Treatment Teammates

Friendship Forged in the Infusion Center

Amidst the sterile walls of the fourth floor of UCSF's infusion center, I noticed the same woman diagonally across the "pod space" from me week after week. She was young and had a man with her who seemed to be replacing the frozen cold caps she needed from an enormous cooler on her left. She had long strawberry-blonde hair. I'd seen her a couple of times and noticed that she and the man didn't seem to converse. He just changed the caps. 

After the second or third week of seeing her, I called out to ask how she was doing and mentioned that I noticed we were here the same days and for the same duration. I shared that I was being treated for Stage 2A, triple-negative breast cancer, and had started chemo on January 26, 2024. She shared that she ALSO had triple-negative breast cancer and had started chemo on the same day. The doctors discovered an unrelated, slow-growing, malignant kidney tumor in the PET scan for her breast cancer. We were both at the same point in our 12-week carbo-taxol protocol. Neither of us wanted to experience the Adriamycin-Cisplatin (AC aka Red Devil) protocol that would follow if our tumors weren't entirely eliminated by the carbo-taxol. AC is very toxic, and our oncologists shared that our hair was unlikely to survive the AC onslaught. My sister's initial chemotherapy protocol was AC, and I vividly remembered her terrible three days post-infusion pre-Emend/Cinvanti and the loss of her stunning curls. 

I avoided support groups because I didn't feel that I needed support from other cancer patients, and I didn't want to be obligated to give it. In my previous conversations with cancer patients and their families (I've been having them for 40 years),  I found myself often more informed and with more perspective because of my lifetime of exposure to breast cancer, treatments, surgeries, and complications. I didn't feel particularly lonely in my therapy because not only could I talk with my mother and sister, but I had a network of other women who were also survivors and available upon request. 

My infusion days were joyful. I received a text from Julian, a card from Gleeson, a call from my husband and mom, and a letter from Taylor, and I always had someone I enjoyed driving me to the infusion, keeping me company, getting my lunch, and driving me home. My ritual of listening to a series of prayers on YouTube settled my mind. Music from Ben brought a smile to my face. I didn't feel sick. 

Jacqueline wasn't having nearly as much fun. I couldn't imagine facing this disease alone, and when I saw her, I thought of what my mother might have felt when she was 36 and 38. Reaching out to Jacqueline started as putting something good into the universe because no one did that for Mom. Jacqueline didn't ask for my friendship. And I didn't realize how much I would appreciate having a teammate who was in precisely the same place for these innings.

Jacqueline and I exchanged numbers after that first introduction, and I texted her that night or the next day simply to ask how she was doing. That started a series of texts and calls where we became confidants and shared the challenges of navigating the treatment process. We compared cold capping, side effect management, UCSF delight, and frustration. 

"Hi, Jacqueline...how are you doing? I'm feeling more queasy than previously. Sending you love."

"Hi! I am just getting back to texts...Feeling good overall but dreading having to drive up to UCSF again tomorrow for a quick injection. It was so nice to talk to you today...Do you take meds for the nausea? I am fasting, and that helps with day one side effects."

"...Are you getting Cinvanti infused? Miracle stuff. I take Prilosec because I feel more indigestion. I also took a 5mg THC/CBD gummy on Wednesday night (about 15 minutes ago) to tamp down the steroid jitters so I could sleep. I don't fast...keeping my tummy with some food works better for me."

Jacqueline's tumor was larger than mine as it grew considerably in the time between initial detection and the start of treatment - about two months. She is an OB/GYN charge nurse who managed the night shift in a Santa Cruz hospital. She is single, with no kids, no partner, and a dog she loves. Like me, Jacqueline's tumor had not metastasized, and she was expected to make a full recovery. She was headed towards a lumpectomy in contrast to my bilateral mastectomy and DIEP flap reconstruction - primarily because for people without the BRCA mutation, the outcomes are the same. Both of us were mentally preparing ourselves for AC. My oncologist thought it was highly likely that I would need it. 

"Dr. Esserman suggested to you (Joelle) that you can avoid the AC if you get to PCR 0."

"Right"

"Are you getting scanned in week 11, too?" Jacqueline's MRI was already set up, even though we met at week 8. My doctor put in the order for the MRI a few days after my week 9 appointment because she couldn't feel any tumor. Jacqueline's was April 5, and mine was April 19. Jaqueline noted that if either of us needed AC, that was the day for the first infusion of it.

"Jo (Chien) is pretty certain I'll need AC. I can do anything 4 times. I'll get scanned after week 12 - and UCSF didn't have timely room for me (to get my MRI at UCSF) - so I'm doing it at Sutter!". UCSF freed up an appointment for me to have my MRI in week 11 at UCSF.

"Mine (oncologist) is giving me the vibes too. I get scared about losing my hair despite my efforts. So dumb in the grand scheme of things, but my hair has always been so ingrained in my life."

I shared my sister's story with Jacqueline, including her wigs-optional wedding. And I shared photos of my sister's fabulous hair today, so Jacqueline might find some hope. 

"Wow, that BRCA gene is a beast. I have been struggling because I can't pinpoint the reasons for mine. I'm like, is it something I wear, use, night shift, etc...you name it. It fills my cup to hear about a triple negative survivor...all my terrible fears may never happen."

Like most women with breast cancer, Jacqueline was searching for a reason why she developed this tumor. BRCA1 is lucky in many ways. I knew my probability of breast and ovarian cancer. I was screened regularly - and much younger than Jacqueline would ever have been approved to get. I was conscious but not crazy about my diet, alcohol consumption, and exercise. I had my children before I was 40 and nursed each of them for a year. I never smoked. There was nothing more I could do to prevent breast cancer, and I wasn't tortured by questions of why. Jacqueline definitely was dealing with the disorientation of being diagnosed with a disease she was too young to have. In the US, screening for breast cancer starts at age 40 - and it was age 50 until May 2023! 

"Everybody's got something. Our family's got cancer genes. Other families have other genes. None of us leave this world alive, so I'll choose our genes. It's now your thing, too - so fuck it and let's beat it, obliterate it, and move on. That's how I think, but I have those two role models."

"That's a great mindset. I never thought I would have a first diagnosis of an aggressive cancer and a second primary after my 38th birthday. Life is interesting. I like to look at this and make it my bitch. That's what my neighbor tells me every time he sees me."

"Tracey was like you (completely caught by surprise). I hoped to avoid it (cancer)...but knew it was likely."

We traded photos of our dogs. They're both South American street mutts. Lola is mine. Lalo is hers. Crazy.

"You were blind-sided."

"It felt that way for sure. My best friend is my ob-gyn, and she was a blessing because she was able to give me the news so gently and lovingly before I had to schedule an appointment to be told by this sterile radiologist. You have amazing people supporting and surrounding you; that's all you can hope for."

Jacqueline and I compared notes about the various medications we took to manage the side effects. We talked about our different cold caps. She was told she could shampoo 2-3 times per week, while I was told once weekly. I was told I could exercise, and she was told not to get her head too warm. We started talking about her job, and mine - as well as the crossroads cancer, put her on. She went on disability for the duration of her treatment while I ramped down the number of clients I would serve. We talked about my trips to see my boys and her love life.

"Still seeing the date?"

"Very casually. I am very honest with myself about life right now and what I have to offer. I don't feel like a normal 38-year-old, and some changes are hard to swallow. Not ideal for dating, but he's truly a nice man. It's important to feel normal sometimes."

"It's a lot, but people surprise you. I'm surprised every day. You never know who has an experience to offer that changes your day."

That entire conversation (and more) transpired on March 15. The day we met. Cancer makes fast friends and cancer teammates even faster.

Thrown Together in the Infusion Center:

Jacqueline and me found ourselves thrown together as if fate had conspired to make us teammates in this journey. As we sat across the room from each other, connected to IV lines titrating the life-saving poison into our bloodstreams, our bond was forged through the shared experience of treatment. I was shocked that Jacqueline was driving herself to and from therapy from Santa Cruz once a week. She didn't want to inconvenience her friends and family. Because Santa Cruz is so much further from UCSF than Burlingame, her driver couldn't do a portion of the day. 

Both of us were tolerating the carbo-taxol well. Jacqueline was having more anemia while my body was handling the initial chemo attack in surprising stride. It crossed my mind that this friendship might be stressed if we needed AC and the other didn't, but I liked Jacqueline and enjoyed our conversations. We'd deal with that situation if it transpired. 

Jacqueline:

"My MRI is next week after chemo, and I have accepted that I will be doing AC starting 4/19."

Joelle:

"The AC decision for me is still in flux. I'm ok with doing it, but if there's no cancer evident, I wouldn't mind skipping!"

Jacqueline:

"Oh, for sure, skip it! My understanding is that they don't care how you get to PCR as long as you get there. It's shrunk by half, so it's 2.5 x 3.5cm (Jacqueline's tumor was 7 cm, and mine was 9 mm) as of last week per palpation. Considering my MRI is at the 11-week mark, it is highly unlikely that it will shrink completely. It's ok. I surrender and keep hearing you say, 'I can do anything four times.' I really hope you can skip it."

Joelle:

"For sure, you can do anything four times. But you likely should not drive an hour home after AC. Insist on cinvati for that (if you aren't getting it already). You've been good with TC; hopefully, this bodes well for AC.

The risk for me with skipping AC is if the pathology after my bilateral and DIEP shows any cancer...I have to do it afterward, and they cannot "monitor" the response. I only skip AC if they cannot detect anything through scanning anyway. I'm going to ask if they'd consider a liquid biopsy (blood-based, and I know two providers) after the biopsy because that pretty much rules out any other evidence of cancer."  I've since learned that the liquid biopsies on the market today only detect later-stage cancers. My oncologist didn't feel it would be helpful.”

Jacqueline:

"Yeah, I plan to have someone drive me for the AC. It's just complicated because of the cold capping. The cold capper is my one visitor, and it's a lot to ask of people. But I have friends who are willing to help. I haven't heard that if you did well on taxol, I am favorable to tolerate AC. I really hope that's the case. 

Oh wow! You know so much. The liquid biopsy sounds promising. I was optimistic about skipping AC, but part of me feels it's the standard of care and safest option. But then another part of me wants to avoid that poison at all costs. They have a very thorough process for ruling out evidence of a tumor to move forward without AC, so that's positive. Your tumor is pretty small, so it's a good possibility that you can avoid it. I'm sorry you have to have a biopsy, though. Those really suck."

Joelle:

"Right now, I'm hoping that since Jo (Chien) couldn't palpate it, it bodes well. I want a PCR, and if that means AC, then AC it is!"

We both had anticipatory anxiety on chemo days, and both expressed gratitude for science and the care we received on infusion days. We were both excited that our tumors were responding to the chemo. We shared notes on scheduling the MRIs to confirm the obliteration of the cancer. My MRI moved to April 5 - and Jacqueline celebrated with me!

Jacqueline:

"Oh, yay! That's awesome!!! I am anticipating that you are on your way, if not to PCR. I'm so happy for you. I think my MRI is that day too, after chemo and I see Esserman after. What time is your MRI? I've been stressing bc I might have to stop my cold capping early for it, and I don't want to lose hair because of it. Wow, how vain."

Joelle:

"Not vain.

My MRI is at 730am.

I will wear my white cap (Dignicap cooling element) to Esserman for the 15-minute thaw."

Jacqueline:

"Oh, nice. That's ideal. Mine is at 2:30, and it interferes with the cold cap timing."

Joelle:

"You can wear a penguin cap around the hospital...."

Jacqueline got her MRI results - clinically cancer-free - before I did, right after our 11th infusion. Because she didn't have the genetic markers, the oncologist recommended that she skip the 12th infusion and start strengthening herself for her outpatient surgery. For me, I had the MRI and needed a fine needle aspiration of the tumor site and the lymph nodes to confirm cancer-free. 

APRIL 5, 2023

5:00 pm

"Just left her (Esserman). I (Joelle) think I was one patient ahead of you. You were right; they are going to skip AC for me. She's trying to organize surgery for May 5. You?"

"Mine is gone!!! Surgery is at the end of April. Not even doing Taxol this Wednesday. Same for you?"

9:20pm

Joelle:

"OMG. That's awesome. I am doing Wednesday (chemo). That's great news!"

Jacqueline:

"What did your MRI say? My oncologist is different from Jo."

Joelle:

Tumor gone. Lymph nodes look good, but I want an ultrasound to confirm. Need to meet with the plastic surgeon too. Laura met with me. Jo in Japan."

Jacqueline:

Tumor is gone!! Yaya! That's amazing!"

As treatment teammates, Jacqueline and I not only shared the same treatment schedule but also tackled the various pitches thrown our way together – chemotherapy, surgeries, and other medical procedures. Our conversations transcended the clinical aspects of our journey, delving into the nuances of our distinctive experiences. In each other, we found understanding and a source of strength that extended beyond the medications pumping through our veins.

As treatment teammates, Jacqueline and I supported each other beyond the infusion center, attending doctor appointments, providing shoulders to lean on during tough days, and celebrating small victories. Jacqueline shared her concerns about being single and the fear that cancer might hinder her dreams of having a family. My heart broke for her - and I encouraged her to assume that she would live a long life and could have a family if she wanted. Even in the face of varied challenges, a teammate makes the journey beyond bearable and even enjoyable.