HOME: So, we’ve been home for two weeks now. It’s been a process. Its great being back home but it hasn’t been without some anxiety. Leaving the constant supervision of nurses 24/7 was difficult at first. Meliss is on a mountain of medication that is critical to take several times a day, some makes her nauseous, tired, shaking, etc.. it was easier with the nurses explaining why she’s feeling the way she does on a daily basis than wondering whats going on at home. Then she’s still got one of the Hickman catheters installed in her chest, which required multiple flushes a day. this line goes directly into the main artery into her heart, so knowing each time I flush her lines I’m injecting saline directly into her heart was a little nerve-racking at first. But after the first couple nights the meds and line flush was a breeze.
THE GOOD: Trust me being home after being in the hospital for a month is great! Being back home with the boys, family & friends, the dogs, sleeping in our own bed, eating normal food (although very restricted for Meliss its still better than hospital food), and having beer in the fridge 😉 Her numbers have been good, better than when she checked into the hospital but they have been up and down but this is expected. Today 3/6/20 she had her last Hickman port removed at Brigham and Woman’s (although this came with its own issues, scar tissue and some pain but she pulled through like a champ). It’s one less thing we need to deal with at home, which is a plus.
THE GREAT: The support we have been receiving has been great! I cant thank everybody enough. We’ve been getting help daily which is greatly appreciated, and also the messages here and there from the unexpected are a huge help to get us through the day. Thank you everyone!
THE BAD: Unfortunately this list is a little longer than the good. So where to begin? Melissa’s appetite has been non existent, its a struggle eating a yogurt, a little cereal and hopefully a couple bites of dinner at night. I’ve been trying to push anything and everything into her but just not happening yet and trying not to piss her off being overly persistent. She’s lost a ton of weight, I think she’s under 110 lbs at this point and she doesn’t look like herself… Energy levels have also been non existent. She sleeps a lot during the day, and when she’s up, normal tasks like taking a shower wipe her out. The two weeks we’ve been home we’ve only managed two walks up the street at this point, but I don’t want to push her until she feels up to it. Also, this past week her hands and feet began to hurt like razor blades is how she explained it. We had a follow up apt at Dana Farber on Monday, the Dr’s suggested it was still a reaction to chemo and prescribed some steroid cream to try which didn’t really help. Unfortunately things got worse during the week, the pain turned into a rash which eventually turned to blisters and the skin is now pealing/falling off at this point. We were back in the hospital today and they now think its early Graft vs Host disease. Graft vs Host disease is pretty common for BMT and comes with different severity’s, the donors cells don’t know where they are and begin to attack Melissa’s own body because they know they are in the wrong place. They prescribed a new heavy dose of oral steroids which is supposed to suppress some of the white blood cell activity, but this also comes with risk of reducing her body’s immune system which is already severely compromised at this point. The skin which is the body’s largest organ is usually first affected by this, but we are hoping the steroids clear this up over the weekend. Her liver and kidney numbers (also a concern with GvH disease) still look great at this point. Chemo sucks! It kills everything, her body is literally rebuilding itself at a cellular level. We know this cant be rushed and its gonna take a lot of time, but it’s still frustrating going through the process. Especially when all the “this could happen” is happening, but we are taking it one day at a time.
THE UNEXPECTED: COVID-19: usually this is not something I would blink an eye about. Mostly media hype? Probably, but the fact that Melissa’s immune system is so compromised I have to pay more attention to this than I want to. Even though we’ve been in the hospital for an entire month in a specially designed hospital wing with back pressure and specialty air filtration, and the fact that I wore a mask and gloves the entire time in the room and washed/sanitized my hands 100 times a day, opened doors with my elbow, pressed the elevator button with my back knuckle, I still came down with a cold and runny nose during our stay. It’s a little concerning… anything at this point, cold, flu, Corona would be problematic for Melissa and anything over 100.4 fever we will wind up back in the hospital.
EVEN WORSE: Unrelated to Melissa but very tragic. Found out today a very close friend of ours is about to lose his brother. Only 42 years young, He suffered a cardiac episode earlier this week and has been in a coma since. Dr’s fear the worst and are going to pull the plug tomorrow. It’s heartbreaking and our thoughts and prayers go out to Luis and the entire family. I’m sorry brother…