What’s next
Having symptoms still Plan is to scan me in April so lots of waiting to do
Medically Home is monitoring me from here. Lucky to have nurses like Emily and Melissa and Sarah keeping an eye on my labs and survey. Still needing IV fluids at home as it’s really hard to take in anything by mouth
My heart rate was low over the weekend so they sent out someone for an EKG and then Melissa came for a blood draw. My Potassium and Magnesium are super low so they are sending out some replacements today.
Dr Clark was right on about this week after chemo. I think I expected to be on the rebound but the chemo and radiation’s are still damaging the tissue. It’s like constant hand foot and mouth with sores all over my gums, tongue and palate. Makes it really hard to swallow. I’ve been taking pain meds steadily with magic mouthwash to help a little but it’s nearly impossible to get anything down.
Hoping maybe another week and should see improvement. I have an appointment on Friday to get some IV fluids at the hospital and see Karen so they can check on the status.
On a positive not, watched the inauguration and am definitely inspired by positivity and a direction we need to go into. I feel as though this will open new attitudes and people can get along.
1/30
In full disclosure this post is not for sympathy or gifts or attention Please know I will get through this but because I have documented the experience here I want to continue to document the symptoms in order to have it for reference.
I have to say when Dr Clark said the last 1/3 including the weeks beyond treatment ending would be the worst he was right. I never expected to feel so down. I have finished all treatments and do think I did pretty damn well pushing through it. I didn’t have crazy nausea or real ok as pain. I am blessed to have made it through but now am just surprised that the celebration of ringing the bell did not bring a return to baseline but things have actually been worse My labs are a mess and my energy is so low that a ten min shower leaves me out of breath and back on the couch. Even a quick run to the Walgreens pharmacy leaves me leaning on the counter conserving energy.
The calls and texts that come through expecting me to be on the mend and heading back to reality and in reality I have not had anything to eat in days. I can’t bring myself to eat any food. It all tastes beige and makes me gag. Not nausea just real aversion. I am taking mouthfuls of vitamins including extra potassium and magnesium because these levels are very low. I have lost 20 lb since New Years The mucositis is really the grossest part of it all. It is an irritation of all of the mucous membranes due to the treatment from mainly the radiation but also the chemo. I won’t give details but thick mucous is basically just nasty.
I find myself craving foods. Then getting them and never eating them. Just looking or smelling leaves me without an appetite. I did find a one ounce shot of protein called liquicel. It tastes terrible but I can down it for the protein but I’m lucky if I got 509 calories a day in the last four days. I am trying hard to force it. But the more I force the less successful I am. Going to backtrack to applesauce, oatmeal and other basics to see if I can earn back my appetite. So far polar raspberry lime soda is the one sure thing but hard to find in a store as market basket always seems to be sold out.
2/6
So. Went to the doctors today. Broke down a little cuz I’m still not feeling better. Lost almost 20 lbs since New Years which on any other occasion would be reason to celebrate. I asked why I was feeling worse. Not better. She was like “this is normal. you are the strongest patient I have seen. You felt so good for so long that this is how everyone else feels the whole time. “ She told me it will be a few more weeks but hopefully this is the bottom and I need to force myself to get the calories in somehow (easier said than done) and by the time they scan me (which they moved up to mid March) I should expect to be 50% better and because I had five months of treatments it will take approx five months for me to feel whatever the new baseline will be. Argh. Gotta see the sun.
2/7
Vaccinated!!!! Got number 2 covid vaccine. Finally something positive going on! Little arm soreness over the weekend and some fatigue but so happy to have gotten it!
2/10
Waffle for breakfast. The drinking is so much better today and I’m craving some food. Feel like. My energy is a bit better and I have been sleeping so well. Pushing as much as I can but hoping today may be the big turn around!!!!!
2/24
Improving
This week I have noticed much of my taste is returning. I’m still very fussy and not tolerating everything but the eggo waffles and peanut butter are going down with a beverage.
My labs are almost all normal and I am tolerating six hours of working. Which has been the biggest success. I’m so glad to see some improvement as I was pretty discouraged with the massive weight loss since Christmas that only magnified the fatigue and muscle loss. Getting up off the floor is still a challenge but I am definitely not as dizzy or weak as I was just a few weeks ago.
I’m looking forward to getting the scans in a few weeks to see how well the treatments worked.
I feel so blessed to have so much support and love from my family and friends. I can’t wait to give it back although I do not wish a need on anyone.
3/6
Six weeks post radiation. The intake is still not meeting my needs but I have been practicing trying to get back to work. Working from home is easy but getting in and out of town takes a lot more work. I do say that working definitely makes me happier. Being social with the folks from work and it’s nice to be needed. Little by little I am increasing my energy. The humidifier at night is the most important piece to a good night sleep and the aquaphor to my dry skin. The hair on my head is about an inch now. Not seeing any sign of curl and have the craziest. Bald patch in the back from the radiation but so happy to see it growing. It’s so baby soft and salt and pepper.
Scans coming on 3/16 so I am very interested in the results Having both an MRI and Cat Scan in the morning at Mass Eye and Ear then an appointment with Dr Chan and Dr Wirth on the 22nd at MGH
Declan came home and asked who I let do this to my head. It’s the locations for the radiation. Hoping it starts to grow back but no signs of this yet. It’s the most ridiculous look but long hair should cover ok. Pony tails will be a challenge until it comes back.
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