Where we are heading is better than where we have been.
January 1, 2021
The post-transplant chapter of my story has been composed of good days and bad days. A good day is simply a pain-free, nausea-free, having-a-fair-appetite, able-to-shower day, while a bad day is the opposite of that, coupled with tears.
Transplant on May 17 was considered as Day 0 or the day of rebirth. I was discharged from the hospital on Day 24 and I was given a booklet for post-transplant discharge instructions. Guidelines and precautions on activity, nutrition, and more were printed, and a space was provided where I must write my daily weight, vital signs, fluid intake and output, and other notes such as bowel movement. I may be out of the hospital, but it felt like I took the hospital home with me.
Moreover, the home medications were quite overwhelming. For graft-versus-host disease, I was prescribed Prograf, Cellcept, and Prednisone. These are immunosuppressants. To prevent infection, I was prescribed Voriconazole (antifungal), Valacyclovir (antiviral), and Cotrimoxazole (antibacterial). My risk for infection is greater because my immune system is weak. To prevent acidity, I was prescribed with Omeprazole. I also have to take Magnesium Oxide for chronic hypomagnesemia, and Coralan (anti-angina) and Eliquis (anticoagulant) for chronic deep vein thrombosis (blood clot).
According to the Leukemia and Lymphoma Society, “Graft-versus-host disease (GVHD) is a potentially serious complication of allogeneic stem cell transplantation and reduced-intensity allogeneic stem cell transplantation. During allogeneic stem cell transplantation, a patient receives stem cells from a donor or donated umbilical cord blood. GVHD occurs when the donor’s T cells (the graft) view the patient’s healthy cells (the host) as foreign, and attack and damage them. Graft-versus-host disease can be mild, moderate, or severe. In some cases, it can be life-threatening.”
GVHD of the Skin
On Day 32, I started having rashes on my neck down to my underarms and on my back. It was GVHD of the skin, so Prednisone was increased to 20 mg daily. After a week, my skin improved, and I began tapering down the Prednisone. During this period, I was already consistently fatigued that I had to use a wheelchair for my weekly hospital visit and on my bad days, my mother had to feed me. Brushing my teeth also took great effort. But when Prednisone was down to 10 mg daily, I experienced extreme fatigue and headache. My oncologist suspected adrenal insufficiency, so I had my cortisol, a steroid hormone, checked.
According to the Hormone Health Network, “The adrenal glands, located on top of the kidneys, make hormones that are essential for body functions. The outer layer (cortex) of the adrenal glands makes three types of steroid hormones. In adrenal insufficiency (AI), the cortex does not make enough steroid hormones... Normally, the pituitary gland makes a hormone called ACTH, which tells the adrenal glands to make cortisol. But in secondary AI, the pituitary gland does not send enough ACTH to the adrenal glands. Therefore, not enough cortisol is made. Some causes of secondary AI may be temporary, such as taking certain prescription medicines like Prednisone, hydrocortisone, or dexamethasone.”
Referral to an Endocrinologist
My cortisol assay was at 3.7 when it was supposed to be at 4.30-22.40; hence, on Day 60, I was referred to an endocrinologist, who requested for tests to determine my lipid profile, blood sugar, and some thyroid and reproductive hormones.
And voila, I was diagnosed with adrenal insufficiency, hyperlipidemia, and menopause.
For adrenal insufficiency, Prednisone was increased back to 20 mg daily and if I were to start tapering down again, I must taper very slowly. For hyperlipidemia, I was prescribed with Fenofibrate. Notably, my triglycerides subsequently decreased to 116 from 523 (Normal is below 150). On the other hand, my estradiol and follicle stimulating hormone were in the post-menopausal range. When asked if it was permanent or temporary menopause, my endocrinologist said that I have to see a reproductive endocrinologist, who can also assist me in exploring fertility options. However, she said that she may prescribed me hormone pills to help manage menopausal symptoms; but such pills are contraindicated to anticoagulant medicine, which I am taking.
And though my blood sugar was normal, I had to start monitoring it at home because Prednisone may cause a spike. I was also prescribed with Calcium and Vitamin D because Prednisone may cause osteoporosis.
Hooray for small wins!
Encountering complications and setbacks in my healing and recovery motivated me more to acknowledge and celebrate small wins, like being able to travel without a wheelchair for my weekly hospital visit by the end of July.
On Day 76, Prednisone was further increased to 40 mg daily because I was once again experiencing GVHD of the skin. This time, rashes were all over my limbs. My only consolation was increased energy from the high-dose steroid because the other side effects of Prednisone were simply unpleasant.
From Day 88 onwards, when my skin was improving, I started tapering down the Prednisone by 10 to 5 mg.
On August 25, I celebrated reaching Day 100.
August 25, 2020
According to MD Anderson Cancer Center, “Day 100 is a milestone that many stem cell transplant recipients circle boldly on their calendars as the turning point in their recovery. That’s when the greatest risk for critical side effects is past and when the stem cells have engrafted and begun making new blood cells.”
On the same day, I had my post-transplant PET CT. And praise Jesus, I am still in remission!
It was an early birthday present because on September 3, I turned 27. My sister and I also launched the second collection of Faith Mugs by Lenie Rose on my birthday.
September 3, 2020
By mid-September, I was on Prednisone 15 mg daily, but on Day 128, my SGPT, a liver enzyme, spiked at 537 (Normal is 15-59). Hence, Prednisone was increased back to 20 mg daily. But the following week, my SGPT further spiked at 1180! It was GVHD of the liver. So, Prednisone was again at 40 mg daily. And I was prescribed Godex for my liver. Although my SGPT was alarmingly extremely high, surprisingly, I had this quiet confidence that I will be alright.
Prednisone is a two-edged sword: it is treating GVHD, but it also has nasty side effects.
I woke up before the sun rises! But I found insomnia and the occasional muscle pains tolerable. My self-image, on the other hand, was disturbed. Honestly, I was more disappointed on being on high-dose steroid than having GVHD because I did not like how I looked and felt. I had a cushingoid appearance: facial puffiness or a moon face and fatty hump between my shoulders or a buffalo hump. I was also gaining weight, around 10 kg, mostly distributed on my midsection; probably because of water retention and increased appetite. I felt hungry all the time!
I was earnestly praying to God to resolve my GVHD because the faster my SGPT decreased, the sooner I will be able to taper down the Prednisone and maybe the sooner I will look and feel better. Embarrassedly, I realized that my motivation was shallow, and my complaints were petty. So, I changed my prayer.
Though I still ask God that I will be able to taper off Prednisone successfully and not encounter adrenal insufficiency again, I foremost ask Him to increase my patience and gratitude, and to transform my self-image positively.
From October to November, my SGPT was gradually decreasing. Subsequently, I started tapering down the Prednisone by 10 to 5 mg again.
Also, on November 7, I created Faith Stories by Lenie Rose, a page dedicated for the medical fundraisers of my friends. My heart was burdened on how I can further help my sick friends. I understood that their - as mine too - immediate need is assistance to cover medical expenses. I sought God and realized that He has given me a gift of writing and a platform for storytelling. I may not be able to financially support them, but others could through me.
Stories of Faith, Hope, and Love
By December, I was on Prednisone 10 mg daily and started very slowly tapering down by 2.5 mg on selected days. My hospital visits were also changed from weekly to biweekly. Almost all my blood counts and chemistry were normal. On paper, I was doing good, but in person, I was feeling otherwise! I had significantly decreased energy, low mood, and poor appetite. I frequently had nausea and headaches. I also noticed tremors. I thought that these were expected and that maybe I was experiencing a little steroid withdrawal. As long as my symptoms were nothing serious, I endured.
In addition, it is challenging to identify which drug is really causing which side effect as I am taking a lot of home medications, or if these symptoms are consequences of the transplant itself or my previous therapies.
On Day 214, after more than 2 months of elevated SGPT, it was finally normal at 48. Thank You, Jesus!
However, I started having rashes again. This time, I was referred to a dermatologist, who said that the rashes looked like telangiectases or spider veins and that if it was skin GVHD, it is Grade 1 and requires no treatment, though she prescribed Hirudoid cream for relief.
December 25, 2020
As of this writing, I am on Day 234. I am due for my biweekly hospital visit tomorrow and another PET CT on February or March. I pray that I will still be in remission and that the result of the scan will be favorable for a ureteral stent removal.
Just as I declared in the beginning of 2020, I truly received healing and miracles. But it was a bittersweet victory. 2020 was generally a bad year because of COVID-19. Many lives were lost, and not only because of the virus itself. My friends, whose cancer treatment were significantly affected by the pandemic, died. There was survivor’s guilt: I felt bad and I thought a lot was unfair. But I processed those feelings and thoughts as motivation to thrive and honor my friends who passed.
Entering 2021, I hope for more healing and miracles. I hope to embody a character and a perspective that are pleasing to God. And I hope that whatever lies ahead, I will be able to always respond in faith.
Hello, 2021! From Lenie Rose and Mommy