Grief Connects Us

by Joseph D. Stern

  Today, I was feeling fearful, and [Sherry, the chaplain] helped walk me back to my place of peace. She said that fear is (1) thoughts and (2) listening to the thoughts, which lead to (3) fear. She said the antidote is to step aside (I am rephrasing) and go back inside—that inside is the garden that needs to be cultivated, seeds planted, and that therein lies the peace.

  I am mad at Hitler all over again. I think the notes must be somewhere else, on a scrap of paper? I know I took notes after meeting with the rabbi, Janet, at Sherry’s suggestion. The discussions began in conversation with Diane about the shockingly low number, a mere thirteen million, of Jews in the world. Many of those are Sephardic. Fewer are Ashkenazi. How, if Hitler had not wiped out six million, there would be so many more Jews in the world now. To my astonishment, there is no match for me in the database of twenty-four million.

  —FEBRUARY 24, 2015

  I am feeling so scared these days. Scared for the transplant and scared about after. I am scared that my p53 gene is mutated, and scared that I will be getting total body radiation. I am terrified of getting another problem after I resolve this one. So utterly and completely unfair.

  Jody said I need the radiation, no discussion. He had also said way back in the beginning that if I didn’t do what they told me and tried some Eastern approach, as is so much more my orientation, he would come to Santa Monica and drag me there himself.

  —MARCH 4, 2015

  I had to return to North Carolina before any of the details of transplantation had been worked out. It would end up taking until early March before a final decision about the transplant donor had been made. They eliminated the MUD (matched unrelated donor) for reasons we did not fully understand and were considering Madeleine’s or Nick’s cells, or cord blood samples that had been found to be a good potential match. Cord blood refers to banked umbilical cord blood from unrelated newborns (unless the mother has chosen to bank cord blood at the time of birth, which Victoria had not done). Cord blood is full of stem cells, which can be amplified and have been shown to be an effective option in the absence of matched donors.

  In the end, Dr. O’Donnell announced that the transplant committee at City of Hope had decided on Nick as the donor and they wanted to prepare him for donation at the end of March. The pretransplant conditioning for Victoria would take place at the same time, with transplantation scheduled in early April. This latest turn was jarring, since Nick was not an exact match and he was significantly younger than most donors.

  Victoria had completed one round of chemotherapy, followed by a predictable bottoming out of her blood counts. Dr. O’Donnell waited for these to rebound so that Victoria could undergo a bone marrow biopsy to determine the effectiveness of the chemotherapy drugs. If there was no evidence of leukemic cells in her biopsy, then it would be possible for her to return home for a week or two before readmission to the hospital for a second round of conditioning chemotherapy. Once she made it through this course, she would be ready for the transplant. I was advised to return a week or two after the transplant, since this would be the most precarious time for my sister. With Pat’s blessing this time, I booked my flights. I was relieved to know that I could be of use.

  The bone marrow results were provisionally encouraging, with abundant monocytes and next to no blasts. They let Victoria go home for almost two weeks before she was readmitted to Dr. Fischer’s service at Saint John’s for another round of chemotherapy. This would be far less disruptive than readmitting her all the way across LA. Genetic testing had to be performed on the bone marrow sample, so Victoria was called back to City of Hope for another biopsy to determine whether the few blasts that were present were immature normal white blood cells, which start out life as blasts, or leukemic cells with a deletion of chromosome 7, which would indicate that the chemotherapy had not worked at all.

  The results suggested the leukemia was in check, so Victoria was allowed to take her next chemotherapy at Saint John’s prior to being discharged home. If all went well, she would at last be released home to rest before her transplant. She sent me a celebratory text in all caps pointing out that this was the first time she had been able to leave the hospital in ten weeks.

  CHAPTER FIVE

  transplant/second visit

  Poor, sweet Nick, I am so very sorry to have to drag you into this. Poor is the wrong word though—I know he will be fine, but I do regret having to involve him. He can do this—both emotionally and physically. Kathryn was so funny and so right when she said Nick would have a great essay for his college apps. And her comment was made before he became the Donor!

  I had two burning questions for Dr. O: Nick and radiation. I will feel so much better if I can get the targeted radiation—targeting my bone marrow, not my entire body.

  I have done CT studies, X-rays, heart studies, and a pulmonary study where I had to blow into a plastic tube, hold my breath, etc., to measure my lung function. Pat and I attended a class describing what to expect during the BMT [bone marrow transplant]. We had a consult with Meredith, the social worker who works with Dr. O. … I very much appreciate Meredith’s no-nonsense approach, and I like her very much …

  I told her I could hear some of the stuff I should watch out for but said that I didn’t want to hear about death. We spoke, briefly, about how you can sometimes spend time in the ICU during your transplant, you can get rehospitalized during the hundred days, that you always puke … And then, at the very end, she just had to throw in a “sometimes people pass away …” I should have called her on it. Perhaps it is a liability thing where you need to be informed?

  And she mentioned risk of relapse and recurrence. Okay, that is not an option. One year, two and a half years, and five years are important milestones. If you get to two and a half years, apparently you only have a 5 percent chance of recurrence.

  I am having yet another bone marrow biopsy this Friday. I am definitely anxious about that. I feel fine. There is no reason to worry, but it does have my attention. Of course, my bone marrow is often twitching, but I have learned that happens when it comes back to life—throughout this process.

  —MARCH 18, 2015

  I am still in stunned shock after yesterday. So much. I saw a glimmer of just how beat up I am going to be. First of all, we had Nick in tow, so Pat really had to focus on him. This is intense stuff with which he has to deal. Pat said that all day long people were telling Nick what a hero he is. The people helping and testing him went out of their way to treat him really well.

  My day began with my fourth bone marrow biopsy—or was it my fifth? My low back is super-unhappy this morning. Dr. O came to visit me in recovery. She said they will let me do the targeted radiation. It turns out she had to lobby for this and the head of the radiology department had to approve. They have been doing targeted radiation for ten years, and I believe the head of radiology created the method, but they have never used it on someone in my particular situation. I believe it has been used previously with sicker patients, people in much worse shape than I. I believe more people will do this in the future. This all came about because Jody had read about this and thought it was better for me …

  … I pushed for it, and then all of a sudden there I was, being measured for it—and it is horrible. They created a mold for my legs to hold them in place, and fitted a mask to my face that gets screwed into place, bolting me to the table. The mask fits so snugly that I now have bright red dots—bruises—on my chin. These are from the circles in the mask through which I will be able to breathe.

  I look like I’m wearing Klingon makeup from a Star Trek episode! And they tattooed my skin in seven places! When one of the staff said he was going to tattoo me, I thought he was joking; he wasn’t. All of this is to secure me into position so I will always be in this exact same configuration so that the radiation rays will always hit the exact same marks. It took one and a half hours to fit me. It was freaky and awful.

  I pushed to make this happen, so now I’ve just got to trust that it makes mor
e sense. Although some elements might be tougher up front, I am hoping that it will be far better for my body in the long run.

  As for my dear, sweet son, I was very proud of him. I said to Nick that it is kind of his choice how hard or not hard this is—that’s really the point of this book [Victoria’s goal for her journal was to see it published], that there is a valuable life lesson in mastering this concept [of how hard things must be]. I said to him that it is true in tennis as well—that he can continue to complain about Jeremiah, his doubles partner, or he can trust that they are improving and growing together as a team and that they will improve over time. The first day we took Nick to City of Hope for testing, we had to stop the car for an emergency bathroom break, as he had gotten himself in quite a state. He was infinitely calmer on our drive back yesterday morning.

  They took twelve vials of his blood, poked and prodded him a lot, and he handled it fine. I feel like he really took my advice to heart. It was so much easier on him!

  —MARCH 21, 2015

  I do think there is something larger at work here—something to do with a life calling / a role I will play. Not only do I need to stick around for my family, but also I have much still to offer. Today, saying goodbye to the boys as they set off … with their five cousins and one amazing Aunt Barb, I was less emotional than anticipated. They were crying and hugging me tightly—whereas I was memorizing their feel, their touch, their sweet breath against my cheek, their salty tears. I was memorizing every bit of them in case I ever need to recall these sensations as a reminder of what, precisely, I intend to stick around for. They need me; Pat does, too. And I need them.

  —MARCH 28, 2015

  Dr. O’Donnell said the slides came back from the bone marrow biopsy and they detected 1 percent of the “bad actor” 7 chromosomes—the monosomy 7. They are supposed to be in pairs, and in some I am missing one half of the pair.

  My head is reeling with this new info. Would this have happened if I’d gone to transplant faster? Or was it just in hiding before? And how does this impact things? Scary. I’m so sad and mad. And yet, is it a surprise? I have been told and have known that the monosomy 7 chromosomal abnormality is of a trickier variety with a higher chance of recurrence, so isn’t this just showing me how that is the case? This is certainly showing me how necessary is the transplant.

  And there is no reason not to assume that the transplant won’t eradicate every last “bad actor” cell. The preparation should get rid of the bad cells, as it will wipe out my bone marrow entirely. And the new bone marrow should fight off any errant cell. Right?

  I had some chocolate just now, but that didn’t really help. I thought about scotch, but I refrained. I’m very disciplined.

  —MARCH 30, 2015

  After three months, everything was set for Victoria’s transplant. Nick rose to the occasion, and Joe and Deanna, his uncle and aunt, gave him daily shots to stimulate production of stem cells. Just as Victoria had developed aches and a fever with the onset of her leukemia, Nick developed bone pain, but other than missing a few days of school he managed without any untoward complications.

  Most doctors, including hematologists and oncologists, have limited exposure to bone marrow transplantation; this is considered a highly specialized, technical, pioneering area of medicine. Dr. Fischer answered candidly that he was out of his depth when I asked him specific questions about my sister’s impending transplant. There are a few areas of medicine that tend to provoke fear in most doctors. Neurosurgery is one; burn medicine is another; and transplant, in particular bone marrow transplant, is a third. This is generally a quaternary service where even large health systems refer patients to specialized centers. While I am comfortable in the world of neurosurgery, I share a comparable fear of bone marrow transplantation and burn medicine.

  Victoria was admitted to City of Hope’s transplant unit on March 31. She was given three rounds of high-dose chemotherapy to kill off her bone marrow, which caused nausea and tremendous fatigue. Palifermin, a drug to protect her mucosal surfaces, was administered because the chemotherapy and radiation could make her slough off her mucosal lining (mouth and intestinal tract) and develop ulcers. Radiation to her entire skeleton would follow with TomoTherapy. TomoTherapy is a CT-driven high-dose radiation therapy that would target her skeleton and spare her solid organs, such as her brain, heart, and intestines.

  (Victoria: On April 9, 2015, a day before the transplant, the day of Nick’s apheresis, I must have written him this note.)

  My Darling Nick,

  Thank you so much for what you are doing for me. It is a phenomenal gift. You are brave and strong and I couldn’t be more proud of you. What a strong and loving son! I couldn’t ask for anything more.

  I love you forever,

  Mom

  On the back was his reply:

  Hey, Mom,

  This isn’t so bad. It’s totally worth it. ILU so much.

  Nick

  PS: Sorry about my handwriting … writing is harder! ILU!

  (Writing was harder since he’d been hooked up to machines all day.)

  The transplant took place on April 10, after a brutal week of preparation. They had hoped to extract 5 million cells from Nick, but he produced 16.2 million. The stem cells looked like a milky suspension of cloudy blood in an IV bag. Over a few hours the new cells were sent through Victoria’s PICC line, slowly incorporating into her system. She was given a new birthday of April 10.

  TRANSPLANT DAY

  Today is my new birthday. It is here. I began my day feeling dreadful after the fourth night of fever and chills. I had a CT scan, which confirmed fluid in my lungs. I am now taking two new antibiotics. My fever last night was 102.5°. My bedding and clothing were drenched and required multiple changings.

  Pat put his head on my chest and played “Ooh Child,” by the Five Stairsteps, and wept. We cried together.

  I’m feeling better than earlier now. We are waiting for “the bag,” which feels a tad anticlimactic.

  They needed 5 million stem cells from Nick, would have settled with 4 million, but he produced 16.2 million! Dr. O said that is enough for three people! They are going to freeze half of his cells in case I should ever need more down the road. (No, thank you—won’t be needed.) Nick’s unfrozen cells are en route as we speak.

  —APRIL 10, 2015

  She continued to spike fevers each night, along with drenching sweats, shivering chills, and rigors. She developed a rash on her chest, possibly due to fevers or a side effect of the radiation treatments. She was restarted on multiple intravenous antibiotics along with antirejection drugs around the clock. She was not, by any means, out of the woods.

  I arrived during the third week of April to relieve Pat and sit by my sister’s bedside. I was more apprehensive than I had been in January because I didn’t know what to expect. In the hallway I scrubbed my hands, gowned, and gloved, and then entered her room. Victoria was confined to her bed. All color had drained from her face. She was impossibly pale. Though she was battling continuous nausea and aching throughout her body, she tried to muster up some enthusiasm for my visit, but it was clearly an effort. She had no appetite because food only made her nausea worse. Simple things like making it to the bathroom required focused energy, as if she were climbing a mountain at high altitude. She was easily winded, profoundly weak.

  Her high fevers persisted, so Dr. O’Donnell ordered a chest CT scan that showed a fluid collection in her lungs. Her team was concerned about the possibility of a fungal infection in her chest, so the next day she underwent a bronchoscopy. While Victoria was sedated, a pulmonologist inserted a fine tube into her lung and took tissue samples and washings to assess for signs of infection. They didn’t find any signs of serious infection. Surprisingly, after that procedure her fever broke. She continued with labored breathing and required frequent inhalers, but no supplemental oxygen. Gradually, the shortness of breath abated and her breathing began to return to normal. This coincided with the addition of a sec
ond antifungal drug to her IV cocktail of medications.

  Each day her white blood count climbed, which is a sign of engraftment, implying that the transplant was starting to take. By April 26, the count had returned to 2.0 from barely detectable. Presumably her leukemia was gone, so they had started Filgrastim to encourage white cell production. However, on April 29, she developed fevers up to 102.5° again and received a transfusion of red cells and platelets. She experienced chest pressure and was started on supplemental oxygen. They administered steroids for her pain, as well as diuretics for all the intravenous fluids she was receiving so she would be able to get rid of the excess, which was causing puffiness in her legs and bloating.

  Watching someone undergoing treatment for leukemia after a bone marrow transplant is like watching a cooking show from hell. Sometimes in the hospital, particularly in the ER, I felt like a short-order cook, but this was ridiculous. Victoria had a seemingly unlimited number of intravenous infusions, including three antibiotics; two antifungal drugs; two antiviral medications; drugs to prevent rejection; steroids; and diuretics—not to mention blood products of platelets and red cells, and drugs like Filgrastim. She spent most of her time in bed, mired in a listless state of quasi-awareness and pain. Despite all of this, her spirits remained strong and upbeat. To my astonishment, she was never short-tempered or self-pitying. She was cooperative and polite to the nurses and aides, despite frequent interruptions at all times of the day and night. I was proud of the way my sister was handling herself, knowing the enormous stress and uncertainty she was facing. She remained determined to beat leukemia and girded herself for everything that was being thrown at her.