Home Sweet Home
Well, I’ve been home for over 24 hours and it has been rough.
Of course it’s great to be home with Eric and the kids and get to sleep in my own bed, but I’m just not feeling great at all. I have a constant headache, mild nausea, discomfort from the PIC line and these tubes coming out of my arm, and an overall icky feeling. The smell of food is still a challenge, but fortunately my appetite has remained intact. The first thing I wanted to eat was FroYo, so of course it was mom to the rescue - she came racing over yesterday with giant Yogurtland selections.
I certainly came home to a full fridge too thanks to so many people who have so generously donated meals and groceries. My sister Sam and brother-in-law Andy fed Eric and the kids Tri-tip and chicken and rice for dinner while I was in the hospital and also brought over several cases of alkaline water (my new best friend) and loads of healthy Trader Joe’s groceries like avocados and bananas. Someone definitely did their research on what chemo patients need to eat! Much appreciated.
I noticed too while I was away I’d gotten several more gifts, care packages, and flower arrangements - I seriously can’t get over all of the generosity and genuine concern - Concern from people I hardly know, used to know, have never met - People who work with my sisters and saw their Facebook Post - Friends of my moms who feel like they know me through her - People I went to high school with and haven’t spoken to since. I sort of get it though - I think when you’re as young as me, it hits hard when someone gets something as terrible as this. It forces all of the other young kids (Class of 2000 ;-) to face their own mortality and realize this is possible for any of us. 38 year old wives and mothers aren’t supposed to get aggressive cancer - it just doesn’t happen to people we know. I don’t want to be a poster child for this disease - I don’t want to wear the ribbons - I don’t want to march - but that’s what I’ll do if that means I get to live through this. One step at a time.
First thing I wanted to do when I got home was take a long shower and blast some music. I got in a good cry in the shower watching my hair already swirl the drain. I knew the hair thing would happen soon, but it was still surprising and very upsetting. I felt almost human again after the shower and was able to get a much needed long night’s sleep - much longer than anything I was able to get in the hospital. Although the PIC line is making it difficult to get into a comfortable position, last night I got to sleep on my back for the first time in months. However small - this is a big deal. The tumor has prevented me from sleeping even for a minute on my back without excruciating pain and now all of a sudden it doesn’t hurt (as much). Every now and then I’ll get a pinch of pain, but certainly nothing like before. The days leading up to going in for chemo were the worst where I would be keeled over the bed in tears from the stabbing pain. I would have to sleep with giant ice packs on my leg and hip just to ease the pain enough to sleep and I was popping Percocet like there was no tomorrow. Now I’m down to only 1 or 2 Percocets throughout the day. This must mean that the tumor is shrinking! They told me that it would after the first round, and I have to believe it’s true. They won’t do an official scan until after the 3rd chemo cycle, but I think this is good news. Other good news we got today - the lumbar puncture results all came in too showing no evidence of cancer in my brain. So no cancer in my bone marrow, brain, or any other organs - this is all good news. They still plan to follow up my 4-6 regular chemo cycles with 3 cycles of out-patient chemo to prevent the whole brain thing. Apparently this type of NHL (Non-Hodgkin Lymphoma) has a tendency to relocate to the brain, so it’s all just preventative. One day at a time - Don’t think that far ahead yet - This is my constant reminder.
So today I woke up (with a terrible headache of course) but at least I was waking up in my own bed. Eric has now moved to work from home which is really nice. After 4 months of me working from home with the kids home, it’s comforting to have him home with us now too - not to mention necessary since I’m not able to do much of anything other than lay around the house for now. In the afternoon, my mom (AKA my personal nurse) came over to administer my daily injection and take me to the hospital for blood work. She assured me she spent the morning watching YouTube videos of how to give shots and she felt confident now. I was more concerned she was going to accidentally stab herself with the needle after her victorious nurse’s duty. I’m not going to say she’s a little accident prone, so I’ll just stop there. She did a great job and added yet another puncture mark to my already stippled belly and then we were off back to the dreaded hospital. Luckily they got me in quick, took my blood, and we were back on the road back home. My nurse mom even got me up and walking around the complex when we got back - I think the fresh air helps.
I sent an email to my doctor about the headaches as it’s become clear I will not be able to function at all while I have them - and of course now I’m panicked this means the cancer has already spread to my brain (spoiler alert - that’s not the case according to my oncologist). About an hour after returning home, he called to discuss the headaches which he thinks is all related to the lumbar puncture that I got last Wednesday - he assured me that I won’t be getting anymore of those. He also already had the results from today’s blood work - wow, they’re right on top of this. He said my white and red counts are still normal which is great! The only issue we’re still dealing with is the potassium. It’s low and getting lower every day - maybe that’s what’s causing the headaches? He told me to eat avocados, beans, spinach, and coconut water to try to get those numbers up. I’ll have my blood taken again on Friday so hopefully that will show the result of my efforts. I’m already scared of what the next step will be if those numbers don’t go up - do I have to come back to the hospital and be admitted for more tests? The best news of the day was that since my blood counts are all still in the normal range, that I can have an aspirin for the headache. Done and Done and I feel like a different person. He said that after the next cycle it may be a different story, but for now, an aspirin a day won’t hurt. I have a book on all of the other prescriptions I’m taking too and filled up my handy-dandy pills of the day container (thanks to Diana) to try to keep them all organized - taking over 7 pills a day plus the daily injections.
I ordered the potassium rich items to be delivered tomorrow and also have fancy hair buzzers coming this week too. This is the part that I’m sure freaks most women out. Hair is such a big deal and I’m terrified about how I’m going to deal with cutting all of mine off. I cry every time I think about it. My sisters and mom tried to show me empowered women buzzed heads - Pink, Demi Moore, Kristen Stewart - but honestly, all I can picture is Pugsley Adams (pictures below for reference). I will be videotaping the experience this weekend as I weep into a pile of over processed locks that I love so much. I was really loving how long it’s gotten since quarantine and now this - back to square zero. I bet I’ll look totally gray too with it all buzzed. I read a new book to the kids tonight called “Nowhere Hair” and I sobbed at every page thinking of the stares and questions and overall unpleasantness that will be my future as I’m out in public with no hair. Maggie and I talked about the possibility that her friends will ask her questions about me and may even be afraid to be around her because of me. For now, we’re just trying to get them comfortable with talking openly about the fact that mom has cancer and is sick, but it’s nothing you can catch and nothing you should be scare of. My confident Maggie will have no problem standing up for me to anyone who may ask her questions. Harrison, on the other hand, is reacting harder. He’s admitted that he’s scared to be around me (even wanting to sit in the way way back of the car on the way home from the hospital).
But for now, I’m just excited that in the morning I’ll finally be able to hug and kiss my family!
