State of Miah’s Mind- an adventure with cancer

 The 2021 quest to see as many academy award possibilities is going to be my next goal to push me through the next few weeks.   Only so many episodes of little house on the prairie can be watched before you start to go a little crazy.  Although I learned that the Up network has a mission of being uplifting.  This is where Little House and now watching Gilmore Girls with Kate started.   It’s definitely better to watch these shows than the rabbit holes I fall into.   Today’s included the movie Clouds.  On disney plus.  A real tear jerker.  Not sure you should be allowed to watch movies about teens with terminal cancer  while your head is bald from chemo but sometimes you can’t avoid it.  I’ve already seen a few about  moms and cancer but this was deeper. Especially where  Nora had sung the song Clouds in her 8th grade talent show   I do recommend however. It had a very positive theme about how life is short so make it sweet.  Don’t wait until you are dying to start living.   On this part

 10/24. Saturday  Today is the first day I felt more normal.  Finally broke down and started drinking coke which seems to settle me and go down easier than anything else. It’s been five years of not drinking soda. So I am disappointed but at this point I need to do something to keep the system stable.  Went for a walk with John and the kids   Made it around the block   No way I could have done the hill but did feel good after trying   Maura stopped by for a few  my first company this week and it was so nice for the visit   Starting to feel more normal and today is definitely an improvement over The last week so happily I am heading in the right direction   The tachycardia has subsided and my blood pressure looks good so I’ll keep forging forward and look forward to finalizing the plan    Wednesday 10/28 Feeling pretty darn good I must say  back to work and have been so busy that it makes the time go by.  Had more IV fluids on Monday and they sent lab work and my platelets are over 100

 Feeling pretty good today. Explicating to be wiped for the next few days. Sleeping well and still have a bit of an appetite which will get me through today but expect tomorrow will be less so.  Drinking better than last time so far.  Still grateful my kidneys looked good going into this.   They will be here to give me more fluids on Tuesday and stop my pump.  The 5FU is flowing slowly over the next two days.  (Four days total) Managed to go out with Patrick and John this morning for his flight lessons.  He landed without assist 7 times and his instructor thinks he is doing a great job.  He said most students aren’t ready for solos until 30 hours but he is at 13 and ready already.  But he isn’t legally allowed to solo until he turns 16.  It will be quite a birthday. To learn to drive and fly solo on the same day.  He said once he can solo then we can go up with him and his instructor.  I’m so impressed.   Monday Got up early to get kate to school.  So Proud of her. She really enjoys sc

 Friday Back on campus at MGH for my Chemo round 2.  Starts with accessing the port and drawing blood work. Then an appointment with the NP for the orders followed by a trip to the 8th floor to have the infusions, hydration and potassium and magnesium.  Hoping the kidneys look better today.   Wearing my new socks since there was no cool hair for the day now that I’m down to stubble    Took my steroids last night and this morning. Expecting to be up all night again!  They make your brain go crazy.  Kids are asking for new masks so maybe I’ll be making masks tonight.  Patrick also needs a mask and sax cover for band to prevent the spread of infection. They got permission for indoor band so I am happy for them.  Not sure how they would do it out in the cold.   So the perort is good  kidneys were perfect  Efgr back in the 100s  tolerated  high dose TCF chemo fine and my friend the FU pump is back for four days so beware  that means no shower for me for four days.  Colored, watched daytime

 Hair loss Right on time- two weeks. The hair started falling out. First in small amounts. Then in clumps. More than half gone and sick of shedding we made a decision to do a shave.   Advice online says to shave down to a 2 (1/4’inch) and then use a lint roller to grab the hairs.  I don’t mind the hair but do startle myself every time I walk by a mirror- so much better than shedding    Wore a blue/purple wig for my Zoom meeting   There was a request for green   So maybe I’ll find a good one luckily with halloween there are lots of cheap options   I can’t imagine wearing one evehry day   Irony was that I got two hats as gifts yesterday from two cancer survivors   The timing was perfect   I’m not into wigs other than for fun so hoods and hats are the way to go   Feeling blessed to have so many great people in my lives   Had a nice dinner with friends Thursday and Sunday  and now gearing up for round 2 which starts Friday   Trying not to  think about it too much

  Sunday- week 3 While I am quite aware I need to start over on Friday, I have to say I am enjoying feeling well and have had a great appetite (there goes thinking I’ll be lighter after all of this :)    I am just keeping my eye on the light at the end of the tunnel Have seen some close friends and family this week and am amazed at how many people have reached out.    Happy to only need prayers from everyone that are definitely working.     I feel better than before chemo.    All of my symptoms are gone. No numbness, pain, congestion, sore throat, no loss of smell and my ears feel great.    This has to mean the chemo is working with help from the steroids.   Stocked up on the foods I did tolerate last time.  There is NOTHING I need but thank you all for you offers!  Main new thing is the research study I am enrolled in.    I have a weakness for the research assistants asking to be part of studies.    I am currently enrolled in four studies.    Two covid including one for at home testin

  I have to say one thing I have enjoyed lately has been sitting in the front porch  in the spring before everything came to a head I put Zinnia seeds in the ground  John watered them when we watered the grass. I remember my dad planting zinnias he liked the “cut and come again” idea.  I find they are so low maintenance and last the whole summer and really peak in the fall while everything else is changing.  This batch today reminds me of our family.  There are lots of us. Quite colorful. .  Messy and old over the place but so wonderful all at the same time.   My favorite addition to this are the sunflowerS that snuck in late. They fought for space, sun and water Also started by seed but managed to grow up through the mass of zinnias and be spectacular.  

My new obsession with Ear nose and throat had me at back to see Dr Battacharyya with Patrick since he is having nosebleeds from his acne meds.    He got the all clear and I wouldn’t be surprised if any other Newmans get checked out there too.    While in the medical area I made a quick call to Jess and we got a quick bite to eat at the Laughing Monk. It was chilly but did wonders for my head. Felt good to be doing something so normal.    While at Dr Bs office I was able to stop and thank the front desk staff with a big bag of candy.  I often think the administrative staff in offices don’t get enough credit for all they do to make sure these brilliant physicians are able to do what they do. As over the moon appreciative I am to Dr B for diagnosing me so quickly and setting up an amazing team, his administrative staff were the ones to get me my first appointment in 2 days with complaints of sinus pressure.  They also scheduled all of my cat scans, MRI, PET, Biopsies. Ginette, an office m

  Sunday How am I feeling?      Not too bad actually.     Ran to the grocery store this morning and found myself darting through the aisles to avoid a certain couple and excitedly made it out the door without seeing anyone else    I knew.     Opened the bomb pops on the way home which are my favorite thing this weekend.     No nausea or pain. Food aversions are strong and probably the worst symptom in have.    (And I have to say if the food aversions are the worst symptom this week then it’s going to be a great week!)  I watched Baby Driver.    What a great movie.    Having the ringing in my ears from the chemo really helped me relate to Baby and his challenges.    I would recommended everyone watch this movie.    It was action packed. I had no idea it was a heist film with a great theme.     Five stars.  Lastly, we took step 2 of the Chemo Hair.    Week three is rapidly approaching and my big thing is I don’t want to look at clumps of hair so short is probably better.     Kate has bee

  Saturday: feeling pretty emotional about this share which has been approved by declan.   After a Mom freak show/scream fest/meltdown over a mess Declan made he tried to apologize but couldn’t help but laugh.    “This reminds me of old times”     Like my freak out was reminiscent of the old crazy mother of a teenage boy he misses from his childhood.   This brought on discussion with a now 24 yr old man who has always been fascinated by space and time but truly effected by time.     Like each of us, he is heartbroken with the loss of my dad and I wish I could make the sadness go away but it takes time.     And he talks about how fast time just goes.     Most of the discussion needs to be between us and came from the heart but the piece that will probably make me well up for ever is the lesson he learned from my dad.    He said he thinks you truly find happiness in your children.    You got that right! 

  Enjoyed using the “chemo card”  some guy rings the bell  mask on his chin and ID backwards  I ask where he is from and he looks at his badge  still doesn’t show anything   Blank side facing out   Calls me “new-ah” Apparently from vivint  solar but nothing to show it “I’m on chemo and this is a really bad day  oh  and next time you are better off wearing your mask and showing your badge “  He left embarrassed a little...  Chemo is working Watched a quick Ted Ed explanation of chemo and I’m thinking more about the process and understanding why I’m so tired. My body has a lot of work to do.  https://youtu.be/RgWQCGX3MOk Complaints: My muscles ache. I’m a bit uncomfortably restless but have piled the Yogibo (bean bag) on top of the couch for extra support for the aches and pains.    It seems to help with a bit of pain med and some Zofran for the stomach. Overall nausea is not the worst. It might be lack of interest in food or drink or this massive fatigue.  Can’t wait to climb out of thi