I owe this community so many updates. There are fourteen half finished drafts since May 2016. I will wrap those up some time. May was when things got hard. The cancer got more aggressive and we were focused on our next steps.Mama Pham passed away on September 12th, 2016 at Stanford Cancer Center with family and a caring team of doctors by her side. We had three years together of quality time, fighting the disease, and disrupting hospital and healthcare bureaucracy. I am thankful for the time together. Today is her 1/2 year death anniversary and I am still sifting through it all, and still very committed to the mission of cancer sidekicking and beating Leukemia. For now, giving myself a little more time to remember and honor Mama Pham.
It takes a village
Well, a team of doctors.Reflecting on this whole week, we have had meetings with the following departments and doctor:
- Stanford Ear Nose Throat (ENT): the tracheotomy tube to assist with breathing, and to take a biopsy of the throat.
- Stanford Radiology: MRI and PET CT of the throat area
- Stanford Blood and Marrow Transplant (BMT): to discuss graft vs. host disease and effects of transplant on relapse
- Stanford Hematology Oncology: to discuss options for Leukemia growth in throat area and treatment options- radiation, chemo, do nothing
- Stanford Radiation Oncology: to discuss options for radiation of the throat area
- Stanford Palliative Care: to discuss ways to continue some sort of normal lifestyle while undergoing treatment
- City of Hope Oncology: In addition, since Radiation Oncology is a new addition, we needed to set up a new patient appointment even though we have been at Stanford for over a year. Radiation Oncology requested the DVH - Dosage Volume Histogram of past radiation treatments. This did not exist in the records City of Hope sent to Stanford last year. I have used Grand Rounds and Picnic Health to help us gather medical records in the past, and they did not have it either. It appears that Radiation Oncology has its own data system and even though a full medical history has been requested in the past, their records were not included. Calling the Medical Records office at City of Hope took too long, so I contacted our oncologist directly who helped us get records over to Stanford. Thank you City of Hope!
I spent about 2 hours one morning coordinating the appointments around other commitments, optimizing the timing of each one. Palliative Care is scheduled after the meetings with Hematology and BMT. And Radiation Oncology is scheduled last since that is a final resort and we just want that team on standby in case we want to go down that path. Now on to gathering more data, more debugging, and finding a solution!
Positron emission tomography–computed tomography (PET CT)!
Today I learned that the radioactive glucose used for PET scans is called Fludeoxyglucose aka Fluorine-18 aka 18F. Only a tiny bit is injected via IV and the patient rests for 45 minutes before going in for a 23 minute scan. We are going to see the extent of cancerous, abnormal cells in the body. Mama Pham was considered radioactive for a few hours!
Busy week at Stanford!
As with all cancer battles, side effect maintenance is a must. This week in Side Effects, we have a closing throat, dry eyes, sore and dry both, and peripheral neuropathy. Our various doctors and specialist appointments are usually scattered, but looking at our schedule for next week, I found that we will be at Stanford almost every day (had to clear my Wednesday for a few immobile work commitments) to comprehensively cover everything that needs to be addressed! I found this view rather interesting and wanted to share.Sunday MRI of the brain and larynx: About 8 months ago when my mom lost all her hair after chemo, she hit her head pretty hard on the edge of a table. At that time, it was painful but the pain slowly went away. Plus, we had other things to worry about, like getting rid of the cancer. Then recently, the head pain returned. We don't know if it is related to the small trauma, or something else (like the repeated chemo in her spine or delayed side effects). After several visits to the oncologist and PCP and persistent pain, we all decided an MRI would be best. Then while there, since she also is experiencing breathing problems (had to take a trip to the ER at one point, but that's for another post), we added on an MRI of the larynx. We think her throat is operating at 50% capacity due to some build up (maybe protein) of sorts. What this means is that the moment she has a cold or slight allergies, her throat basically closes up making it hard or almost impossible to breathe. For most of us, having some allergies or phlegm in our throats are no big deal since the throat has the capacity to handle it.Monday Routine monthly oncology visit and labs: We see our bone marrow specialist once a month to check blood counts, overall health, and progression of Graft vs. Host disease. This usually means a quick health check, making sure blood counts are good, and adjusting medications (like prednisone and tacrolimus) as needed. And if we have time, a free added chair massage courtesy of Stanford Cancer Center!Tuesday morning Eye Doctor and afternoon Physical Therapy: Both these visits are to manage side effects of the chemotherapy, radiation, and donor lymphocyte infusion (DLI). The DLI has cause graft vs. host disease in the eyes, causing them to be very dry and producing almost zero tears. The ophthalmologist has put in tear duct plugs to try to retain whatever tears her eyes do make, hoping that one day the tears will return. We see him about every 6 weeks to check in. The physical therapy appointment is in response to the peripheral neuropathy and weakness caused by the chemotherapy (most likely the vincristine). My mom loves her physical therapist Shannon, and both the strengthening exercises as well as the conversations they have help improve her health. She used to not be able to get up out of a chair or close the trunk of a car. Now she can do all those things.Wednesday break day!Thursday pre-op visit for the throat biopsy: Last Monday, we went to the ER because my mom couldn't breath. Her throat had almost closed up entirely. With a camera in the throat, we discovered that some build up has been causing the throat to operation at about 1/2 capacity, making air intake harder. Her oxygen levels come back at 100% and her lungs are clear (Xray and listening), so we will do a biopsy to see what the build-up might be, and if there is a way to manage it. One of the ENT doctors think it might be Amyloidosis of the throat, but that is usually only seen in AML patients, not ALL (What my mom had). The oncologist and I are skeptical of the amyloidosis diagnosis, but we all agreed that a biopsy of the throat, taking about a 1-2mm sample, will help us decide.Friday biopsy day!One question I always ask at every step is What are the side effects of these procedures. If the MRI and biopsy will cause other complications, we need to know so we can make informed decisions about whether or not to proceed. We've been told that the side effects at trivial and the danger of not finding out the cause of some of these problems may be worse. It is always a trade-off of waiting to see if the body will take care of itself, or if we need to intervene is some other way. In this case, we shall proceed with more modern medicine interventions.
Great labs!
Another beautiful day at Stanford Cancer Center. 8.4 WBC, 12.2 Hemoglobin, 158 platelets! Hopefully gone forever are the days we anxiously await lab results to tell us if we have to stay for a blood transfusion or platelet transfusion. Those Leukemia blasts are staying away. On to side effect management of GVHD and neuropathy. Another beast in its own right, but experimenting different ways to pair food, exercises, vitamins, herbs, etc, with pills to get back to normal. Still crazy impressed with my mom's ability to make delicious means without working tear ducts (no crying when cutting onions!) or saliva glands or taste buds! Ha. Resilience FTW. Beating Leukemia.
World Cancer Day.
It is World Cancer Day. It is not always easy, but grateful for the teams of friends, family, doctors, nurses, schedulers, and advocates who have been with us on this 2.5 year journey. And for the opportunity to apply what I've learned here to something much bigger.All you cancer survivors, rock on! All you in the battle, it sucks, fight on and hang in there. And all you caregivers, I completely understand. You rock so very much.
Fried Rice without Normal Taste Buds
I recently brought Mama Pham’s Fried Rice to a brunch with some friends. Someone requested the recipe because THE FRIED RICE IS DELICIOUS, so I thought I’d post the totally ambiguous recipe here too. Cooking for others has greatly helped my mom during her recovery process, and despite not having working taste buds because of treatment plans the last two years, her cooking experience alone has allowed her to continue making delicious dishes. I happily do the final taste test before sharing with others, although we rarely need to make adjustments. Happy Cooking!Mama Pham’s Fried RiceWarning: definitely not a science, and totally ambiguous! Nothing is exact in our house, mostly made with love, and recipes are a dash of this and a little of that. Fried rice is the dish we usually make with leftovers in the home. My mom no longer has working taste buds due to radiation (they’ll return one day!), so I find it rather impressive that her final products are still always so great.Ingredients:OnionAny combination of: chicken, pork, chinese sausage (many different brands)EggsCarrotsPeasRiceSaltPepperSugarOyster SauceSoy Sauce or Seasoning Sauce - We use Seasoning Sauce usually.Sesame OilMethod:THE ONION!About 1/4 onion (yellow or white) choppedSauté in preferred oil (olive or canola) until lucentKeep medium to medium low heatADD THE PRE-COOKED MEATS!Any number of the following meats (or no meat!):Left over cooked Chicken choppedBoiled Pork choppedXa Xiu - Roast Pork - Roast PorkLap Xuong (most common) - you can find this at any Ranch 99 or Asian store. Almost all fried rice dishes have this.ADD THE EGGMix together about four eggs, don't need to be mixed thoroughly. Cook into a pancake like shape. When done cooking, cut this up into small bits. You can also scramble your egg, but we don't like that consistency as much in my fried rice. Too mushy.ADD THE VEGGIESFrozen or fresh. Thaw and heat before putting into fried rice. Make sure no liquids remain, or else rice will be soggy:Carrots - 1/2 cup - more or less as you desirePeas - 1/2 cup - more or less as you desireADD THE RICE!Day old jasmine rice is best. New rice works too but is usually a little too mushy. Adjust depending on how much rice you have left or how many people you want to serve. For Rebel Alliance breakfast, we used 6 cups of cooked rice.ADD THE FLAVORS!dash Saltdash Sugardash PepperSoy Sauce or Seasoning Sauce (2 tablespoons)Sesame Oil (1 teaspoon)Oyster Sauce (1 tablespoon)Keep on low fire and continue to toss until you are happy with the consistency and dryness of the fried rice.Happy Cooking!
Happy New Year!
2015 for us was a year of Leukemia relapse, more treatment, new hospitals, new doctors, testing new treatments, and finally the joyful news of another round of cancer-free remission!Cheers to more joyful days for all, continued support, figuring out how to make health data interoperability happen, getting our health data back, continued world wide collaboration and knowledge sharing, and the defeat of cancer.
Appointments
Today, I thought to myself: we only have three doctors' visits this week, and they are all check ups or physical therapy! So thankful that we no longer have weeks of 10+ tubes of lab draws, waiting on results, getting blood or platelet transfusions, and chemo. We are in the good appointments phase!
Perseverance
Everyday, no matter how much pain, my mom gets up, cooks food, and does her best to do her exercises. Occasionally, I catch myself thinking "I wish she'd eat more" or "I wish she'd do more exercises" then I'll look over and watch her trying her best on the trampoline or trying her best to do the Physical Therapy home exercises. Her perseverance is quite inspirational.
Physical Therapy and Kindess
Some days, the acts of kindness of strangers is overwhelming. Many thanks to Cheryl, a physical therapist across the country, who sent my mom a personalized Physical Therapy package in the mail after learning about the weakness and weight loss she has experienced after the last round of chemotherapy and Donor Lymphocyte Infusion.Up until February of this year, my mom has started to gain weight, slowly returning to normal. Then we heard news of the relapse. That was when we went through three more rounds of chemotherapy, and a Donor Lymphocyte Infusion. All caused various side effects that made it harder to eat including nausea, throat constriction, mouth sores, and loss of taste. Then she had really bad swelling of the feet, which made it difficult to walk and exercise. The combination of both resulted in a greater loss in weight, bringing her down to 82lbs. In February, she had slowly climbed back up to 94lbs, which was a great accomplishment! Before cancer, she was 125lbs and very active. We will slowly get there again, especially with help from people like Cheryl!
Graft vs. Host Disease (GVHD)... it is here!
Well, we knew this was coming, but had no idea how bad or good it would get. When my mom got her stem cell transplant last January 2014, she showed zero signs of graft vs. host disease. That was great because she didn't have the crazy symptoms, but some doctors believe the lack of GVHD could have meant that the stem cells were not doing that much fighting. What is GVHD, you ask? It is when the new cells attack the body (the host). My uncle's healthy white blood cells, in the process of fighting the Leukemia, also attacks the skin, the digestive tract, the mouth, and potentially other organs. Her current symptoms:
- Dry, crusty eyes. In the evenings, her eyes start getting very crusty. By the morning, it is difficult to open her eyes. We are trying Refresh Tears to help lubricate her eyes and lessen irriration
- Skin Rashes. Most of her upper body is covered in rashes. We have found fresh aloe to help with this. We have three Aloe Vera plants out front! Horray!
- Dry mouth and throat. No matter how much water she drinks, her mouth and throat feels dry. This is definitely an attack of the mouth. We have tried salt washes and coconut oil but nothing works. Today, the doctor subscribed a dexamethasone mouth wash to help with the irritation and inflammation.
We want some GVHD to happen to show that the infused cells are working (doesn't seem very scientific, I know). We do not have any real way to show that the donor infused lymphocyte worked. All we can test for is if it does NOT work and we start seeing Leukemia cells again. So for now, to manage the symptoms in the body, we are doing the following:
- artificial tears
- dexamethasone mouth wash
- aloe on the skin
- keeping my mom busy walks, dinner parties, and excuses to make food!
Donor Lymphocyte Infusion Day!
IT IS MINI-TRANSPLANT DAY (aka Donor Lymphocyte Infusion)!!!How I like to explain this infusion: There are two bad things going on right now. The bone marrow is broken so it makes bad white blood cells. So we are dealing with an evil army, and a broken factory that makes an evil army. The stem cell transplant in the past didn't work to fix the broken factory, so now we're taking a new strategy. Instead of doing all stem cells, we are extracting just the lymphocytes. These lymphocytes like the top notch seal team white blood cells. The one downside is that these fighters are so aggressive that sometimes they also fight other things like the liver and kidney and skin in the process. They're not smart enough to always distinguish. Anyways, we are going to infuse the body with these aggressive good imported fighters, and they are going to attacked any leftover evil army, fix the broken, factory, and restore order to all!A quick history: Since August 2013, we have done 7 rounds of chemo, 6 spinal taps with chemo, policy hacking to get blood samples sent from Vietnam, radiation, a stem cell transplant, kidney stone removal, and blood transfusions across 5 hospitals in 5 different cities. For a while, we celebrated while the Leukemia went a way and those bad guys disappeared. In February 2015, we found out they must have been hibernating because they came back in full force. We were told some dismal statistics, but healthcare data is super fuzzy (Precision Medicine is still the future) so we charged forward. Two more rounds of chemo later, another trip to America for my uncle to donate cells, and now we are ready to infuse them not my mom. Woo! We won't focus on the fuzzy data around success rates, just the small victories that have allowed us to get to this point. As of today, she is strong, she is well, and ready for those new, good, lymphocyte white blood cells to go attack the bad, mutating cancer cells.
Donor Lymphocyte Infusion Planned!
Since Mama Pham has responded well to the last two rounds of chemo (no Leukemia cells present!) we are clear to move on to the Donor Lymphocyte Infusion! Dates below:July 6th, 2015: Awesome donor uncle gets labs (must be within 7 days of donation)July 9th: 2015: Awesome donor uncle sits with an apheresis machine and donates lymphocytesJuly 10th, 2015: My mom gets the lymphocytes and we being our journey of watching for Graft vs. Host Disease (GVHD) and hope for full remission forever and ever!
Will You Marrow Me?
Last month, I attended the Stanford Big Data in Bioscience conference. My mom had labs and a possible transfusion during one of the conference days, so I conveniently dropped her off at the Stanford Cancer Center, parked in free patient parking, and walked around the corner to attend the conference on the university campus. One moment I was on the patient side, and a couple of blocks later, I was on the provider side, talking to physicians and clinicians as my peers in this quest to bring better care to patients and better decision making capabilities to doctors. Talk about integrating work and life into one!During the conference break, I ran into the Asian American Donor Program students who were hold up a lovely sign that said "Will you marrow me?" If you have not yet, you can help save lives like Mama Pham's by going to register at Be the Match! It is a very simple process of sending in saliva samples, and if you are lucky enough to be a donor, the donation process is pretty simple as well! It just involves some lab draws, a physical exam, and several hours on an apheresis machine!
Biopsy Day + Gratitude + Joy!
Today is biopsy day! This is the biopsy after 7 rounds of chemotherapy and a bone marrow transplant (January 2014). The results of this biopsy will determine if we move forward with the Donor Lymphocyte Infusion (DLI). If still in remission, then proceed with DLI. If not, then must discuss other, more difficult, conversations.While driving to the hospital with my mom, listening to stories of her early years in Vietnam, and later working remotely from the hospital waiting room, I felt a wave of gratitude and joy for the ability to be with my mom and advocate for her and others during this time.
Last day of Chemotherapy #7
Today is the last day of Chemotherapy #7! Mama Pham got a dose of Vincristine in about 10 minutes and is free to go home to await the blood count recovery process. When we started this journey in August 2013, I met people who were on their 6th or 7th round of chemo and thought that just seemed so far away. It seemed so exhausting, so extensive. Now, one and ten months later, time has flown and sometimes I cannot believe all the things that my mom's body has endured. She is the strongest 85lb woman I know.Over the past almost two years, we went from one procedure to another, one round of chemo to another, one blood draw to another, and slowly just walked our road to beating cancer. Each day was another day of hope, hope that the next blood count wouldn't yield any blasts (Leukemia cells) in the blood stream, hope that we will be in remission forever. Hope sustains us and keeps us charging forward.
More Chemotherapy
Even though the biopsy results are clear, the Blood and Marrow Transplant (BMT) doctor at Stanford wants to do one more round of chemotherapy for a deeper remission before going into an Donor Lymphocyte Infusion (DLI). The regimen:Intrathecal MTX on day 1Cyclophosphamide infusion on day 1Cytarabine days 1-4 and 8-11Vincristine days 15 and 22PEG asparaginase day 15
Biopsy Results are Clear after Chemo!
Mama Pham's biopsy came back clear! On April 1st, she started on the CALGB 9511 regiment for her relapsed T-Cell Acute Lymphoblastic Leukemia. This was a very aggressive regimen with asparaginase, and Mama Pham definitely had some tough days. This is her 8th round of chemo overall. None of the other chemotherapy regimens over the past 1.5 years have EVER brought her to full remission (Hyper CVAD, Nelarabine), and they did the Stem Cell Transplant last year with active Leukemia (not ideal). We are not fully in the clear because we still need to do a Donor Lymphocyte Infusion from my uncle, but this gives us a clear to charge forward and that we will! Many thanks to our amazing family of supporters and the doctors at City of Hope, UCI and Stanford for getting us to this next milestone. I am forever grateful.
Blood Transfusions
Blood transfusions are a norm for cancer patients. From my experiences, two nurses must double check the blood type before a transfusion occurs. For fun, below is are two blood type charts from the American Red Cross and aabb.org.
