Finally...an update!

I know a lot of my readers are probably wondering how I have been doing...and I apologize for the long pause between updates. But I can assure you, it's because I've gotten back to "life" and am just now finding time to sit down to write...even though it's been on my to-do list for at least a week!

Clinic Visits

Weekly clinic visits at Northwestern have quickly become routine and uneventful. My blood counts have been holding steady in normal ranges, and medications are adjusted almost every visit. Unfortunately, even more meds have been added to my drug diet as side effects have lingered (more on that next). Two weeks ago, Dr. Mehta said my blood counts were "terrific" and last week he said, "Let's keep this going" -- as in, maintaining all levels and counts because they are where they should be. I'm feeling very satisfied about where I am in the recovery process, especially with how good I truly feel.

Thank you to the friends and family who are driving me to Chicago each week - the time together is priceless, and your help is so appreciated!

Side Effects

I am still dealing with some side effects, all of which are typical of this stage of recovery. Each week at my clinic visit, I discuss these with a pharmacist, a provider from the stem cell transplant team, and Dr. Mehta.

The most annoying issue has been my irritated skin, which literally flared up a couple of weeks ago on a day when I spent less than an hour outside in 90+ degree weather. My body continues to have difficulty maintaining a comfortable core temperature, so I tend to be cold, and on that very warm day (which I did not anticipate) I was overdressed. My skin turned red in places and began to itch terribly, especially around my torso. This has persisted since and has morphed into my skin becoming inflamed, looking sunburned, and itching when it becomes warm - such as being enclosed by clothing or sitting in an upholstered recliner or lying in bed. There was a stretch of a few nights in which I woke up in the night to go to the bathroom and couldn't go back to sleep because the itching became so intense. I also developed rashes on my lower arms and legs, and the rash on my chest has come and gone a couple of times. Interestingly, the rashes did not itch. Prednisone has taken care of the rashes, and last week I was prescribed Atarax to combat the itching - I take this at night since it can cause drowsiness, and it has provided so much relief that I am now sleeping without any itching!

Overall, the skin issues just described are easing slowly - and I have no doubt the cooler Midwest weather has helped. While skin issues, especially extreme dryness and sensitivity to heat and sunlight, are expected with transplant recovery, the itching isn't so common, and Dr. Mehta assumes it's just how my body is reacting to the new stem cells and all of the drugs. The rashes were likely a sign of graft vs. host disease, and Dr. Mehta has always said a little bit of GVHD is a good thing because it shows my new immune system is able to detect and react to something "new."

Somewhat related to the skin irritation is another symptom: swollen ankles and feet. Dr. Mehta believes this is being caused by the blood pressure meds I am taking to offset the higher BP caused by the anti-rejection drug, Tacrolimus. Currently, if I am on my feet for even ten minutes or so, I can feel my lower legs becoming warm, turning bright red, and then swelling. These areas can also get itchy. Fortunately, sitting down and elevating my legs alleviates of all of this within minutes, so I'm learning to balance my "up and down" time during the day. Maybe some day I will be able to wear socks and sneakers again!

Another major side effect of the Tacrolimus is that it leeches magnesium from the body. I have been giving myself magnesium infusions for three weeks at home, and for two weeks, I've been taking magnesium supplement tablets. My magnesium level is not budging, remaining lower than normal. As of my blood work on this past Friday, my potassium level is now low, too. It may be related to the persistent, low magnesium or it could be a side effect of my drug diet. I will find out at my next clinic visit how this will be remedied...and I have a feeling more infusions are in my future! (I've discovered that the eight hour long infusions are best administered overnight when I'm sleeping.) I still have my PICC line through which the magnesium is infused, and I'm thankful for friends and family who flush my PICC lines daily!

If you were to talk to me in person, you would notice my voice is hoarse. This is a leftover symptom of the mucositis. I believe this condition damaged my throat much more than I initially thought, and it will just take a long time to heal. I still feel a spot on the left side of my throat which can be very sore when I swallow or cough. It's so low Dr. Mehta cannot see it, but we both think it is just remaining irritated by typical throat functions.

Questions I'm commonly asked:

How has your brother been feeling since donating his stem cells?

If you recall, Ed did experience five days of allergic reactions to the stem cell boosting drug he had to administer prior to the cell harvest. However, the second Ed donated that ten millionth stem cell, his responsibility was over! He had no physical issues beyond that moment as related to the cell harvest. He's fine!

How long do you have to be on the anti-rejection drug?

Tacrolimus is the anti-rejection drug which also is currently suppressing my new immune system, which can't be allowed to fully work independently just yet. Not only is the Tacrolimus causing my blood pressure issues, but it is also responsible for tremors in my hands. When I was released from the hospital, I was taking 3 mg of the drug per day; within two weeks, the dosage had been reduced to 1 mg per day.

I've heard differing reports of how long I might have to take it - and as long as I'm on it, I'm considered highly immunocompromised. Early on, I was told that some patients take this drug for one to two years after transplant. Day 100 (following the transplant) is a major benchmark in the recovery process, and I may be weaned off the Tacrolimus at that time. (For me, Day 100 is around Thanksgiving.) Whenever this happens, I will be at risk of developing new complications when my immune system is allowed to work at 100% capacity.

Are you in remission now?

Technically, the answer to this question is no. While everything is moving in the right direction, there is still a chance that there are leukemia cells lurking at undetectable levels. I will be having another biopsy on October 14th to see what is now happening in my bone marrow, which may provide a clearer picture than my blood work. According to Dr. Mehta, if the leukemia is going to recur, it will most likely happen within the first two years following the transplant. The likelihood decreases more after that, and if it hasn't recurred within five years, it most likely gone for good!

What are you doing with your time? Are you planning to go back to school?

As of tomorrow, I have been home from the hospital for one month! (Guess it's time to finally put my suitcase away, huh?) Thankfully, I have now developed a daily routine which allows for a mix of rest and productivity. I am fully independent (with the exception of needing someone to flush my PICC lines), and I have been dismissed from Home Health (although Home Health still provides infusion supplies). I am driving locally, but not mentally ready to drive to Chicago just yet. I go to the Illinois Cancer Center in Pekin each Friday morning for my second blood draw of the week.

I've been able to get some books read, and I'm trying to do word puzzles rather than scroll time away on my phone! I'm taking advantage of having the time to prepare new recipes I've saved. I'm keeping up with household chores and have tackled some organizational projects with many more waiting!

I am still avoiding situations and events where I might come into close contact with a lot of different people - especially people who know me and want to talk to me. I asked Dr. Mehta if I could return to in-person church, and he said it was still too early for that unless I wanted to wear a mask and gloves to send the message to others to keep their distance! One-on-one or small groups of people don't worry me, and I would just hope that if any one knows me and my situation, they would speak up if they don't feel well. I willing to put on a mask if there's a risk!

I have no plans, nor am I worrying about, returning to school any time soon. It will have to be a joint decision with Dr. Mehta and myself when that happens. I have officially taken time off through Winter Break, but returning in January means stepping back in during cold and flu season. I'm also not sure I will be far enough out from the Day 100 benchmark and it's potential risks by then. My energy levels, both physical and mental, may not be up for that yet, and I really do not want to teach wearing a mask again. Time will tell!

My friend, Julie, shared the following quote on her social media today, and I felt it to my core. I have been feeling very content and grateful and peaceful lately, and this just summed it up:

Prayer Requests

• Pray that my recovery symptoms gradually subside, and no new ones appear!

• Pray for traveling mercies on clinic days in Chicago!

• Pray the upcoming biopsy shows no evidence of leukemia and only healthy cells!

• Thanks for praying for my niece, Lena, as she is recovering from her car accident injuries. She was able to have her cast removed last week, and she is beginning occupational therapy Monday. She has been able to return to her job and begin her internship (which is part of her schooling). She is back to being busy! Please pray her collarbone and humerus continue to heal well, and that the therapy is helpful for her.

I'm so glad I got this update done! It's been so helpful to put life lately into words. Thank you for all of the positive feedback about my website. Writing is theraputic for me, and I'm happy it's been so helpful and interesting for everyone.

There aren't adequate words to describe how incredibly thankful I am for the support shown to me and my family over the last six and a half months. We absolutely can't thank you all enough for the cards, gifts, messages, and prayers.

Unless something major happens in the meantime, I'll likely update again when the results of the biopsy are back. Until then, I wish you all many blessings!