As I read my last blog entry, it truly feels like a lifetime ago. It was written before the pandemic took over, and while we were still hopeful that we would soon hit more stability in mama's journey. The last 4 months have been so crazy. Trying to juggle this new way of life where we rarely leave home with our 4 and 6 year olds, and can barely see any of our friends and family beyond Facetime or technology has been daunting by itself. But when you couple that with schooling, and trying to care for my mom who is battling metastatic breast cancer, who also lives with my 87 year old grandmother. It's a recipe for chaos and ever-changing plans.
Over the last month, mama ended up with the shingles. She started to have severe pain on her side, and we assumed, and before we knew what we were dealing with AND based on scans and history of bones breaking due to cancer spreading, that perhaps her rib had completely fractured (it had showed signs of disease in all of her past scans). Since there's not much you can do for a broken rib, her doctors decided to start her on oxycodone until we could figure out what's going on. At the very least - they wanted to relieve some of the pain. Mom is allergic to codeine so we were wary about her dosage and monitoring her closely. She began taking it and after 24 hours, she seemed to be experiencing no side effects, but the same pain was present unfortunately. I left to go home for a couple days, only to return quickly when mom began complaining of a bad rash. I immediately thought it was a reaction to the codeine, so we stopped that and started on a different pain med. Nothing was helping. We did a video call with one of the nurses and showed her the rash, and she was able to quickly determine that it was shingles.
Typically it takes about 2 weeks to cycle through that, but because mom's immune system was so suppressed, she is STILL battling over a month into this. The nerve pain takes her breath away and she cringes as she waits for the burning sensation to subside. About 1 week in, she began sleeping so much, and eating so little that I got very concerned about the overall picture. Not only that, but we could not continue her chemo while she was so weak and still healing from the blisters that we could NOT get to heal on her back -- no matter what I tried. We took her to UNC for fluids and a check, only to find out the shingles on her back had become infected. So we had to start a new round of antibiotics on top of everything else. At this point, she is taking so many meds and I had to take over managing that as well.
Because she was due for scans soon anyway and we were so concerned with mom's overall stamina, the doctor went ahead and ordered the scans then, to see where we were with the cancer progression. Unfortunately, it was determined that the cancer had not been responding to the new carboplatin regimen, and we needed to discontinue. Her doctor said that there was one more treatment we could try (just recently approved by FDA), but mom was nowhere near strong enough to receive it. So we took a 2 week break to try to get her moving around and strong enough to receive the treatment. Unfortunately (again), it was determined this week that she had not regained her strength very much at all, after a LOT of effort of her part.
Because of this, we have made the difficult decision to transition her care to hospice. This does NOT mean that mom is giving up. She is such a fighter, but we realized after talking to the doctors that if we have any chance of mom rebounding, then it would be through hospice's help. They will just come into her home for now in Wilmington, and visit and assess things as we go. If a nurse is determined to not be needed as much, then we can dial back care. I just finally realized that my nursing skills alone (I am not trained at all), were not doing her any favors. It feels like I'm just keeping her above water, but that's about it. It will be a comfort to know that no matter which way things go, we have the support of hospice to help guide us in whatever direction we are taken. We are basically living with her for now, while the kids don't have any obligations in school and sports -- thanks to COVID. Sometimes, it's strange to see how terrible things can somehow turn into blessings.
The kids have handled it like champs, but some days are harder than others. They are still grappling with what's going on with their Anna, as well as getting stir crazy in a house where they can't always be their normal 4 and 6 year old selves. Fortunately, my best friend's family (shoutout to the amazing Musser family) has a pool that they graciously let us swim in whenever we want, so I get the kids out of the house as frequently (and safely) as possible to give everyone a break. That leaves Craig to work at mom's in a slightly more quiet setting, while also being there in case anything happens with mama or grandmama. I'm only 2 miles away if I need to return home for anything when we go to the pool. On a positive note, Millie can now swim the length of their pool without my help. 🙌 Chase still flops around like a drowning chicken, so no luck there. Still working on it though. 😜
At any rate, this is a tough chapter to say the very least. We are obviously limiting visitors at this time because of COVID, but if anyone would like to send a video of well wishes or a card, let me know and I can make sure those get to her. She still has her sense of humor through all of this and we love her for it. Also, we've found that the kids LOVE getting mail too, so if anyone wants to send them a short and fun letter, please do! Millie can read now and is continuing to work on her handwriting, so reading and responding to letters is a good activity for her currently. Chase loves to doodle a snowman so I'm sure he would love to share his artwork as well. Anything to take their minds off all of this. I tried taking them to the beach, but it was WAY too crowded for my comfort, so we are rather limited.
Thank you to everyone who has been checking in. I try to answer all of the questions that come my way but sometimes they get lost in the madness. So sorry if I'm ever short with anyone with my responses. It is not intentional - there is just a lot going on, but I appreciate the love, thoughts, and prayers. Please know that. 💕
