also helping other women facing the same thing but who don’t have your ability to express themselves so well. You’re in my thoughts and prayers.
Thank you for the excellent report. You have another family just down the road, ready to help.
I had 4 rounds of AC. Chemo on Thursdays, return to work on Friday, crash on the weekend. Hair loss started about 10 days after and I was wearing a hat 2 1/2 weeks later–hated the wigs! Nausea drugs (several different ones) offered relief, though the chemo effects were progressive for me and I did throw up by the 4th treatment. My son was Sam’s age and my daughter was only 8. Scary times for all, but I had great support. Only cried alone a few times. And I will be honest, I felt and still feel in a sense, that I was “chosen” for this. I could, AND DID, handle it. My prayers of healing continue for you.
My bible study is praying for you. Two out of three women have had the double surgery. One had reconstruction and the other could not due to the length of time under anesthesia. She had a previous stroke. They are very much alive and well. You can do this.
(((Jake)))
I can relate to this on a very personal level. The memories come flooding back….
Here you are feeling perfectly fine, but in order to kick the cancer to the curb, you have to feel like a sick person? Not. Fair.
Like you, I was surrounded by love and support. That really helps! You know what? Those drugs to help you through chemo? They really do help!
I know you can do this.. I know you know you can do this. But you don’t have to like it.
Sending love and healing jujus………..
(((Jake)))
I can relate to this on a very personal level. The memories come flooding back.
Here you are feeling perfectly fine, but in order to kick the cancer to the curb, you have to feel like a sick person? Not. Fair. !!!
Like you, I was surrounded by love and support. That really helps! You know what? Those drugs to help you through chemo? They really do help!
I know you can do this.. I know you know you can do this. But you don’t have to like it.
Sending love and healing jujus………..
Jake praying for you, your family and your doctors. You are a strong and willful women… You can get through this .,. It won’t be easy but know that you are loved in the quilting world and carry that love with you. Love conquers all. XO ❤️🙏
My dearest Boobala,
Strength is something someone learns to have as the tackle a difficult task, I would love to say I understand but to lose your breast, I don’t understand, I only understand the cancer part. My heart hurts for you and your family. Mt ask task for today is for me to digest what I’ve read and understand what to do next. I find great healing chatting with my advocate group that I as a medical professional advocate to women going through similar issues. The only thing I can say is try to stay strong. I’m hear for you and your quilt peeps got your back. Love you my sweet Boobala. Will be in touch soon. 😎
Pouring out love and prayers for you and your family. I appreciate you telling your story so honestly. I hope that putting it into words is helpful and healing for you, as well.
Jake,
I know at times you feel like you have fallen down the rabbit hole in Alice in Wonderland and don’t know where you’re going or what is next. You are a brave and strong woman you will beat this and kick its ass! Healing thoughts and hugs are with you.😎💜
Sending all the prayers and hope to you and yours Jake. Cancer is the journey none of us wanted to take. Thank you for sharing so well all the thoughts, fears and emotions along the way. We have your back in this fight.
Having gone through 35 radiation sessions and multiple chemo sessions let me just say this: they have to show you the list of side effects…you do NOT have to get them all! Try to keep hydrated, ask for fluids iv when you can’t take enough by mouth, take the anti-nausea meds they give you, check out Boost from Amazon.com as a quick way to get a lot of calories, and most of all…live!
OMG! Don’t know what to say, cause you’ve said it so well! Out damn cancer!!! It sucks, but you are an amazing woman with extraordinary strength and wisdom and will get through this!
Sending buckets of love and prayers to all of you. Hang in there, you’ve got this!
You amaze me Jake. I love you sooooo much. Hugs and love. We’ll be with you every step of the way!
Well, again, we plan and the universe laughs. I hear you on the chemo regime – I had 4 AC & 4 T. No fetal curl – felt like the onset of flu. Never puked. Meds were great. And I gained 20 lbs over the course of treatment – so there you go! I did wallow a bit in the “why me?” But I got mad in a hurry!!! The Neulasta shots were not so bad – I did them myself the day after the infusion. It was weird, but a really tiny needle. What else? The Port – I loved it – no poking, bruising – zip, zip and go! The nerve situation – yes, that’s a loss. But as I said when I was asked (repeatedly) how are you doing – I’d answer – the boob wanted to kill me. The boob had to go.
All the best in this bizarre scenario. And it does get weirder. The RNs, RNPs, MDs – all the staff make all the difference. A RN asst gave me a rosary and said she’d add me to her prayer circle. That’s outside my scope, but I appreciated the gesture. And really, what could it hurt?? Support came from all over. Cancer sucks, but it brings clarity. I’d prefer a more modest introduction – maybe pneumonia, appendicitis? Oh well, you get what you get. Take care!!
Oh, much less pain with mastectomy – since they scoop out the tissue – and the nerves are gone too. The drains – they were annoying for the week to 10 days you need them. I was really surprised how easy the surgery was – much better than the 2 biopsies. I am not fond of pain – I will readily whine with a paper cut. Tylenol covered it. I had no trouble sleeping, no skin irritation. That was saved for radiation!!
You got this!
I applaud your honesty and bravery. Will continue to pray!
Your story is a personal and revealing account from the perspective of the patient…..which will benefit any medical professional who follows along. I know I have learned. People have said stay strong….and you will. But it is ok to not to be strong sometimes. Feel what you feel. I keep saying many prayers for you. You will kick this cancer in the tail!
I’m sending you every iota of positivity and health I can and lots of mental hugs daily!!!! I’m thrilled but not amazed (everyone knew you had this strength in you) by your willingness to share and your continued sense of humor and honesty.
Thank .you for sharing your most intimate thoughts Jake xxx
I got goose bumps reading this because you described your situation, your thoughts and emotions so well. Anything I could say would be woefully inadequate, but know that I’m in your court and looking forward to the good reports you’ll be able to share later.
My heart breaks to read this as an active member of the team – I’m not praying for an anonymous Facebook friend or an acquaintance. This is my sister you cancer jackass & I want you to leave her alone! Jake you are being so brave & strong & your writing skills are amazing as always. We’ll get through it all, all of it no matter what! I know you are helping others, I know writing helps you as well, and I’m sure not having to verbally repeat the updates to concerned folks makes it a little easier too. Again you are far braver than i to share your story so publicly. You never fail to impress me. Love you my beautiful sister and I will be here for you now and then – whenever this then is a memory.
Well crap Sis! You made me cry!
Jake you definitely are strong. I can see you being a famous writer. Incredible way to express what you are going through. Praying for you!.
Great work Jake! Thoughts and prayers to your and your family. I see a book in all of this. 🙂
Thank you for sharing your story. My prayers are with you and all of your family!
Thinking of you…..xoxo