Work has been super busy this week. Three cardiac interventions scheduled for a five day span. New patients are stacking up a bit. I feel lucky to have this job as it is such a distraction for time. Getting everyone settled into the MFM practice has been good for my soul.
I got tag teamed this week by the doctors. They are all pushing me to stop working and take pain meds but I told them “good luck with that”. To compromise I promised to cut down a bit. Maybe to 20 hours. The mucositis is the main symptom of radiation. I have basically lost 90% sense of taste or smell. My saliva is really thick and I have sore inside my mouth. Especially on the roof/soft palate. I use magic mouthwash to take away the pain and Helios mouth rinse to try and heal it. They also reccomended aklakol from cvs and I have the rad oncology doctor wants me doing baking soda and salt water rinses throughout the day.
I am really enjoying the artistic crown on my head. Valerie did such a good job free handing it and I love finding the animals. I totally am already thinking about what to get on the next one.
12/17.
15 down 20 to go
Feels good to see the numbers going down. Less than one month left. This all started in august so I feel like I can totally see the light at the end of the tunnel.
There was a heavy snowstorm this morning and of course I had radiation scheduled at 7am. John had an endoscopy as well. So we left at 530. Dropped him in chestnut hill. Had radiation at MGH and then picked him back up. Luckily the weather settled and having it light out made it so much better getting home.
December 22, 2020
20 down 15 to go
Got chemo today even though my platelets were 76. They want to get five rounds of chemo in by the end and I am down to three weeks left after tomorrow. One more radiation this week. Four next week then five days the following two weeks. I’m definitely starting to have some signs of chemo beyond the hair loss. So it has to be working. I’ll take every side effect just to know it’s curing this cancer. And I still breathe so much better than I did before the treatments started.
Still grateful not to experience nausea or severe pain. Getting more and more tired and looks like I am going to have to wind down my work from home. My platelets are pretty low (risk for bleeding) and wbc which puts me at more of a risk of infection. Luckily John, the twins and declan have all tested negative for Covid this week in prep for Christmas.
Things I’m so grateful for
The Jugua on my head is holding up nicely. Over a week and it’s still dark on top.
Sick time- looks like I plan to let work go for a few weeks to get through the rest of these treatments.
Maureen helped me get my wrapping done. Few little things left but nobody should be disappointed.
An amazing team at MGH including the medically home peeps fighting this battle along with me. The ability to self administer IV fluids when I’m feeling dry and great nursing care and an amazing acupuncturist.
Amazing friends, family who have been cheering me on, praying for me, sending encouragement and there for me. Endless gift cards, presents, flowers and food to keep us going.
John and the kids. Who are always checking and helping and caring for me and more important letting me know how much they love me. 💗
12/22
Three weeks left. 14 radiations. And I did get chemo so hopefully only two chemos left. My labs are rough but I saw hematology today and they are hoping to give me some off label drug to bring my platelets up. If you don’t know about platelets. They are what makes your blood sticky and keep you from bleeding. So when they go low. You can’t shave. Which is fine. Because nothing does need to be shaved anyway. Although I do have a sparse 3/4 inch speckling of Charlie Brown white hair coming up. Not enough to cover but a sign that something in my head is working. Not a bit of curl but it’s hair just the same.
Also have some anemia which means my red blood cells are low. This happens with chemo and is no surprise. So what do they do to treat it?
They take 14 vials of blood and send it off to see if I have my signs of ITP which will help them make the case to insurance to get coverage for this expensive med to bring the platelets up.
My boss at work shared a funny meme today.
“You think 2020 was tough. Wait til it turns 21 and it starts drinking” lol
Christmas was quiet. I think with the loss of Dad, the loss of parties, mixed with advancing treatment,pain and pain meds that I have hit a bit of a wall. What gets me through is the as of today there are 13 radiations left
I think the time has come to stop working
Over the last week I have done more resting. Has four days without radiation and took it easy and today, my labs were so improved. Kidneys perfect, platelets over 100 and critical above 31: there is something to be said about rest. I went in today more tired and to him I g labs would be crazy but they were perfect so I was able to get in the fourth dose of rad/chemo in audition to my 21st radiation.
After realizing how Christmas really kicked my butt for many reasons including emotional and physical exhaustion I realized I need to find my spark. I need a new head tattoo and decided the theme will be. Face the sun, let the shadows fall behind you.
The new year is coming and this is how I need to greet the new year while flipping off the year past. This new year offers healing, Gratefulness, family, celebration, love and adventures.
12/30. 24 down. 11 Togo.
Looking forward to the new year. Love the girls in radiation/proton. They love asking me pregnancy questions and making me feel more human. Kara at the front desk always greets me with a smile and when I run to empty my bladder before my 40 min in the mask strapped to the table, I see the bell I can’t wait to ring on January 15.
New Years will leave me with ten treatments left and my new mantra is helping. Bringing myself out of the pit is my project. Can’t wait for the new head tattoo and the new year. And the new hoodie! Going to try my hand at screen printing this week. Gotta have a new craft activity with the kids.
12/31
Went to Soulstice in Rockport and got a new tattoo on my head. Hoping to get another few weeks out of this one. Theme is the sun/ocean Kids wanted Dory- since they think I am like Dory from finding Nemo. Forgetting the answers to questions.
Val did a great job again freehanding the whole thing We got a quick video on how it all looks Now with the Face the sun mantra we have turtles again four for each of thebkids Dory is hidden on the side There is a shark and some starfish and I think a sea horse
It’s way better than a bald head and certainly beats out wigs! It is getting colder so I do find myself popping on a hood or hat more often than I don’t.
Kates butterfly
Nora’s taco dinosaur
Today is January 7 and I have 7 treatments left. The last few days have been easier to eat and my energy is better due to the chemo and steroids. They gave me some crap for losing weight. The weekend was tough so I need to increase what I’m putting in which is tough when everything takes like baking soda. Can’t eat anything with flour. No chicken. Hot chocolate from
Dunks is about the only thing that’s satisfying but I can get down an occasional cream of broccoli soup. The nutritionist called and I was like. Sorry. You can’t help me. I’m a brat. I’m not going to do any ensure. I bought these one ounce protein shots I can get down and I can do a drinkable yogurt. I only have another week left so in l can do this. I am loading up with vitamins.
This is what the daily mix looks like.
Calcium, magnesium, b, potassium, probiotics, vit d, multivit, iron, zofran, etc
I also bought this product on Amazon to exercise my jaw. Speech pathology is concerned the radiation to my mouth and jaw will make it tight and hard to open. She wants me to get three fingers open and do these exercises seven times a day. Forever. So if you see me forcing my mouth open. It’s just to stretch the tightness.

As for the radiation burns. They are worried about two spots opening up. I have been doing twice daily aquphor as recommended and now using domeboro which is an astringent to the ones on the crease of my neck. This is the one that feels most like a bad sunburn and is starting to open a little. But they say overall my skin looks like. Trying to feel more sun kissed than radiation burned. It’s all attitude right? The NP said some people go through withdrawal after not coming to the hospital when they have been there daily for months. I don’t think withdrawal is the word for me. I’ll have no problem filling the time. Just can’t wait for my energy to return. That’s what I miss the most.
Going to get my vaccine on Saturday in preparation for returning to work. This will help with my concerns over getting it from someone in my house. Nora got hers. Hopefully John will be eligible in one of the first waves. Will be glad to get two doses under way. People say some are feeling lousy with headaches. I figure why not feel lousy while I still feel lousy. That way I still have a barrage of medications to take for any symptoms that may arise. I even have Narcan here. Go figure. I’m barely even taking anything for pain yet the IV people leave me Narcan. Plus I can give myself the IV fluids I need. Took a liter last night and it definitely helps.
Now with the “face the sun” mantra. My biggest vacation fan patrick had decided that Hawaii needs to redeem itself. After last January’s rainy trip ( now I don’t mean afternoon tropical rain- we are talking all day drizzle) one sunset one rainbow. Barely see the mountains through the clouds and saved a fortune on sunblock.
We are looking at an April vacation trip perhaps. I am so easily swayed at this point. And thoughts of finishing the states by going to Oklahoma texas and Louisiana are far from my mind with the state of the nation right now. Hawaii might be a safe choice like alaska was in august. Especially vaccinated. So stay tuned to our 50x50 blog to see who wins out.
John and I have our 25th anniversary and are talking about New Orleans with dana and John. So maybe later in the year when the risks are lower and Hawaii for April. Nora won’t be able to come but I can slip her a Eurorail Pass for her Europe trip she is planning with a friend. This would be a relaxing vacation and she has traveled to more places than any of the kids. So I think she will be fine with that. So hard to find a time when everyone is free besides January and the heat of the summer. Not to mention getting time off work is always tough and we really need to plan something. So maybe Hawaii it is. Airfare is pretty cheap right now. 500/person and say in Kauai at the same place as last time. We know the area and had washer dryer which was great. And a short walk to the beach. Lots of turtle viewing which is my favorite. Stay tuned.
1/8/21
Ok- so we will find out here who is paying attention
Today marks one week until I am finished. Five more proton radiation’s left. If this is what they said the worst would be it can be done. Other than tired and food takes crappy I feel pretty good. Want to share a funny story. This is a mother of the year moment. Don’t judge me for my choices. Remember - I have a cancer card to play!
So every other week I have the most amazing housekeepers who come clean the newman frat house. They make it so the state doesn’t take the kids away.
While they are there, patrick is home on zoom school and decides to come with me to radiation to get out of the way. Before Christmas, he was on a call with Mr Carbones class and Mr Carbone asked him where he was going. Patrick told him his mother had an appointment and because we were in a parking lot he asked if it was a drug deal- the irony of this was that I had just stopped at a friends house near MGH to pick up some medical marijuana. The Irony of him saying it made me laugh.
Well today, patrick came again with me. At some point Mr Carbone who was running a class on how to let your parents know you care about them. I have a thumbs up on camera which mortified Patrick. He then asked asked him about a certain Greek scholar. Patrick wasn’t sure and I repeated the question only calling the scholar Syphilis. Patrick was mortified. Apparently I really am mother of the year!
1/13/21
Last day of chemo today. (Had the amazing Kate all day) Turns out my blood is low and they need to give me two units of blood. Plus chemo. Plus potassium and magnesium. Having trouble getting food in probably doesn’t help much. The blood should be a good pick me up for energy though. That and the steroids.
Steroids + chemo + pain med+ blood + covid vaccine = Wonder Woman right? I’ll feel no pain, have no cancer and get no covid. This is me today:
I see the light at the end of this horrible tunnel. Two more treatments to go. So blessed to have an amazing team including healthcare, family, and friends pull me through it all and the end is near! Advice to anyone having to go through this. Just forge through. It’s not fun but it’s not forever and the side effects are worth your life and your family. There are too many adventures to be had to let cancer stop you.
1/14
One day left. Can’t be closer. Today we had a disney playlist playing during chemo. Lots of emotions. They played the song from Tarzan that nora sang to the twins when they were in the NICU. Then of course the Lava song comes on. This only helps Patrick’s argument to get to Hawaii. If you don’t know the lava song, it’s from a short disney animation that they played before the start of a Pixar movie. It’s amazing. The song can be found here.
https://youtu.be/uh4dTLJ9q9o
It’s about two volcanos and basically “I will lava you” and of course it’s Hawaiian.
I’ll need to make my final hoodie for tomorrow’s bell ringing. Maybe after a nap and some food.
I continue to manically buy food. Still can’t find anything to eat. Bread is terrible. Sweets aren’t great although I did have a piece of cheesecake I got down the other day. Soup is good as long as no chicken. But ramen didn’t work. Milk is lousy. I hate shakes consistency. I’m such a brat when it comes to food anyway but this feeling like everything takes like baking soda is pretty tough and add the dryness (no saliva) plus the hand foot mouth like sores so that salty kinda hurts. Doesn’t make it easy. They say another three weeks of this and the taste and saliva are the last to return. Not being able to eat definitely messes with my energy level. I can hydrate with IV fluids as much as I need but I have to get the protein in. I bought some one ounce protein shots I’ve been taking like medicine. Just to get it down. And loading up on vitamins. But nothing works like a good old fashioned meal. Going to try chop suey for lunch. Ran to doms and piantedosi for bread and meats. Hoping it’s soft enough to get down with a ginger ale. Will give it a try.
Then nap
Then shirt
Then going to watch the series “your honor”. It’s good so far.
1/15/21
Closing the door on treatments. What an amazing day today is. I turn on “here comes the sun” and the tears roll down. There is no way I could have made it through this without the amazing support of John and the kids as well as my whole family and all of my friends and coworkers rooting me on. Helping with rides, sending gift cards and flowers and presents and love and prayers. The support has been amazing. I have also had a brilliant team of not just doctors but nurses and radiation staff and the support staff who make you confident that you are in the best place and getting the Cadillac of all treatments. How lucky to be in Boston with an amazing team.
I rang the bell three times. The tears stream down my face. There have not been many tears along the way because I choose to Forge through and often find myself saying “no nonsense miah. You’ve got this and it’s what you need to do”. When given a choice to hold chemo this week I told them I was here for the best treatment and I don’t ever want to regret taking a short cut. Trying to maintain a positive attitude definitely helps the forging through. I also feel my dads presence pushing me a long. Just as he went to dialysis three times a week and hated every minute but I’m sure made the best out of every minute he could by talking to the staff and patients and distracting himself from the pain and aggravation. I find myself doing the same.
I am happy to close the door to all of this now. My fight has been a good one. I finished the entire treatment. I won’t be scanned until April but if all is well in April they think 95% cure rate.
Thank you so much for your love and support.
In closing the radiation page I will give you some pictures of today. Know if you are reading this, I love you and thank you for everything!
As a final surprise some of my friends drove by for a parade. So happy to see them all and get flowers signs candy bread balloons bubbles and a huge socially distanced friend blast. It was so sweet and kind of them all to celebrate me.
Ab
Lots of really yummy vegetarian Thai and Japanese and Chinese soups out there.
ReplyDeleteGood idea. I’ll have to try that
ReplyDelete