State of Miah’s Mind- an adventure with cancer

  Happy to turn this baby in  So nice to see people who donate to the cancer ward.  They restocked the hats a woman from Canada sent down.  Beautiful view from my chair.   Day 5.     Cycle 1. Last day of chemo   How do I feel today?   I have to say it’s not bad bad as I expected.    There has been some fatigue and a bit of nausea but I am keeping everything down and making my fluid goals.     Of course I say that before the afternoon shows it’s eyes and I am a wet noodle.    Accepted a ride in to MGH and Declan brought me hone.    Needed some IV fluids as planned but luckily got to leave the pump at MGH.    ROUND 1- DONE!  I expect a few tired days ahead then I can start building up for the next dose.    Will take a medication to increase white blood cells to help me fight germs and an antibiotic to prevent infection but otherwise expect time for the cells to die and get some of this cancer out of my body.   I have some mild discomfort in my jaw but i think it’s because the numbness is

  Day 4 Almost done with the pump. One last night.  Can’t wait to give this baby back!  Got a lovely thank you from Kate.  She wrote before we knew about any of this diagnosis.  It definitely makes me motivated to push through harder!    Apparently Elms college has a new Mascot from a neighbor who was cleaning out.  Koda- nora has a bit of attachments to Dino’s and now has this monster!  Thank God there is a dorm room for it until May!  Chemo is definitely working. Looking forward to giving back the pump tomorrow.  Managed to get some errands done and do some driving otherwise took it easy today.   What worked today? Push pops from Whole Foods,Lemonade slush from McDonald’s, trying to snack through the nausea and moving around.   Watched the entire six episodes of Belgravia.    Maureen recommended and it left me wanting to continue. Hope there is another season.

  Day 3 So the nausea hit and so did the BO.    Three days without a shower makes it a bit difficult to tolerate myself!    Sponge bath and some cream helps!   Overnight went with the tums, zofran and compazine.    Got more sleep than the night before in short 2 hour bursts but much less writing/spiraling overnight.   Might keep up with the meds over the day today.    I expect it to be tough for a couple of days but I do feel well enough for Kate’s softball game. John says I can be socially distant and watch from the car.  Covid rates are climbing. This means so will be my isolation in the next few weeks. To be honest. This is worse than nausea. Nothing I like less than an excuse to leave the house.    But I need to be safe.  On a positive note. Felt up to hitting Kate’s softball game. Nice to be outside with the kids. Nora came home to spend time with us too!  Not too bad. Hanging in there. 

  FU bag is running steady and Chemo Brain or probably just chemo anxiety has made me a dope. Today I took the Leverett Connector and drove right past MGH.     Every other time it has taken me through government center.     Then I missed the first opportunity to turn around.     Maybe I just don’t want to sit for IV or maybe it’s the steroids. Oh. And did I mention all my cards fell out of my phone last night and I didn’t remember to put them back.  So of course I came to the hospital without money to pay for parking. Thank god for Jess G. She lives practically next door and spotted me some cash.  The place is like Fort Knox and they wouldn’t even let her say hi. But I understand.  Steroids:    They have certainly made me a bit nuts.     I slept in short stints and got up and texted with nora at 130 and was on the computer designing shirts at 4.     Napped for a half hour then started texting everyone Sound 730 and made what may be a mistake by publishing on Instagram.   I anticipate t

 Trying to set up a playlist of songs to motivate me on the ride to my treatments. Feel free to leave suggestions in the comments below So far I have: Here comes the sun- Beatles  Sitting on the dock of the bay  Memories: maroon 5 I will survive Three little birds :b Marley aka every little thing Peaceful easy feeling  Eagles  Against the wind  Bob Seger  take it easy.  The eagles 

 From Kate after my biopsy:   “hey mom, how was your autopsy?” From Patrick after four hours of bleaching and rainbow ing my hair: “Mom, won’t it be funny if you don’t even lose it” Miah- before getting interventional radiology for port placement  “Why is it that we spend our whole lives avoiding toxins and radiation so you don’t get cancer then you get cancer and all they do is give you radiation and toxins? “ In closing Face the sun   Let the shadows  fall behind you 

  Infusion day 1 Designed the shirt last night  Declan says I am a force   Not thinking it’s always a compliment but I’ll take it anyway   So we decide the first shirt is the Force   I am going to have to make the chemo collection shirts for when I need to go to MGH as if the hair doesn’t make enough of a statement  Gina the nurse did not even recognize me   Lucky to have declan drive me in. Got some music together. Charged the iPad. Got the charger and headphones ready.    But of course I left that all at home. Lesson to self. Pack the bag the night before.   Getting into the building. I strut in wearing my yoda:The Force is with me shirt with dads flannel over it for luck.    Acting like I come here all the time I tell the greeter I know where I’m going and take the new mask.    Then... proceed to try and find the location in my calendar and in gateway.    Can’t find it. F it. I think it’s the fourth floor.    So I get off there.    Not there. Maybe 5. Nope. 6?    Nope. Then I finall

 I’m extroverted that’s for sure and don’t have a filter.  The sharing of the news comes easy but the rath of sharing is difficult. I do not want gifts, attention or sympathy but friendship and funny stories, a bit of gossip and feeling normal is what I need” The first week was like reliving dads wake. People with tears and “I’m so sorry”  I know it’s said with such caring.  I want people to know so they may be more patient with me. Not sad for me.  I am reminded of how many people I call friend and who do the same for me. I am blessed that I have an amazing family, amazing friends a great husband and the best kids in the world. They are the reason there is no sorry but yet this is a challenge and I am Going to find my way through it.  It’s easier in text than to relive the story so I did share with many people through text. It might be the wrong way but to relive the story over and over makes it harder. And more real.  The letter I sent to the fetal team at workWas hard to write but t

 Telling the kids and John is the hardest part.   Trying to normalize and hold on to the good prognosis and lightening up the cancer word.   Joy and Pail stopped by with a gorgeous cobalt blue or “Nana Conway blue” coach bag for me to use going to chemo.  It had a C hanging from the zipper line.  I said “c for cancer, crappy chemo” paul replied no. C for cure.    It reminded me of how Nana used to strut to and from church. Her daily pilgrimage up banks street to St Paul’s church.  Nothing got in her way.  I am going to strut right through this and now find myself saying “no nonsense miah”   When Kate asked about my hair my response was “that’s the best part.”  We will go out with a bang.  And I am even looking forward to chemo curl   From the time I was little i would sleep in curlers and permed my hair from when I was 12 to 23 (til pregnancy)   For five hours she labored over my head.  With the help from Liz we managed to get it all done and I have to say it looks and feels pretty goo

  irony of cancer: you spend your whole life staying away from radiation and toxic chemicals so you don’t get cancer.       Once diagnosed with cancer you get more radiation than recommended including CT, PET and interventional radiology and get loaded up with toxic chemicals The experience at MGH west couldn’t have been better.   Greeted by a wonderful group of women at MGH West interventional radiology. Jane, Jill, BRenda and Kate all made me feel welcome. The receptionist- I didn’t catch her name gave such a nice greeting and kept me distracted  Lying on the table the flood gates hit. The anxiety was high and the fear and reality of what’s ahead. I asked for a towel to cover my eyes from The lights.  The sensations were weird Burning from inserting the Novocaine? The sound of fishing the line deeper into the vein through my neck and the pressure of them sliding the port in.  Double lumen power port.  It was over in twenty minutes all under local. Drove myself there and back.  I was

  9/4 2020 has been quite the year. Beginning with a trip to Hawaii that gave us only one beach day to skin cancer surgery, to Covid quarantine to losing my dad in a way that left me with PTSD, I now approach another 2020 hurdle.   I would say the symptoms began in March with the daily masking for covid.    I found myself taking advil cold and sinus daily to survive the constant nasal congestion and need to clear my throat. It advanced to difficulty blowing my nose and clearing my ears.     By July I was using hot packs. Treated for sinus infections twice, the face pain got more severe.    Upon return from our post Pops Loss pilgrimage to alaska I found myself making an appointment at Mass Eye and Ear with Dr Battacharyya.    I had conversations with a friend who told me how much better his sinuses were after sinus surgery so I went expecting an easy fix.     Little did I know.   My symptoms to this point are nasal pressure.    Ear and right jaw pain, congestion that is unable to be cl