4th of July

 Happy 4th of July to all!  

We are having a low key weekend currently as Tom needs to pretty much be indoors during his chemo treatment--so we couldn't have been out until around 2p this afternoon.  The chemo bulb is a bit weird, it can't get too hot or too cold, or it could affect how quickly the medication infuses.  Those of you who know me also know--heat is not my friend, so I don't mind hanging out in the AC 😊  The dogs always enjoy the extra home time and insist on sitting directly on someone or directly next to someone. 

Scarlett celebrated yesterday with some friends while V hung out with us, ran some errands, and watched movies.  We do have some plans with friends on tomorrow (Sunday) so we are just delaying the celebration a little bit! 

Chemo #4 is done (which means 1/3 treatment over!).  Tom's not quite as tired this week and feels a tiny bit better than after #3, however the cold sensitivity in his fingers continues to increase.  Unfortunately, that's to be expected as the effect is cumulative and at some point may require the medication dosage to be decreased as peripheral neuropathy (numbness and tingling) in his fingers could become permanent.  Some people also have that issue in their toes/feet--but we haven't had that yet.  However at this point since it's resolving within a day or so of his chemo being done, we're not ready for that change.  Picture below was from chemo this week and includes his gloves, portable hand warmer that some friends gifted us, and the heated pillow.    

He was also down about 3lbs from the previous weigh in 2 weeks ago which means a total of 10lbs since our first visit to the oncologist in May.  Greta, the dietician, stopped by to see us and continues to encourage different foods to try, foods to limit, adjustments to medications, and new medications or supplements to try.  While not ideal, a feeding tube prior to surgery is still an option and will be a reality after surgery.  Tom's taste buds have changed a bit and some is also psychological--both of which Greta shared are super common.  Most things taste really salty to him, he's been experiencing dry mouth so some foods are hard to eat/chew, and meat/chewy foods are really hard to manage.  So we've been trying lots of soft/mushy type foods or smoothies still (mashed potatoes, rice, oatmeal, puddings, yogurt, pastas, etc)  With most foods all tasting the same or "different" than expected, he doesn't see the point of eating and then worrying if something will make you sick.  Lots of trial and error to figure out what works best for him to get his calories in without feeling awful all day.

We did also see the genetics team last week and they drew extra blood on Thursday to send off for a variety of testing.  I believe she said there is like 90+ things they will be testing for genetics wise as we agreed to casting a "wide" net to see what risk factors Tom has...and potentially the girls.  We should have those results in 2-3 weeks.  She did warn us that we may not find anything, but we'd rather at least look for those high risk issues.

For anyone wanting to visit Tom, he's typically up for having visitors most days, however I'd suggest planning to limit your visit to a couple hours or less as he gets run down pretty easy.  Even pre-cancer diagnosis, naptime was typically an hour or 2 between 1-4p on non workdays 😂  You are also welcome to join him (or he and I) at chemo sometime if you'd like.  I'm always there in the morning to get Dr updates and talk through concerns, but depending on the day, may be working remotely in the chemo suite or step out for an hour or 2 for meetings.    

We are continuing to manage all the rest of the things between home, work, teenagers, and puppies.  We are anxiously awaiting our visit to Mayo and hoping for good test results and plans to move forward.  Admittedly we are already tired of this entire process and it seems like we've been doing this forever...and only a few days all at the same time.  We appreciate all the love and support sent our way.  If you message us (mainly me) and we don't respond I promise we do see them all, but often get distracted or just respond mentally to them!