Some Updates

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!

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.
StanfordSchedule

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.

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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

Fried Rice
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 Rice

Warning: 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:
Onion
Any combination of: chicken, pork, chinese sausage (many different brands)
Eggs
Carrots
Peas
Rice
Salt
Pepper
Sugar
Oyster Sauce
Soy Sauce or Seasoning Sauce – We use Seasoning Sauce usually.
Sesame Oil

Method:
THE ONION!
About 1/4 onion (yellow or white) chopped
Sauté in preferred oil (olive or canola) until lucent
Keep medium to medium low heat

ADD THE PRE-COOKED MEATS!
Any number of the following meats (or no meat!):
Left over cooked Chicken chopped
Boiled Pork chopped
Xa Xiu – Roast Pork – Roast Pork
Lap Xuong  (most common) – you can find this at any Ranch 99 or Asian store. Almost all fried rice dishes have this.

ADD THE EGG
Mix 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 VEGGIES
Frozen 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 desire
Peas – 1/2 cup – more or less as you desire

ADD 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 Salt
dash Sugar
dash Pepper
Soy 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.

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.