Jessie has a tumor
That is how I found out, a text message. I was sitting on the couch watching Archer and my Tie Fighter text tone sounded. It was a text from my mom, no explanation, no lead-up, no follow-through, no period at the end of the sentence. It was simple. My sister had cancer.
Jessie had been in pain for awhile, probably about a year. It had been getting progressively worse despite her constant trips to the chiropractor and the massage therapist. Her ribs were out. Her shoulder ached and recently her hip had been so bad that she could barely walk. While she had been to multiple specialists, all convinced they could heal her in just a few sessions, she had never been to a doctor despite my constant protests.
“You need to go to a doctor,” I said for the millionth time. “You’re not getting better. You’re getting worse.”
“I don’t want to pay a doctor to tell me that I have a problem that I already know I have.”
“But, it’s peace of mind. At least you’ll know,” I argued.
“Meh,” she argued back defiantly and with finality.
I got the best birthday present. On my birthday I got a new house. It was seven blocks from my sister’s house. On my birthday, we both walked home. My potbellied pig and I were sharing a spare bedroom in her house at the time, waiting for my new house to close. That was a Friday. On Wednesday she was on crutches. On Friday, one week later, she was using a walker. The following Friday she was in a wheelchair.
When they find a tumor, they never know what it is without testing. She had to do MRIs, x rays, bloodwork and see three different specialists. She’s young, 35, most young people’s bone tumors are benign. They take it out. You heal. Easy-peasy. Her follow-up appointment with her doctor, the Oncology surgeon (cancer surgeon), was 18 days after her original MRI. We waited for 18 days to find out. We cried for 18 days. We cursed for 18 days. We prayed for 18 days. On the 17th day, OHSU sent her a medical report. It was heavily redacted and had no diagnosis. However, in the notes at the bottom, it said “Multiple Myeloma.” Sitting on the floor in her living room while we watched Anne with an E on the Netflix I googled those words with shaking hands on my phone, stealthily, because I didn’t want her to see.
It was bad.
It couldn’t be her diagnosis. Old people got Multiple Myeloma, almost exclusively. It had to be a mistake.
On the 18th day, Mom, Dad, Jessie, and I loaded into the cozy black Subaru. Phancypants is her name, because, of course, cars have names. It was a lovely day. The sun shone bright. It was warm, not summer yet, but a comfortable temperature. I took the day off work to join them. It was the last week of school so the libraries were closed anyway. Inventory could wait. I texted Jessie from right next to her, something we do a lot, mostly when mocking someone else in the room, mostly our mom and dad. We laughed.
“Well, although it’s unexpected, virtually unheard of for your age group, you have Multiple Myeloma. It’s a blood cancer. There are tumors, we call them lesions, on your bones. Many of them, hence ‘multiple.’ The pain in your ribs and shoulder are probably additional lesions. We will do a PET scan to find them all. We will not do surgery at this time so I will be referring you to a treatment doctor. They will determine the best course of action, but it will likely be a combination of radiation and chemotherapy.”
Mom scribbled notes furiously. Dad stood stoically in the corner. I stared at nothing. Jessie was strong and silent.
“Can she have kids if she’s getting radiation on her hip? Can we freeze her eggs?” I asked, after waiting awkwardly and not knowing if I should or not.
“That process takes months,” he answered, “she needs to start treatment now.”
Silent tears rolled down her face. Then mine. Then Mom’s. Then Dad’s.
It wasn’t as traumatic as it could have been had we not all googled it the day before. Finding out in the notes at the bottom of a medical report is not ideal, but at least we were all braced for the worst.
And so it began.
Treatment started in June. It was finally sunny and warm, but none of us noticed. The treatment was intense. She would receive radiation on her pelvis for 10 days. Five days in a row and then five days the next week. Simultaneously, she would begin chemotherapy. The first line of defense for Multiple Myeloma is called VRD. The V stands for Velcade, an injection that is administered at the hospital. It has all sorts of fun side effects like neuropathy and huge blisters and rashes. The R stands for Revlimid. Revlimid is a daily pill you take at home. It arrives in the mail, by courier. It has to be signed for. It costs $15,000 a month. It is a drug that inhibits cell growth. It stops the cancer from growing. It is a derivative of Thalidomide. The D is Dexamethasone. Dexamethasone is a steroid. While it helps your body tolerate all of the other things happening to it, it also makes you very aggressive and quick to anger. Relationships have been ruined by Dexamethasone. There is a whole support group. In addition, she was able to get on a trial. She is patient 1 for taking another drug, Daratumamab. It has been very successful in treating Multiple Myeloma, but it has never been used in the first round of treatment, until now. Jessie is the first patient.
The first time that she had a Daratumamab infusion, like all patients who take it, she had a reaction. Her appointment was at 8:00am. At 2:00am, the next day, we finally packed up and headed home. That’s how long it took to administer. Every time she had a reaction, they stopped, gave Benadryl, assessed, and then started again. We ended the night all huddled together watching phones in what was essentially a storage closet. They moved us to the storage room on 14K, to finish, when it was the time for the nurses in CHM to go home.
In less than a month, my sister went from working full time in a very physical job at Costco to being in a wheelchair. When I took her to chemo, something my parents and I rotated through, I had to push her to the bathroom, help her out of the chair, and give her privacy. Then re-enter, help her back into the chair, help her wash her hands, and take her back to her chemo chair. The process was painstakingly slow and she winced in pain at each new action. In total she had 33 visible lesions (holes, growths, and fractures) throughout her body on basically her entire skeletal system. For that part of the problem, she was given Zometa, a bone repair drug. I wanted to believe it was like Skele-grow from Harry Potter, but Madame Pomfrey would have had Jessie’s lesions fixed up in a couple days. She has had Zometa every month for two years and she still has holes in her bones. Zometa’s got nothing on Skele-grow.
A human body can only take so much. It was three days into her treatment when we made our first trip to the Emergency Room. Jessie had a temperature and was in excruciating pain. Not only that, but she had fainted. My mom was picking her up and she fell down the stairs in front of her house. Mom, Dad, and I all went. After quickly talking to the triage nurse, she was immediately admitted to Emergency and placed in a room. The Emergency Room process is not fast. She was interviewed by a variety of specialists. Scans were run. So. Many. Scans. Specialists came. It’s a teaching hospital, OHSU, so many students came too. We saw nearly 20 different doctors and nurses in our five hours in the ER. None of them knew what was wrong. They placed her in a cervical collar to protect her spine. She cried. She cried a lot. It broke my heart.
Eventually, she was admitted to 14K. This was the blood cancer wing of the Kohler building. It entirely deals with blood cancers and specializes in bone marrow and stem cell transplants. Despite no evidence that her spine was injured, the cervical collar remained. She could not swallow or eat properly. She could not sleep. There were so many tears. They would not let her take it off until they were certain. This is when we learned a scary truth. Multiple Myeloma could cross the blood-brain barrier. People could have Multiple Myeloma in their brain and spinal fluid. That could be causing the fainting. And, it was even less treatable than Multiple Myeloma in the blood.
To find out if the cancer had entered her spine, they had to do something they colloquially called a “spine poke.” This woman, a specialist, came in and made my sister, my very very sick sister, sit on the edge of her bed in a horribly uncomfortable position. She prepped the area to make it sterile, and poked, and poked, and poked, and poked, and poked, and poked, and kept saying, “Couldn’t get it.” Jessie was crying from pain. Sweat dripped off her face. I didn’t know what to do.
Luckily, at that moment, our cousin, Heather, an administrator at OHSU came in for a visit. She put on her boss voice and said, “Can someone else do this? This is not working.”
I have never been so thankful for my cousins in all my life.
The woman left. Another one arrived. It took her a few minutes to do the same thing. It was done. The results took eight hours. No Myeloma in her spinal fluid. Thank God. One less hurdle.
At this point, we settled into our routine. Chemotherapy happens in cycles. Jessie needed to do four cycles. The Revlimid came in the mail. Fourteen days on, seven days off. Fourteen days of poison. Three times a week she went to the hospital for Velcade. The particular part of OHSU that became our second home is called CHM – The Center for Hematologic Malignancies. I sometimes wonder if they call it that to be highly technical or if they call it that so that most people won’t know what it means. They are big words. Scary words. Words I, quite frankly, despise. She took Dex several times a week. She was taking upwards of ten medications every day at varying times. I made a calendar. I went to Costco to pick up prescriptions for her so often that the people who work there know my name and I know theirs. Thank you, Sylvia!
One night, it all went ugly again. Jessie was in so much pain. She had a fever. We met at the ER…again. This time my mom told my sister’s husband that he needed to come. Because, apparently, when your wife is in the ER, again, you need instructions that your presence is required. When he arrived he asked my dad, “So, why are we here?”
My dad took a deep breath and through gritted teeth managed to say, “Sharock, your wife has cancer. We’re are here because your wife has cancer.”
He was incredulous.
This hospital visit ended up being an eight-day admit. She was in the cardiac wing. They did not know how to deal with a cancer patient, but there were no beds on 14K. She was in extreme pain. The details are not super important except for one. Three times, not once, not twice, but three times, the same incompetent cardiac day nurse helped Jessie into the bathroom. She helped my wheel-chair bound sister who had a 9mm by 5mm hole in her pelvis and could not put any weight on her left leg, into the bathroom, closed the door and left. Three times my sister had to pull the bathroom emergency string to get her nurse to help her out of the bathroom. I am not a professional. I am not a nurse and know little about their training. That woman should not be a nurse. That being said, throughout this ordeal, Jessie has had the most kind, caring, compassionate, incredible, invested nurses I have ever encountered. From the nurses on 14K to the nurses who access her port and administer chemo at CHM, they have been some of the best human beings around.
Multiple Myeloma takes many forms. Because of this, treatment is unique to the body. Jessie specifically has Kappa Light Chain Myeloma. This means that the Kappa Light Chains in her blood reproduce at astronomical rates. We all have Kappa Lights in our blood. In a normal blood sample, a healthy person would have 0-19 Kappa Light Chains in their blood. When Jessie started treatment, her blood sample had 33,876 Kappa Light Chains. For diagnosis and treatment, it is also important to know the percentage of bone marrow that contains Myeloma cells. To determine this, a bone marrow biopsy is done. It is incredibly painful. They poke through your bone to collect the marrow within to study it. My sister is not affected by Fentanyl. This means that when they try to sedate her, at all, for basically any procedure, she stays awake and feels everything. Apparently, she’s a medical marvel. Her bone marrow was 99% Myeloma cells at diagnosis. 99% Cancer, 1% all the other things that are supposed to be in bone marrow.
Because her Myeloma was the particularly aggressive type and she is very young, a stem cell transplant was always in her future. It’s a little bit different than a bone marrow transplant, in that it’s a very specific part of the bone marrow. Also, for most patients, an autologous transplant is easier on the body. This is when a donor is not required. The specialists collect the patient’s own stem cells, clean them, and put them back in. However, this process. . . DESTROYS your body.
After four rounds of VRD, my sister prepared for her stem cell transplant (SCT). The heavy chemo, Melphalan, before the introduction of the new cells, and the new cells themselves, restart your immune system. It is such a violent restart that your childhood vaccinations disappear. Many MM patients call it their rebirth. During her VRD treatment, her Kappa Light Chains had gone from over 33,000 to 671. Her treatment was incredibly successful. However, I belong to several Myeloma communities and no other patient I have ever encountered, and I know thousands, has ever had an SCT with more than 50 or so Kappa Light Chains. In addition, at the time of harvest, her bone marrow still had 87% Myeloma cells. Compared to the other patients I’ve spoken to, that is unheard of. It just isn’t clean enough. Despite that, they proceeded. She was admitted to 14K, for a stay as long as it would take. They count the days on the whiteboard. The day they re-introduce your cleaned cells is day 0.
Days 0 through +4 went by pretty smoothly. That’s what most people said. Most people were right. I visited every day. So did my parents. Her husband did not. He couldn’t be bothered. He was too busy not having a job and not cleaning their house, paying their bills, or keeping up their yard work. On day +4, both of my parents got a bad cold. Once you get off the elevator on 14K, you have to pick up a phone and talk to the charge nurse to enter. You have to say what patient you are visiting and agree that you do not have any cold or flu symptoms before they buzz you in. Then you have to wash your hands as you enter for one minute. Then you have to sign in. In addition, if the patient has had any specific immune issues, you have to put on sterile clothing covers, a hat, shoe covers, and a mask. No child under 12 is allowed on 14K at all. My parents could not visit her until they were better.
On day +5, it got bad. If I had to guess, I would say my sister vomited 100 times that first day. Everything she has ever eaten in her entire life exited her body through any means necessary. I had to take all of her bedding and all of her clothes home for washing. She went through five outfits that first day. From then on, that was standard. So. Many. Loads. Of. Laundry. She was in the hospital until day +24. I drove from Sandy, OR to OHSU, just shy of 30 miles, usually during rush hour(s), every single day, rain or shine, many times arriving after 7 or 8 pm. I never stayed less than 2 hours. I mostly just sat. She was exhausted. She couldn’t even read. She couldn’t eat anything. She could barely stand. I made her walk. It was really hard. I graded papers. I read her news articles. We watched every single movie the hospital tv allowed and she watched things endlessly on her iPad. In total, she lost just shy of 40 pounds in those 24 days. She was not better. She was still vomiting multiple times each day. All of her hair fell out. She was frail. But, her immune system had come back enough for her to go home.
We brought two cars: one for her and one for her stuff. My parents were finally better. The nurses helped us load up and we headed home. Well, home to mom and dad’s house. Jessie still couldn’t be home. Her house had too many stairs and her husband was incapable of taking care of her properly. During her 24-day hospital stay, he visited four times.
Slowly, so so slowly, she started to feel better. She was walking with a cane now. No wheelchair. No walker. She was still really nauseous and had some serious triggers. While taking the strong Chemo that annihilates your body preparing it for the new stem cells, you have to eat ice continuously to avoid getting painful mouth sores. For hours she either needed to have ice in her mouth or a popsicle. For over a year, even a cube of ice in a drink made her gag and vomit. Her numbers continued to go down. She was healing. Everything was going exactly as predicted. She would be in remission soon, despite having such an aggressive case and despite having some pretty significant genetic markers for things not going well. It was a miracle.
On November 27, a month and a half after her SCT, my sister turned 36. It was a big day for me as well. I had taught at the same school, in the same classroom, for 12 years. My school district had sold my building and we moved into a new one mid-year. It was my first day in my new classroom in my new school. It was exciting and stressful. My mom knew that so she didn’t call me. She waited until 2:15. Then she sent the text:
We are in the Emergency Room. No one wanted to ruin your first day. Come when you can.
It was her birthday. She got there at 9am. When I arrived it was just after 4pm. My parents both sat stone-faced in the room. None of them had eaten at all. It happened while they were making breakfast.
Jessie was going to the bathroom and she fainted. It’s silly to talk about, but that’s what happened. She fainted and fell off the toilet. We laugh about it now. I even made a stick figure comic about it. When I arrived at the ER, she still had a bump on her head and an injured shoulder and leg. My dad heard a sound and went to check on her. They called the Myeloma specialists team and went in immediately. On the way to the car from the house, she fainted again.
When I arrived, my parents immediately went to the cafe to eat. They were starving and grumpy. Seven hours in the ER will do that. My sister had ordered food, Pizza, hours before, but it had never arrived. When it finally did, I lifted the cover for her, she took one sniff and barfed everywhere. Then she asked for water. It came with ice. I tried to pick it out, but I left a few pieces, because, at the time I didn’t understand how severe her aversion was. She took one drink and barfed all over. We finally got her test results.
Like they suspected, she had blood clots. She had been taking blood thinners since treatment began but had not been diligent as of late. It was a belly injection, super uncomfortable. Both her and my mom, who usually gave her the injection, had gotten lazy about it because she was better and because it sucked. The blood clots had moved through her lungs causing a pulmonary embolism and that is why she had fainted. She would have another hospital admit to 14K…on her birthday. Her husband never visited that night. My parents stayed until she was in her room, around 13 hours total. I stayed until 11pm. Her doctor brought her a cake. She couldn’t eat it. She would barf. It was really nice of her though.
The blood clots had severely impacted her left leg, the same one with a hole in the pelvis. She was using a walker again. Just when she was feeling better, and finally moving forward, she had to take several steps back. That and the still constant barfing made life pretty tricky.
The thing about my sister though is her incredible resolve. In all the time she has dealt with this blow, I have seen her cry maybe a handful of times. She allows herself to feel it. Then she moves on. People say to her, “How do you deal with it.”
She doesn’t even know what to say. “I just do,” she usually responds, “What else can I do?”
She has a friend from work who is also in treatment for Cancer. They commiserate. You never think about it, because people so rarely put themselves in others’ shoes, but often people who are sick end up comforting those around them who are not.
“So, you’re all better now though?” someone will ask.
“Well, no. Myeloma is treatable, but it is not curable. I will have it forever. Right now my body is responding to treatment. That is good . . .until it doesn’t,” she will try to explain without too much detail.
“So what then?” they naively ask.
“Well, then it’s pretty much hospice.”
Then the waterworks begin and she finds herself comforting some person she hardly knows because she has just told them her daily truth. For the record, it is no one’s job but yours to make you feel comfortable about uncomfortable things.
Once her body had sufficient time to heal, Jessie began cycling though VRD again. They wanted her to do two more cycles for her active treatment to be “complete.” That is a relative term. There is no real remission for Multiple Myeloma. It is always in your body. Doing it’s best to wreak havoc. Hiding, in wait, for when you let your guard down. The specialists at OHSU don’t even use the word remission. Patients are either in response or they are not. In other words, their bodies are responding to the treatment or it’s time to change up the treatment. Because we knew the routines, the last two cycles actually went by fairly fast. The active treatment was over. It was time for maintenance.
Myeloma is different for each patient. Some do not have an STC. Some do not respond to VRD and have to move on to different types of treatment. Luckily, every piece of Jessie’s treatment so far had been successful. She was in ‘very good response.’ Not complete response. Complete response, the Myeloma version of remission, means no excess M protein, an indicator of kidney issues that is directly related to Myeloma. It also means her Kappa Light Chains would need to be at 19 or lower. It would also mean that a bone marrow biopsy would show no Myeloma in her bone marrow. As active treatment ended, her team decided maintenance was best for Jessie. She would continue to take Revlimid, but a much lower dose, 21 of 28 days. A new cycle. She would continue to get Daratumumab, via infusion, once a month. She would continue to get Zometa, an additional infusion, once a month. Then we would see.
On May 3, 2018, one year and two days after her doctor’s pulled her from work, my sister returned to work at Costco. Previously, she had worked full time, mostly in RTV (Return to Vendor) and a few hours a day on the front end. She would return to RTV, with limitations. She decided, with doctor’s approval, to work five 5 hour shifts each week. She did. . . for one week. Then she got very very sick and was out for another three weeks. Her immune system will never be able to fight off disease like a healthy person’s would. She will forever be susceptible to the cooties that others force on her.
She tried again, this time starting out more slowly. She did three 4 hour shifts. Success. She stayed on this path slowly adding hours. It worked. She was back at work. Why? To feel human. Many people with Myeloma never return. They stay out on permanent disability and use medicare for insurance. Jessie knows, barring a miracle cure, that this is her future. She refuses to let it be her present.
Also in May, Jessie told her husband that they were going to get divorced. He was shocked. Four days after their conversation, he moved to Texas. He left behind their house, where he had been living alone for over a year, in complete disarray. Have you ever seen an episode of hoarders? The first time I walked into the house after having not been there for a year, I had to walk outside and vomit. I was pregnant at the time, so sensitive to smells, but it was that bad. I met Jessie there. She was in tears. It was just so much. On top of everything else, now we had to deal with this too.
We dug in. My mom, my dad, Jessie and I worked day in and day out. My parents spent thousands of dollars. We filled a dumpster. We did hours and hours and hours and hours of yard work. We painted. We steam cleaned. We took loads to Goodwill and Red, White, and Blue. My dad did electrical work. My dad and my uncle put in a new set of French doors. We changed out fixtures. We moved furniture. My parents worked on Jessie’s house like a full-time job for months. The amount of time they spent getting it ready to sell is profound. Finally, finally, it was done. My cousin, Megan, listed it. It was time to move on.
The plan had been for Jessie to move in with me. But things got a little bit tricky when I got pregnant. Jessie’s chemo, Revlimid, is dangerous for pregnant women. Her doctors cautioned her against moving in. Although I would never handle it, they did not want her taking the risk.
We waited.
The babies were due September 13. Her house sold in July. My friends, the CRMS moving crew, moved all of her stuff into my house. As you can imagine, the cancer patient and pregnant lady moving crew was pretty weak sauce and needed some assistance. We are forever grateful for our CRMS family.
Jessie moved in at the beginning of August. We had to readjust to living together. Making two complete households into one requires a lot of negotiation and multiple garage sales. We had two of everything. We still have two of some things. Again, the CRMS crew stepped up and helped us get our garage sales off the ground. Neither of us could move furniture. We did pretty well though. Our house was almost a home.
On September 7, the babies made their grand entrance. We were now a family of four. Life got exciting and infinitely more complete.
In 17 days, it will be two years since Jessie’s STC. Today, she still works in RTV. She still works 5 hour shifts, but occasionally, when they are available, and it’s not a chemo day, she works a full 8 hour shift. She gets up every weekday morning whenever the babies start cooing. She is their primary caregiver while I am at work. They don’t know she’s their auntie. She is their everything. They don’t know that she’s sick, will always be sick, because they see no weakness in her. They don’t know what she’s been through. They just know how amazing she is to them every hour of every day.
She had chemo this week. She’s still not technically in complete response, but she might be. They keep making her do one more test to find out. And it keeps being so close but not quite there. Her last Kappa Light Chain count was 5.4. Her last bone marrow biopsy showed 0% Myeloma in her bone marrow. Her M protein fluctuates between none and a trace. It’s that trace that is causing the hold up. A trace means very good response, not complete response.
Is she back to her old self? No. She is fatigued. She has brain fog, a common complaint of chemo patients. She needs so much sleep. Her appetite has changed. She cannot do the things that she used to love to do.
But, she lives. She fights. She loves. She laughs. She holds and comforts and snuggles and tickles her niece and nephew. We talk politics. We cry about the state of things. My best friend is still with me, fighting the warrior’s fight, for as long as she can.
Heroes don’t always get a happily ever after, but real heroes don’t need it. They find their happiness in the moments, all of the moments, that the rest of us take for granted.
a word after a word after a word is power 